Secondary Cancers
Over the years I have lost many members / friends to secondary cancers. Several were killed by aggressive melanoma that rapidly became the hot button issue. One of our Board members with very indolent Bucket A variety CLL died of short fuse lung cancer. Another is dealing with ductal carcinoma of the breast. I even know one brave lady who has more than half dozen different secondary cancers, on top of the original CLL.
But poignant as they are, anecdotal stories like these do not make for robust statistics. Yes, our guys are more likely to develop secondary cancers, either because their genetics makes them more cancer prone to begin with (which may be why they got CLL in the first place), or the existence of CLL makes their wimpy immune systems less than capable of fighting off secondary cancers. Or the chemotherapy drugs they must use precipitates a secondary cancer. But from a patient’s perspective, the why and how is not as important as figuring out whether secondary cancers decrease our survival chances, whether they impact length and quality of life.
What is the Biggest Killer of CLL Patients?
It is my understanding that majority of CLL patients die as a result of uncontrolled infection, usually some sort of pulmonary infection. So, you can understand the title of the article below was like a kick in the gut. Second cancers are the most common cause of death in this large group of CLL patients? Dr. Clive Zent of Mayo Clinic is someone I respect a great deal. He is one of the authors of this article and therefore I read the article carefully. The abstract is given below. Send me a personal email if you want me to help you locate this article.
Leuk Lymphoma. 2004 Mar;45(3):507-13.
Veterans with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) have a markedly increased rate of second malignancy, which is the most common cause of death.
Kyasa MJ, Hazlett L, Parrish RS, Schichman SA, Zent CS.
Division of Hematology/Oncology, Department of Medicine, Central Arkansas Veterans Healthcare System, University of Arkansas for Medical Sciences, Little Rock, AR 72205, USA.
Abstract
Patients with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) have an increased incidence of high-grade lymphoid malignancy. The risk of non-lymphoid second malignancy in this population is not well-defined to date. To test the hypothesis that patients with CLL/SLL have an increased risk of second malignancy, we studied the rate of second malignancy in 132 CLL/SLL patients and compared it to the rate of malignancy (excluding non-melanomatous skin cancer) in the Central Arkansas Veterans Healthcare System population of approximately 38,000 veterans over a period of 11.5 years. The rate of second malignancy, diagnosed concomitantly or after CLL/SLL, and the age-adjusted rate of malignancy calculated from tumor registry reports and demographic data, were used to calculate a Standardized Morbidity Ratio (SMR) with 95% confidence interval (CI). Twenty-one (16%) of the CLL/SLL patients had second malignancies (19 non-lymphoid, 1 Richter’s transformation and 1 Hodgkin’s disease), which were fatal in 15 (71%) patients. The SMR for the CLL/SLL population was 2.97 (95% CI 1.84-4.55) for second malignancy and 2.69 (95% CI 1.62-4.21) for non-lymphoid second malignancy. This study of a well-defined CLL/SLL population shows a significantly increased risk of second malignancy, which was the primary cause of death for 9% of all CLL/SLL patients (34% of all patient deaths).
PMID: 15160912
Long term studies spanning a decade or more are very difficult to do. Patients move away, stop responding to questionnaires, get lost in the shuffle of life. Compared to most solid cancers CLL is slow paced, which means meaningful results can be obtained only in specific situations where the patient group is kind of locked in place and the researchers can therefore monitor them over many years.
This study was conducted over a period of 11.5 years, from 1 January 1990 to June 2001, using patients seen at the Arkansas Veteran Health Facility. As you can imagine, because of the nature of VA medical benefits, patients can be followed for many years without too many of them drifting away. Vets may also be more civic minded and willing to obey doctors’ orders to fill out questionnaires etc – I am guessing.
132 patients with CLL/SLL were compared to other veteran patients at the facility who did not have CLL. They looked for all incidences of second cancers, diagnosed at the same time or after CLL diagnosis. Cancers prior to diagnosis of CLL were not counted. Non-melanoma skin cancer (i.e., garden variety basal cell carcinoma and squamous cell carcinoma) were also not included in this study.
This patient group was not exactly representative of the general population. For example, all patients were male (duh, this is a veterans group, before women were routinely inducted into the armed services). They were a slightly older group, median age of 70 years (range 44 – 85 years) and many more of them were smokers than general population at that time period. Most of them lived in a geographically localized, largely rural (agricultural? farm chemicals?) area.
