7 replies to this topic

[susanlathers]

I was diagnosed CML 8 yrs ago.  Glevec (failed) Sprycel (severe pleural effusions).  Been on Tasigna last 3 yrs (PCR never neg. and developed diabetes which I can not take diabetes drug for because they cause really low blood sugars).   I'Ve been on "drug holiday" due to side effects for 10 weeks.  Latest PCR last week there was a considerable 3% rise and Dr. said I have to go back on either Tasigna (which causes diabetes in me) or switch to Bosutinib (which will mean going off a major blood pressure med I have taken for years).  I would so appreciate anyone's input. I have never been so discouraged, since I was diagnosed, as I am now.

Susan

[August1]

Hi Susan,

Can you potentially reintroduce Sprycel at a lower dose, or would there be any substitutes for your blood pressure med? IThere are many mechanisms for controlling blood pressure including ACE inhibitors, beta-blockers, etc. Would any of those be an option for you? Some information: http://www.heart.org...247_Article.jsp

Take care,

[Trey]

Your Onc and you need to work with your primary care doc to find a solution which allows you to stay on the drugs which are required, or at least the most important drugs.  The CML drug needs to be the top priority drug.  After that the various other drugs need to be prioritized and alternatives considered.

[susanlathers]

Thank you both for your input.  I was on 50 mg of Sprycel and diuretics.  I had 3 thorcentnesis, removing 1.5 liters fluid.  But maybe a lower dose is worth a try.  I am already on 4 blood pressure meds and plan on seeing my primary Dr. next week to see what he says.  I also might try a lower dose of Tasigna, I was on 600 mg.  My onc says neg PCR's are not necessary to live a long life with this disease, that low levels of positive are ok.  Being PCR 0, negative of course is what everyone wants but I guess I will have to accept under control at low levels, work around and look for solutions for side effects.

  This disease has been such a roller coaster of.... all is well, oops not so well, acceptance, rebel against it, poor me, I should be grateful.  Brings out the best and worst in me but always a learning experience which I hope will make me a better person in the process.

  Grateful for your help

[chriskuo]

Did the pleural effusions on Sprycel occur even when you were taking diuretics?  I was taking Sprycel 100 and had to discontinue after about 10 months because of a severe pleural effusion.

I went off Sprycel and cleared the effusion with diuretics.

I am now taking Sprycel 50 with diuretics and so far, after 5 months, I have not had a reoccurrence of the pleural effusion.

[susanlathers]

Thank you for your reply.  Yes I was on diuretics most of  the 2 yrs while on Sprycel.  And, only taking 50 mg.  I have heard of people taking less than 50 mg and doing ok. if I can't handle side effects of Bosutinib I may go back to Sprycel at very low dose.   My primary dr. thinks I should try the Bosutinib rather than struggle with diabetes and Tasgina.  I feel like..... do I fight the enemy I know or the enemy I don't know.  I don't like the idea of messing around with my blood pressure either. And, I read pleural effusions are one of the side effects of Bosu. also.  The most common side effect seems to be diarrhea. Oh what fun.  At least I'm 8 yrs into this and still alive.  Before all these drugs no one could say that.

[triciad]

Hi Susan-

You and I have had similar journeys.  I was diagnosed over 8 years ago (March 2005).  Gleevec (1 year - lack of response), Sprycel (2 1/2 yrs - pleural effusion) and now Tasigna which has been the best for me as far as side effects go.  I also have not attained PCRU but I'm happy where I am right now (.03%).  I've seen my glucose level over the last five years increase and I'm now considered in the high category...just barely but it's still increasing.  I'm not overweight, I excerise regularly and eat a healthy diet so it's surprising to see an increase when all other biometrics are normal. 

I agree with Trey in that the CML drug is your top priority and then treat the other symptoms.  Can you take medicine to control the diabetes?  Are you able to improve with diet and exercise?  I'm assuming you have Type 2.  If it was me, I would stay on Tasigna as long as possible especially if I was responding well and treat the other conditions/side effects.  Many people live with diabetes and manage very well.  Bosulif is always an option if the side effects become unmanageable.

I know it's a tough decision and I wish you all the best!

[susanlathers]

Dear triciad

   I'm sorry you have had to experience the rise in glucose levels even with doing everything you can to avoid it. I hope you can find a way to successfully keep it under control and I agree except for that Tasigna has relatively few side effects.   I worked so hard to keep my A1C below 7 that between the fasting with Tasigna and what can I eat to keep blood sugars down, eating became a dread and obsession.  Socializing that involved eating was no fun any more.  Every time I would see my onc and tell her how hard I was trying, exercising, eating low carb/balanced died, loosing 70 lbs, she would have something else I wasn't doing.  I tried the medications for diabetes and had several incidents of extremely low blood sugar.  That is dreadfully frightening and dangerous.

  My primary dr feels I should try the Bosutinib because changing blood pressure meds is better than having diabetes.  I will probably start it after Thanksgiving.

thanks for writing with support and suggestions.  I wish you and your family a blessed Thanksgiving.

Susan