3 replies to this topic

[Paula]

Well I spent another week going to doctors and having tests run. So far it seems that my potassium is staying at a normal level and I do feel better but not great.

I am beginning to wonder if I will ever feel good. I am still very tired and having problems with stomach issues. It's every morning routine now that takes hours to get out of the bathroom.

There is only so much I can blame on the Gleevec and wonder if I have valley fever or some other condition that is making me feel so badly.

My primary doctor did take me off my blood pressure as a possible cause of the low potassium and low sodium. Also my blood pressure was 103/58 it has come up to 123/80 and I will see my primary

again next week to monitor my blood pressure. I  was wondering if anyone else is having the same difficulties and if so if you have found any solutions and how are you dealing with them????

I do have medications to help with the side effects but they don't seem to be helping. I am going to see my oncologist next week as well and I am going to ask about changing to a different medication but I was wondering if that is hard to transition to a different drug and if the side effects are as bad.

I am glad that there is a treatment for CML but there has to be something that doesn't make me feel like I have the flu constantly.

Any suggestions would be greatly appreciated.

Thanks so much!!!!!!

[GerryL]

Hi Paula,

Start taking some probiotics to see if that helps with the GI issues, may take a couple of weeks for the gut to recover, but it has helped me. The other thing I found was coffee used to upset my stomach in the beginning, so avoided it for a while. But now that the probiotics are working, I have been able to drink coffee again. So check if anything triggers it off, I know some people found milk an issue all of a sudden. I also eat acidophilous yoghurt as well.

I've never suffered too much from the fatigue other than by the end of the working week, I sometimes feel like a clockwork mouse that has run down. Try exercising as it can help, but make sure it is something you really like to do which will help with motivation. Even if it is only going outside for a half hour walk every day.

My blood pressure dropped once I started Gleevec so I was able to come off the blood pressure tablets. The main issue I have now is some fluid retention, which also sends my blood pressure up on days when it is at its worst, so I take a fluid tablet every couple of days to get it back to normal.

Hopefully between all your doctors you can get a balance, I've found with the information here and what else I've seen on the web I tend to do most of the talking with my primary doctor/s (GPs) as they don't have much of an understanding of Gleevec and its impacts. Though my favourite GP is trying to get her head around it all.

Take care

Gerry

[nathaliece]

Paula,

I am sorry to hear of your suffering.  There are certainly lots of folks on this board who have more experience and are more knowledgeable about CML and drug therapy than I am.  I did want to share with you that 6 weeks ago, I made a change from taking one 400 mg Gleevec tablet daily to taking two 100 mg tablets in the morning with breakfast and two 100mg tablets in the evening with dinner, based on the advice of some of the wonderful people on this board.   For me, changing the dosing decreased the side effects of the drug in a marked way.  When I asked my oncologist about the possibility of making this change, there was no hesitation in doing so.  I have continued to respond quickly and favorably to the Gleevec.  At 7 months I went from a PCR of 17.6% to .02%.

I hope this is just a short stretch of obstacles for you and things improve very soon.

Nat