i was recently diagnosedwith both cml andcll.hasanyoneou therehad a similardiagnosis? it's really hard to find any info about the course of such a dual preseentation.
i was recently diagnosed with both cml and cll. has anyone else had a similar diagnosis? does anyone have any info about how one affects the other?
Posted 15 January 2012 - 11:47 PM
Posted 17 January 2012 - 04:30 PM
Hi Jeffrey, Welcome to the boards. I think you're a pretty rare one with having both CML & CLL. Unfortunately I can't really help you much with info but just wanted to say hi and certainly this is a good place to find help with side effects of the CML treatment.
What treatment are you on and how are you going?
Hopefully Trey or somebody else knowledgeable will come in and provide some insight for you.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 17 January 2012 - 08:49 PM
Very rare. If the CLL is in early stages, the docs will likely treat the CML with a TKI drug and watch the CLL. What type of CLL do you have? Do you have any chromosome mutations besides the Philadelphia Chromosome, such as mutations in chromosomes 11, 12, 13, or 17? Other info would be helpful to better respond.
Posted 17 January 2012 - 09:39 PM
I posed a similar question to my onc at diagnosis. His answer was that you only get one blood cancer at a time. How hard and fast a rule that is, I don't know. But if it were me, I'd get a second opinion, just to confirm.
Posted 18 January 2012 - 02:04 AM
That is interesting, my previous onc said I was lucky to have only one cancer, as many of her patients had multiply cancer. Now I did not think to ask if they had more then 1 cancer at the same time.
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