Viruses in the News
I saw very interesting report a couple of days ago – about a murine (mouse) virus that had been implicated in some types of prostate cancer. Based on just released research findings it seems this virus may also be the cause of chronic fatigue syndrome (sometimes known as ME or myalgic encephalomyelitis, or nicknamed “yuppie flu”). A surprisingly large number of people may have been infected with this virus without even knowing about it. Here are some quotes from the WebMD article as well as link to the full article.
Retrovirus Linked to Chronic Fatigue Syndrome
XMRV Seen in 2/3 of CFS Patients; 10 Million in U.S. May Carry Virus
By Daniel J. DeNoon
Oct. 8, 2009 – Some 10 million Americans may carry a recently discovered retrovirus now linked to chronic fatigue syndrome.
The virus, xenotropic murine leukemia virus-related virus or XMRV, was detected in 67% of 101 patients with chronic fatigue syndromeby Vincent C. Lombardi, PhD, of the Whittemore Peterson Institute in Reno, Nev., and colleagues.
The researchers also found the virus in nearly 4% of healthy comparison subjects — suggesting that millions of Americans may carry the mysterious virus, which was first detected in prostate cancers.
“The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause and effect is established, there would be a new opportunity for prevention and treatment of these diseases,”said Robert H. Silverman, PhD, of Cleveland Clinic’s Lerner Research Institute, in a statement emailed to WebMD.
Where did the virus come from? The virus is closely related to a retrovirus that’s become part of the mouse genome. Oddly, XMRV cannot infect mouse cells — but can easily infect human cells. It’s unlikely that so many humans have caught XMRV from mice. It’s more likely that the virus is spread from human to human, but how that happens remains to be seen.
“If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United States and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown,” they write. What is known is that viruses closely related to XMRV do cause many different diseases — including cancer — in other warm-blooded animals.
How Is This Relevant To CLL Patients?
Let me be the first to admit most of my comments below are speculative in nature. But I am also inclined to think there may be more here than meets the eye for CLL patients. Read on, you can draw your own conclusions. This is interesting stuff. There is no way of predicting the directions of future research, but I for one would be delighted if it turns out there is a link between CLL and a viral infection of some sort. Why, you ask. Well, if we know what is causing CLL, we will be in a better position to treat it, even prevent it in the first place.
Two striking examples come to mind, where improved knowledge of the viral drivers lead to better treatments. HIV / AIDS diagnosis was an immediate death sentence back in the early stages of the AIDS epidemic. Not so now. AIDS patients can live long and reasonably healthy lives because of therapy using powerful anti-retroviral drugs combinations (“cocktails”) that can control the HIV virus and thereby prolong lives, improve quality of life for patients.
I am sure you have heard of the human pappilomavirus (HPV). There are many different kinds of pappilomaviruses. Some do nothing more than cause unsightly warts. Others cause infection of the mucous membranes, a few of these can progress all the way to full fledged cervical and vaginal cancer. Discovery of the viral origins of some forms of cervical and vaginal cancer was a breakthrough. Knowing the culprit(s), it is easier to find ways of fighting it. For starters, we have learned that the virus is sexually transmitted and therefore safe-sex practices are of potential value in preventing infection. But even more important, it is possible to develop vaccinations against viral infections. We are learning how to protect young girls against cervical and vaginal cancer by means of vaccinations against HPV. Who knows, in a couple of generations cervival and vaginal cancer deaths caused by HPV may be a thing of the past.
Won’t it be wonderful if someday we learn that there is a specific viral driver for CLL, or even there is a virus that makes existing CLL more aggressive? Knowing the name and face of the enemy is half the battle. If there is a viral driver for CLL, we can hope to develop anti-viral drugs with which to control it. Down the road we can hope to develop vaccines to prevent it. For all of us in the patient community with children and grandchildren, knowing the familial nature of this cancer and the increased risk of our kids getting CLL, won’t it be wonderful if we are working towards a vaccine that will reduce or eliminate their risk?
Fatigue – a classic “B-Symptom”
Let me line up a few interesting facts that may (or may not) be connected.
- Deep seated fatigue is often experienced by CLL patients. It is one of the classic “B-symptoms”. As you should know by now, most experts agree initiation of therapy for CLL is not driven by blood counts but by start of B-symptoms. These symptoms are seen as an indication the underlying CLL has reached a stage where it needs to be treated.
- I used to think the fatigue in CLL was due to anemia. As CLL advances, other blood counts take a hit, including red blood cell counts. With fewer red blood cells and not enough hemoglobin, precious oxygen supply to all the cell of the body gets reduced – a classic pattern in chronic anemia that causes lack of energy and fatigue in otherwise healthy patients.
- However, over the years I have heard from dozens of CLL patients whose quality of life took a big hit with mind numbing fatigue – and their red blood cell counts, hemoglobin, hematocrit etc were still pretty much OK! This is anecdotal information, the only kind I have access to. But I am willing to bet that there is significantly less than 100% connection between low red blood cell parameters and B-symptom fatigue. What gives? What is causing the fatigue if it is not just garden variety anemia? Write and let us know if you fall into this category – fatigue that cannot be explained by anemia alone.
- CLL patients have poor immune defences against viral infections. We know our guys are more prone to catch any new viral infection going around in the general public. We also know that dormant viruses (such as cytomegalovirus, Epstein-Barr virus and Herpes) most of us have in our bodies can use the window of opportunity provided by immune suppression to flare into full fledged infection.
- The article above suggests some 10 million Americans carry the XMRV virus, and that it is most likely spread by human to human contact routes. The new research suggests there is good reason to believe it may be the cause of chronic fatigue syndrome in majority of patients afflicted with this disorder.
Interesting Speculation
Please be aware this is not something that has been shown in any formal study. I am intrigued by these possibilities and I am presenting my speculations here for your comments and discussion.
- What are the chances that at least in a percentage of cases B-symptom fatigue in CLL patients is caused XMRV virus infection, either recently acquired or a trace residue of an old infection the virus reactivated? If this is the case, can it be treated by appropriate anti-viral therapy? In other words, are we assuming B-symptom fatigue is an automatic signal of CLL getting aggressive, when it could be nothing more than a viral infection?
- We know that even healthy people have slight tenderness and swelling of lymph nodes soon after they pick up an infection of some sort – part of the normal process of fighting disease as the body goes into high alert and makes many more of the white blood cells needed to fight the viral hordes. But in CLL patients the overwhelming percentage of white blood cells are cancerous CLL cells. What are the chances XMRV infection (or reactivation of trace levels of the virus from prior infection) is directly or indirectly implicated in doubling time of CLL counts getting shorter, lymph nodes becoming swollen and tender (more infamous B-symptoms)?
- There is often a feed-back loop between viruses and the infections they cause, a sort of snowball effect. For example, infection of immune system T-cells with the HIV virus causes the victim to become even less capable of fighting viral invaders, which in turn makes it easier for the HIV virus to infect more T-cells and so on, in an accelerating spiral. Are we seeing a similar snowball effect, XMRV getting a toe-hold in an immune compromised CLL patient, then the viral infection acting as a driver for making the CLL more aggressive?
Oncoviruses
Cancer causing viruses are not new on the scene. Oncovirusushave been identified and catalogued for sometime now. Close to home, several forms of B-cell cancers such as Burkitt’s lymphoma (a type of NHL) as well as Hodgkin’s disease are known to be linked to Epstein-Barr virus (see the table below).
EBV is particularly interesting to me. As we pointed out in an earlier article (“The Enemy Within“) pathology of Epstein-Barr virus seems to be of relavance to CLL. It is estimated that the vast majority of human beings have been infected with the EBV virus at some time in our lives and as a consequence most of us carry trace elements of this virus in our bodies for the rest of our lives. Recent work at M. D. Anderson showed intriguing connections between prior history of clinical mononucleosis and more aggressive CLL, possibly increasing risk of dangerous Richter’s syndrome.
Let me draw the distinction between having been exposed to EBV at some point in your life and therefore testing positive for it, versus full fledged, clinically diagnosed mononucleosis (“glandular fever” for our Brit members). There is a big difference between the two. We did a straw poll a while back. We asked how many of our members had been diagnosed with mononucleosis as kids. A surprisingly high percentage of CLL patients have had mono as teenagers, much higher percentage than the general population. Is this an interesting lead? Does prior history of massive EBV infection make people more likely to get CLL later in their lives?
An even more out-on-a-limb extrapolation of the data: a surprisingly large percentage of our members are of Ashkenazi Jewish background. Mononucleosis is also thought to be more pronounced in this ethnic group. Is there a link here that should be studied? If I were to win one of those mega million dollar lottery jackpots, this is the kind of research I would support with my ill gotten wealth. I suppose I should buy a lottery ticket first, before I start day-dreaming.
As always, I believe the winning strategy in any war is to know as much about the enemy as we can. If there is a viral driver that is at the root of CLL, either in initiating this frustrating cancer or making it more aggressive, surely this is an area of research that is of profound interest to our patients.
87 comments on "Cancer causing viruses"
I have had a tendency toward ‘canker sores” (ulcers inside my mouth and on my tongue) for several years, long before I was diagnosed with CLL about three years ago. In fact, I have had these since my late teens, but when I got into my 50’s, these canker sores seem to become more serious, and I experience fatigue along with the canker sore(s).
About ten years ago, I accidentally discovered that Alpha Lipoic Acid controlled my canker sores. By taking 50 mg per day, I essentially eliminated a problem that had plagued me for years. I still get canker sores but the alpha lipoic is still effective in minimizing them as a real issue.
