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New to CML Support

Hello all. I'm new to the group. I was diagnosed with CML last November -2018. Sprycell makes me extremely tired and I think my hair has been adversely affected by the meds but my doctor brushes it off. My dermatologist that I began seeing before the diagnosis says he's going to research if the meds can cause a change in hair growth or lack there of in the front in my case.

I see that some have lowered their meds. I'm currently on 100mg. Has anyone experienced issues with their hair since being on Sprycell and when you lowered the dosage did you regain energy?

 

What is your current PCR level?

I have no idea. I'm just learning the "term" reading the posts in the forum. What questions should I be asking my doctor?

When told I would be on meds for the rest of my life, I asked if the drug caused cancer or other issues as a side effect. He didn't give a direct answer. He said that the drug was targeted unlike conventional chemotherapy.

When I have follow-ups sometimes I see the NP who I have told that I'm always tired to said it was more my age. She's attributed so many things to my age that I want to scream. I'm 48 will be 49 next month which I don't consider old enough to attribute all my concerns to age. Before the diagnosis I felt fine. It was my blood work done during routine annual exam that dedicated the high white blood cell count.

Ask your Doctor or look on your report and let us know what your PCR level is.

It is a measure of the residual level of CML in your system. At diagnosis most people are at or even above 100%. As you continue treatment, this level should drop significantly. At one year, you should be around 1% or less. Your target is to get below 1%, ideally below 0.1%

i am asking because new research suggests patients taking dasatinib (sprycel) should not be taking 100mg and instead should be taking 50 mg. If your PCR is below 1%, I would strongly suggest you cut your dose to 50 mg or even lower.

I take 20 mg dasatinib. I am "undetected" for CML (i.e. PCR reveals no CML that the test can detect). I started taking 20 mg when my PCR was around 50%. Keep that in mind.

 

I'm looking at my blood test results and don't see anything say indicates PCR. Is there another name for it?

Hi Wendy,  The PCR test usually is done by a different lab than your normal blood counts and chemistries.

Here's the definition of PCR as it pertains to CML:  qRT-PCR, quantitative reverse transcriptase (real time) polymerase chain reaction, a sensitive molecular test used to measure the ratio of BCR-ABL1 versus normal gene transcripts such as ABL1 or BCR.

In my case, the PCR test is done by a pathologist who provides a report to my oncologist who then gives me a copy.  You may have to ask your doctor for copies of your BCR-ABL1 reports if they don't automatically provide them to you.

Good luck, Kirk

Wendy - Please see the tabs at the top: About CML and Patient Info.  Also, see treyscml.blogspot.com.  You will then know everything you need to know.  Your onc seems to be keeping you in the dark.  Is he a CML specialist? 

Yes, definitely dasatinib (and other TKIs as well) affect hair growth and cause fatigue, as those systems become off-target casualties of the meds.  All drugs have side effects, ours included.  We sometimes can become hyper-aware of stuff like hair loss because we're now in this new CML place, but don't ever let your medical team brush you off automatically.  I think that's the single most discouraging part of being a newbie.  You don't feel like you used to, but it doesn't show much to the outside world, and you get no sympathy or answers from the docs.  (UNLESS you're going to a CML specialist - THEY know.) 

The good news on side effects is that many become less bothersome (or disappear) with time (months and years), and if you get some effects you will probably not get others, and lastly, if your PCR warrants it, you may very well be able to reduce your dosage to a level where it is both effective against the CML and tolerable for side effects.  Scuba is right that it's looking to be clear that 50 mg Sprycel is as effective as 100 mg, but with way fewer side effects.

When I was taking 100mg Sprycel I did notice that my eybrows started to thin.  I took some time before I noticed it but I would say it was related to the Sprycel as I had never had this issue before.  

Hello kat73. Thank you. I DO feel like I'm being brushed off. My doctor is an Oncologist/ Hemotolgist at NYU Perlmutter Cancer Center. My mom is a retired nurse practitioner who said, "you look good for someone with leukemia." So I definitely believe some (not my mother) think my fatigue is either a figment of my imagination i.e. a way to get out of work or whatever or I'm just lying.

Not to be vein but is there something that can be done to address the thinning hair? I cut my hair very low over the weekend and still have split ends. I'm like WTHeck is going on.

Yes, mine are too but they were thinning before the Sprycel. I began working with a dermatologist a year before my CML diagnosis for thinning hair. Treatments seemed to be improving my situation but then it worsened in the front. Now I feel like I'm wasting time and money going to him. I asked if the Sprycell could be counter acting the scalp injections and solutions I'm taking/using. He said he would do some research.

Joan Rivers' Great Hair Day.  Covers your bald spots (not for covering the gray hair roots).