I know it seems stupid but I don’t focus on my numbers. I go to the dr he says I am doing good, I focus on that. Everyday I wake up with cml, but physically I don’t feel anything. I have been on Imatinib 5 months now feel great. New granddaughter, dad having a stroke I guess my mind is not on cml.. is this normal or am I not thinking of a bad outcome in life? I read post saying numbers are not good, even think am I underestimating the disease? Please help me.. I feel if dr says I am doing ok, I am ok... maybe I am blind or just stupid.... dr says you will live a long life or is this just a cushion for a bad outcome. This is the only sight I get on....
You are here
Should I worry?
I would say then that you’re in a great place. That’s the thing with this illness for months I felt like is this some kind of prank because other than some initial symptoms I felt great. Even before taking meds I felt completely normal even though I had a very high white and platelet count, massive spleen and 3 stone I weight loss that I never even saw coming.
Psychology though it’s very strange beast. The days I feel great are the days my mind is going don’t get too comfortable mate because things can change and change quickly. It’s almost like not getting too excited because you feel like something bad is around the corner.
The worst part of CML for me is the mind torture it can cause if you let it. Since diagnosis I’ve lost trust with my body because it let us down. Building that trust again takes time and may take many many years. But little by little PCR by PCR that trust begins to build, however as you’ve seen on this forum upticks are very common and that rocks the mental boat and the trust again that “all is still ok”. Clinically they’re most of the time nothing but an increase on paper.
The reason I am saying all this is that it’s very early days for you and maybe for me 3 years later. And you’re likely too feel many different emotions over the course of time. But if you’re feeling great live your life. Your doctor can’t lie to you if your situation is bad. You have to remember this is the ONLY cancer that has almost no mortality if you continue meds. We are lucky we have a silver bullet as my consultant calls it. When I was diagnosed he just told me to carry on being normal even said take your meds with a beer if you like. They’re not over optimistic that’s the reality for the majority of us with CML. But the kicker is it isn’t for everyone and you have to remember that 5-10% that don’t. And yes you will have times when you wonder am I one of those. No one knows so live your best life and don’t give CML a second thought. For some that’s much harder so you’re double lucky!
Out of curiosity what are your latest numbers?
That’s the reason I stay of of certain sites. I get my next BCR next month, my wbc is at 3.4 coming back up. The whole BCR thing still is weird mystery lol He said I was so early! than does a BCR and it’s says 70% still very confused. 70% seems high but he said I was doing great...
Well BCR/ABL is the only measurement to go by and is expressed as a percentage. 70% is high for 5 months of treatment: I am guessing he expects you to fall drastically very soon. I was at 0.7% at 5 months but my starting place was much lower at 13%.
To be fair to you the presenting PCR business is a mystery as most are diagnosed around 100% some 300% and myself extremely low at 13%.
Maybe someone on here to clear up why this is and why it’s not clinically significant what your starting place is?
I think everyone has different coping styles ingrained in them. Some people react to the diagnosis by deep diving into every scientific paper they can access on the internet. Others gather all the informational brochures their local leukemia institution offer, or sign up for support groups. Others focus their attention completely away and expend all energy in "getting on with life." Some people tell everyone in their family, social circle and work. Others tell almost no one. It's all good. If you're trusting of your doctor, that's a really good feeling. So, I'd say, just keep on keeping on with your own style. I will say that most of us eventually start getting curious (or worried) and start asking questions. The key will be if your doctor can keep up with your differing needs to know. And, of course, there are a lot of people on here who can answer stuff, too.
Very nice summary Kat!
Lisa - Early in disease treatment (first 6-12 months), one of the most important numbers to monitor is FISH, which measures actual CML cells under the microscope and is the single most important prognosticator for treatment success. Fish usually starts out at 100% at diagnosis meaning all cells looked at under the microscope are CML cells. As treatment succeeds, these cells are replaced with your normal myeloid blood cells and FISH drops eventually to zero. It usually takes 12-18 months for this to occur, many are much faster, some slower, but reaching FISH = zero is the single most important milestone in terms of CML survival (called cytogenetic remission) - and many, many, many patients reach this milestone leading to treatment success of over 95% survival - and the 5% who don't make it usually died of something else (co-morbidity), not CML.
Ask your doctor what your FISH level is. If he is relying only on PCR (bcr-abl percentage) and there is no FISH data, then bcr-abl around 1% is an approximate target for cytogenetic remission. bcr-abl does not measure actual cells, but is an excellent molecular measure of CML activity when CML cells are no longer visible. Regular monitoring of bcr-abl (PCR) serves as a canary in the mine-shaft - establishing trends on how well your treatment is succeeding and giving you early warning if treatment response is lost (for which there are other drugs!) long before any symptoms of disease return.
I often tell CML patients I know, you will never die of CML - it was caught. It was caught in chronic phase and that is the good news regarding the disease.
The challenge is to monitor treatment success, adjust for your own personal situation (side effects management) and ask questions of your doctor or on this forum. Over time, you will learn a great deal as Kat pointed out.
.... by the way, my coping with CML in the early days was to deep dive every scientific paper I could get my hands on as per Kat above - whether from the Internet or medical school library! Through learning, I came to understand CML. And there is much known now that wasn't just 20 years ago. CML is one of the few cancers, the medical community has developed miracle drugs to enable us to lead normal lives and in some cases - live treatment free. You will be in good hands.