The efficacy of alpha lipoic acid was very clear. What might be learned from this as to CLL?
very interesting –I had gladular fever at the age of 20 –pretty serious,also contacted the herpes virus at the age of 30-got CLL at the age of 50 took the FCR treatment 2 years after diaognosis–CLL returned after 6years of being “clear” now having to take another batch of chemo to get it under control with the possible SCT looming on the horizon.No choice as the CLL has returned more aggressively.Any body out there with a pathway to viral treatment or ideas ??
Chaya,
My experience with fatigue fits with with your anecdotal information. My RBC and Haemoglobin levels are now as good as they were back in February this year prior to my CLL diagnosis, but I definitely couldn’t do what I did back then. (I was working full time and cycling to work 14 miles/22km round trip.) I was diagnosed early March (RAI stage IV). In March/May I had CMV (over 8 weeks to get over that) and I’ve since had other infections that have taken me far longer to recover from than was previously the case. My quality of life and fatigue levels have improved since I’ve been avoiding close contact with people – in particular in my own home. (Does anyone else have ‘friends’ that drop in and after an hour or two casually mention that they’ve been ill but are over it now? Then a few days later you get sick?)
When I was really sick with CMV, I had trouble just walking through the house. My RBC and Haemaglobin were lower than now, but I feel my fatigue levels correlated better with my level of illness rather than my RBC/Haemaglobin levels. For me, probably the hardest part of adjusting to living with CLL has been learning to live within my much reduced energy budget. I can’t count the number of times I’ve had a good day, overdone it and been very flat for several days subsequently. The hardest part is not knowing when you are about to overdo it. Sometimes exhaustion hits suddenly without warning when I’m active. Mostly, I only know I’ve overdone it the next day. I’ll be interested to hear others’ experiences.
Thanks Chaya for providing this excellent resource for those of us with CLL and their family and friends. I’ve been trying EGCG since late March, building up to 1,200mg, but had to reduce the dosage as my liver health was affected and my platelet count dropped. ALT (Alanine Aminotransferase) skyrocketed from 26 to 92 and AST (Aspartate Aminotransferase) jumped from 24 to 44. They’ve dropped back since, but my platelets are still low.
Thanks again,
Neil
Dear fellow cll patients,
I am not sure if the cll topics website has mentioned this, but some doctors are giving small doses of Ritalin to their cll patients to help with the fatigue. (They are also giving low dose naltrexone for the same thing.) I have been taking 5mg of generic ritalin (methylphenidate) for a month and have noticed a big improvement in my afternoon energy slump. I take it about lunch time and now I am able to put in a decent afternoon’s work as well as have the energy to get out and take my walk or practice Qi Gung. (I am 60 years old and am slightly anemic, but otherwise currently not “symptomatic.”) I do not take it on the weekends as then it is possible for me to take a little nap, sleep in or otherwise take care of myself. Interestingly enough, I sleep better since I started taking it too.
B. Karas
I have actually been feeling better and more energetic since the end of my treatment in March of 2008. The only time I really felt fatigue was before we had decided to treat the CLL when I had AIHA in 2007…
Even though they have found no connection yet, I always thought that CLL was related to exposure to some chemicals, as benzene is a suspected cause for AML.
I spent years working with some pretty nasty stuff (MEK, methylene chloride, trichlorethylene and more recently the epoxies and solvents used in my building my plane) and didn’t always take the precautions I should have while working with them. I thought one of those may have been the trigger.
So, with that in mind, it is pretty well accepted that volatile chemicals might change the genetic structure, but I don’t understand how a virus can modify the genes to produce our all too familiar 13q, 11q 17p, etc…deletions?
BTW…Neil…I had been taking 650 mg of EGCG daily since May of 2008 (up from 350mg daily for the 3 years before that) and my platelets started a slow, steady crawl downward from a high of 230 in November of 2008 of to 122 two months ago.
So, as a test, I stopped taking green tea of any kind (either the capsules or brewed) the day after my blood test two months ago. The platelets in my blood test this week were back up above 140…the first rise of ANY size in almost a year! They started climbing again the first month after I quit the EGCG. So, it sure appears there is definitely a connection with platelet levels.
After my visit with my doctor next month, I’ll start the EGCG again and see what happens. Everything else in my blood test is “normal” as expected so far! But as we are discussing, that isn’t always a good indicator!
I am a fairly new CLL’r and am on w/w. My RBC and HGB are good but I do experience fatigue quite often. I recently had my checkup at MD Anderson and because of several recurring infections my dr. is sending me to an infectious disease specialist. Unfortunately I work as a police officer for a school district PD..I am around people/kids every day. I cannot escape it.
My platelets are great, wbc 18k.
But the fatigue and infections are wearing me down.
Thanks,
Mary
I had “momo” when I was 18 and had to take a semester off because of it. I was diagnosed with CLL in January of this year. My RBC are good but I am easily fatigued on a continual basis. I was diagnosed with Fibromyalgia about 7 years ago and the doctors all point to that for my fatigue. Everyone says it can’t be the CLL because my counts are so good.
Anyplace we can find a clear glossary on all the acronyms? I am a relatively new patient and find that the addition of CLL to my life is like a second full-time job. I want to understand what all those blood counts mean but sometimes am just too tired to take the time to read complex hematology. I know: health first but that is not always realistic when your job is central to your financial survival and your continuance of health insurance.
Also, I had a severe case of mono when I was 16 and polio at 9. When I was about 27, I was in Florida and developed full body large swollen glands, high fever, etc. I tested negative for mono and the doctors insisted I had some rare STD – so rare that medical reference books placed it as something contracted in sub-tropical locations. I returned to New England and my doctors said the diagnosis was nonsense, which fit with my history and pattern of disease. The swollen glands and fever just up and disappeared.
Neil’s comment is very interesting to me. “For me, probably the hardest part of adjusting to living with CLL has been learning to live within my much reduced energy budget. I can’t count the number of times I’ve had a good day, overdone it and been very flat for several days subsequently. The hardest part is not knowing when you are about to overdo it. Sometimes exhaustion hits suddenly without warning when I’m active. Mostly, I only know I’ve overdone it the next day.” I have been trying to explain this to family and the very few friends I have told but people want to create logic where I can find none and it adds to the frustration of living with this – and yes, it beats the alternative.
Of course, the other frustration is people who google CLL and explain to you that it is the good cancer and you’ll live 20 more years. Well meant but frustrating. I am sure you have all developed strategies for dealing with this but any advice would be welcome – perhaps as a separate thread if you prefer, Chaya.
Thanks.
Very interesting. When I first was diagnosed, I read some articles relating Epstein-Barr virus, a/k/a chronic fatigue syndrome, to CLL. This was written about (I think) in the early 80’s. Then the “studies” just dropped off. Could find nothing about it after that date. Thought it interesting, because I was diagnosed with “Epstein-Barr” (they called it that where I was then — Duke Univ.) in the latter part of the 80’s. Then diagnosed with CLL in 2004. I mentioned this, and the studies, to my gp and oncologist and they just dismissed it (of course), saying almost everyone has viruses like that during their lifetime. Why, YES, they do. Lightbulb, anyone?
Regards, janejs
Wow, looks like I hit a nerve with this post.
Harley: I worked in around refineries and petrochemical plants my whole professional life – never saw a chemical that I did not get my hands into. PC, on the other hand, had only to contend with paper cuts as work place hazard. He got aggressive CLL, and here I am still pounding away on my lap top. Go figure.
As for viruses and chromosomal lesions, that is precisely what makes RNA viruses so damn dangerous. XMRV is an RNA virus. When it gets into a cell it incorporates its RNA into the cell’s duplicating machinery, sometimes playing havoc with the precise DNA code. Oncoviruses cause cancer by writing over or corrupting the DNA coding for cancer suppression genes such as 17p. Let me know if you are interested and I can send you a couple of really interesting journal articles that describe how this happens. But I warn you, they are not easy reading.
Barbara: I do not know the implications of using Ritalin for chronic fatigue syndrome. I will look into it. But I cannot refrain from commenting on (LDN) low dose naltrexone. LDN therapy is bogus science, snake oil as far as I am concerned.
Jswift426: We are working on a list of acronyms. Hopefully we will be able to publish a link to it in the next little while.
Neil: Glad to hear you have stopped taking the EGCG after seeing its impact on your liver functions. I cannot stress too often the importance of being prudent in trying to help ourselves. Controlling CLL while killing your liver in the process does not sound like a good idea, right?
Chaya–
I also experienced unexplained fatigue well before I was diagnosed with CLL. In fact, I probably wouldn’t have been diagnosed for years if–at age 48–I hadn’t been repeatedly going to my PCP, trying to figure out why I was always so tired. He discovered a mild Hashimoto’s thyroiditis and started me on synthroid. Fast-forward two years: a couple of routine blood tests for thyroid levels turned up oddly high leukocyte counts, which no one noticed but my husband, who asked if I’d had viral infections before both of the last two tests… Since the answer was no, I went for further testing, which confirmed CLL(w/w stage). But the fatigue remains, despite the synthroid and normal-range hemoglobin/red blood counts.
Much to think about Chaya. My son had a severe case of mono including grossly enlarged spleen, lymph nodes, fevers and debilitating fatigue and off the chart blood work for several weeks when he was 23 years old, missing work for 3 months. I had EBV back in the 80’s and in 2007 wound up with colo-rectal cancer. Wondering if my son will be more prone to cll with one parent with 11q cll and the other with a history of EBV and colo rectal cancer??
Won’t it be cool if indeed some of the fatigue in CLL is due to viral infection with XMRV, a double dip of CLL Plus Chronic fatigue syndrome?
