Respect is hard to win, easy to lose
One of the more important functions that goes with my “job” is reviewing medical histories of patients and providing them with guidance to the best of my ability. Over the years I have heard from thousands of you. Many times it may be no more than suggesting a good place to go for a second opinion, or translating lab report jargon into plain English so that the motivated patient can get a better handle on their situation. Sometimes I am the voice of validation that a patient needs, just a little encouragement that he is making the right decisions. But a few times it is my “bad cop” duty to administer a swift kick in the rear-end to patients who are obviously shooting themselves in the foot.
Often, patients send me their medical information because they are frustrated by the level of attention they are getting from their own doctors. I am only too willing to take their side in this battle. But just once in a while I can understand the frustration of the doctors involved. A patient came to me the other day. This was a lucky patient, with an admirably well behaved CLL smoldering along at a snail’s pace, terrific prognostic indicators. Unfortunately, patient also had a long track record of all sorts of skin cancer (melanoma, basal cell carcinoma, squamous cell carcinoma) and several other serious health issues (emphysema) besides. My empathic juices were flowing, I was all ready to become indignant about the heartless doctors who failed to go the extra mile and give this poor patient every bit of help humanly possible.
Then I saw the deal-killer, the single sentence in the patient’s medical history file that just about made me close it and quit wasting my time on a battle with foregone conclusion. This is the kiss-of-death sentence that sends an unmistakable message to doctors:
“Patient is a long term heavy smoker that continues to chain-smoke to this day”
If you do not care, why should anyone else?
No wonder this patient was getting little time and less sympathy and attention from doctors. That single sentence is like a “kick me” sign on her backside. I mean, why would anyone want to waste time on a case where the patient has clearly demonstrated no desire to be a part of the solution? Physicians are human beings too. We all like to invest in situations where there is a chance of winning, not when the game is rigged and our hands are tied behind our backs.
I have never smoked, so I do not know how hard it is to quit. I will accept that is very hard to do. But you should know the cost of what you choose to do. If you continue smoking even after a confirmed cancer diagnosis, be prepared to lose a very significant part of sympathy and empathy from your healthcare team. You go from the blameless cancer patient that tugs at heart strings to the wretch that has no one to blame but himself, more or less, in one fell swoop.
Respect is hard won, easy to lose. In my “job” I get to hear a lot of anecdotal stories, both from patients and their doctors. We are all familiar with the doctors from hell, the ones with no compassion and who think their white coat gives them an automatic right to arrogance, whether or not they actually have any competence to be arrogant about. How about the other side of the coin, the patient that is everyone’s least favorite patient? Do you ever wonder what you can do to get your doctor’s respect, develop a real solid working relationship with your medical team? Hypochondria is a real drag, as is a patient who latches on to every crazy fad diet and nonsense potion out there to “cure” his CLL, wasting his doctor’s time to boot. But a patient who is serious about doing what she / he can to improve his health is always appreciated. Your respect for your health and your body gets you back equal respect from your doctors.
One in three cancers may be preventable
Isn’t that a little after the fact, you might ask. After all, the members reading this website are here because they have CLL – I doubt too many others will bother spending time on this definitely not-for-frivolity-and-amusement site. So, why am I wasting your time and telling you about bolting the barn door after the horse has fled the county?
Because there is documented evidence for increased incidence of secondary cancers in CLL patients, second cancers that can quickly take center stage and become a lot more deadly than the good ol’ CLL, that’s why. It is these pesky second cancers that I would like you to think about, see what you can do to reduce your risks.
Skin cancer is the biggest of possible secondary cancers. I hope most of you are aware of this by now. I have preached the sermon often enough from this soap box. The other one might surprise you: aggressive lung cancer. I have lost good friends to both lung cancer and skin cancer, CLL patients that had enviable CLL prognostics but fell victims to a curve ball coming in from left field.
