The last time I wrote on this site, I had just been diagnosed with CLL, lost my job and insurance coverage. Well, some things have changed...I still have CLL but now I found a job working from home and have insurance. Recently, my older brother sent me a text telling me that he had a routine blood test that came back with a high wbc...my brother informed his primary care of my diagnosis and he was immediately sent to an oncologist to have a flow cytometry and fish tests. Although is wbc was not as high as mine, his doctor classified him as monoclonal b-cell lymphocytosis....his flow cytometry came back with the immunophenotype of CLL/SLL with CD38(-) and ZAP70(borderline +)...I am CD38(-) and ZAP70(-)....his fish test showed that he was IGVH mutated at a rate of 10%....I am IGVH mutated at 3%....not sure of the significance of the percentage but I know being mutated has a better prognosis. My brother also tested positive for deletion of 13q14 (same as me). Since I hadn't been to the doctor in six months, I went to my primary care to get a referral to see a hemotologist at Moffitt Cancer Center in Tampa....while I was there they did blood tests and I just got the results yesterday...my wbc count went from 15.9 to 18.5 and my lymphocyctes from 12.42 to 15.05....the lymphocycte percentage increased from 78% to 81.4%....I was really bummed seeing this increase as I started a vitamin regimen six months ago and I was definitely feeling better....I was so hoping that the counts would be stable or less. Anyway, I have an appointment scheduled with Dr Javier Pinilla-Ibarz, who is listed as one of the top doctors for hematology malignancies...my appointment is scheduled on June 9th. I'll be doing more bloodwork so it will be interesting to see the results from a different lab. I am definitely going to show the doctor my brother's tests as everything I've read says that CLL is not genetic....but with my father having lymphoma, my father's brother (my Uncle) having lymphoma, my Uncle's son dying from leukemia, me and my brother I find this hard to believe.
CLL and Genetics....: The last time I wrote on... - CLL Support
CLL and Genetics....
Hi hayleym1004
Sorry, but there is absolutely a familial genetic component in CLL , this has been studied for years... but the exact genetics is illusive still... but there are around 15 candidate genes, perhaps all of them...
I hope you and your bother will enter into a Famillial CLL study...
Definition
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
Familial CLL
ncbi.nlm.nih.gov/pmc/articl...
cll.ucsd.edu/biorepository_...
~chris
Haylem1004, further to Chris's comments, I wouldn't be at all concerned at an apparent increase in your lymphocyte count from 12.42 to 15.05 in six months. If the same lab retested your same blood sample, the machine would return results in a range of +/- 0.5, just due to the limits of machine repeatability. Then you have the variation between labs and even in your lymphocyte count over the day. If you keep records of your counts, you'll notice that they can jump up and down by far more than that over a week or month, let alone six months. So if you are interested in tracking changes in your CLL, look at trends, not one off changes.
CLL specialists don't even look at lymphocyte doubling time until your lymphocyte count exceeds 30.
Also, totally ignore the lymphocyte percentage - what's important is the absolute count of lymphocytes and other white blood cells, primarily your neutrophils.
Neil
Since you mentioned Tampa, I will assume you live in Florida. I live in NY and I see Dr. Kanti Rai. I found him through this site. Dr. Sherman, whose writings appear on this site, put out a list of CLL specialists and called Dr. Rai, the CLL "godfather." Dr. Rai is located in New Hyde Park. He is a 20 min. ride from John F. Kennedy Airport and I have met many of his Floridian patients while sitting in his waiting room. If you want a second opinion, he is the doctor to see. He is also very involved in CLL studies.
17184704050
I heard that Dr. Rai is retiring. If you are new at this a consult with one of the long time gurus might be good, but I think you would do better to start with one of the younger ones. Furman or Lamanna in NYC. Dr Asher Chanan Kahn at the Mayo in Jacksonville might be closer.
Hi there, Your comments really are interesting. As I am in England and treated under the NHS scheme, we do not get such detailed reports on our blood tests and it is obvious that your medics are treating your CLL as an important disease. Here I have been sidelined and told to go away and just get on with life even tho I have had CLL for 14 plus years now. I, too, reached heights of 21 plus in the lymphocytes and then was diagnosed with breast cancer as well. At the time I was told that the radiotherapy I had to endure would have a beneficial effect on the rising lymphocytes, and it did, but I can't recommend getting breast cancer just to deal with the little white beasts! However, I have also been informed that there is a slight genetic bias and my father developed CLL as well as renal failure, and it was a heart attack that killed him. Also I have been informed that there is an element of genetic bias if you have Jewish ancestry, which I have in my family tree, but this is on my mothers side of the family. So have I had a double whammy? I leave it to you to decide!
Best wishes
Catmad
Ashkenazi Jews are the ones at risk. My DNA puts me at 97% Ashkenazi Jewish and my father has Cll
We are as well...
We're probably related cousin. 🍻
Jill4 I have an maternal uncle who died with what I think may have been CLL. I have CLL, so, while I have no knowledge of my grandparents religion, at least one of them (grandfather) was Russian-- both Eastern European. So, I am suspecting a family Ashkenazi Jewish heritage never divulged in the emigration to USA in the early 1900s.
I think there is some truth to the family genetics piece for sure. My first cousin died over 10 years ago from Non-Hodgkins Lymphoma (today he would most likely had some good treatments available to him) and this past year my brother was diagnosed with melanoma (treated and had not spread). While both are not CLL, there are probably some ties with one another I would think (I have also had several BCC legions removed which is common with CLL). Also, as you mention Catmad, the ancestry of CLL being tied to Eastern European Ashkenazi Jewish descendants at higher rate seems real. There are numerous studies of the Ashkenazis that have shown several diseases that are categorized as Lysosomal Storage diseases that have been handed down from generation to generation (similar to sickle cell anemia) among the Ashkenazi community. These Jewish communities didn't marry much outside their own populations. Also, non-Jews for many areas of Eastern Europe were prevented from marrying Jews during mid-evil times and prior which helped pass on the genetics of these diseases (Tay-Sachs, breast cancer, high cholesterol and hemophilia and probably leukemia's to future generations. There are lots of studies on this subject if anyone is really curious to dive into the genetics of it all.
Good luck to all. Be healthy and happy and keep a positive outlook.
In CR at the moment....
Cary
Might start with Pedigree 14 as reported by Videbaek in 1947...
Hi there.. Its good to know that my comments did not upset anyone, such a positive feed back. Interestingly, my first cousin (related through my mother's side, Jews from Germany so are they Ashkemazi?) has also developed Lymphoma. so there is something genetic somehow. As I said I have also had breast cancer and raised cholesterol levels. However we keep going as life is to be lived not endured. ~Best wishes Catmad
My dad and I have the same Cll markers. Sorry to hear about your brother. Best of luck to both of you.
CD38 In CLL
Stage 1/2 CLL and no follow-up visits?
Newly diagnosed too, stage 0
Am new member: have CLL/SLL since 2013