Since XMRV is implicated in one of the more aggressive varieties of prostate cancer, you can bet this virus will get a lot of attention. I am told the researchers are looking to develop reliable tests for detecting the virus, so that patients can be correctly diagnosed. Next step, a way of controling it or vaccinating against it. I guess we can piggyback on whatever breakthroughs happen on the prostate cancer front.
Dear Chaya,
When I first read the news releases on the possible connection of the XMRV virus to both “chronic fatigue syndrome” and “prostate cancer,” my mind started on the same path as yours. However, you are a few steps ahead of me. When I was first dx’d with CLL in Jan. 08 I asked my doctor about a connection to the mononucleosis that I had at age 18. He basically brushed it aside and said many people carry the Epstien-Barr virus and that there was no known connection. (I was concerned for my daughter as she is a carrier of EBV but no mono to date.) So, I did not think to connect that to all the rest of the information concerning the XMRV virus.
As stated earlier, I had a relatively mild case of mononucleosis at 18. It took several years before I felt that I had regained the energy I once had. In my late 40’s I ended up with an infection of the salavitory glands that only went away with lots of steroids. I started wondering then if there wasn’t a connection to leukemia but I was too knowledge poor to follow through with it. I was dx’d with CLL in 08 and have gone through FCR/FCR-Lite treatment and am currently following up with Rituxan maintenance. Many times I have told my doctor that while I no longer have the extreme fatigue I once had, I still don’t feel I am back to full speed. He is confused by that statement as most of my numbers are back in the normal range with the exception of my IGG….of which I have now started IVIG treatment for.
I sure hope someone follows up the possibility that XMRV is connected to CLL. It seems that there are valid reasons to follow through.
Thank you Chaya for all you do!
Blessings to you,
E. Kane
Thank you Chaya for putting this website together, keeping us current and keeping us talking.
I was diagnosed with CLL last week, and it sucks. (Pardon my bad language.) I’m 34 years old, single and before diagnosis felt like my life was still in its early phases, then I found this out and feel like I’ve been hit by a mack train.
I’m in the process of being staged and am praying that I’m stage zero. I do have iron deficiency anemia…..which is making me tired. I’m hoping this anemia is NOT caused by the CLL, but due to being a woman. I’ll find out next week. I did have mono when I was in college.
Approximately 5 months ago I had some sort of ‘flu’, I was thinking it was swine flu. Severe aches, pains, fevers, sore throat. My doctor put me on amoxicillin…..I don’t think that made any difference…..the ‘flu’ resolved on its own after about 10 days. Myself and my parents (all of whom are scientists) keeping wondering if that was some sort of virus that activated my CLL.
My mom also has CLL, so I think there MUST be a genetic component to this disease.
I keep wondering if cytochrome P450 has something to do with this disease.
Now that I have CLL I will do as much reading as possible to see if I can figure out a treatment.
Best of luck to all of you living with and around this disease.
Mary (Texgal911),
What is w/w?
Thanks
trim.odie
I also have been troubled with canker sores for the last few years. The last time I could feel swolen glands in my neck along with the sores in my mouth. In 2008 I was diagnosed with stage “0” CLL. WBC is going up slowly as well as lymphs. Six years ago I had stage “0” breast cancer with 6 weeks radiation treatment. Was diagnosed with Hashimoto’s thyroiditis 16 years ago, although the levels have improved and am taking a minimal amount of synthetic synthroid. Oncologist and internist don’t think my fatigue is due to the CLL. The viral theory seems very interesting to me.
doggeedoc,
W/W is “Watch and Wait.” Most of those that are dx’d (diagnosed) at stage 0 do not receive treatment immediately. It is felt that treatment at that time does not improve one’s chances at a long remission.
Chaya,
I am wondering….has there been any study done about the fatigue in CLL patient? From what I am reading here and at other forums, this seems to be a common complaint among CLL patients even if their “numbers” look good. Seems to me that would be a good starting point towards seeing if a virus such as the XMRV is the cause of the fatigue.
Interesting–I had a nasty case of mono in college, and diagnosed with CLL at 59. (I think I had it several years before that, though, because I kept coming up with “odd” blood results, which my oncologist agrees could well have come from CLL. Fortunately, I’m still asymptomatic.
make that one more hashimotos here. In 2000 I was stricken by a viral infection that no one could identify. The first suspect was shingles because it started out as an itchy back, then pain. Since there was no real rash, and the pain was bi lateral shingles was ‘ruled out’… then it was on to 5 MRI’s, all found nothing to explain the severe pain and awful fatique.. Six months later I finally was dragged to a hematologist who is not affiliated with any major hospital since he incorporates Chinese and Eastern medicine as well as our own types. He has formerly taught at Sloan Kettering and a friend had gone to him. He did manage to get her thru chemo for four bouts of breast cancer and was subsequenty able to support her thru her final blow of Uterine Sarcoma. Her six month death sentence was extended to a rather robust 2 years. She died on a pleasure trip to India. This doctor took my pulse, on top of my hand and said, ‘hmm, I smell a virus” I thought for sure I had walked into a scam. He quickly followed with ‘and I’ll prove it’… He did some odd blood tests that my GP had never even heard of and showed me that certain white cells only behave that way around viral infections, not bacterial, He told me that looking for viruses is like tracking polar bears in the snow. One sees the tracks, but not so much the bears. His grave concern then was that my NK cells, were almost not there. No one had ever looked at those before. (natural killer cells) I learned what that meant and began arguing that my elevated white count, swollen lymph nodes and fatique and chromic infections might be some form of cancer. The ‘virus’ receeded, and left huge purple indented spots on my back, tracking the dermatome, nerve path perfectly. tracks in the snow. Some form of Herpes, since Herpes tracks nerve paths? It took seven years to get someone to listen and then finally, CLL In the time between I had a salivary tumor, thyroid tumors, and several Squamous Cell Carcinomas as well a melanoma. None of those ditties suggested cll to anyone either. I have begun to wonder if CLL is the catchall cancer when they’re not sure what else it might be. I know that sounds heretical, but we know when they do FISH and FLOW, both of which are still relatively ‘new’ they are already looking for certain markers. I know some research is looking at others, but we’re still a long way off. There are more markers out there. Maybe viral research will show them a new direction and account for some of our quality of life issues that don’t quite make it to B symptoms. We all sure seem to have them. Most don’t want to jump into therapy before we need to, and our doctors don’t want us to, for good reasons, but I would sure love a shot of antiviral meds that would help us get thru to a place where they really know more.
Neil is so right. “budgeting energy” is a great phrase. And just as he says, one can’t really budget if one doesn’t know what the ‘bottom line’ is. I also had mono when I was 19, bad case with ‘subacute hepatitis’ and canker sore attacks that sent me to bed with fevers all thru my 30’s until they finally treated me with cortisone. Heaven only knows what that contributed. I have always included all of these episodes on any history, to no avail thus far. Maybe it’s time to do a real history study of CLL patients? There are quite a few similarities across the various stages just from these few comments. meanwhile, If anyone has a trick for budgeting energy, let us know. beth f
Thanks, Chaya, for this article. The virus connection would be a welcom explanation for my fatigue. I’ve been watch/wait for three years. My RBC and platelets have remained, for the most part, in the normal range. My lymphocytes have been on a steady moderate climb, especially in the last year and a half, and are now in the mid 40k’s. Fatigue has been a big issue for me the entire time. As a teacher I was exposed to every virus in the book and was catching each one. As a result, I’ve had to leave the classroom. Now that I’m ‘out of circulation’, I’ve been infection free but fatigue is still a big problem.
The spread of viral genetic material throughout any population often occurs by insidious means and both horizontal (person-to-person) and vertical (mother-to-child in utero or via breast milk) transmission must be considered.
When viruses are able to incorporate themselves into the genome (as can happen with DNA viruses) they become true Trojan horses.
I cannot emphasize enough how prudence in living and avoidance of all but absolutely necessary blood products (including FFP, IVIG) can be protective. Never share someone’s toothbrush or razor. Literally anything given parenterally (intravenously) can prove to be infectious. The adoption of the use of “universal precautions” by medical and dental practitioners will no doubt be of benefit over the long haul.
It will be a long time before the role(s) of viruses in human disease and human evolution are all understood.
11qRick,
Hello!
So are you saying….you think that blood transfusions, immunoglobulin therapy…….can lead to contraction of a virus……which can activate cll?
interesting.
thanks
Make that one more Hashimotos here. This is very interesting that three or four of us that have posted has this problem. It would be interesting to know how many patients with CLL has that as well. I also have Turners Syndrome and we are more prone to autoimmune diseases, so I thought maybe Turners had at least a small part to play in getting CLL. But if Hashimotos is a fairly common disease among CLL patients, there has to be a connection, I would think.
doggeedoc:
No, I do not think Rick meant to imply that getting blood transfusions or IVIG therapy would cause viral infections, which in turn would activate CLL. Nor do I think blood products should therefore be avoided at all costs. I would not go that far, that is like throwing the baby out with the bathwater.
Yes, there is risk of viral contamination in blood products, especially in third world countries. But blood banks in the developed nations have gotten a lot better in the last decade. In any case, we strongly advice CLL patients needing transfusions to get irradiated and leuko-reduced blood, which further reduces any potential risk.
As for IVIG, modern day immunoglobulin products are so heavily screened, so many different layers of selection steps in the manufacturing process, I think the risk of infection is small.
Would you get a blood transfusion if you did not need it? Obviously not. It is a question of balancing risks and rewards. If you need a transfusion, you should get one. I do not think Rick meant to discourage or scare patients that require red blood cell or packed platelet transfusions.
The problem with IVIG is not so much the risk of infection but the horrendous cost. It is always in short supply and insurance companies drag their heels about coverage. Once again, if you need it, use it.