- 26 (20%) of the 132 CLL patients developed second cancers. There were a total of 29 secondary cancers since some of the patients were “doubly blessed” with more than one secondary cancer.
- The risk of developing a second cancer increased over time: 25% at the 6 year after CLL diagnosis, 38% at 9 year mark.
- Fifteen patients (71%) with second malignancy died during the study period and the most common cause of death (12 of the 15 deaths, a whopping 80%) were caused by their second malignancy.
- Here is a scary statistic: The median survival of patients with second malignancy was 9.9 months, counting from the time of diagnosis of the second cancer.
- Second malignancy was the most common cause of death in all CLL/SLL patients (34%) followed by progressive CLL/SLL (18%) and infection (16%).
The authors speculate about the reason why CLL patients were so much more likely (roughly three times more likely!!) to get secondary cancers than the general run of the mill veteran used as the control arm of their study. Possible explanations for the increased risk of second malignancies in CLL/SLL include clonal evolution, genetic predisposition, carcinogen exposure, acquired immune deficiency (HIV, AIDS), and the effects of treatment.
Some Questions Rising Out of This Study
OK, I can buy that long list of possible causes of secondary cancers. This was a meticulously conducted study, patients were carefully monitored and the data mined with a fine tooth comb for possible nuggets of information. But some questions remain in my head.
For starters, the authors point out that the incidence of CLL itself was higher in this veteran population than the general public. Whoa. Why is that? What sets these veterans apart from the general public? Could it have anything to do with their increased exposure to carcinogens? Yeah, these guys lived hard and smoked a lot. I don’t think there are too many people who argue any more about the link between smoking and cancers. Is that the reason why they saw an increased incidence of CLL in their group?
Or is there another carcinogen that these guys had been exposed to in the seventies, something called “Agent Orange”? Most of us who grew up during the Vietnam War era are familiar with this devastating chemical defoliant that was rained down on the forests of Vietnam. Only recently did the VA administration acknowledge possible link between Agent Orange exposure and CLL. As a patient advocate I was jubilant when the hard work of patient groups paid off and Veterans with CLL got full disability coverage for it, if they can show they had been exposed to Agent Orange. Please read this earlier article on our CLL Topics website if you want to learn more about it.
I wonder if any one has studied rural Vietnamese of that era, to see if there was a huge spike in CLL in that population as well. They surely were “exposed” to a lot more Agent Orange, by the bucket full. By the way, I am by no means convinced Agent Orange is the only carcinogen used in warfare. It is the only one I am aware of, for that time period.
OK, perhaps the higher incidence of carcinogen exposure (smoking and work-place related carcinogens) might be the reason for higher incidence of CLL in this veterans group. Could it also be responsible for many more secondary cancers as well as more aggressive secondary cancers? I have no way of sorting that out from the data presented in this study. If (and I am walking way out on to the plank here, people) the secondary cancers were also influenced by chemical exposure in this veterans group, then I can understand why secondary cancers were the single biggest cause of death. Not infection, not aggressive CLL, majority of these patients died of secondary cancers. And that, I think, is not the pattern seen in the general population of CLL patients. Something else seems to be going on here – but I could be wrong.
More studies are needed to sort out all this stuff. And it will take time, effort, good researchers willing to do the hard work, altruistic patients who are willing to stick with the program and provide information when asked to do so. But two take-home messages are obvious even from this study. Secondary cancers are scary stuff; anything you can do to avoid them is a very good idea. What are the usual culprits that might increase your risk of secondary cancers?
- Smoking
- Obesity
- Excessive UV exposure
- Poor diet with insufficient amount of fiber, micro nutrients not present in junk food
- Uncontrolled and chronic inflammation, which includes gingivitis and tooth decay
- Uncontrolled viral infections such as HPV infection we discussed in the previous article. HIV infected patients are at much higher risk of secondary cancers.
- Open sores that are breeding grounds for all sorts of secondary infections
These are all things you can do something about. None of them should come as a surprise to you, experts have been telling us about these risk factors for years now.
There are other risks that are not so much within your control. Baked in the CLL cake is the risk of hypogammaglobulinemia (reduced levels of immunoglobulins), increased risk of autoimmune disease, and dependence on chemotherapy drugs that can play havoc with your already messed up immune system.
Luck plays a big role on how much these risks factor in your individual case. In the final analysis, all you can do is to do the best you can do. After that, call it karma, call it fate, call it roll of the dice, what you will. My husband died because the roll of the dice did not work in his favor. It gives me some small comfort that we played the hand he was dealt to the best of our ability. No regrets on that front.
