CLL just diagnosed

[SaEva]

Hi, I am happy to have joined this group. I am also new to this site and would appreciate any guidance anyone may have. I am 44 and was diagnosed with CLL less than a month ago. I caught a virus in December and my whole neck down to my collar bone was in small painfil glands. WBC were at first 16 then went to 25 (now they have dropped to 17). The lymocites were also high up to 53% and by being persistant with my dr I managed to see a hematologyst and schedula a flow citometry test. The CLL score came out 5/5 which confirmed the diagnosis CLL/CD38 and CD49d. The plan is to do a FISCHE in May to get an overview of the prognosis for progress of the leukemia. I am too on wait and watch. I changed my eating habbits and plan to exercise more. Even though the lymph nodes all over my neck withdrew after the infection I still feel uneasy around the collar bone. I would like to know how people manage to avoid infections as I was told that is for now what I can do for myself. And also what does the CD38 and CD49d proteins mean, what do rhey tell us? Also what information will be givrn by the FISCHE test? Bone marrow test is not suggested but as I read it is not neccessary at the beginning but only when starting to take treatment. Thanks for sharing your knowledge! Eva

[newyork8]

Sorry to hear but stay optimistic...many great treatments. FISH will look at the genetics of the cells and will inform treatment. The CD numbers refer to cell characteristics...depending on the % those markers could perhaps indicate less benign disease. To avoid infection I avoid people/crowds (not totally) and wash hands a lot. Dont eat uncertain foods. Exercise helps immunity. One persons opinion...im not a healthcare professional...just a rank amateur not by choice. Best wishes

[SaEva in reply to newyork8]

Thank you for sharing your experience. I read that the score 5/5 confirms the diagnosis. However one of the hematologysts I spoke to said that it indicates the heaviness of the leukemia, although I couldn’t find anywhere if this is the case but only that it confirms that it is CLL.

[Spacee]

Newyork8’s advise is sound. Lots of info here. At the beginning I took some notes on treatments which I am glad I did. However, treatments are changing rapidly so now I am waiting until the time comes (for hubby). He still feels great now at 70 yo. He does have the worse mutation of the FISH test 17p deletion but this site helps a lot in how I feel about treatment strategies.

Linda

[SaEva in reply to Spacee]

Thanks Linda! Keep up the positive attitude!

[Mystic75]

Hi SaEva,

As someone who has also recently joined, you've come to the right place. You have the benefit of a lot of experience and updated information on an ongoing basis. Newyork8 has great advice on avoiding infections, which is always a concern when having CLL. My husband, who has CLL, is no longer near the litter box and I am much more alerted to potential issues, e.g., young nieces and nephews who have colds, etc.

All the best to you!

D.

[SaEva in reply to Mystic75]

Thanks for your swift reply. I plan following info here and sharing my experience

[Hoffy]

CLL Society web site has very good information to learn alot,

Take it slow if you can,

Be well,

Hoffy