Hi all,
I was intrigued by this article: Case Report of Unexpectedly Long Survival of Patient With Chronic Lymphocytic Leukemia: Why Integrative Methods Matter ncbi.nlm.nih.gov/pmc/articl...
Has anyone explored this? I have found that my labs improve following periods of intense exercise. I wonder if anyone has tried supplements? Or worked with an integrative doctor?
Wishing everyone well.
Questions about this case report surface fairly regularly, but sorry, I couldn't find where it's been previously discussed. (Case reports are very low on the pyramid of evidence - see attached diagram. Further, I agree with SofiaDeo , that this article is "simply a poorly written persuasive argument", rather than a properly written case study report. healthunlocked.com/cllsuppo... )
Briefly, it's obvious that the integrative clinic from where this case study originated, has very little medical knowledge of CLL as SofiaDeo has highlighted in her reply below. (Years back, when I checked the background of this clinic's medical staff, none had any haematological expertise and the report was written by a "current student" at the medical center concerned, which explains his not using the usual report format for CLL test results.) Tellingly, when you read the case study, the author states "A number of prognostic markers are used in tracking the progression of CLL, including lymphocyte doubling time, level of immunoglobulin variable region of the heavy chain variation, CD-38 expression, Zap-70 expression, β-2-microglobulin levels, and serum CD-23 levels.". Sadly, none of those prognostic markers are reported for the case study patient! It's well known that about 30% of those diagnosed never need treatment, so without knowing these prognostic markers, it's not possible to guess at whether this patient is likely to have done any differently if they hadn't attended this clinic. You really need a sufficiently large number of patients who are randomly assigned to this type of intervention or a control arm to know whether there is statistically any advantage.
Per the Evidence Pyramid, systematic reviews provide the highest level of evidence. Even Randomised Controlled Trials come in around the middle of the pyramid. See more about why randomisation is so important in this post: healthunlocked.com/cllsuppo...
I've collected the evidence behind supplements recommended for CLL in my replies to this post on navigating integrative cancer treatments: healthunlocked.com/cllsuppo... General medical doctors (GPs and PCPs), do try to provide integrative medical care, recommending vaccinations, blood pressure and weight management, basic dietary advice, maintaining fitness and mobility and so on, but there's a huge market that claims to address the perceived gaps in standard medical care. It's very important to appreciate the difference between complementary care (things you can to to improve the outcome of treatment regimes and your quality of life), with alternative treatments - something done in place of evidence based treatment protocols. In between, there's this confusing and overlapping world of integrative, holistic and functional meducine approaches, not to mention the wellness industry.
When we have cancer, the evidence is best by far that exercise provides the most benefit.
healthunlocked.com/cllsuppo...
Neil
Great and well thought out observation on your part. The accompanying links are super as well.
Thank you for your reply
Excellent graphic
I've worked with an integrative physician. I got interested when having a Doctor of Oriental Medicine neighbor got me fibromyalgia relief. He mainly wanted dietary changes, in addition to supplements. I already exercised so that issue wasn't recommended for changes. Yoga & meditation were recommended & I do think help de-stress me personally. There are various "integrative medicine" journals online. This ones' website is in a link with 2 other journals, and I am not putting it here because the website is not secure, like the American Society of Hematology and other Western medical sites I put links out, are.
I first noted this article did not follow standard guidelines for case reports, even though the author referenced them. I do not think this article was a "case study", it was simply a poorly written persuasive argument.
ncbi.nlm.nih.gov/pmc/articl...
Regarding this case study, the problem of trying to make a persuasive argument with "case reports", especially when the patient is changing multiple variables, is that this is a single instance of something. In addition to the way the (apparently cherry picked) diagnostic data & use of references was presented, when one changes multiple things in even a single individual, it's hard to say what any changes that happened, are due to which change. In medicine, which uses statistical science to "conclude" things as scientific fact, certain criteria need to be met. This is the basis for scientific fact in any science, not just medicine.
My biggest critique of this arguement, is that the Conclusion seems to be written incorrectly. When trying to write a persuasive argument, one uses a single conclusion section, not several. This paper has 2, and the conclusion is co fusing to me. The first "Conclusion" which is 2 sentences, should have been a single sentence in the second "Conclusion" section as a supporting statement for the (from what I am interpreting as the author's intent) actual conclusion along the lines of "integrative therapy should be available to more patients". Yet there are statements along the lines of "physicians should be prepared to discuss these treatments" so I am unclear as to the actual conclusion. Since the title refers to "unexpectedly long remission". And since the title should also reflect what is to be discussed, there's more information missing in the article, based on the title. Where's the discussion of this patients "unexpectedly long survivial"?
This format is odd to have in a Case Study. A Case Study generally just presents details of a case, it doesn't have sweeping conclusions (see first link) So I think the title is misleading, and shouldn't contain the other claims, if it's just a "Case Study". The title refers to "unexpectedly long survival", which should have been addressed in a report that wasn't just a "case study", but would be in a persuasive argument format. So the title was confusing. This appears to be a persuasive argument format in favor of integrative medicine, but if that is the case throwing in the "unexpectedly long survival" and "case study" in the title is confusing & contradictory to standard scientific & technical writing format. This was published in a journal that seems to be various practitioner opinion pieces and informational articles.