29 comments on "Impact of Secondary Cancers on Overall Survival of CLL Patients"
After contracting CLL in 1999, I was further surprised to be told of having an aggressive form of prostate cancer in 2002, then surgery for melanoma in 2005 caused me to look into the possible association of CLL and other cancers. At that time Chaya wrote back to me and said that there were definite indicators that this relationship may be the case. A short time later she produced evidence that there may be very specific types of cancers that are linked to CLL. Among them were melanoma and lung cancer at very high rates of association. I have since been screened for lung cancer at regular intervals and do regular monitoring for melanoma.
I sure do appreciate the information provided through CLL Topics, as I haven’t gotten this information anywhere else. I provided it to my Dr. who now lets his other CLL patients know about it as well.
Thanks again Chaya,
John Holman
Besides trying to prevent cancers, early detection and appropriate treatment are also important.
I noticed a lump on my neck — a swollen lymph node that led to my diagnosis of stage 1 B-CLL in February 1998.
In the spring of 1999, a Mohs skin cancer surgeon biopsied a pink spot on my skin that had developed a tiny brown center. The brown center was a pinhead-sized melanoma, whose removal caused my CLL to reverse course and begin smouldering. (Subsequently, I used to Internet and found an abstract from the University of Edinborough in Scotland about the relationship between CLL and melanoma.)
Last spring, a urologist noticed a suspicious increase in my PSA velocity (difference in prostate specific antibody values divided by the time between the measurements). A biopsy showed prostate cancer and I had my prostate removed robotically before the cancer spread.
Early detection via observations/medical procedures and appropriate treatment are very important! Improve your odds via cancer warning signs and screenings like blood tests and mammograms!
I would really like to see a study on the relation between FCR and secondary cancers and serious infections. It would probably be very hard to do and who would fund such a study? Over the years it seems like I have read hundreds of posts on various sites of people struggling with these 2 problems after FCR treatment. How we all long for a breakthrough in this awful disease.
Smoking & too much sun exposure after CLL diagnosis is really asking for trouble.
You need to know how many of the Vets are on disability for CLL. Reason being if they are and die within the first 10 years from CLL the spouse receives more benfites. If they die from some other cause they get zero. I have B Cell since Dec. 1998 stage 0. When I received the disability I started reading on the VA Agent Orange site and then the VA benifits. It is like most Gov. programs you have to read the small print. Not saying this has anything to with this study, but I bet the people doing the claims will have it to use.
Just last week my Dr. told me I did not have an increased risk for secondary cancers….. I know better. Thanks Chaya. Hope the packing is going well.
I am scheduled for a prostate biopsy in a few weeks, based on three above normal range PSA test results during the last 18 months.
I was diagnosed with CLL in 2007, and I am a US veteran of service in Vietnam in 1966-67. I currently receive VA compensation benefits because of the presumptive rewlationship between Agent Orange exposure and CLL. Prostate cancer is also on the presumptive list, so in my case a “double whammy” could be in my future.
Due to the slow developing nature of both types of cancer, how are we to know or determine which cancer came first. Is it solely based on which one was detected first? Does it really matter, if you have more than one cancer, which one is the secondary?
I am always appreciative of the information compiled by you Chaya, keep up the good work.
A good rule of thumb for CLL patients is to cut in half the normal cancer screening timeframes – 6 months instead of yearly for prostate, 6 months instead of yearly for skin cancer, etc. Exceptions can be made for X-rays or CAT scans which increase your radiation dose.
In terms of the study, I would be interested in a few things. First I’m assuming that the control group had about 10 people that contracted cancer since somewhere it was mentioned that there was a 3xs increase in the CLL group.
Then I would be interested in knowing what the percentage of those control patients were that died from their primary cancers.
I think those of use with CLL are open to secondary everything due to a dysfunctional immune system.
Terrific comments and discussion, I hope many more of you will participate in it.
Several of you made a very important point that I overlooked: regular screening for things such as skin cancer, breast cancer, prostate cancer and lung cancer. There is no doubt in my mind that your risk of secondary cancers is increased because of the underlying CLL. If your doctor tells you otherwise, he is misinformed.
But be aware that screening is worth the hassle and the cost only if the testing and data interpreting is done by a competent physician. Over the years PC was seen by several dermatologists. Some were excellent, some had no clue. It helps if you use only oncology dermatologists specializing in skin cancer, not the guys whose idea of a medical emergency is fixing sudden outbreak of a pimple on the bride’s face the day before the wedding.
