I need your help: Hello all, Please, I need Help... - CLL Support

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I need your help

lilica955 profile image
6 Replies

Hello all,

Please, I need Help! I was for 4 months on Leukeran,and first 2 months everythings was ok.Later ,my WBC started to increase and Hg and Plt to decrease dramaticaly! I have, too,a lot of lymph nodes in my neck,arround 8-10mm.each.

My doc. said to stop leukeran in 4 days,and to start next week another med.,maybe Imbruvica.

Thanks in advance for yours comments.Please accept my excuses for my English!

Regards,

Lilica

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6 Replies
MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Lilica - You said, in a post a couple of years ago, that you were going to start Imbruvica. Did you take it for a while and then stop? Imbruvica works very well for many.

Do you know your mutation status and do you have the results of a recent FISH test? It could be that those results would indicate that chemotherapy (Leukeran) would not work as well as one of the newer drugs, like Imbruvica.

lilica955 profile image
lilica955 in reply toMsLockYourPosts

Thank you for your reply! Yes,it's True,some years ago my doc intented to start the treatment ,and she suggested ibrutinib,but my blood count were still constant around 60(ALC) . During last year,the number and my general health have deteriorated. And than,without a recent FISH test, and in an actual situation (Pandemic time),I started Leukeran. At this moment could be possible to have imbruvica!

That is my story! I understanding that you consider absoluty necessary a FISH test before starting Imbruvica?

Thanking you in advance for a prompt answer,

All my Best wishes.

Lilica

cllady01 profile image
cllady01Former Volunteer in reply tolilica955

Lillica, it is difficult to understand just what your previous treatments have been .

If your Dr. is offering Imbruvica, it would be helpful to have a new FISH test run to see what has changed in your CLL with the treatments you have had.

Imbruvica is a good choice for treating CLL. Do ask your Dr. about possible side effects, but understand that most people seem to have side effects that go away as they continue to take Imbruvica.

lilica955 profile image
lilica955 in reply tocllady01

Cllady01,thank you very much for your reply! I'll ask my Dr. about a New FISH test.I have the last in 2016 and than it was only 13q14 deletion .

Best wishes!

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply tolilica955

The FISH test and test for mutational status would be very important if your doctor was considering actual chemotherapy drugs. If possible I would have the test redone, as it would give you and your doctor information about what your CLL is doing, and maybe some information about why the Leukeran didn’t work. It is not as critical if you take imbrubica.

lilica955 profile image
lilica955 in reply toMsLockYourPosts

Yes,you are right,it is important to know why leukeran has not worked after 2 months! I really appreciate your advice!

Thank you again!

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