As the abstract below points out, CLL patients are more than twice as likely to get secondary cancers. And having a secondary cancer reduces your chances of getting deep and long lasting remissions. CLL response rates drop – on average – from 92% to 86% in patients with a second cancer. Only 70% of CLL patients with a second cancer were alive at the 5 year mark, compared to 82% who did not have this additional complication. That is a huge 12% difference between being alive and dead.
J Clin Oncol. 2009 Feb 20;27(6):904-10. Epub 2008 Dec 29.
Other malignancies in chronic lymphocytic leukemia/small lymphocytic lymphoma.
Tsimberidou AM, Wen S, McLaughlin P, O’Brien S, Wierda WG, Lerner S, Strom S, Freireich EJ, Medeiros LJ, Kantarjian HM, Keating MJ.
Department of Leukemia, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Blvd, Unit 455, Houston, TX 77030, USA. atsimber@mdanderson.org
PURPOSE: Other malignancies have been reported to occur with increased frequency in chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL). The aim of this study was to determine the frequency, outcomes, and factors associated with other cancers in patients with CLL/SLL.
PATIENTS AND METHODS: We reviewed the records of consecutive patients with previously untreated CLL/SLL seen at The University of Texas M. D. Anderson Cancer Center from 1985 to 2005. The number of second cancers observed was compared with the number expected from the Surveillance, Epidemiology, and End Results database.
RESULTS: Among 2,028 patients, 324 (16%) had a history of other cancers and 227 (11.2%) developed other malignancies during the follow-up period. Overall, 625 cancers were observed in 551 patients, including skin (30%), prostate (13%), breast (9%), melanoma (8%), lymphoma (8%), gastrointestinal (9%), lung (6%), and other cancers (17%). The risk of a second cancer was 2.2 times higher than the expected risk. The response rates in patients with and without a history of other cancers were 86% and 92%, respectively (P = .04), and the 5-year survival rates were 70% and 82%, respectively (P < .001). In Cox analysis, independent factors predicting development of new cancers were older age, male sex, and elevated levels of beta2-microglobulin, lactate dehydrogenase, and creatinine. In patients who were treated for CLL/SLL, the treatment regimen did not affect the risk of subsequent cancer (P = .49).
CONCLUSION: Patients with CLL/SLL have more than twice the risk of developing a second cancer and an increased frequency of certain cancer types. Awareness of risk factors could permit early detection.
PMID: 1911469
So, is there anything we can do to reduce our risk of second cancers? Please remember, I am not talking about eliminating risk, just reducing it to the best of our ability. Sometimes the best we can do is not good enough. But sometimes it is, and that is what I want you to focus on.
Below is a list from an article in WebMD, citing two reputable organizations giving us their take on the percentage of preventable cancers in this country and else where. According to their estimation, about a third of adult cancers may be prevented by paying attention to diet, physical activity and avoiding obesity. That is not even counting smoking, the single biggest risk factor for lung cancer and a host of other cancers as well.
• 38% of breast cancers
• 45% of colorectal cancers
• 36% of lung cancers
• 39% of pancreatic cancers
• 47% of stomach cancers
• 69% of esophageal cancers
• 63% of cancers of the mouth, pharynx, or larynx
• 70% of endometrial cancers
• 24% of kidney cancers
• 21% of gallbladder cancers
• 15% of liver cancers
• 11% of prostate cancers
Controlling the things that are within our control
Many things in life are not within your control. I doubt you “did” anything to become the proud owner of CLL. Perhaps it was baked in your genes, a case of familial CLL that your parents surely did not want you to inherit. Perhaps it had something to do with that bad case of infectious mononucleosis that had you flat on your back all through senior year in high school. Perhaps it is truly a case of “sporadic CLL”, you were unlucky enough to win this particular happenstance lottery.
Whatever the reason, the fact of your CLL diagnosis makes some other aspects of your health come into sharper focus. Infections are always a huge issue for CLL patients. After all, CLL is a cancer of the very immune system that is supposed to protect you against infections. The response to pathogens is either so over the top that it is dangerous by its own self (as in exaggerated response to bug bites) or so wimpy that infections are allowed to dig in and make a nice home for themselves without meeting any resistance. A nice, well balanced and effective response to pathogens is not often in the cards for CLL patients.