The other problem is “silo mentality”. All too often CLL physicians do not know much about dermatology and dermatologists do not know about CLL complications. Half the time you as an informed and empowered patient know more about the connection between CLL and second cancers. It takes persistence and diplomatic skills to bring your doctors up the learning curve – but it is very much worth doing. You life may hang in the balance.
Chaya,
Very informative as usual.
I was diagnosed with CLL-1994, cll/sll- 1996
w&w for eight years.
1999 dx colon cancer-colon resection but no treatment. no metastasis.
I was told this was not secondary but another primary.
2002 began my treatment-R/F.
2009 R/L did not work.
Dec. 2009 currently R/B. Two more treatments end of April.
In March- macular degeneration and leaky retina. Probably not anything to do with CLL. Scar tissue from retina problem when I was about 34. and also age related. Jury may still be out on this one. I am getting treatment with injections to my vitreous. It’s working and Prayer helps. Many people praying for me. Also a most wonderful and talented retina specialist.
Rita
76 years old.
Thank you Chaya for all the very informative articles you provide.
Stay well,
Monique
Another sobering article, thank you. I had been slipping into a ‘she’ll be right mate’ mode, typical of us Aussies, worried that my previous concern as a Stage 0 CLLer was a bit over the top. I shall be more diligent from this moment on, promise. I’m 51 and about to be blessed with my first grandchild. I need to work harder on staying alive to enjoy his/her company, and that of her siblings and cousins to come!
As a CLL’er (2003) and a breast cancer mastectomy patient(2009)there is no doubt that this disease sets you up for secondary cancers for many reasons, most of which have already been mentioned here. Additionaly there was an article 3/8/10 with the names JC Byrd and JM Flynn attached that described the preliminary evidence that the presence of HPV in CLL patients appeared to have a correlation with the occurance of secondary cancers. NOTE: preliminary. I suspect when the day is done we will see that folks with complex karyotypes also have more secondary cancers. Early detection is key. I had a mastectomy but no chemotherapy for my BC because it was so very tiny. The other point of concern/conversation is “OK, I have a secondary cancer, under control (we think). Now my CLL needs treatment again. Which treatment path do I take?” Knock the CLL back and maintain as good an immune system as possible. There are choices but it gets to be more and more of a sticky wicket. Also interesting note: at Fred Hutch in Seattle they will typically not consider a CLL patient for stem cell transplant if you have not been clear of your secondary cancer for 5 years. Too risky.
Thanks Chaya…timely article for this CLL’er
yesmar:
You make some very good points – thanks.
In particular, I would like to flag your comments about secondary cancers and the complication this causes in making good therapy choices for controlling the CLL. A high impact and highly immune suppressive CLL therapy may not be appropriate, if it means it gives the second cancer a chance to grow and progress.
And yes, many transplant centers will hesitate to take on patients with uncontrolled secondary cancer on top of the CLL. During the early days after transplant the patient has next to zero immune system. The old one is gone and the new graft has not yet had a chance to establish itself. If there is an active secondary cancer, this is a terrific window of opportunity for that secondary cancer to grow unchecked.
I was thinking of you as I wrote this article. Good luck, my friend.
As a Viet Nam vet with CLL presumed to be from Agent Orange exposure I have been extremely disappointed by the doctors at the VA in Bath and Buffalo NY. I had one great PCP who left after one year and have been examined for skin cancer by a doc who was not very thorough. An oncologist at the Buffalo VA practically ordered me to get a CT scan that I had to get impolite in refusing before she backed off.
While I do not know if this is typical of VA hospitals in general I wonder how many early secondary cancers are missed through incompetence? While I believe I can detect gross incompetence regarding some doctors’ screening; I am not sure I would know when a dermatologist has done a thorough screening for skin cancer.
Your wondering about other sources of exposure to agents that may exist to a greater extent in a soldier’s experience as opposed to the general public is well founded from what I know. Garbage consisting of plastic items are often burned in open pits so furans and dioxin among other goodies are frequently inhaled. The oil fires in Gulf War One were none to healthy to be around and the ongoing controversy concerning depleted uranium exposure has a familiar pattern to the Agent Orange early denial of health risk by the Govt., just to name a few.
Sobering but needed info,
WWW
As a nurse in the VA system since 1973 I am certain the study group in this instance was not a good representation of the general population. However, we should do all we can to keep ourselves as healthy as possible including regular screenings and making sure our doctors are taking good care of us!.