In almost 13 years with this lovely disease I’ve had intermittent spells of fatigue of varying intensity. Common thread was that the episodes never lasted for more than a day or two, sometimes less. My reds and HGB were always up there.
Last year after being hospitalized for a nasty case of cellulitis in my lower right leg, I began to experience longer periods of fatigue at increasing intensity. My HGB was down to 10, then 8, so I assumed that was the cause.
In August I was given two bags of blood and started on B12 and thyroid medications. My energy has been up ever since even though the HGB is stuck at 10. I think assuming one’s fatigue is caused entirely by the CLL, as I did, is clearly wrong.
Don’t worry necessarily about “activating” CLL.
Any blood product (some more than others) has the potential of transmitting infectious disease even with the most rigorous screening of donors and handling of the material. When you need something, you need it. I am only advocating prudence and caution.
With regard to the risk factors Chaya presents in this article, I qualify as I three time winner, or loser. My father died of CLL, I had mono as a teenager which presented as swollen nodes in exactly the same manner my CLL presented 30 years later, and I am of Ashkenazi descent. My case of mono presented in such an atypical fashion that my doctor suspected lymphoma. When I had a node biopsy in early 2006 I was sure the result would indicate a viral infection, like my biopsy 30 years earlier. No such luck.
This is all anecdotal, but I’m a believer in the link between EBV and CLL.
I have been searching for a possible cause for my case of CLL being so aggressive in spite of Good Markers(mono allelic 13q del., Mutated IgVH using VH4-34, CD38-,). The possible viral connection is intriguing though my energy levels remained high until Treatment. I did experience a severe Fatigue episode in 1980 for several months which never returned.
The one odd symptom since CLL diagnosis (dx)related to viral issues, has been the severe flare of my right occipital node for three winters with classical viral symptoms that include: worst pain for three days then a four to 8 day tapering down of localized pain but leaving a much larger neuralgia pain to linger for up to two weeks. My other nodes never went up and down much but this one occipital node always shrank back after the attack (it never had external lesions). Ironically, my perennial herpes simplex, at the base of my nostril, disappeared for the tree years my CLL became active but returned after 2nd cycle of Rituxan/Fludarabine treatment(RFTX).
Knowing a cause for how subsets of patients react to CLL would possibly increase the efficacy of current treatments.
Viral input is only one area for the reason behind the wide differences in how we are affected by CLL. Epigenetic mapping, which could tie in with viruses, is a potentially huge as yet unknown area of causation as well as chronic antigen stimulation. All of this could be a Chicken or Egg debate for a long time I am afraid.
WWW
Neil is spot on
I can have a “good day”, or even a great day, but always, always, come down with a big bump. Rarely can I string 2 or 3 good days together, without subsequently feeling like a wreck. All I can say is that when it’s good, it’s very good.
I struggle to find the best balance, but still don’t know when I am overdoing it. I’m not aware of pushing myself, but the result is there the next day. Usually digestive issues seem to arise from that extra effort; it can take 3 days to get back on track.
Rick mentioned dental. Anyone else out there had bad infections after dental work since being diagnosed with CLL? Or seemingly more need for root canal/fillings etc? I finally had one CLL doctor say that ‘cller’s seem to have trouble in that area’. No comment as to causality, but yes it’s been seen. And he was not referring to the treatment associated oral lesions.
The guidelines for pre treatment with antibiotics for dental work were just lowered, but at least for me they’ve gone back up. My GP has now said he wants to pre medicate me after two really bad episodes.. even if the cause is not bacterial /opportunistic. Maybe a type of herpes since it seems to live in the mouth so nicely.
We have seen that some folks on certain treatments get horrid mouth ulcers. Have those been attributed to a virus or to lowered immunity and opportunistic infection?
If something is not a B symptom, but many are experiencing it, then maybe we need a list of C or D symptoms. What I see here and on other lists are viral type symptoms, achy, fatique, painful nodes, even the same ones that didn’t hurt yesterday, and even mouth sores and ‘issues’… and people being told those are not B symptoms. Yet, many of us seem to have them. Sure sounds like there’s more to this viral connection than was thought, thanks Chaya.
beth f
Wow, it feels good to know that there are others with the same crazy syptoms! I started young, I had tuberculosis when I was six, then mono when I was 18 and rheumetoid arthritis (autoimmune disease) when I was 27. My father died from a very aggressive prostate cancer (9 out of 10) as he liked to say. My blood counts are normal (except WBC) so I am still w/w; 5 years after diagnosis. My white blood count has been as high as 150,000 but has settled in at 120,000 for the past year. Does anybody else have an absolute lymphocyte number greater than 100? Is there something wrong with equation? Dr. Myint told me at the start of my CLL that the preponderance of white blood cells squeezes out the red blood cells and produces anemia. Not sure of that theory anymore. In summary I still have plenty of bouts of fatigue, but don’t know why exactly.
rgm444
I was diagnosed with CLL 1/05 and have been on w/w since – last weeks’ cbc showed a drop in plt 116 and hgb 13 not earth shaking but will do a recheck in 6 weeks – noticable drop in energy so your lastest topic really hit home, when I was a child (about 4 years old) I remember being bed ridden for a few weeks and the local doctor visted everyday (small town in the midwest)- years later I asked my mother what that was all about and she informed me that I had “glandular fever”.
The sharing floodgates have opened. Thanks to Chaya for enabling this.
Zardoz, My WBC is now at 170k and ALC is around 150k, but my RBC numbers are ok. I was dx in 2007 and am still watchful waiting or wait and worry or whatever the w/w means. I have no B symptoms that I’m aware of .. and one or two lattes from my latte machine keep me feeling fine, so I don’t think fatigue is an issue. As to “C” symptoms .. I react strangely to bug bites ..which is how I was diagnosed. (“Do I have Lymes?” “No, you have leukemia”). My onc / hema doc still calls me stage 0. My internist worries about the high counts. I’m fine with putting treatment off as long as possible, balancing all factors.
I know my body is a very complex community of bacteria, viruses, fungii and I hope they all continue to get along.
I’m being safe and avoiding crowds right now.
Thanks again to Chaya !!
There is a mysterious link between CLL and EBV that has never been solved. EBV can transform almost any normal B cell into a cell line that can be used for research. CLL cells can not be transformed by EBV and there is no verified “CLL cell line” although several claim to be.
I have postulated that CLL must be infected with some cousin of EBV, conferring resistance in a smallpox/cowpox fashion. I have worked in some of the best (and worst) CLL labs and have seen these transfections tried 100s of times.
I, too, like Nick’s comment “… learning to live within my much reduced energy budget.”
When I was diagnosed with CLL (13q) May 2008 my CBC was in the normal range excepting the lymphocytes (358). Even so, I had and still have fatigue before and after treatment.
Another interesting wrinkle, I have sarcoidosis (a cousin of TB, lupus, R. Arthritis) and my oncologist believes the sarcoid could have been latent in my system and a contributing factor to my CLL.
I was exposed to moldy, dirty air inside vacant buildings (part of my real-estate job) 10-15 years ago and also wonder if breathing in that dirty air could have been a contributing factor in the development of my CLL (and maybe the sarcoid).
I had four blood infusions during operations for blood tumors when I was a little girl so who knows what about that!
Cold sores – a few times.
Seems like some common themes popping up here.
Thank you, Chaya, for providing a service that is unique, in this world of drug salespeople and doctors (who, however well trained and thoughtful, seem always less informed about the complexities and nuances of CLL as it is for those of us who live with it).
I am Ashkenazi Jewish, with no CLL family history that I know of. As a child and teenager, I had countless ‘flus’ and a tendency to swollen lymph nodes with every allergy and illness. At 62, 5 years ago, I was diagnosed with CLL while in hospital for a ‘revision’ to a failed hip replacement. I continued working as a full time academic until retirement last year.
I was diagnosed in the UK and live in Canada — would appreciate any Canada-specific information others may have. I was told more than a year ago that I would need chemo within a couple of months, but I still feel well, and am still on w/w. I am trying to avoid treatment as long as possible – partly because of a history of allergies and intolerance to numerous drugs. I have no symptoms other than fatigue, have normal red cells, etc. but WBC is 159 and lymphocytes 150.
I’ve taken tons of EGCG supplements and drinking green tea, all along. I’d like to know more about possible liver damage. I tried an overnight green tea patch (from Japan, distributed in the US) but it woke me around 3am with the same ‘hyper’ feeling I get from drinking matcha.
I did find a great treatment for cellulitis, when it didn’t totally heal after a hospital stay and treatment. A friend recoomended Manuka honey ointment. It did the trick. I use it whenever I get a rash that doesn’t clear up. I tried Manuka oil and it didn’t work, but the (messy!) ointment does. I got rid of warts with lime juice, gentler and more effective than the nasty remedies.
MDAnderson also believes in the “virus” theory as an activation of CLL whether it is “ramping” up or just dx. This is something that is of interest when looking at mutational status. Tom uses the VH3.21 gene for his mutation—his is unmutated. Most patient’s with the VH3.21 usage are mutated, but show aggressive CLL. This one gene is showing that the exact same pattern is being used by this small group of CLLer’s. The odds are phenomenal that this would be so, yet it is at this point being researched to see if a virus–the exact same virus–is causing this gene usage.
jlou
I am unaware of having EBV – I have had thyroid cancer that resulted in a total thyroidectomy and have blamed my low energy on that for the last twenty years. In 2006 I contracted West Nile Virus and was really ill. One of the symptoms were swollen lymph glands at the base of my skull that were very painful. West Nile is a neurological virus and also affected the strength in my legs. I regained most strength after about a year – was dx with CLL in 2008 – tx W & W. At the time of dx I was directing a multi-ministry non-profit – a year later I go in once a week and do the bookkeeping and am wiped out for at least a day afterwards. Dec & Jan last winter I hit a really low energy time followed by several months of feeling nearly as good as I did previously. I was sick in June with a virus – the fever, etc. only lasted about 5 days, but I have been worthless ever since. Makes me wonder.
