Case Report

[Rando21]

I came across this interesting case report today. Basically looking at lifestyle changes of a patient who lived an unexpectedly long time. I have already heard about most of these options but thought I’d share it anyway. I did notice she took NAC which I’ve been apprehensive of out of fear of further mutation. I know sometimes it can be hard to come across these types of things.

ncbi.nlm.nih.gov/pmc/articl...

[Jm954 Administrator]

This isn’t as unusual a case as you might think. Approximately one third of CLL patients never need treatment irrespective of diet, lifestyle or supplements. Jackie

[Rando21 in reply to Jm954]

That is such good news. My main concern at this point is keeping it as CLL no RS or a secondary cancer.

[AussieNeil Partner Administrator]

Hi Rando,

It's not the first time this article has been discussed in our community, but due to HealthUnlocked's limited search capabilities, I can't find the previous post. Frankly, it's a pity that this case study was ever included in the NIH resources, because it is thinly disguised advertising for an integrated medicine clinic, where one of the authors (the MD) is the director and the MS author, was "a current student at Drexel Medical center" when he wrote the case study, but no longer works at the clinic. The clinic doesn't claim to have any expertise in cancer. There is no mention of oncology, let alone haematological expertise mentioned in the clinic's service provider's backgrounds. That's quite obvious to anyone who knows anything about CLL on reading the case study. Statistically, you simply can't argue for a case study patient living an unexpectedly long time as being due to the services provided by the clinic. Statistics are only useful for predicting the median life expectancy of groups with different markers. You'll often see mentioned in our community the rule of thumb that about a third of those with CLL never need treatment, so to be convincing, the case study really needs to show that the patient had a form of CLL not conducive to a long life expectancy and defied the odds. The case study even notes in the discussion section introduction that "There are a number of individuals whose CLL does not progress to the point of requiring chemotherapy."

The telling factor showing how poorly this study performs in trying to argue that lifestyle changes could have had any influence on the case study subject, is that the study paper notes correctly that "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." It then reports regarding the case study subject, "A flow cytometry report showed the presence of a monoclonal B-cell population, which variably expressed CD19, CD20, CD11C, CD23, and aberrant CD5. The report also found a positive but dim population of kappa molecules. FISH was also performed, which showed normal CCND1-IgH, ataxia-telangiectasia mutated, chromosome 12, 13q, and TP53." That's not how someone familiar with CLL prognostic markers typically reports these results. You'd say that the patient had a normal karyotype and normal (or unmutated) ATM and TP53. CCND1-IgH is used to differentiate Mantle Cell Lymphoma from other Non Hodgkin's Lymphomas, such as CLL. All this confirms is that the subject did have CLL with a normal karyotype. Being 13q del could have improved the study subject's likely life expectancy slightly, but they didn't have any poor prognostic markers in what was disclosed. Critically, despite mentioning the importance "of immunoglobulin variable region of the heavy chain variation, CD-38 expression, Zap-70 expression, β-2-microglobulin levels", these weren't tested. Why not? Now if the case study subject was CD38 or Zap-70 positive, or was unmutated IGHV, or initially had a high β-2-microglobulin level, which was observed to fall after intervention, then this case study might be more interesting. Note that the study includes a plot of the WBC, not the more accurate ALC, which also follows one of the recognised patterns over time; stabilising after a growth phase. There's also a 1% occurrence of spontaneous remission with CLL, without intervention, which the subject did not exhibit.

Importantly, a CLL diagnosis is a wake up call for many of us to re-evaluate how our lifestyle may be adversely impacting our health. It's common to re-evaluate our diet, sadly less often for us to re-evaluate how we can maintain or improve our physical fitness, which can greatly improve our quality of life and life expectancy: healthunlocked.com/cllsuppo...

You'll find plenty of other good advice on what we can do to improve our quality of life and life expectancy with CLL in our pinned post section here: healthunlocked.com/cllsuppo... These pinned posts in particular are good starting points.

Tips for living well with CLL

healthunlocked.com/cllsuppo......

With a CLL diagnosis, knowing more about your immune system could save your life!

healthunlocked.com/cllsuppo...

Good article on navigating complementary cancer treatments

healthunlocked.com/cllsuppo... (In my maintained long reply to that post, I provide references regarding the evidence for regularly recommended treatments offered by integrative health centers.)

Neil

[Rando21 in reply to AussieNeil]

Thanks Neil. You are always extremely informative and I do appreciate the education and direction.

[Hidden in reply to AussieNeil]

Nice work Neil and hope you are well~

[blowinginthewind]

Having looked at the list of vitamins this person was taking, I would like to caution about the risks of high levels of vitamin E, I can't remember what they are, but it important not to take to many. I suspect that applies to other vitamins as well. Some years ago I used to work at the cancer centre where I now work - not in a medical capacity. Complementary therapies, then called Alternative therapies, were comparatively new, and there was a lot of information around stating the various topics including taking a lot of vitamins and a lot of herbal remedies. By a lot I mean in some cases people taking massive doses. The message then was "ask your doctor before you try anything unusual". Some things are fine and some aren't.

