8 replies to this topic

[alexamay09]

hi

I am hoping for a bit of advice. i am now 7 months on from diagnosis. am awaiting result of third BMB.i am on 140mg sprycel since the end of January and am feeling unwell. i dont  know whether it is the high dose of sprycel or something else. my case is complicated by having been diagnosed with breast cancer in 2009. i get over anxious in case it returns so worry whenever i feel unwell.

my liver was enlarged for a while and i had 2 ultrasound scans. the second one showed shrinkage. i assume that the scan would have shown any nasties such as metasteses from cancer number 1.

first thing ive noticed since starting sprycel is a return to awful tiredness. In addition i feel bloated in thr abdomen and have discomfort in my dhoulders, particularly my right. i get niggly minor pains under ribs.  i am getting flushes and a bit of nausea the past week too. i get other niggly aches and pains that come and go.  Doc said she couldnt feel anything untoward in abdomen and bloods are ok.

Has anyone had these kind of side effects from sprycel?  i am hoping for a dose reduction soon. i was on tasigna for first 5 months and percentage reduced from 80 to 40. Switched to sprycel and was 15 per cent at around 4 months. hoping latest results will show more reduction. i am back at work but struggling. 

Thanks in advance

Alex

[hannibellemo]

Alex,

I'm so sorry you aren't feeling well. Anxiety can just make it worse, too, and I can certainly understand why you would feel anxious.

Did you have some extenuating circumstance with your CML that precipitated needing such a high dose of Sprycel? I really think that may be the reason you feel so unwell. If you were diagnosed at chronic stage CML 100mg. is the recommended starting dose.

I developed a pleural effusion at 100mg. and have been doing fine at 50mg.  (knock wood ) If I were you I would discuss lowering the dosage to a more tolerable level. You are in this for the long haul after all.

Good luck!

[CallMeLucky]

I agree with Pat is there something high risk about your diagnosis?  3 BMB in 7mo and 140mg would suggest a higher risk treatment plan.  The prior history of breast cancer should not have any impact on CML treatment.  What phase were you diagnosed in?

[Trey]

Given that you did not respond well to Tasigna, taking high dose Sprycel for some "short" period of time is reasonable:

http://community.lls...tart=0&tstart=0

But it will surely make you feel awful.  I would simply try to work through this and bear the side effects for a while longer to ensure your CML is brought under control.  Hopefully your next PCR results will show improvement.  Remember that feeling awful does not mean you are not making progress against the CML.  Usually the drug is what makes the patient feel so unwell. 

If you ever get the chance to see Dr Tessa Holyoake at the University of Glasgow you should take that opportunity:

http://www.gla.ac.uk.../tessaholyoake/

[alexamay09]

Thanks for your replies. at diagnosis my doc thought i was accelerated phase because she saw about 10 per cent blast cells in initial sample. She consulted with Professor Holyoak who was not convinced that i was in accelerated phase, though i suspect i was borderline. My doc decided to do Bmb at 3 and 6 months because it would show any mutations as well as give information about my bcr abl. after the 3 month biopsy she said my count had gone from 80 percent to 40, but did not feel that was an optimum response although the tasigna was working

She said the target for 3 months was 10 per cent.

Professor H suggested the change to 140mg sprycel. i will get my latest (7 month) result next week. A blood sample about 8 weeks ago showed 15 per cent so its moving in the right direction. My second bone marrow sample showed 'chronic phase CML' and my recent sample was apparently  quite a bit better. I told her about the fatigue and bloating (but didnt have the burning pain in my shoulder at the time).  She said to wait and see whar the latest results are, so Trey you are spot on - i guess they are trying to blast the CML.

My niece died from metastatic breast cancer recently and i remember she felt unwell and had right shoulder pain before that was diagnosed.  I was hoping someone would say that they had these symptoms from sprycel too   Could my liver become enlarged due to treatment? I felt bettrr on tasigna as the side effects had settled but now its back to square one again! Thanks guys - this forum means so much to me

Alex

xx

[CallMeLucky]

Sorry I didn't respond about the arm pain, one of the reasons I dropped from 100mg Sprycel is because of the sharp pains I was getting on the left side of my chest.  The pain was in the armpit and at times it would go down my arm to my elbow.  I've heard of others having this issue.  I initially associated it with cardiac because it was left side but ultimately it seemed to be either strictly muscle or possibly lymph node related.  At the 50mg I hardly get it, but it still pops up once in a while.  Much more tolerable than the higher dose.  So while I cannot say that is what it is for you, it does not surprise me when I hear you say you have pain in that area, to me that suggests something to do with the Sprycel.

[hannibellemo]

Alex,

I'm glad Trey was able to reassure you about the high dose of Sprycel. Knowing the uncertainty about your initial diagnosis makes the quick switch and high dose Sprycel understandable for the short term.

I don't love Sprycel and I had a very hard time with it the first 5-6 months. Then it was smooth sailing for the next two years until the pleural effusion came out of nowhere. It will be a year in May since I started the lower dosage so it is still "hold my breath" time every time I get a PCR drawn.

Good luck and here's hoping you are able to lower the dosage and feel better soon!

Pat

[Trey]

I would expect that every part of your body could hurt on high dose Sprycel, including internally.  So don't conclude anything about the disease itself because of the various pains.  Those pains actually show that the Sprycel is being well absorbed, at least. 

[alexamay09]

thanks again for sound support and advice- Trey you are incredibly knowledgeable about CML

xx

alex