Some of the statements seem convoluted/not following expected report format. I have never seen a FISH reference like "FISH was also performed, which showed normal CCND1-IgH, ataxia-telangiectasia mutated, chromosome 12, 13q, and TP53. " There's all this reference to "WBC" and in the CLL world, the literature generally refers to lymphs. A standard patient presentation gives both commonly assessed positive as well as negative findings, not just a few select ones. The reference list is not the most recent.
So I think this was a poorly written article, even though I agree "integrative treatments should be available to patients." I even wonder if it's an AI generated thing.
I do think optimal diet, exercise, and other changes can affect many diseases positively, not just CLL. I use some supplements, and the big caveat with them IMO is you ideally do some research to verify quality control of the product. There are quality companies, they do quality testing and will provide information if asked. Since email is free, this is now pretty easy for the good companies to provide. And a number of them even have scannable QR codes to verify provenance.
Whether or not you want to try to implement multiple changes like this patient, please discuss it with your provider. In the US, some of the larger cancer centers have integrative departments. If you don't have one nearby, maybe the nearest ones can recommended places to find local integrative practitioners.
I was given a poor prognosis in January 2008, unmutated, Zap 70 positive. I made a lot of the changes written about in this paper, but used more whole food sources than supplements. But in general I agree with the things this woman tried, I have found them helpful myself. I am still watch and wait, and at my last couple of checks my white cell count was almost normal. It had been as high as almost 70K at the start. So please, if you are inclined, read more about the effects of food on your health. It has worked for me. I wrote more about it in my profile because when I write comments here it tends to be discouraging. Best wishes!
amen! nice to hear from someone on this. Has helped my husband for sure with eating and supplements. But you can not talk about it on this site. it is always shot down . Thanks for the effort.
Thank you
You supplement stuff you are deficient in. So the question is what you are deficient in and why. Example: vegans supplement B12. Those who have enough of it in their food, don't need to supplement it. I supplement potassium and magnesium because I'm a carnivore. Others might not need to supplement these depending from how much they ingest in their food.
when first diagnosed my oncologist said continue my exercise routine, avoid processed food and sugar. i believe in general a healthy diet followed with an exercise regimen that fits your age/health will always be good for whatever you have wrong with you. i am not saying it will cure CLL or any cancer but generally speaking living a healthy life style will never hurt you only help. i am 54 currently i weight train a minimum of 3x per week, play basketball once every other week, play golf once a week weather permitting and do my best to have a healthy diet (due to work and wacky schedule this is the hardest part, not perfect but i make a good attempt ) also i take on the daily vit C, D, k2, E(fish oil/omegas) quercetin, creatine, and greens/immune supplement. again i don't expect this to cure me and i was dong this before my diagnosis but even if it doesn't help with the CLL it defiantly helps with your over all health
My 2 cents.
Referring to Neil's graphic in this post, lots of studies out there are small and initial. Many of these will report a finding, like "the study observed like patients sing better when ingesting 500 grams of chocolate covered nirvana". Supplement manufacturers grab that very preliminary finding and tag all their products with chocolate covered nirvana with "backed by science" statements. When working up the pyramid in Neil's graphic, most of these findings are fail to meet scientific scrutiny, like most didn't work at all, or some worked but to such a low degree it isn't worthwhile, or the rare, it works.
I've looked at more than a few supplements, none have made it to "it works." The only worthwhile contender at the moment is vitamin D. Yup, same as you find in a multi-vitamin. Taking too much is bad for you. The study identified a delay in the TTFT (time-to-first-treatment) for people who maintained a normal vitamin D level. Link below. These are but observations interesting and worthy for a bigger better study. So, to be clear, we might have a contender, but as of yet there is no proof it is the agent giving the favorable finding. This study may have made errors or missed something in analysis. What is does say is they've found something interesting worthy of a more in-depth study (read money and scientist time).
Anyway, I've adopted the vitamin D recommendation and practice it. Mainly as it's such a low cost, not specific to any manufacturer, and it's something I would do anyway, but now I'm a bit more zealous to ensure I get my RDA of vitamin D.
academia.edu/16250967/Vitam...?
A great resource on supplements is examine.com. They're funded by subscriptions rather than supplement sellers. They cover supplements in general, for everything, leg cramps, acne, etc. They list a supplement, what it's been suggested to do and then rate it based on efficacy and magnitude of impact, plus links to the studies. I've not seen any supplement on Examine.com worthwhile for CLL, and I've looked. Once you take a good look through this website, you'll be fairly convinced that the claims a supplement seller makes when advertising are fraught with hooey gooey spitooey.
Lastly, supplements are not drugs. Many do not act immediately. I take a supplement for something other than CLL, and it takes a good week to feel the effects, but feel the effects I do. Swear by the stuff. The supplement marketplace though is still very much caveat emptor. Thx
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