[Rando21 in reply to blowinginthewind]

I had to dig but I think I found a study which your reply reminded me I read some time ago. This is a study on vitamin e. And if I understand it correctly it’s best to get vitamin e from your diet rather than a supplement as the supplements typically have only one form of vitamin e, α-Tocopherol, a healthy diet contains 4 types of vitamin e in ratio that actually promotes health.

The article is linked bellow

See sections titled : “Intervention Trials with α-Tocopherol” & “Inhibition of Tumorigenesis by Mixtures and Single Forms of Tocopherols in Animal Models”

cancerpreventionresearch.aa...

[blowinginthewind in reply to Rando21]

Thanks Rando, useful to know. I have vitamin D daily and injection of B12 every 12 weeks. and all the rest comes from food.

[Rando21 in reply to blowinginthewind]

There is some concern that high doses of B-12 can be linked to lung cancer. I do not want to scare you but it would not be right not to warn you. After I learned this I dramatically cut back on my B-12. I take baby B-12 supplements with comparatively low amounts of B-12 to he safe. (like 166% or less)

Here’s a study and article:

ncbi.nlm.nih.gov/pmc/articl...

cancer.osu.edu/news/long-te...!

[AussieNeil Partner Administrator in reply to Rando21]

Some of us have difficulty absorbing B12 from our diet due to the lack of intrinsic factor in our digestive system preventing absorption. Hence the need for B12 inhections to overcome the deficiency.

[Rando21 in reply to AussieNeil]

Oh ok. I’ve seen B-12 offered at health spa’s and though that might be the reason. I’d assume it’s safe with a doctor but I question injections at spa.

[blowinginthewind in reply to Rando21]

Thank you for warning me; I am coeliac and don't absorb dietary vitamin B12 effectively. When I was tested my level was very low, and I have the injection every 12 weeks. It makes a big difference to stain and brain function. I don't take oral B12 tablets, because my system won't absorb them. That said, I do know people who misuse them badly - injection from GP, privately and also oral, getting a massive amount.

iz

[LeoPa]

Animal proteins have nothing to do with inflammation, especially not the wild caught, grass-fed, free range variety. Fruits on the other side, do. Organic or not. Omega 6 fats do not need to be supplemented. They are ubiquitous and their consumption needs to be reduced for most people. That includes vegans cooking on safflower, sunflower, corn etcetera oils. Omega six fats are highly inflammatory. Other than that the described intervention resembles a healthy diet which would provide all of these supplemented items without having to be taken as supplements except for the egcg maybe. In case you would like to know more about how to eat right to stay healthy and why exactly to eat like that for what it's worth I recommend reading METABOLICAL, by Dr. Lustig.

[SofiaDeo in reply to LeoPa]

I disagree, the levels of arachidonic acid in feedlot beef is twice that of the grass fed, and likely contributes to inflammation. So I wouldn't say "animal proteins have NOTHING to do with inflammation." IMO a big problem with our food supply is it's changed from what we evolved on. Wheat was hybidized, and that hybridization increased the gluten content. Feedlots for animal husbandry became the norm. Not to mention GMO's. And don't get me started on the man made toxins in the environment that are now in the food chain....

[LeoPa in reply to SofiaDeo]

That is true but it is not the animal protein that is the problem. The problem is that the meat has been bastardized by what they feed to the animals. That is why I mentioned the grass-fed, free range and wild caught variety.

[SofiaDeo in reply to LeoPa]

Oh I agree, but I also insist that not every single person does optimally on a keto type diet, avoiding all grains and fruits. We are omnivores, and the various racial types evolved characteristics to optimize life in whatever geographic zone their population was evolving in. As our genes have mixed with modern life, that mixture means no one diet specific to a region is likely to be optimal for that person. I do believe the "best diet" is one found by sampling a variety of Real Foods. While recognizing that people who are able to thrive on modern, changed food sources are also more likely to live longer/procreate. For me, this is "moderately low carb" but not full blown keto. Perhaps as I move further away from how the ibrutinib affected my gut, I can eventually eat differently, since what I ate during the "ibrutinib time" was much different that at any other time in my life, and was based on what made me feel OK without keeping me near a bathroom. I am so sensitive now to certain chemicals/preservatives, I get GI upset/gas before ingesting enough to set off the migraines & muscle spasms of my fibromyalgia. And items that are "borderline" merely give me really stinky gas. My gut still isn't what I would consider "normal" and I bet it has changed permanently, unless I can get some time off of the various meds I now have to take. Who knows, maybe not even then. I'm also older, and our gut changes as we age, so there's that too!

[LeoPa in reply to SofiaDeo]

I didn't mention keto this time, did I 😉. The book is all about balanced real food. Plus lots of knowledge about what is harmful and why, what is healthy and why.