I also want to mention that I have had elevated lymphocytes on my blood work for at least 10 years – was always told that was because I had a sinus infection. I hadn’t kept all of the lab results, but using what I had graphed out to show a gradual climb in alc from 2001 – none of the numbers really high enough to raise a red flag, but never a reduction, always a little increase.
I was dx with CLL from blood work my osteopath ordered to check thyroid levels because of my low energy. Fatigue is a misnomer since it implies tiredness after working – I don’t need to do anything to feel the low energy.
Lillian
I really appreciate reading everyone’s comments. Thank you.
My mother has had CLL stage 0 for ten years. She’s never had any clinical signs of being ill. In fact, (knock on wood), she is one of the most healthy people I know…..she gets a 2-4 day mild cold maybe once every two years. (She says her extra WBC’s are fighting off all the common infections. I know that’s incorrect….but she really feels that way.)
My mom has no idea this website exists. I wonder if people like my mom, who are stage 0 and doing great, are less likely to discover sites like this versus those people with CLL who have clinical symptoms of disease and are looking for answers.
Just a thought.
Ashkenazi Jewish, mild mono when 16, SLL/CLL diagnosis at 44, 8 years ago.
Treatment with rituxan after 3 years watch & wait shrunk the lymph nodes and revived my energy for a while, but malabsorption/digestion issues triggered another Rituxan treatment after another 3 years, with far less dramatic results.
White blood counts normal until this past year, nodes have swollen
to new proportions, and digestive issues returning. Fatigue? usually.
-Julie
I had a period of extreme fatigue about a year ago. After a false diagnosis of rocky mountain spotted fever (rickettsia antibodies), It gradually diminished, but there was still fatigue. Endocrinologist diagnosed low available testosterone, and topical androgel has brought back reasonable energy levels.
62 y/o male with nhistory of exposure to pesticides, defolients, asbestos, solvents & daily contact with fuel oil for many years.
Recently accepted by NIH Cll natural history study. Dr Marty acknowldged the interest generated by CLL Topics for participation in the study. Thank You Chaya!
Dx’d over 4 years ago and I have been “tired” for 5 years or more. I think our median age may have a role too. RBC low end of normal.
Very, very fortunate to be in the study at NIH where I found out this summer I’m reclassified into MBL. Most interesting how my WBC dropped significantly from 18k to 11.6k in a matter of months as I stepped up the green tea and curcummin significantly, among other things.
Serious bout of mono as a freshman in college (1970).
Last two visits to the dentist for cleanings ended up with sore throats about 3 days later?(Bethcat?)
Rick / Chaya / anyone: what do you think about bacterial or fungal? In my recent perusals of anything possibly related to CLL I found a doctor (MD) online making the statement that “fungal infections not only can be extremely contagious, but they also go hand in hand with leukemia-every oncologist knows this”. Thoughts.
Jim
I have been troubled with canker sores on and off for over 30 years. I was diagnosed with cll 15 years ago I’m still at stage 0 and feel fine. My dad had cll stage 0 for 25 years. He died of prostate cancer at the age of 82.
Thank you for providing great info for us cll patients.
Monique
I also had a mild case of mono in HS like many other posters. I used to have cold sores frequently when younger. I almost never have them anymore, which makes me wonder if it is because my temperature is now almost never as high as 98 and the virus doesn’t become active.
My CLL was found in the GI Tract, which is fairly rare and sometimes linked to Richter’s. An enlarged spleen and recently, slowly growing lymph nodes in the neck along with the unexplained fatigue most everyone has mentioned are my only symptoms. My oncologist thinks the fatigue is most likely from depression induced by the dx, and will improve with time. I’m not sure I buy that explanation.
Thanks, Chaya. You really got a great discussion going here. I’ve thoroughly enjoyed everyone’s stories.
Everyone take care,
Jim
I was interested in the comment about mouth ulcers (canker sores). It was this and tiredness that led to the blood test that originally revealed my CLL diagnosis. Although I am still in the early stages with no other symptoms, the mouth ulcers and some tiredness persist. I have had a feeling for a while that the mouth ulcers are linked to some kind of dormant virus (like herpes) as I suffer from headaches and mild feverish symptoms for a couple of days before an outbreak, and the outbreaks are happening very frequently now.
Thank you for a great website and useful information.
Julia
Hello jandg,
Can you elaborate on your green tea and curcumin dosages?
How much are you taking? How long have you been taking it? Any side effects?
Thank you
Chaya,
I am very interested in the references to fatigue. Extreme fatigue and dizzyness on getting up from a sitting position or bending over. This is the reason I first went to physician, consequently diagnosed with early stage, w/w/, CLL. The physicians have to date given me no reason or treatment for the fatigue, and have not connected it to CLL because all my numabers are good and not in the range for aggressive CLL.
Gwynn
Ashkenazi Jewish? That’s me and 4 others, out of 15 or so, that my Professor looks after.
However, the proportion may be skewed by a relativly high number of Jews living in North West London.
Bob W:
Interestingly, I have Shingles even though I had the Shingles shot in January 08. On a positive note, the Shingles I have is much less severe than many people I know who have had them. Your comments on a connection between a virus and CLL is definitely appropriate. By the way, I have yet to be treated but am going for a consult to the Ohio State CLL center in a couple of weeks to see whether treatment is warranted or whether watch and wait is still the best approach.
WBL Judy ..am I reading your comment correctly? Is your absolute lymphocyte count 358? Or are you 358K (358,000), or ..? To this lay person, 358 seems very low for CLL.
And while I’m posting .. a story about my LDH, just in case it’s relevant for others. I get blood work done every three months, because of my high WBC. Suddenly, my LDH became out of range, double what it had been. My doc said, “Tumor activity has increased”. I did some sleuthing on the internet and saw that extreme activity increases LDH. Well, I had gotten into a pattern of getting blood work done on Monday, after strenuous kahiko (ancient) hula dancing on Sunday. My thought was the hula would be benefiting me (and proving I had some stamina). Wrong for LDH. As soon as I got my blood work done BEFORE hula, no problem .. back into LDH normal range. So, you gotta look at everything.
Aloha kakou
Lynn
Interesting patterns forming here.
Ive had numerous drugs treating my Crohns disease ie Infliximab, Methotrexate & have stayed on Azathioprine as a maintenace dose since 2002.
Crohns being an autoimmune disease & taking Aza opens you up to catching everything. Ive had recurrent bad ear infections since 2003, told ive got herpes during a flare up in 2007.
Herpes flared again recently just as i was diagnosed with CLL during a routine bloodtest checking my Azathioprine response to my liver.
Ive constantly got warts on my hands that the nurse attempts to freeze off & have had veruccas galore on both feet for years which i cannot shift.
But the biggest bugbear of all is the fatigue which i assume is due to the Crohn’s, i literally fall asleep any time of the day then have a few days when i feel better & try cram in all that needs sorting out.
This last 18 months the fatigue wont budge, i go to bed shattered & awake the same with so many aches in my body. My arms feel like theyve got lead weights attached & i often have to physically lift them up.
It sgood to associate this utter tiredness with the CLl &/or the Crohn’s as its driving me crazy.
Dave
Hi doggeedoc; in response, I have been taking green tea extract for a couple of years…725mg. daily, but bumped it up to 725mg three times per day. Curcummin 2772mg in a typical 95% extract. No side effects,only a little “burning” sensation when taking the curcummin; anxious for my next bloodwork in a few months to see if the wbc holds and the alc remains steady.
Jim
Chaya – We can’t thank you enough for all you do for us. My question for you is, “what about vitamin D?”. I had mono at age 40 (11 years ago) and never got my energy levels back to how they were before then – until years later my PCP tested my vitamin D level and it was 9 (extremely low). She put me on prescription strength vitamin D and got my levels (and energy) back up to normal. I moved to a different town in 2006 and my new PCP dismissed the idea of vitamin D and I stupidly listened and my energy levels went back down. I was diagnosed with CLL in 2007-discovered by blood tests to figure out why I was so fatigued-and am watch/wait stage 0. I found a new doc who ran tests including vitamin D levels to figure out why I had no energy. My vitamin D was down to 19, and she recommended I go back on vitamin D. My energy is amazingly up now that I take vitamin D and she rechecked the level and it is in the normal range. She said there is research to show vitamin D is associated with our immune system. I keep asking myself, could I have held off my CLL if I kept up my vitamin D levels? In any case, I urge my fellow CLL’ers with unexplained fatigue to get their vitamin D levels checked!! It has helped me beyond belief.
Elaine
Thank you jandg. (If you haven’t read it, there’s a Feb. 2009 publication by Ghosh et. al. on curcumin and CLL. You can read it at http://www.pubmed.org)
Elaine, my mother works in the medical field, working with middle-age and elderly patients that have miscellaneous medical conditions. She urges ALL of them to get their vitamin D levels checked. (She also takes vit D daily herself.)
Thank you all for your input.
Reading the comments by Doggeedoc who has recently been diagnosed with CLL and mother also has it; Dr. Marty at the NIH in Betheseda is interested in the family connection. You may want to get involved in his studies. They are so involved with learning more from us. I have been accepted into the history study at the NIH with Dr. Marty, Dr. Wistner and Dr Wyndham Wilson. I can only tell you these physicians have great minds and Therese White, the nurse involved, really are involved with learning more and from my own point, I would be a fool to not take advantage and let these physicians learn off of me. I would encourage anyone with familiar CLL to get in contact with them.
