26 replies to this topic

[hannibellemo]

Hi, Pin,

Dr. Druker recommends Dyazide (hydrochlorathorazide) as a diuretic as it is more potassium sparing. You might ask your  doc about using that  occasionally.

Good luck!

Pat

[Pin]

Hi Gerry, how exciting for you to trial coming off the glivec! I'm looking forward to hearing more about your experience yeah, I'm not able to eat many chips anymore either, I woke up this morning struggling to hear (my ears suffer quite a lot from the fluid too) and uncomfortable swallowing. I guess maybe it is not as trivial as it feels, just compared to some of the other things we suffer from though.

[Pin]

Thanks Pat, I really appreciate that information - I'm going to ask about it at my next doctors appointment. I would hate for the cramping to increase, so potassium sparing would be helpful!

[GerryL]

Hi Pin,

I had trouble at night swallowing when I took the tablet with dinner, which is why I switched to mornings. Felt I could put up with swollen ankles and take a nausea tablet if the nausea got too bad, rather than feeling like I was choking at night.

My specialist put me on Moduretic which isn't as bad on the potassium levels either, but he said only to take it when I needed to, which was always after the fact and when I felt my blood pressure had gone up from the fluid retention. LOL I used to eat a banana a day and drink coconut water to give me extra potassium.

I actually feel like my brain is functioning better since I got off the Gleevec. This side effect had finally cycled through for me in the last couple of months. I found I was forgetting stuff more and more. Darned if I can remember where I put my watch though. But my head does feel less foggy now.

Took a week or so, but I don't seem to be getting night sweats anymore either and now sleeping a bit more soundly at night. And although I suffer from dry eyes -which I did prior to Gleevec, I notice my vision doesn't fluctuate the way it did before when I was on Gleevec.

My doc has suggested I go onto Tasigna if the CML returns, but I'm not sure now after what has happened to Josie. I'm thinking if it comes back, I might start with 400mg Gleevec to knock it down again and then go down to 200mg.

[jjg]

Hi Gerry,

I wouldn't let my eye thing put you off tasigna. For me a bad day on tasigna is still significantly better than the majority of days on glivec. I also posted about bradycardia or low heart rate (often below 40bpm) which seems to have occurred on tasigna. The cardiologist was remarkably unconcerned. He said that my ecg was  hard to interpret because everything was so slow but the stress echo showed the heart motion was entirely normal. The main reason for my low heart rate is being fit but the TKIs seem to have made it even lower. The cardiologist was really clear that he had no experience with tasigna. It's kinda a bummer but I'd prefer that they were honest. At least he said that he would read up on it before witting back to the referring doctor. When you think about it tasinga was only pbs approved in April 2012 so there can't be many aussies on it.

[GerryL]

Thanks Josie.

My doc is switching a few of his patients to Tasigna due to side effects. I'm hoping in the end that I don't have to go back on a TKI, but it is something I need to keep in the back of my mind re which way I would go if the CML comes back. 300mg Gleevec was okay, but 200mg comes with even less side effects, which is why I'm considering it.

[jjg]

Yeah hopefully hopefully these thoughts are completely unnecessary