In my case, it is probably too early to develop an informed opinion of the VA care I’m receiving for CLL. I’ve only been on disability since last November. But I have to agree with Waynewells that they can do some bizarre things.
I still don’t know whether Kaiser Permanente, Oregon Health Sciences University, and the VA hospital have managed to get my multiple biopsy results properly identified. So far they seem to be looking at different samples and arguing with each other because they think they are working on the same one. At my last visit, the oncologist practically announced a miracle cure and wasn’t going to look at my blood tests from that morning until I insisted we go over them. Needless to say, my Lymphocyte count was still climbing, so no miracle.
I hope to have a better idea after my appointment on the 29th about screening for secondary cancers, clonal evolution, etc.
Jim
I’m leaning towards a genetic predisposition to cancer of all types. My parents died of cancer – albeit at 74 and 80. My grandfather had neck cancer, a cousin had lymphoma. I was a non-smoking, fit and healthy eating 47 year old when diagnosed with Cll.
The diagnosis of late stage Colon cancer at 54 came as a shock. I was told that it was caused by my CLL. My prognosis was dismal, but I seem to be free of that , nearly six years later – fingers crossed for CT scan on Thursday. However the treatment for the second cancer has certainly changed the course of my CLL. The chemo made it more agressive. Also FRC is now too risky. I’m supposed to start Bendamustine soon, but I’m very reluctant.
I think the mix you mention: chronic inflammation, pesticides – I have always lived close to farms, viruses, all have had a part to play in my case.
A study of Cll in the Vietnamese population seems to be a good idea. Isn’t Cll rarer in Asian people?
Luck, as you mention, is I think , the biggest factor – my four brothers are all healthy, but my sister has had breast cancer at a young age – now in the clear.
I found the article very depressing – not your fault, I hasten to add. Surveillance, as you say, is the best defence.
Thanks again Chaya.
Mary Connell
Hi, Chaya: You mention that one should use oncology dermatologists as they are most familiar with dermatologic/cancer connections. I certainly agree that this is sound advice. Do you have any suggestions on how to find dermatologists that specialize in oncology patients? We live in southern California (LA area) and my husband is treated at UCSD by the very competent Dr. Thomas Kipps.
My husband is currently in a clinical trial at UCSD using Rituxan and Revlimid as front line therapy. He has had minimal side effects and seems to be getting a good response. Lymph nodes and spleen are now normal in size and WBC is w/in normal range. No infections or serious neutropenia. We will know more after he is done and has a bone marrow biopsy, but we are optimistic.
Follow up on Vietnam Vet – Waynewells comment.
I have had a great experience with the VA out West here in Portland Oregon and near by Fred Hutch in Seattle. Most of the specialized staff are dually seated with patients and duties with OHSU and the PDX VA. In fact the PDX VA is a center of research expertise for MS, my other Agent Orange condition and my VA oncologist is for my CLL is young, smart and has a special interest in CLL so when my first VA oncologist retired he immediately connected me with the new young reseacher/oncologist. My treatmennt is not always as I feel needed, but they listen real close to what I have to say, mostly because I sound smarter than am really are thanks to Chaya site here help me to better craft and focus my questions and suggestions in a way that makes it difficult for them to pass off as uninformed blatherings of a too sick patient.
I quess my point here is to say whether your lucky like me to be connected with progressive and research thinking medical staff or to be far from competent centers and need to be very and closly involved with diagnostics and treatment options. Each one of us can and must get involved with our own condition and treatment. To this end, WE CANNOT THANK CHAYA ENOUGH, for her writings making us all better patients and consumers and living longer as a result.
Frank Vietnam 1969
Here is a link to a report on second cancers among CLL patients that is based on data from the National Cancer Institute’s SEER cancer registries. The SEER program represents about 26 percent of the US population, so the information is much more generalizable than the VA data.
http://seer.cancer.gov/publications/mpmono/Ch17_Leukemia.pdf See page 3 of PDF
Chaya, are there any statistics and studies if CLL is the second cancer.
This is what scares me so much since I am a 14 year breast cancer survivor with a now compromised immune system. (I understand it was probably compromised back then when my white count on a good day was 2.5)It seems to me I’m more at risk for third cancers. It’s almost too depressing to contemplate either a new cancer or cancer recurrence. Being a survivor and active in a breast cancer list serve 12 years, I’ve seen a lot of bad things happen to people from the BC side of things.
