NEW CLL Member Needs Updates! - CLL Support Assoc...

CLL Support Association
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NEW CLL Member Needs Updates!

New addition to the community! Am 62, a type-1 diabetic with recent diagnosis of CLL. Had a bone marrow biopsy showing 75% affect on white blood cell production. Current #s of white counts are 17 - 20K. Red platelet counts are 60 - 100K. In a "wait & see" mode ordered by the Dr's locally & @ the Mayo Clinic in Phx. NO therapy ordered to date. Trying to "guess" my future plan needs for treatment. Have an excellent Dr friend who shared w/me the GcMAF info, but did not know or make claims to its effectiveness with CLL. Please update me as to this &/or biologicals currently being dispensed on this condition and whether or not biologicals are better than any type of Chemo.

Sincerely - Floorfax

5 Replies

Welcome to our community Floorfax!

Mayo Clinic in Minnesota have a long and illustrious association with improving the treatment options for those with CLL. Other members would be able to better inform you how well that expertise is reflected locally to you. Importantly Mayo Clinic have a reputation for evaluating a wide range of biologicals for activity against CLL and have no mention of GcMAF on their website. Further, in nearly 20,000 posts to this community, this is the only one that I can find where GcMAF is discussed. I think that's fairly indicative of it's relevance to CLL!

With regard to recognised effective treatments, chemo based treatments are now recognised as only potentially benefiting those with the right genetics, with FCR providing indefinite remissions (15 years and counting), but with a slightly increased risk of secondary blood cancers. Evidence on the effectiveness of non chemo targeted therapies are still accruing, but there is a growing assurance among CLL researchers that we are coming close to delivering normal life expectancy for an increasing proportion of those with CLL who need treatment.

With regard to your circumstances, having what's termed a co-morbidity (diabetes in your case), does complicate CLL management, so it is well worth finding a specialist who sees lots of CLL patients and has relevant experience. You mentioned 75% bone marrow infiltration. To put that in perspective, CLL specialists expect to see at least 25% involvement with a CLL diagnosis and many of us don't need treatment until the infiltration gets into the 90's. What's important is how it affects platelet and red blood cell manufacture. Here I don't know how to interpret your "Red platelet counts are 60 - 100K". Per section 4 of the international CLL Guidelines (iWCLL), which were updated a year ago, treatment is recommended when haemoglobin trends below 10 or 100 (depends on your lab) and platelets below 100(,000) - but notes "However, it should be pointed out that in some patients platelet counts of < 100.000/µl may remain stable over a long-period of time; this situation does not automatically require therapeutic intervention." Again the platelet measurement unit used depends on your lab.

This post: covers the treatment decision process in greater detail.



The Mayo in Arizona has two recognized CLL specialists - Dr. Castro, who recently moved there from San Diego, and Dr. Leis.


Thank you all for your replies!! In fact, Dr. Castro is who I've been seeing @ the Mayo in Phx. I'm on the "wait & see" boat!! No treatment required just now, so I'm going to be a "pin cushion" for the next X months / years until CLL or I win the battle! Thx again for all the info & I'm reading up as much as possible to keep up to date w/the new biologicals. Sincerely!!


Welcome! My husband has CLL and has T1D as well. He's in a clinical trial for I+O+V and they have been very accommodating to requests around diabetes which had been one of our initial fears with entering a trial (limiting steroid requirements and swapping ibuprofen for the acetaminophen which makes his glucose monitor inaccurate). I hope you have a very long watch and wait, but we have found already having one chronic condition makes the accepting of another pretty easy and we are rolling along enjoying life!

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Thx for the info about your husband - best of luck to you all, as well. Educate me - what is I + O + V? Obviously it's your medication, but being unfamiliar with the "CLL Lingo / Acronyms", I'm a bit behind the ball!! Hoping I won't have to dig into therapies for another 5-6 years - get me to Medicare !!! ;>}


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