I have been diagnosed with CLl for 5 years now. WBC 47k no symptoms except that. I am still very active and have a lot of energy. I did have mycoplasma pneumonia when I was 28 and was hospitalized in ICU for it. At first they thought it was legionaires disease but it turned out to be good old walking pneumonia or mycoplasma. Other than that have been pretty healthy. I am currently 58.
And let’s hear it for another history of cold sores (what we call them in the uk) which started when I was 17 and which were regular, disfiguring and painful up until I had my first round of treatment in 2004/5. Interestingly I get them very rarely now and almost always when I have some other ‘bug’. I carry acyclovir tablets with me everywhere and as soon as I feel the tingle, I take a short course. I find the creams completely useless.
And also a round of applause for two spells of chronic fatigue syndrome after a severe bout of flu’ in 1997/98 and again in 2003/4. The latter diagnosis was clung to by my GP despite lymph nodes the size of coconuts. I was beyond exhaustion and just slept all the time. I was offered anti-depressants, the usual response especially, I feel for women, to get us out of the surgery.
So I believe that the viral explanation for CLL is well worth pursuing with research. My own feeling is that the ‘flu (or whatever) just pushed my immune system over the edge.
I had a horrible case of mono/EBV in my 20’s and could not get rid of it. Doctor brought me back monthly for over 6 months and my blood work continued to show EBV. It finally went dormant (if there is such a thing) but I never got my energy back and seemed to pick up every other bug that came along after that. Diagnosed with CLL at age 40, one course of chemo, complete response, then it came back more aggressively with 17p- deletion. I am about to start chemo with a SCT in mind and the idea of the mono/EBV reactivating scares the heck out of me as I have always believe it is a player in this and possibly other immune diseases. EBV is bad news and I wish more research was done on it. I’ve also had a lot of infections after dental treatment.
Mocha, Thanks very much! I will contact NIH/Dr. Marty and see what they have to say. I appreciate you mentioning it.
Chaya,
I am so grateful for your dedication to us and to CLL Topics. It is a unique and most helpful resource, even if trying to get doctors to listen is always another story. Every doctor I’ve spoke with insists no one with Stage 0 CLL experiences fatigue. I know better.
About fatigue. I am Stage 0 CLL and do have constant fatigue of varying degrees. But figuring out the source of my fatigue is somewhat complicated by the fact that I have several other co-morbid diseases which also cause fatigue.
After reading your article today, another puzzle piece fell into place and a common denominator emerged for me–several of my chronic co-morbid diagnoses that also cause fatigue are also thought to be linked to a prior EBV infection!
In 1997, I was diagnosed with severe Fibromyalgia, which besides a myriad other debilitating symptoms, also causes constant fatigue. Fibromyalgia has been linked to a history of EBV infection.
A few years later, I was diagnosed with Chronic Fatigue Syndrome, also linked to a history of EBV infection.
In 2007, I was diagnosed with Stage 0 CLL, and at the same time for the first time, I learned from my blood work that I tested positive for EBV infection in the past (as opposed to a current infection).
Today, thanks to your article, I learned for the first time, that CLL may also be linked to a history of EBV.
Some common denominators are finally coming together for me: Fibromyalgia, CFS and CLL all are thought to have links to an earlier EBV viral infection.
And now that I read this article there seems another puzzle piece for me, which might finally make some sense. The few times I have been put on an anti-viral medication before being diagnosed with CLL, my constant fatigue was totally gone while I was taking the drug, but returned shortly after the course of treatment was completed. Interesting.
I don’t know whether all these puzzle pieces will eventually fit together, or whether an anti-viral treatment for CLL, is one answer, but if it is, I may not only be able to have my CLL treated, but for the first time, my other chronic illnesses, or at least their symptoms, may be “cured” as well.
Parenthetically, there also seems to be a link between Fibromyalgia and CLL.
After reading on a CLL suport website that Dr. Michael Keating of MD Anderson was reported to have said in a speech that there is a link between Fibromyalgia and CLL, I wanted to get a copy of that speech but could not find a transcript anywhere. So I emailed Dr. Keating to ask him about what I’d heard in the support group and whether it was true. His response was that many of his “patients with CLL have been previously diagnosed with Fibromyalgia.”
On a different topic related to fatigue, I want to thank you for the CLL Topics articles on Vitamin D3.
Last winter, thanks to an article I read here on CLL Topics about Vitamin D3 being used successfully to treat prostate cancer, and Vitamin D3 analogues being investigated as a possible treatment of other cancers and CLL, I did some Vitamin D research and found that one of the many sypmptoms of Vitamin D deficiency is fatigue. I also found many other things, both shocking and wonderful,about Vitamin D–that Vitamin D deficiency is rampant in this country, that it is believed to cause many diseases like MS, atherosclerosis, breast, prostate, colon and leukemia cancers–and that treatment with Vitamin D3 is currently working wonders at treating prostate cancer and in reducing cancer recurrences in breast and colon cancers, and more studies are under way to ascertain other “Vitamin D Cures.”
So, with my Vitamin D research in hand, in March, 2009, I asked my family doctor to order D3 testing for me.
I was shocked to see it come back at an 11 – Severe Vitamin D deficiency! After seeing those results and knowing my medical history for more than 3 decades, my family doctor doctor said he thinks I have probably been Vitamin D deficient for many years.
I am happy to report that treatment of the Vitamin D deficiency has been successful. In March I began Vitamin D3 therapy (cholecalciferol)and in a month went from an 11 to a 17, still deficient. In April, I went to stay with a friend who lives in Florida for a few weeks in early April to get some natural D from the sun in addition to my Vitamin D3 therapy. Three weeks later, my Vitamin D count was up to a normal 47! The mind numbing, crippling fatigue episodes I’d been complaining about for several years, were all but gone. Since then, I only have my “normal” Fibro fatigue…not fun…and often severe and debilitating, but not nearly as crippling as the crippling, mind numbing fatigue that was coming from my Vitamin D deficiency.
Again, my thanks, and my hope that my story helps someone else here.
Phyllis
CLL was diagnosed three years ago when my ENT noticed that I had unusually large tonsils – a common occurance. During the prognostic testing the PET scan revealed a tumor on my thyroid which was malignant. I was 45 years old and one of the healthiest people around. I was never diagnosed with Mono or chronic fatigue.
But, I have had a history of UTI’s and tested positive for HPV.
I am still w/w but my wbc has steadilty risen to 130K.
I have occassional bouts of fatigue; sometimes it is extreme and sometimes the fatigue comes on quickly.
I appreciate the blog. It is very interesting to see other stories. Thanks Chaya
Brand new to this site…a great discovery for me. Reviewing Med Journal articles from a customer point of view and in understandable language is such a tremendous service.
I fit the Ashkenazi Jewish pattern. Also have Chrons in my family, another genetic pattern for Ashkenazi folks. A nephew died of an aggressive Hodkins disease at the age of 22. I am 65, diagnosed just over 5 years ago, but by hindsight had symptoms 8 years ago…enlarged nodes. I am more or less stable with an extensive herbal, antioxidant, mega vitamin (A, D3, C) protocol. My oncologist, here in Portland OR, views my CAM favorably and is in close communication with the person directing it…a rare case of open mindedness and true integrative medicine. Also had exposure to acetone, TCP on bare skin in my 20s and for 10+ years before by diagnosis played volley ball for about 6 hours per week directly under high tension power lines.
I am assuming that although we are not to republish things from this site, we can share them with our doctors or friends that might benefit…such as this article with someone who has chronic fatigue.
I have spent 40 years as an R&D scientist, but not in the medical field. The quality of the editorials and the posts here really impress me.
Jim (jandg) and doggeedoc
Thanks both for your info on EGCG and curcumin and for the abstract link doggeedoc. I note the referenced abstract mentions these work best if not taken together, i.e. “When curcumin was administered simultaneously with EGCG, antagonism was observed for most patient samples. In contrast, sequential administration of these agents led to substantial increases in CLL B-cell death and could overcome stromal protection.” What does this translate to with regard to the most effective way to take EGCG and curcumin, does it mean alternate days, morning and afternoon, what?
Thanks,
Neil
I have refrained from getting into this thread about combining green tea extract EGCG and curcumin for the simple reason that I do not have anyting concrete to say about it. No one does. The research that looked at this combination is very early stage stuff, even the researchers are not sure about the dosage or sequence of administration.
This much I do know. Both EGCG and curcumin are extensively ‘denatured’ in the liver. In plain English, both compounds are gotten rid of in the liver because the liver sees them as toxins. This “first pass metabolic loss” means very little of the EGCG and/or curcumin you eat is going to get to your blood circulation where it may (or may not) do some good.
But in the process of doing this inefficient job of getting into the blood, you sure as heck are going to give your liver a lot of work to do. LIVER TOXICITY is no joke folks. If you are taking EGCG and curcumin and a few other things at relatively high dosages you had better be sure you get frequent blood tests to check your liver functions.
Curing your CLL with mega doses of these supplements (yeah, right) will not give you much joy if your liver dies before you do.
May I also request members be very careful about recommending drugs or dosages etc. to other members. This site does not approve of people practicing medicine without a license. I am not trying to be tough for no reason or throwing my weight around folks. This is serious business, and I don’t want people getting hurt because they think we have the ability to recommend drugs or dosages. That is medical advice, we are not quailifed to do that.
How about someone doing a detailed clinical trial to prove or disprove the efficacy of this combination? Now you are talking. That is the way to go, to get solid information that is credible and actionable.
