CLL and H Pylori

[bendintheroad1]

I have only just become aware that studies have shown a connection between CLL and H Pylori. I was diagnosed and treated for H Pylori in 2007 and 2011, and then, later in 2011, I was diagnosed with CLL. I had chemotherapy for the CLL in 2017, and have been in remission since. I am 76, and H Pylori has never ever been mentioned to me during the course of my treatment. As my last bloods showed a slight rise in Lymphocytes out of the normal range for the first time since 2017, I'm wondering whether, in light of this new H Pylori knowledge, I should ask for a test for H Pylori?

[AussieNeil Partner Administrator]

I can't find mention of more than a suspicion that H pylori might be implicated in the development of CLL, so I'm not surprised that wasn't mentioned during your treatment. Do you have any relevant references?

If you are concerned that your CLL remission may be ending, an immunophenotype flow cytometry test is what you need to check if this is the case.

Neil

[jj411 in reply to AussieNeil]

Most of the links including my own were believed to have the EBV component somewhere in the equation. The same has been shown for all of the autoimmune disorders. If I remember correctly it was a scientist out of Germany that discovered the link with over 95% of CLL/SLL patients in their study being exposed to EBV either through knowledge of Mono or numbers.

Thanks,

Jack

[Smakwater in reply to jj411]

Co-exsistence is the term that I see common in the measure of EBV and H pylori. In a conversation with a CLL specialist having a study background in EBV, the specialist stated that it is highly speculative that these pathogens may be passengers rather than drivers.

Although indirectly relative here is a publication suggesting a like co-existence. Try to get past the term non malignant in the title in order to absorb the relevant information.

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

Key phrases - "associated with the development of" "may be implicated in the carcinogenesis process", and "chronic inflammation is an initial step in the development of".

JM

[Vlaminck in reply to jj411]

A strong EBV reactivation directly handed me over to CLL. Within months, and it has reoccured since diagnosis. I am having a bit of a challenge getting my docs to accept what I believe is the connection and/or significance, but my own personal focus supplement-wise has become on EBV reactivation, since I believe it and my CLL are in bed together. Such phytonutrients as apigenin and lutein fight reactivation of EBV, for example, so I take those, plus monolauren.

[jj411 in reply to Vlaminck]

Vlaminck,If it wasn’t for my GP trying to figure out why I was tired and no real blood markers she said her last resort would be for a mono test. It came back as a recent infection so off to an infectious disease Dr I went. She stated the same as the study as it all begins with EBV, Herpes Simplex 4. When mine reactivates my upper lip feels like someone popped me and it feels swollen but isn’t. She also told me don’t be surprised if I start to get a side symptom or RA, MS, Lupus or the other auto immune diseases. I was later diagnosed with CLL. Now in treatment with V&O. x8 cycles.

Jack

[Vlaminck in reply to jj411]

Sorry to hear that. Since EBV attack isn't a one-time thing, you might look into apigenin and lutein (there are other things too) that actually help fight reactivation -- because the damn viruses (viri?) when activated (rather than latent) agitate our Bcells which are already out of whack with CLL.

[jj411 in reply to Vlaminck]

Vlaminck,I will ask. Tks. Jack

[Vlaminck in reply to jj411]

I wouldn't bother asking a doc. They generally poo poo any nutritional remedies, and never ever study them to my knowledge (I think docs get a 20 minute speed course on nutrition in med school).

[AussieNeil Partner Administrator in reply to Vlaminck]

How much training on a topic someone gets when studying for their degree (which could have been decades ago), is way less relevant than whether their education has given them the ability to search out and discern the applicability of research from reputable sources, supporting the use of (for example) nutritional remedies. That information should include recommendations on dose and possible interactions with other drugs the patient may need to support their health. (The latter is why we should ask our doctor or pharmacist about the advisability of taking a supplement - and why our medical history is relevant).

You would also hope that your doctor keeps across recent developments as part of their professional development, which is usually a requirement for their continuing membership of a professional body.

With respect to EBV, apigenin and lutein, this is what I could find:-

pubmed.ncbi.nlm.nih.gov/280...

ncbi.nlm.nih.gov/labs/pmc/a...

Note, just studies on extracted body cells or mouse studies, not human trials.

Neil

[Vlaminck in reply to AussieNeil]

You are right -- since Jack is getting treatment, he should tell or ask doc about supplements. But the expected reception stands. Hope Jack will let us know how his questions were received. My sarcastic comment on docs studying nutrition is because my experience here with US doctors is that they are simply not that interested or even definitely disinterested -- in part possibly because schools have taught them it's not important. Maybe that has finally changed--? Some supplements can interfere with medicines, just like grapefruit can (how many doctors bother mentioning that? some maybe?). My oncologist has never mentioned green tea or curcumin nor have I though I take them. Maybe I will do so next visit--just to see. My husband's oncologist was wonderfully unique and, yes, we would share supplement info with her, and she was so special she even looked up one (turkey tail) because she had cautioned against mushroom supplements (unlike CLL, he had more normal cancer for which many supplements, like turkey tail, can reputedly be helpful).

[jj411 in reply to AussieNeil]

Neil,

Thanks and how true it is. My sons a DR and everything in medicine is too super specialized today in the US. I get another gazyva infusion late next week and I will ask my hematologist oncologist about the whole thing. I think for me it correlates to my low immune system or just anemia.

Thanks

Jack

[Fran57]

Hello. I’m afraid I don’t know the answer to your question, but my husband ( who is the one with CLL) was also diagnosed and treated for Helicobacter Pylori years ago. I seem to remember it was a very heavy dose of antibiotics.This has never been mentioned during either of his CLL treatments, but maybe there is a link.

Stay safe,

Fran 😷

[Izzy123gym]

Interesting! I too was diagnosed and treated for Heliobacter Pylori in 2018 and again in 2020; I was diagnosed with CLL in August, 2021.

[shornoff]

I took part in an H. Pylori trial in the 80's. I was a good candidate as I spent 9 years of my school life sleeping in dormitories, however, I was turned down as I had no H Pylori. I was diagnosed with CLL in 2017.

Not exactly conclusive but...