8 replies to this topic

[cyd]

I am sure all of you have already, "been there, done that" however, for myself being a newcomer, please enlighten me with any info that you have. I am on 100mg of Srpycel. I am exhausted, is that CML or Sprycel??? I am losing my hair.......cml or sprycel?? I am getting extremely pale....again.....cml or sprycel?? I have only been DX since Aug and I am VERY lost!! Thanks, Cyd

[scuba]

What are you blood counts (CBC).  Red blood, ANC, platelets, etc.

[cyd]

Blood counts...interesting question. However, my current Onc. doesn't give me this info!! All he give is my WBC and last check it was 7100. Cyd

[scuba]

You want to see the whole report, not just WBC.

[tiouki]

Hi cyd, we are in a very similar situation (diagnosed beginning of august, sprycel 100mg since end of august).

As scuba said you should try to get more information about the blood counts. Also, you probably have had a bone marrow biopsy and a PCR test (since it is done at 3 months usually, + at diagnosis). You want to get also this information since this is the best way to see the efficience of the treatment. Also, what was your WBC at diagnosis?

Now what I can say is that you probably already reached hematological response, 7100 is within the normal range (plus not much myelosupression on white cells which is nice).

About CML normally you should not have much symptoms from the disease, as it is under control, but you can get some from the treatment.

Losing hair and paleness can be a symptom of TKIs (tyrosin kinase inhibitors, such as sprycel). I myself think I lose some hair maybe as a man it's normal (I am 22). Fatigue also can be a direct symptom.

But at the beginning (first months) dasatinib can cause low red counts which cause anemia which cause paleness and ... lots of fatigue. It might be your case actually, you need to get your red cell counts (plus your hemoglobin count : a value of 8 to 12 can make you very tired, normal is > 13-14). I went down to 10 at first so I had erythropoietin injections that helped a lot. This effect is usually transient (I'm fine now) but maybe you are still in that situation.

These are some possibilities but you need to get more information so we can answer you more precisely 

Good luck I hope you'll be ok and will deal with those side effects

Pierre

[cyd]

Bone marrow biop. was done already....in August. I was told it was to comfirn the ph chromosome. My WBC went as high as 45,000. Then it went as low as 3,500 and last check at the end of Nov. was 7,100.

I have lost about half of my hair. It was VERY thick. Not any more. Hoping it will eventually grow back!

new Onc. at the end of this month. Hoping for a better experiance.

Cyd

[Marnie]

Hi, Cyd. . .

Don't worry, things do get better, though your new normal won't be the same as before diagnosis.  I started on Gleevec 400 about 2  1/2 years ago, but switched to Sprycel 100 just under a year ago.  I have not lost any hair, though others on the site have. I think that most people get their hair back, though sometimes curly if it wasn't before. I have noticed that my hair quality has changed.  It goes funny directions, is more wirey, and is turning gray, big time (but that might be my age, darn it).  Be careful of the skin.  You will be VERY sensitive to the sun.  Be sure to wear sunscreen if you go outside.  My skin burns if I just THINK about the sun.  With Gleevec, my skin also got very fragile. . .it tore and cut very easily.  Sprycel doesn't seem to be so harsh on skin, at least for me. 

Good luck, and think positive.  You can live with cml, though it does take some getting used to, both physically and mentally/emotionally.  This is a great support system, so keep checking in and let us know how you are doing.

Marnie

[pammartin]

Hi Cyd,

I am not kidding when I say sometimes I can't seem to get out of my own way.  I had a day like that yesterday.  We are working on a house, so life is busy, but it seems after I do quite a bit on the weekend, Monday is a terrible day for tired, not feeling well, and sometimes almost non-moving.  It can be frustrating, but from what I have read, Sprycel has the least side effects, so I try not to complain too much.  As to the hair, mine has gotten very thin, and does not feel soft and look as nice as it used too (as Marnie said, maybe it is my age).  I have curly hair so maybe when it comes in it will be straight!  I had an incident a while back with Ambien, scissors, and a late night hair cut, but even if I had not chopped it up, I would have gotten it cut, it is just not in good health right now.  From everything I have read and heard from others, this side effect does not last forever, hair grows back, the body calms down, but unfortunately the tired seems to stay.  Lots of people work full time jobs, and lead fairly regular lives on all of the TKI drugs, so I try to ignore the off days, enjoy the on days, and on the in-between ones I do what I can. 

Take care

Pam

[Trey]

Overall, the first few months after starting a TKI drug can be tough.  The reason is that these drugs inhibit more than just the specific BCR-ABL (leukemic) process.  They also inhibit normal processes that result in side effects.  These side effects vary by drug and by individual.  The good news is that some of the side effects lessen over time.  The bad news is that some may not.  It will take time to figure out which is which. 

These drugs are saving our lives.  That is the primary focus.  But as humans, we say "Thanks for that, but what have you done for me lately?"  I have spent a number of years sorting out these issues the best I can.  My thoughts are summarized to some small degree in the following, which may be helpful:

http://treyscml.blogspot.com/