Is it easy to get such a clinical trial going? NO. We had to work awfully hard to get the money and politics right to get Mayo Clinic to do the EGCG trial. Lot of work, lot of time, lot of frustration in the process of getting it done. (Don’t you dare add this new item to my to-do list).
Chaya, you have really opened the floodgates! Where to start?
Fatigue – I had it for about 6 years before diagnosis, no apparent reason, apart from slightly raised WBC, a virus I was told!. Interestingly the fatigue abated over the years, even before treatment. But fatigue basically has ruined my life since the age of 43.
Bug bites, viral infections, periodontal treatment, gamma globulin in pregnancy, viral ramping – all questions I’ve pondered over the years.
As regards the ‘good cancer’ I’ve learned never to mention my Cll to anyone. Even my best friend, a very sensible and caring woman, used to say “It’s a pity you had that blood test, you don’t need to know you have Cll”, as if it were optional.
Was thinking about trying LDN, but now it seem to have gone the way of Green tea and Curcumin – both of which I could not tolerate,
Now I’m going to try Vitamin D – thanks Phyllis.
Thank you Chaya and everyone
Mary Connell
Chaya et al.,
I get concerned when I see comments such as Mary Connell’s that she is “going to try Vitamin D.” (Forgive me if I am overstating your intent and you plan to do this through medical circles with monitoring.) It can be very toxic if not monitored so please heed Chaya’s words and do not self-medicate. It can be tempting but I have found that my doctor is willing to read any literature I send him and then give me a reasoned medical opinion. His response is always open but he debates issues and actually explores what I send him. Getting a doctor who partners with you is the most important thing I have experienced to date.
Judith
Doggeedoc, I’m interested to hear you a a 34 year old woman. I was diagnosed a year ago when I was 34 during a routine pregnancy bloodtest. Still at w/w. Are there any other women in their thirties out there that have been diagnosed with CLL? Not being of the usual age (and gender) to be diagnosed with CLL, I must admit I do sometimes find it a little lonely, like I’ve somehow developed this disease twenty years too soon.
I’ve never had glandular fever, or any other major virus. Never worked with chemicals. No family connection that we are aware of. So I have no idea whats triggered the CLL in my case. I do experience fatigue, but that may be more from my 3 year old and 11 month old daughters than anything else! So far managed to avoid too many viruses this winter – I’m in New Zealand – which I’ve put down to drinking tumeric in hot water every day, and a fresh lemon and manuka honey drink every evening! Manuka honey has antiviral and antibacterial properties. That and very frequent hand-washing to ward off the viruses brought in the house by my little ones.
Judith, sorry I did not mean to sound facetious – well maybe a little. I’m not likely to do anything silly.
Mary Connell
You wrote:
“Deep seated fatigue is often experienced by CLL patients. It is one of the classic “B-symptoms”. As you should know by now, most experts agree initiation of therapy for CLL is not driven by blood counts but by start of B-symptoms. These symptoms are seen as an indication the underlying CLL has reached a stage where it needs to be treated.”
…….I was told that having platelets at 30 , w/o fatigue or other symptoms was a reason to start treatment so as not to get a stroke or internal bleeding. Was that correct?
I am so glad that people are talking and giving specifics about their medical history. This is how we learn. Thank you all.
When I went in to see an oncologist earlier this month, it was the first oncology visit I have ever had. I was initially seen by a fellow. I knew more about CLL than the fellow and I had only known for about 5 days that I ‘probably’ had CLL. I had never heard of the disease prior to that. (My mother, for her own reasons, did not tell me about her CLL until I called her frantic with my blood results revealing 87% lymphocytes.) I went to a great hospital with a great CLL department. I’m not here to point fingers. I’m here to say that if we (those of us who have CLL) don’t push the envelope on these topics….advancement in this field is going to be really slow.
I don’t want it to be slow.
Today I called NIH. Again, I’m not pointing fingers, NIH has published a plethora of material that has benefited the human race enormously. The nurse told me that the familial study (in which I can participate) will not help me nor my mom, but will help future generations.
You’ve got to be kidding. Sorry, but that’s not what I wanted to hear. I probably will enroll but come on, I’m not dead yet!!!!
Rachel, I agree it’s totally lonely finding out at age 34 that you have a disease typically diagnosed in a 74-year old. Do I tell my friends?! And kids….I’ve always wanted kids….now what the heck am I gonna do?! You are welcome to email me and stay in touch, same for any of you: doggeedoc@gmail.com
Chaya,
I agree with you about recommendations for dosages and practicing medicine without a license. I am not and I don’t think others here are doing that. However, if someone ASKS me how much I personally am taking I should be able to tell them. In addition, your comment in parenthesis, (“yeah right”), is a bit sarcastic. I realize you are not a big fan of supplements but even some of the staff at NIH / NHLBI told me they are very interested in the potential of the aforementioned supplements… along with many other things, such as phosphodiesterase inhibitors (5 and 6), and now, perhaps, to find an inhibitor, whether natural or synthetic for the enzyme pde7b, according to researcher Paul A. Insel, MD, at the UC San Diego School of Medicine. This particular enzyme appears to be 10 times higher in CLL patients.
In Niagara Falls, one of your co-speakers was Dr. Brian Koffman, who established an herbal and complementary alternative medicine program for his medical group. As you well know, he is also a patient, having had a hematopoietic stem cell transplant for CLL in 2008.
I know from my CLL support group meetings that there is a tremendous interest in CAM. It may be correct for you to assume that it will not “cure” our CLL but I have heard or seen too much anecdotal evidence indicating it may help some of us keep it at bay.
By the way, I personally take a form of curcumin that has a sustained retention time, confirmed by human clinical studies, therefore allowing me to reach my desired sustainable levels in the blood plasma.
I would ask you to not dismiss out of hand the widespread interest so many of us have in this area.
“All that mankind needs for good health…is provided by God in nature…the challenge is for science to find it” – Paracelsus, the father of PHARMACOLOGY.
Thank you for your continued work and CLL research.
Jim
monag764
When I wrote that decision to initiate therapy is generally not on the basis of numbers, I meant the white blood count numbers. Some patients can go very high on WBC and still reasonably stay in W&W mode, while others may need therapy sooner because of B-symptoms.
But rapidly dropping or significantly low platelet counts (as in your case) are certainly reason enough to initiate therapy.
I should have made myself more clear.
Jim: Sorry, I apologize for my snarky response. You are right, a lot of people are interested in CAM. However, it is not my cup of tea; but I should learn to stay clear of subjects that I know little about and have not much interest in. I will try harder to follow my own advice in future.
I do worry though that even natural supplements can be dangerous at high doses. Witness the liver toxicity of EGCG taken at high dosage. Many of our members are newly diagnosed and not up the learning curve, not yet. All of us need to be careful about people misinterpreting the information we provide in all good faith. None of us want to cause any harm in the process of trying to help.
Very good wisdom and advice Chaya!
One of the things we CLL’ers, especially those new to the journey, tend not to realize or remember is that “CLL” is still an “umbrella” term. CLL is as varied as the number of people diagnosed with it. Some cases can carry the exact same markers and be treated the exact same way and yet have so totally different outcomes. In a nutshell, what may work for one person with CLL may have either no effect or an undesirable effect on another.
I have visited on several support forums where the subject of EGCG is a hot topic. What I have noticed is that while there are a few that claim it has helped them, there are others that do not notice any difference what-so-ever.
A personal example is the Vitamin D issue. My oncologist has twice checked my levels and both times they have come back in the normal range, yet I still experience bouts of fatigue….although not as bad as pre-diagnosis. My oncologist is at a loss to explain it.
The best advice I have heard so far is if you do decide to try EGCG, Vitamin D, or any other supplement; do coordinate with your oncologist. Some may advise against it but I believe most will be agreeable to let you try as long as you can be monitored.
Chaya,
I’m a 55 year old female who was diagnosed in May 2005, completed 6 months of FCR in June 2006 and am now in full remission. The treatment left me with a depleated immune system and a severe sinus infection that put me in the hospital on IV meds and with the benefit of a PICC line an additional 45 days post discharge of IV infusion. Subsequenly Iunderwent extensive sinus surgery (OHSU is the best!) which took about 4 more months to recover. With my weak immune system it was decided to start me on IVIGG treatments which I did every 3 weeks for over a year and now I have them every 6 weeks for at least the next 4 months. My labs are fairly normal but I continue with fatigue, especially in the midafternoon. My oncologist does not attribute this to my CLL but after reading these posts, I don’t feel like I’m crazy. Glad to know I’m not alone in this! I too would love to see a study done, perhaps there are some benefit in studying this aspect of CLL.
Karen from California
Some good news: the largest CLL-specific meeting started today
I will try and get a copy of the proceedings. If any of you are there, can you report back?
Jandag:
I agree that most of us use “alternative” methods to stay healthy (contrary to hints in some posts, I don’t think anyone expects cures or reversals once there has been genetic damage, ie, onset of diagnosed CLL). Staying healthy is the surest bet to increasing survival and expanding time between treatments, and supplementing with herbals to rebuild damaged healthy tissue as quickly as possible after treatment (plus diet, exercise, etc).
From my comment above you would never guess that my main focus is on herbals and supplements. While on FCR last year (my first treatment, alas, after 11 years of w&w)) I never shed one strand of hair! The 6-round protocol was shortened to 3, given my outstanding results (my oncologist’s terms, not mine.)
Now, Chaya is right on the money when she alerts CLLers not to self diagnose, herbals or otherwise. High concentrations of anything can be harmful. I consult a trusted herbologist/nutritionist (he is the co-author of the encyclopedia of drug-herbal interactions) of a reputed clinic. I discuss every single herbal formulation with my oncologist, who respects my opinion, my desires and my quirkiness, but he makes the final recommendation.
