6 replies to this topic

[Darlene_Jack]

Hello all im back.  Been on a roller coaster for a bit.  Finally my Dr. decided to let me try Gleevec.  Im having a hard time with my heart and these TKI's.  Hoping this one will be more forgiving.  So I have noticed that I have an intolerance to heat and sunlight. Also I have developed a itchy rash on my chest that is a lot more noticeable than the rash all over my body.  I have hair loss especially in the shower.  Hoping this one works for me.  I was taken off of Sprycel after a year and then Bosulif after 3 weeks.  Anyone else have heat intolerance and sunlight intolerance.  If im in it too long my heart starts pounding like I was in a marathon.  I hope everyone is doing well.

[rcase13]

I am on Tasigna and have noticed that heat and sun will cause my heart rate to increase. Even without physical activity. I walked into a hot humid elevator at the beach and didn't think I would ever make it out. The sun never bothered me before. I guess I will be inside all summer.

[chriskuo]

Were you taken off both bosutinib and Sprycel because of heart issues?  That is not a common side effect of either one.

Do you mind saying what type of heart issues?

[gerry]

Hi Darlene,

Welcome back,

I'll keep my fingers crossed for you, Gleevec was a good drug for me. You'll still need to be careful in the sun, sunscreen, long sleeves, hat etc.

I took fish oil while on Gleevec, I think it helped me with the sun issues. It is a blood thinner, so if you're on aspirin or any other blood thinner, than don't take it. 

[Darlene_Jack]

Hello all

 

Well shortly after my last post my Dr took me off Gleevec because my kidney and liver came back abnormal.  I still have not been able to restart due to my liver still not returning to normal.  Im waiting to hear what my Dr is gonna do.  He said something about sending me to a liver Dr.  Has anyone else had issues with Gleevec n the liver reacting badly to it.  Running out of TKI's the Dr will try me on.  Im thinking he is leaning towards Steem Cell.  My heart, lungs and now liver react badly to the TKI's.  Any thought on another TKI that might work?

 

Hope everyone is doing well.

 

I had Pulmonary HTN with Sprycel and possible Pleural Effusion with Bosulif, then abnormal kidney and liver with Gleevec

[Trey]

I don't know what the liver and kidney markers were so I don't know your specific case, but the TKI drugs can cause false markers when the problem is not the liver or kidneys at all.  For instance, TKI drugs can cause ALT/AST to go very high but these markers are not specific for the liver, and often the steep rise is related to other issues caused by the drugs.

 

So I don't know if this is your issue, but your Onc seems to give up too easily on the drugs.  Drugs breaks and starting back at low dosage would be the preferred approach to all the drugs you have tried.  So it could be a matter of finding the right dosage, which could be far below recommended levels.

 

If your Onc continues you on this path you will end up with a BMT.  Personally, I would find an Onc who knows how to use reduced dosage to find the right approach for you. 

[Darlene_Jack]

Thanks Trey,

 

I am hoping to talk him into a lower dose of Bousolif or even the Gleevec.  Its worth trying for sure.