Winter flu season is approaching. How many of you have had your flu shot? Even more important, how many of you are strongly encouraging your family and friends to get the flu shot, so that you get some level of “herd immunity” from the flu bug this year? How many of you practice “social distancing” as appropriate to protect yourself during this holiday season?
Since your immune system is not exactly up to speed, it is important that your brain gives it an assist. New year is approaching, along with the traditional time for making fresh starts. The life you save may be your own.
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23 comments on "The Patient That Gets No Respect"
I try to be honest with my doctors about how depression and anxiety limit my ability to do what’s best for me but I know it’s very frustrating for them. They see the solutions: better diet, lots of exercise, and don’t understand why it’s so hard for me. “Nobody likes it,” they say, unaware how hard it is for me to just get myself out the door. Many doctors, including my former oncologist, appear to have scorn for the process of therapy. His attitude was so negative about it I could never make a dent. Luckily, not all docs feel that way but I think far too many do.
Getting Respect – I imagine you could add –
1) Keep EVERY appointment, and be early,
2) Do everything your medical team tells you to do, exactly how they tell you to do it, if it is humanly possible for you to do so.
I have wonderful doctors. After 20 years breast cancer, uterine cancer, lynch syndrome and now CLL. My doctors say I’m a fighter.
I have a strong medical team who respect me and know I respect them.
It works both ways
Yes it’s a challenge and at 60 I still work full time and have a busy life even with the fatigue, a nap at lunch time gets me through the day.
The first time I met Dr. Keating, July 2007, he lectured me on keeping my skin covered with sun block. Although I had been relatively careful previously, I took a giant step and made sure I was always covered up in the summer and winter (here in the Northwest) in addition to using sun block. Yes, I had two squamous cell carcinomas in 2009 surgically removed. I have had a very long history of skin problems, predating CLL by 28 years. My wife suggests that I act like a first year med student regarding these matters. I suppose it may have something to do with my pending second chemo effort with lenalidomide and rituximab.
Barry
You are certainly right about practicing social distancing. I am just recovering from a bout with some sort of “thing that is going around” in my community that I caught, I’m sure, in shopping crowds. It wasn’t fun to spend Thanksgiving with raging fever, headache, sinus infection and chest pain due to constant coughing. I have primary pulmonary hypertension in addition to CLL (no, I don’t smoke). The biggest blessing of the episode was a doctor who was willing to treat me the day before Thanksgiving and I managed to stay out of the hospital. Hospital visits are more frightening for me than anything else. All I can think about is “what else am I going to get here?”
The biggest thing I have not done for myself this fall is to get a flu shot. I have not felt well enough and keep putting it off. I’m going to try to do better.
Thank you for this, Chaya. It remains a sobering note to a challenging diagnosis. After reading this, I think I may go back to an occassional drink and 2 desserts. Most of the cancers, other than lung, mouth and skin CA, seem to be unpredictable.
One thing I have found useful is to write a thank you note with feedback to the consultant and team I have met. Recently, I did this with NIH and was surprised to receive a response back from one of the physicians stating he was happy I took the time to comment on my impression of the meeting. In my email,I mentioned all of the things which really pleased me and thanked everyone involved. The Doctor who responded was the least communicative during the consult. In fact, his only input was to direct a question to me which, after some reflection, I answered more completely in my thank you.
Does having asymptomatic CLL still mean your immune system is compromised? Or that you are not healthy? I was with my daughter and grandchildren right before Thanksgiving only to find out that my daughter, who looked exhausted, (which I attributed to her 4 little ones) came down with a flu/cold two days after our visit and had been contagious. I was very relieved that I did not get sick. I thought Wow, my immune system is o.k. Am I wrong?