My point is that in this site Chaya is using her expertise to help us in the arena of necessary chemo and drug-stuff, frankly the area most of us are ignorant about and need the “heads up” and the layman interpretations. If it weren’t for her brilliant work, I would feel like I was going to the world of chemo-drug-land blindfolded and gagged. Instead, I felt more confident and assured (I would have wished for other treatment options!)than I could ever thought possible.
Jim: I would like to have an offline discussion with you about CAM and the studies you reference. If you have the time, can you email me? crispiva@aol.com. Tks!
Vitman D Caveat
You’re welcome, Mary. And thank you Judy, for your warning in response to my post.
While I always enjoy sharing helpful, exciting information I find with others, I must apologize to Mary and anyone else who may have thought from what I wrote that one can just “try” Vitamin D.
This cannot and should not be done without a physician who is knowledgeable about diagnosing and treating Vitamin D deficiency or insufficiency. Vitamin D can, indeed, be a miracle, but if Vitamin D supplementation is undertaken without medical supervision it can be dangerous and life threatening.
So, please, do not just “try” Vitamin D supplements on your own.
When I wrote my post about how much Vitamin D helped me individually with my fatigue, it was fatigue that was caused by a severe Vitamin D deficiency, not by CLL. I didn’t think to be careful enough to indicate that Vitamin D supplementation can be dangerous and should not be taken before:
(1) You first have the right type of Vitamin D, PTH and Calcium blood testing done to determine whether you have a Vitamin D deficiency, insufficiency or that you are not at optimum levels;
(2) Your dosage is determined between you and your doctor and adjusted as needed based on season and blood test results;
(3) You do your own homework to make sure you know the difference between Vitamin D2 (ergocalciferol–the Rx kind) and Vitamin D3 (cholecalciferol–the OTC natural form) supplementation. Why? So you can bring peer reviewed articles to discuss with your doctor which type of Vitamin D is better for your body and why. Many doctors, like mine was, though well meaning, are not up with the latest research on this; and
(4) that you have your blood levels monitored frequently while on Vitamin D supplementation to establish a baseline, and if needed to adjust your dosages accordingly to meet and maintain your goal Vitamin D levels.
For Mary, or anyone else who would like to have it, I would be happy to share internet resources I found helpful to inform myself and my doctors which is the best test to order for Vitamin D, which Vitamin D type is proven to be the best Vitamin D supplement, and how often I should have blood testing done.
If you want my research, please send me an email at MyAngelTracks@aol.com, and I’ll send you some links to information to help you begin your research.
Phyllis
Karen V.
I have been newly diagnosed and still waiting to find out what stage, but I have been complaining to my PCP about fatigue ever since I had a bad bout with the parvovirus B19 (Fifth’s Disease) eight months ago. I have seen other blogs where other CLL pts had this virus prior to their diagnosis. Thank you for this article. It helps to see that I’m not imagining this deep seated fatigue.
I have CLL- I am exhausted by 1pm in the afternoon, yet my RBC = 4.52. I have had no treatment- Watch&Wait, my WBC are 42.9 and platelets 131 and neutrophiils 12.
I regret giving the impression that I’m an airhead ready to ‘try’ anything.
On the contrary, I am very conservative about taking any kind of supplementation. I hesitate to take an aspirin. By the way, I did ask my oncologist about Vit D recently; his reply – “I’m a haematologist, I don’t know anything about Vit D”. Like everyone else here, I search reputable Medical Journals and try to be discerning. Thanks for the information, I will follow it up.
Mary Connell
CAVU
My oncologist at MD Anderson suggested I take Ritalin for fatigue. I tried it, liked it, but unfortunately my heart did not. I have a history of atrial fibrillation, and noticed that in the middle of the night my heart would thump loudly enough to wake me up. Needless to say, I regretfully discontinued the drug.
Low Dose Naltrexone (LDL) was suggested by a friend this past summer. After I cleared it with my oncologist (“Won’t hurt you, but very probably won’t help you, either.”) I tried LDL for two months, beginning at 1 1/2 mg./day and quickly progressing to 3 mg/day (4 1/2 mg. is considered the maximum dosage.) After a brief period of interrupted sleep and early a.m. nausea, I experienced a profound surge in energy.
My wife said I was suddenly “the old me”, happier, stronger, more physically active, more focused. Unfortunately, however, this phase lasted only about two weeks. I began to experience periods of debilitating nausea, energy was gone, etc., so I discontinued LDL as a precaution. Did I subsequently improve? Not really–but I have so many other maladies that I cannot possibly extrapolate what might have caused what–drug interactions, anemia, Valley Fever, old age…the list goes on and on. But now that I’ve stabilized somewhat, I may give it another shot.
On a positive note, I have received benefit from practicing some “energy exercises”, which I once scorned. I can’t verify what happens to the WBC (not as sophisticated as Norman Cousins when he scientifically proved that laughter really was good medicine, that it changed the body’s chemistry and improved the capacity for self-healing), but I know that before the exercises I can’t do a single push-up, braced against a countertop, and afterwards I can do a dozen without breathing hard. Don’t discount those feel-good endorphins–receptors are popping up all over the place in immune cells, including on our very own WBCs.
Concerning Vitamin D, I find it interesting it is now believed to play a role in everything from preventing osteoporosis to combatting cancer, yet it can also cause cancer. In just a few years sunshine has gone from being good to being bad to being maybe good again, in unknown amounts. (I assume transdermal sunshine by-passes the liver, so toxicity would not be a factor even at high dose of 20,000 units per 20 minutes of high-noon exposure.) Squamous or basal skin cancer might attack, but melanomas might decrease–and no one is quite sure how much is too much or not quite enough. If we did develop in Africa over a few million years, is it unreasonable to assume sunshine became and remains an essential component of our biology?
There are never enough rules, never enough research, sometimes not enough profit motive, no guarantees. But if the known risk is small, and if there are possible benefits, and you are careful and observant about how your body reacts, why not try? Curiosity is a very good thing. The world is far too complex and sophisticated to be defined by our very limited knowledge.
I know these are older posts, but I hope I can get some feedback even if it is only speculation. And as I read the posts I cannot help but to notice many of the symptoms CLL patients suffer from so do CFS/FM patients.I will try to condense this to as breif as possible while covering all important information.
I do not have CLL, but have been seeing a gentleman for about 6 years who was diagnosed with it about 2 years after we began seeing each other. I was diagnosed with Chronic Fatigue Syndrome/Fibromyalgia during that same period of time.
Let me start from the begining. About a year after we started seeing each other he began to have symptoms that were eventually diagnosed as CLL. I was diagnosed with CFS/FM about 6 months proir to his dianosis. The Dr. felt my CFS/FM was triggered by EBV. I did not have EBV as a kid, or if I did it was such a mild case I never slowed down. So at 46, it hit me like a ton of bricks. It was also discovered I have Hashimoto’s In the mean time my gentleman friend was trying to get a handle on being newly diagnosed with CLL.
I am currently working with my Dr. to be tested for XMRV. We are trying to get the insurance Co. to pay. It would be about $650.00 out of pocket, so as of right now I do not know for sure if I have it, but feel it would be of great help to know for both of us.
Now for the questions. Do all CLL patients have the XMRV virus? If it is sexually transmitted, who gave it to who? Or was it just a coinsidence that it happened? My CFS/FM is well managed at the moment, could some of the same things the Dr. has me doing be beneficial to CLL patients. My Dr. is very progressive and has had me on anti-virals for about 4 years even though this is not considered protocol. If I try to go off the EBV come back. Could the anti-virals be keeping the XMRV at bay also and we just don’t know it? And if so, could that be helpfull to CLL patients? Could these two diseases be more related than we thought? Could this be why I have heard that CLL can be genetic? As well as CFS/FM? This is an interesting turn of events. I just hope whatever is discovered it will be helpful to all.
TKScaper:
I do not believe XMRV is a causative link between your diagnosis of fibromyalgia and your friend’s CLL. Anecdotal stories like this can be very trying to the individuals involved but they do not mean a great deal when it comes to figuring out what causes CLL. Sorry.
Thank you for helping to give some clarification to a very disturbing and sad coincedince.
Hey all!
I too sores the sores inside my mouth. Some days they are more pronounce than other. Fierce heartburn since I was a teenager. Eyes always red – burn often – I’m 48 now. One DR. suggest w/w – Went for 2nd opinion She started me on FCR – FCR ended in May. Quit after four rounds. Nodes were back to normal. No sign of disease. Feel good except for the fatigue. I believe chemo brain is real. I’m not a stresser – so I can’t blame that…. Just had vit D checked. Very low.
Also grew up next to power lines – not blaming that – heard there may be some connection – so just throwing it out there.
Thanks Chaya – for all the good information – beginning to see lots of patterns.
I wish you all many, many good days.
Patti
I was diagnosed with CFS about 5 years ago with soul crushing fatigue. I lost my “thinking” job and had to temp doing things like filing and data entry. I tested positive for EBV. After about three years I changed up enough variables (different foods, no coffee, exercise, etc) in my life to start to feel much better (and able to think again!), but then I was diagnosed with CLL last May after collapsing at work. I am very happy to see articles like these because it means (to me) that progress is being made, one small step at a time. I just turned 41, I’m new to this forum/website, and I wish everyone well on their own journeys with this disease.
we talk of fever as b-grade symptom in my case i feel feverish ,my family on touching me and say i have fever,but on measuring it is found to be 37 degree celsius or lower,what may be this due to
i have also developed hepatomegaly and advanced to stage 2 of cll in about 2 years time,last visit was ok in feb 2011,now docs say it is stage 2
i live in delhi ,india
pl respond to my querry
sanesh
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