Note to Rita & Cyaya,
I also had macular degeneration. They think it was caused by the ITP associated with my CLL. (My platelets were at 17,000 at the time). I had a vitrectomy of my right eye and luckily it helped a great deal. As a result After the vitrectomy I had monthly eye injections of Lucentis for the first year and now get them every two months. The injections seem to work.
Do you think your CLL my have also caused low platelets and subsequent macular degeneration?
Chaya, do you have any experience with this?
Cary
Cary:
CLL can definitely cause low platelet counts. Platlet counts can slowly trend down due to the bone marrow getting infiltrated with CLL cells and therefore unable to produce new platelets. The drop in platelet count can be much more precipitous if the cause is autoimmune disease (ITP). There are other reasons as well, and we detailed them in an earlier article titled “When platelet counts start dropping”.
But I must confess I was not aware of any link between low platelet counts and macular degeneration. Something I will add to my to-do list of research topics.
I am new to the CLL scene. I was diagnosed in March 2009 at the age of 29 (I turned 30 a few weeks later in April). From everything I have read, I’m pretty young to have this.
I did the W&W until September. At that time, my lymph nodes (neck region) increased in size and my fatigue increased in frequency. My doctor started me on FCR. I am pleased to say that after my last round in February(2010), I am in remission!
Needless to say, this article has me worried about the possibility of another form of cancer introducing itself to me. I am positive and will continue to be positive!
Thank you for all of the information you have put at our finger tips.
I was diagnosed with CLL in February 2006. I already had a healthy plant based diet and regular yoga practice. I added acai berry and green tea extract and regualr chelation therapy and was pretty much symptom free. I was introduced to Dr. Morales in Puerto Vallarta, Mexico where my daughter lives and where I vacation every winter. He uses immunotherapy, a process of using the body’s own immune system to fight the disease. I was not experiencing symptoms so I was in no hurry for treatment.
In August 2009 I was involved in a major auto accident and although I escapted major injuries it was very stressful. I started having symptoms related to the CLL, beginning with significant swelling of the neck, night sweats, fever and bone aches and just not feeling well. My white blood cell and lymphocyte count increased and my red blood cell and platelets decreased and my oncologist started talking chemotherapy, which I never considered an option. Instead I decided to begin the treatment offered by Dr. Morales.
I began the treatment December, 2009 and after two and half weeks of immunotherapy with virtually no side effects my blood count was normal, except for a low red blood cell count which with attention to diet is no longer a problem.
A note of interest is that I had beginning melanoma over 10 years ago and have had regular checkups with my dermatologist. Usually there are atypical moles that have to be watched closely or removed for biopsy. On January 21, 2010 my dermatologist saw no moles with problems and noticed several moles were beginning to fade away. There may or may not be a connection to the above treatments for CLL.
I believe the treatment was the best possible alternative to chemotherapy without all the side effects of chemo. My oncologist at OHSU was surprised with the results and when I asked what treatments he could give with similar results he said a bone marrow transplant where about 30% of the patients die.
I am very grateful to Dr. Morales and his wonderful staff. They have given me my life back.
Chaya, thank you for this important information on secondary cancers in CLL patients. Most evident is that CLL patients have no immune system after chemotherapy. What can the patient do to boost his or her immune system to ward off secondary cancers and/or bacterial infections? The Japanese are great believers in using mushroom extracts – Maitake, Shiitake and Reishi, to boost the immune system, yet I have seen no reports that it works. Would you put this in the category of “wishful thinking” or is there some validity for using mushroom extracts?
Makato:
Until and unless I see well controlled and credible clinical trials reporting on the efficacy of mushroom extracts in peer reviewed journals, I continue to put them in the wishful thinking category. Sorry to be a party pooper :)
There is also another concern. CLL is a cancer of the immune system, the B-cell component of it. Do herbal or other alternate therapy approaches boost all aspects of the immune system, including the CLL cell population? That is hardly what we would want. Selective modulation of the immune system is being studied in clinical trials. One example is Revlimid (lenalidomide) that boosts T-cell and NK-cell populations and their efficiency, while increasing the kill rate of CLL cells. There are no short cuts I am afraid. We need to conduct credible clinical trials if we are to find better therapy options and not shoot ourselves in the foot by trying unproven stuff.
Just my two cents.
Hello all- I am new here and looking for info for my Mom who was diagnosed with CLL about 5 yrs ago and was treated for it- but unfortunately now were getting ready for an open lung biopsy as scans showed quickly growing masses in her lungs.. I wish you all the best- I thank you for Shari g your knowledge – my prayers go out for you. – you are all very strong people!!
Mercedes
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