It is nine months since I was diagnosed and since then have been even more careful of my diet (major amounts of greens and berries, only limited fish and poultry and no dairy or gluten, almost daily exercise, see my dermatologist twice a year for body checks as well as my pulmonologist and have had both flu and pneumonia shots. I cannot agree more with the diet and exercise recommended, it helped me enormously — the winter asthma I had experienced this season a year ago and the tachycardia have pretty much vanished and I almost never need my inhaler or feel short of breath. I also go for acupressure, which has been a great stress reliever. I don’t dwell on it, my doctors (whom I respect and genuinely like) treat it lightly but still I do wonder and worry.
Most docs and medical groups recommend flu shots. Dr. Mercola, whose recommendations on some things I find really odd, campaigns against them.
It is easy for me to just blow off his rantings on this, but one thing he says caught my attention. I do not remember exactly the statistics he quotes, but the essence is that the percentage of seniors who get flu shots has risen very dramatically over the last few decades, but there has not been a decrease in the death rate in seniors of similar age, etc due to pneumonia. My family doc recommends monitoring the Vit D level in my blood and keeping it high and not getting a flu shot. My present oncologist is neutral. Previous oncologist thought yearly flu shot was good idea. Any one else getting mixed signals on this? Live virus vaccines, like for shingles, seem to draw a decisive no.
I certainly do respect the medics at Barts Hospital here in UK, however, I do think sometimes the males doctors need to learn some ‘listening skills’. After all, we are the experts in terms of the symptoms in our own bodies. The one exception to doctors not listening with full attention, is a female consultant and a female GP (general practitioner).
I reckon exercise seems to sort out and prevent so many problems but the Catch 22 is you have to be feeling well enough to do it in the first place.
Chaya,
Thank you again for your important article. If I may add another note re: my oncologist’s office. Over one year ago, she hired another nurse.
I immediately knew he was not good for this office. I don’t know what his credentials were but I did not feel confidence and felt so uneasy I could not call him when I needed help.
To make matters worse, he became my nurse. My oncologist knew how I felt but I said, “I would try.” When I went on chemo again, he was useless. I contacted other oncology nurses.
I did finally tell my oncologist that I absolutely could not handle him as my nurse and am so apprehensive. I was changed to a Fellow and another nurse.
A few months ago he was asked to leave. It was not because of me. Others reported him and also the other nurses.
He will probably do well in another type nursing area but not in oncology. I wish him well.
Rita
onlyme raises the same puzzlement I have felt. Being asymptomatic but certainly immune suppressed, I do not understand how I remain ‘healthier’ than family members. The most extreme example was hosting someone with such severe pneumonia he went directly from my home to the ICU with no harm done to me. Odd.
My husband had smoked for over 30 years. When he married me 15 years ago he wanted to quit. Over the years we tried cold turkey, hypnosis, acupuncture, Wellbutrin, patches, gum, and even one that our church recommends that combines prayer with cinnamon candy and mouth wash. These things didn’t work for him. He has an anxiety disorder which may or may not have played into the difficulty he had quitting. One thing that almost worked and was free; was smoking one cigarette a day less each day but alas, he got down to 2 cigarettes and could not stop. The method that finally worked for him was the drug Chantix. As with all medicines this one can have serious side effects and it is also expensive. He took it for for a little over a month and it worked!! He literally had no desire to smoke and experienced no side effects either. This was over 2 years ago and he says he has no desire to smoke; truly a nonsmoker.
Response to onlyme: I asked my doctor the same question about being immune suppressed at my last appointment two weeks ago. I am also asymptomatic, watch and wait. He told me my neutrophils and immunoglobulin levels were fine. So I guess that is something you have to check with your doctor about. This is all new to me and I am not that educated yet about CLL but maybe that is helpful to you.
Thank you Chaya, for a very informative update.
Stay well,
Monique
Status of immune function changes over time for CLL patients.
