Hi again. I was diagnosed in August. Had biopsy, confirmed cml, put on 400 mg gleevac. 11 days after my counts had already started coming down. My next appointment is Tuesday ( 27). I am a nervous wreck. Anyone else get nervous?? Every little pain I have makes me nervous now. Can it bring your counts to low? Sorry for all the questions.
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Nervous
Hi Mona
its still very raw and early days for you. What you are going through we’ve all been through and are going through!
You’re responding and that’s a good thing! Give things time to settle emotionally and physically. I am 7 months in and I’ve had good months and bad months emotionally. Physically the tablets do the job so I don’t worry about that as mush as I worry about symptoms from tablets.
Ive had little to no symptoms for 7 months and only now I am getting little aches and pains some more obvious than others. I guess the take away is you will most probably get some symptoms and they can come on at any time. And they leave at anytime. I am on a stronger drug than you but it’s similar to Gleevec. Recently been getting bone, joint and some numbness however it’s seems to be subsiding.
Youll be fine and you just have to ride the waves of uncertainty. When things get more predictable you’ll relax more. My bloods have all been perfect since on the meds and my 6month PCR is 0.7% so they’re defo doing the job and May they continue to do so. In the beginning all the tests take there toll I was having tests every other day for 3 weeks then weekly then monthly and now 6 monthly.
But in answer to your question worry is normal. I started meditation and it’s massivly helped me you’ll learn coping mechanisms. Reach out here anytime everyone is lovely.
All the best Mona
Alex
Ditto on what Alex said Mona. The first year was the worst for me - you should eventually settle into a "new normal" where your body will adjust to the medicine. For many of us, you never quite completely adjust, but it does get better over time. And when you reach MMR, you can start discussing dose reduction with your oncologist. I started on 600 mg/day of Tasigna in Sep 2016 and am now on only 150 mg/day - side effects much better and PCR holding at very low level.
Find some good outlets to help you deal with the anxiety. I exercise and do volunteer work and keep in touch with this group and others. I also took Ativan for the first 9 months and that helped as well though you only want to do this under care of your doc because of potential dependence issues.
One of the more common side effects of all the TKI's is myelosppression, which is red, white and/or platelet counts getting lower than normal. This is one of the many reasons testing is more frequent early in treatment. If counts get too low, you will have to take a drug holiday, or if you have hit MMR, your onc might try dose reduction or a different TKI (we now have 5 of them).
You will get through these early months and things will get better. We are very unlucky to have gotten CML but very lucky to have TKI's. Most of us will live normal or near normal lifespans and die from something else. Hang in there and good luck.
Hi Mona,
I'm only 2.5 years into treatment and I still get so nervous 2 weeks leading up to my next remission test. Every new ache or weird side effect makes me paranoid. Is this a side effect? Is something else wrong with me now too?? Sometimes I will actually laugh at myself because I am so ridiculous! You're in great company here :)
My white count and platelets got too low the first couple of weeks in, so I had a 2 week holiday. After that they mostly returned to normal.
Hi, Just to say that I feel exactly the same. I got confirmed diagnosis just under 3 weeks ago. Had gone to A&E for a 2nd time for what I thought was "lower back pain" and the next day was having a bone marrow biopsy and being told 90% sure that I had CML! Since had confirmed diagnosis and am on imanitab 400g. Went for my first review and was told white cell count down from 87 to 15. Now concerned it may go too low. Am very confused by stats and what I should be focusing on. I know its early days but hard to know what to expect.
Exactly. I know I should be more informed on this. Everyone talks about their counts,platelets,"fish" results and I'm like "what"? Maybe still in shock a little? Ill get with the program soon. Lol. I work 40 hours and keep busy but I better look into stress and anxiety reliefs cause when I slow down in a worrier(which is new also). Thank you so much everyone for answering. It helps.
Hi Mona, I don't know if this would help you, but it might. I like to get a copy of all my test reports so I can take a look at them at leisure. It helps me understand what's going on with my response to the TKI treatment. It's strange because some reports I can look at online and for others I have to get a paper copy of the report.
Kirk