[johnliston]

You also better keep an eye one your liver if your going to take all those supplements

john

[Jmiah717]

I've gone 14 years with no treatment and I have unmutated IGHV. I take some of the supplements listed such as NAC but that is a new thing for me. Mostly, I would say that I have done nothing to make this occur except learning to live with some of the issues CLL has caused. I'm young like you, 26-27 at dx. 40 now. I wish you well.

Jeremy

[Big_Dee]

Hello Rando21

I tried just about every supplement after first being diagnosed, unfortunately none of them stopped or slowed my aggressive CLL. I then found this website 6 months after being diagnosed and determined I would be much better off finding a CLL Specialist and being tested before any supplements. Now in remission and don't know what NAC, is so feel great.

[SofiaDeo in reply to Big_Dee]

NAC=N-acetylcysteine, the glutathione precursor:

pubchem.ncbi.nlm.nih.gov/co...

[Mandy56]

The big point, for me, is that oncologists and indeed all doctors have little or no training in how food affects us. We all know too many burgers are bad, but it’s the other things we should be eating, but often don’t, that can improve our health. That is where more research is needed.

[HowardR]

I just read part of a study which claims that NAC kills CLL Lymphocytes:

ncbi.nlm.nih.gov/pmc/articl...

The title is: "N-acetylcysteine Can Induce Massive Oxidative Stress, Resulting in Cell Death with Apoptotic Features in Human Leukemia Cells." The extract points out that NAC is especially powerful at killing the bad CLL cells when there is extra-cellular SOD present.

I looked up SOD and found that EGCG (green tea) and curcumin (Turmeric) both encourage the body's production of SOD. (I already take EGCG with lunch and curcumin with breakfast and supper.)

So, if you, like me, are at the "Watch and Worry" stage of CLL, you might, indeed want to consider taking NAC, especially if you are already taking EGCG and/or curcumin supplements, because NAC could possibly make those supplements more effective. (I just started taking NOW's NAC - 600 mg - purchased from amazon.com.)

And, if that case study you cited proves to be generalizable, NAC could possibly help people, in general, live longer.

[AussieNeil Partner Administrator in reply to HowardR]

Please quote from your reference accurately - there is no reference to CLL in the study you mentioned. It states, with my emphasis, "In conclusion, NAC can induce massive production of O2•− in both, promyelocytic leukemia HL-60 and histiocytic lymphoma U937 cell lines. O2•− itself does not induce the cell death. Its conversion to hydrogen peroxide by SOD is a necessary precondition for this."

With a quick internet search you'll find that human promyelocytic leukemia HL-60 is of the "granulocyte/monocyte/macrophage lineage" and that " U-937 is a cell line exhibiting monocyte morphology that was derived in 1974 from malignant cells obtained from the pleural effusion of a 37-year-old, White, male patient with histiocytic lymphoma."

Both of these blood cancer cell lines are from the myeloid stem cell line, which produces red blood cells, platelets, monocytes, along with the granulocytes, neutrophils basophils and eosinophils, not lymphocytes.

Further, the study you cited is an in vitro study;"Human promyelocytic leukemia HL-60 and histiocytic lymphoma U937 cell lines were cultured in the RPMI-1640 medium supplemented with a 10% calf fetal serum and antibiotics in 5% CO2 atmosphere at 37 °C.". That's a far cry from establishing whether it is possible to achieve a safe dose of NAC and an associated means of generating a sufficiency high enough level of SOD to kill cancerous myeloid cells, without adversely affecting the healthy ones you need to stay alive. Remember that all approved CLL treatments also unfortunately kill healthy B cells...

Neil

[HowardR in reply to AussieNeil]

Thank you, AussieNeil, you are correct. NAC was successful with killing leukemia cells (not CLL cells) in this study which was done in the test tube, not in people.

I hope that a study using oral doses of NAC for people with CLL will be conducted soon. I am especially hoping that such a study would include a condition which combined NAC supplements with EGCG or curcumin supplements.

I am not as worried as you about NAC's safety. The first paragraph of this study suggests that safe and effective dosages of NAC have already been established for treatments of several diseases:

"[NAC] is successfully used to treat paracetamol overdose, acute heavy metal poisoning, chemotherapy-induced toxicity, ischemia-reperfusion cardiac injury, diabetes, neuropsychiatric disorders, and many others. NAC also exhibits beneficial immune-modulation activity in patients with HIV...."

[AussieNeil Partner Administrator in reply to HowardR]

Thanks Howard. You are right in desiring "that such a study would include a condition which combined NAC supplements with EGCG or curcumin supplements." as the study noted that "O2•− itself does not induce the cell death. Its conversion to hydrogen peroxide by SOD is a necessary precondition for this." That's also why I said, in full, "That's a far cry from establishing whether it is possible to achieve a safe dose of NAC and an associated means of generating a (correction) sufficiently high enough level of SOD to kill cancerous myeloid cells, without adversely affecting the healthy ones you need to stay alive."

It's the combination of NAC and SOD producing the oxidiser hydrogen peroxide which proved deadly to the study cells, not the O2 produced by NAC.