Most patients who get regular checkups (annual blood tests etc) are likely to have been diagnosed with CLL as soon as it showed up on the scene. Except in a few very aggressive cases, often there are no symptoms and very little immune dysfunction in the early stages. Patients are put on Watch & Wait until things change.
During the early period of W&W ALC (absolute lymphocyte counts) grow gradually, but typically ANC (absolute neutrophil counts) are still within normal ranges. Same goes for red blood cell counts and platelets. All is as it should be (except rising ALC) and there are also enough immunoglobulins to do their job of protecting against infections.
As time goes on, with the exception of a few truly smoldering variety of CLL patients who never progress, the situation starts to get more complicated. ALC increases, often faster than it did before. CLL cells start to infiltrate bone marrow and interfere with proper production of all the other cell lines. ANC may start trending down, as also immunoglobulin counts. Since both of these are important in controlling infections, the patient may be more at risk of infections. T-cell and NK cell counts are generally not measured in CLL monitoring. But it is now understood that both counts and efficiency of these important cell lines begin to take a hit. Autoimmune disease such as AIHA and ITP is another aspect of an immune system that is not working the way it should.
Our immune systems are a very closely inter-related system of great complexity. With a dysfunctional and malignant B-cell compartment growing ever larger, more and more things start going wrong. Of note, as CLL progresses the patient stops having proper response to protective vaccines such as the annual flu shot.
All of this is further hastened if the patient has to go through further immune damaging therapy to control the CLL. This is probably the single most important issue to remember – the devil and the deep blue sea choice of having to treat the CLL, but the therapy often making the underlying immune suppression even worse. Even single agent Rituxan is not a truly free lunch. Long term use of Rituxan, even by itself, reduces immunoglobulin levels – and that makes patients more prone to infections, viral reactivations etc.
Please remember I am describing a general trend over time. In some aggressive cases it may be just a year or two before things start going downhill seriously. More lucky patients with better prognostics can for many years without any CLL related problems. Prognostics can shed some light on how your own CLL may behave – but there are always exceptions to the rule.
Chaya, we are all so grateful for the information you provide and that we can’t always get from our doctors. CLL is like a mystery until one gets it.
My doctors, whom I do like and respect, pretty much brush off my concerns and tell me I am doing well. My blood work is good, the levels fine, except for the elevated WBC. And when things happen like the plethora of tiny brown spots that suddenly have proliferated on my arms, I wonder if it’s the tiny aspirin I take every night or is it the CLL. My internist has no answer and says ask my dermatologist, who says it’s age or sun related, and my hemo/oncologist doesn’t address it at all and just tells me to forget I even have CLL that I’ll die of something else. Yes, that’s the scary part… the secondary that we are subject to, via the statistics.
Than you longfordarms and qb, It would be helpful to know what other asymptomatic CLLers experience. I have read countless articles on this site and gone on the Mayo and Andersen sites as well and bring these articles to my doctors. I think the statistics for CLL are much higher than are reported. If one multiplied the amount of patients my hemo/onc and internist have alone by the amount of towns in this country, the statistics would be far greater. Am I wrong about this?
Each of my doctors, the internist, hemo/onc and pulmonologist all recommend flu and pneumonia shots but NEVER live vaccines for CLL. It’s the first time I’ve ever had these shots but am glad I had them. I did ask my internist about the double flu shot a few weeks apart since CLL doesn’t always react to the protection but she did not think it was necessary. The most difficult part is avoiding crowds (especially during the holidays) and the people who insist on hugs or shaking your hand. I do not tell people except those closest to me because I want to be treated in a normal fashion.
P.S. What does it mean when the WBC goes down from one blood test to anotheer? Does this mean some the elderly cells are dying when they should? Do the cells fluctuate or does this mean one can go into remission?
In regards to this article, I am ever grateful for all you do to keep us abreast and our heads screwed on straight for us to think deeply of our CLL and how what we do affects the outcome of other diseases that can occur from this immune suppressant disease. I can say that my own hemo/onc and my CLL specialist team in Bethesda at the NIH are very supportive and willingly listen to all my concerns and tell me what to look for as time progresses. I have a great internist that has put me through some recent tests for my thyroid because of the CT scan I had in NIH that showed nodules on my thyroid. I too copy articles and give them to my doctors and at times they do take my concerns into account especially if I am showing a real concern about certain tests or how my blood counts are progressing. We have to be our own advocates and learn as much as we can about our disease so we can have the intelligence to ask those questions that are life and death issues. My husband has been recently diagnosed as well. And we are in the NIH clinical trial together.He has always appreciated me giving him insight to “MY” disease. Now that he has been blessed with the same himself he has grasped so much more about it because I have had your articles to fall back on and learn from. I save everyone in a separate file called CLL Updates on my PC.
Onlyme & qb,
Chaya’s comment that “Our immune systems are a very closely inter-related system of great complexity” cannot be over stated. Knowledge by the best Doctors is far from complete.
I was diagnosed in the Fall of ’06 with visible neck lymphadenopathy and an ALC of 21k. In spite of bulky disease and a one time high ALC of 300k, I have had only one cold in May of ’08 regarding infections. Not only that but my perennial winter bout of herpes simplex disappeared along with my chronic foot fungus of 43 yrs from service in Viet-Nam. Herpes reappeared when I became neutropenic after Treatment in ’09. One doc suggested that it was probable that I had been infected from time to time but the IMMUNE REACTION of my body was not displaying customary reactions i.e. mucus production etc. Not sure I buy that but…. Regarding the disappearance of the foot fungus another doc said that as the IgA declines (which is the guardian Ig on the surface of the body – GI tract included) bacteria will colonize the foot area and feed on the fungus. Intriguing. Bottom line for me is the, so far, healthier me than before CLL in the area of infections. One more thing I am sure helps is an unusually high level of IgG for my disease profile. I exercise daily and eat well thanks to my wife.
On the issue of Respect and while it is a two way street, I find the treadmill atmosphere in Doctor’s offices to be a hindrance in the communications dept. If you have a concern about your condition or the treatment you may receive it is imperative that you get an answer from your main doctor. The intermediaries such as the Fellow, the Nurse Practitioner or the Physicians Assistant may be making or assuring you of decisions that your Doctor needs to make. That flaw nearly cost me my life when I raised my concern about a trend of rising creatinine just prior to my 2nd cycle of RF. My oncologist was off on an emergency call and the nurse was told to proceed with starting the infusion even though I was supposed to meet with the oncologist prior to start of the 2nd cycle. The nurse patted me on the shoulder at hearing of my concern and said, “Don’t worry, the Doctor knows about it and we know how to handle this” The result was my going into a stage 4 renal failure event.
Lessons to be drawn: I had brought a “Chaya’s My Chart” history of my blood work showing what I believed was a red flag of concern over a slow but steady rise in creatinine and corresponding fall in GFR from the end of my first cycle. But I failed to demand to see my doctor about it and trusted that she was fully aware which was not the case. If the last creatinine number had been an unusual spike it might not have been that important but I failed myself in not being pushy or sufficiently demanding.
I have found that Doctors and this goes for specialists are overly focussed on the CLL and not making decisions whole-istically. Needless to say I demanded a conference with the doc who is a very bright person and noted researcher in HSCT to make sure that she knows I am part of a team and that decisions and future concerns will not be delegated to her subordinates.
I have yet to be given a definitive reason for the kidney complication either by my oncologist, Nephrologist or CLL expert. The expert suggested a possible auto-immune complication in the kidney which brings me to a last point, particularly for you “healthy appearing patients” and that is that my excellent health profile and the excellent response from Cyle 1 RF Concurant TX I think masked an underlying serious kidney issue that had been slowly building as my CLL progressed and boiled over with treatment. While I had successfully avoided CT scans by some pushy docs I failed to properly address a concern that could have cost me my life. Importantly, even if you have your doctor’s attention and respect it may not be shared by his or her staff!
WWWW
Given that our immune systems are compromised, it makes me wonder about small physical problems that normally would be of no concern but now make me curious as to their manifesting themselves. Two years ago, I noticed the very slight thickening on the inner part of my fingers and when I questioned my dermatologist was told it was Dupytrin’s. This is not fatal nor is it serious unless the tendons thicken and shorten so that a claw hand develops, but this is unlikely to occur in my case as it is barely apparent and seems to have improved since I improved my diet . I also noticed recently, when washing my face, that my ear cartilage felt a little different and again was told by same doctor that it was Darwin’s tubercle, again not a concern (these are genetic disorders and could have come from an ancestor, although I know of no one in either side of my family who ever had CLL or any of these conditions). However, I find it interesting that these genetic disorders came out about the same time, which makes me wonder if they are a result of Chaya’s statement that “Our immune systems are a very closely inter-related system of great complexity.”
Again, Chaya, thank you — I am so grateful for your extraordinary research and this site with the resultant discussions that arise because it is the only place to voice these concerns and have them addressed. I am not saying there always are answers or perhaps even a study, since some diseases are not commonly known, but most doctors give the pat answer they are genetic and let it go at that (and perhaps that is so), but nevertheless, one cannot help but wonder if they would have remained latent if not for the CLL. I would like to know if others have had similar experiences.
It is nearly impossible to tell exactly how CLL may affect us, particularly in regard to the “normal” aging process where we are in evolutionary free fall, post prime reproductive years.
Experts will dispel the myth that CLL, particularly where the tumor burden becomes high, can make the blood dangerously viscous. Patients have been known to function with peripheral blood counts above 500k. That said, I have noticed peculiar physical phenomena that I suspect arises from having CLL. I questioned one Onc about lumps that appeared where it was unlikely any nodes existed. I had one ear which had a “Dr. Spock-like” protrusion on the top of the cartilage and a bulbous swelling of the earlobe. He said it was probably a blockage of oil ducts. OK.. but what caused the blockage? The condition certainly worsened with the W&W until I was treated. the swellings went down after but did not disappear.
Another oddity happened when I began to see different shades of unnatural color projected on what I looked at and that ended after a partial retinal tear in one eye… CLL or unrelated? Nodes or swellings from accumulated tumor I suspect are responsible for many minor as well as major complaints but are difficult to prove. When node masses grow they are bound to push and crowd organs and nerve complexes that can produce a variety of effects.
Chaya’s point of a patient’s roll in gaining a doctor’s respect by taking care and responsibility for our health can have the dual benefit of a better QOL ’cause nobody gets outa life alive but we all can influence how best to “square the curve”. This crowding feature of CLL makes all the more sense for us to practice and maintain proper exercise. Don’t forget, the lymph system has no “heart” to pump the fluid through your body. Only exercise can properly oxygenate cells and move lymph efficiently.
On the diet front we may exert some positive result toward lessoning the chances of secondary cancers by eating cruciferous vegetables containing antioxidants and compounds such as phenethyl isothiocyanate found in broccoli and watercress. Substances found in foods like sulforaphane GS, also found in broccoli, are being studied at institutes like Johns Hopkins for their role in the production of glutathione thought to be one of the most important antioxidants made endogenously (inside) the cell. Glutathione, as a supplement, cannot be properly metabolized but we can supply our bodies with the compounds that are building blocks to keep us in fighting form.
It is not all in whether we win or lose but how we chose to fight the battle in the end.
WWW
I also found Dupytrins and CLL to be concurrent.
How comforting to have a supportive site to reach out and learn if others are having similar physical disorders and that we are not imagining things or overreacting. There are too many “concurrent” coincidences. What did your doctor say gil?
Although I always have exercised (bike and treadmill), I had no idea that “Only exercise can properly oxygenate cells and move lymph efficiently.” Thanks to this piece of information (Waynewells) I just went online and read about the benefits of rebounding. I’ll be off to get myself a small trampoline and do less on the treadmill.
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