30 replies to this topic

[GerryL]

Hi Mark,

Pin and I live in Australia which has a different health system to the US. Side effects need to be really bad for us to move to another TKI, plus if side effects proved worse for us on Tasigna, it would be a bit difficult to move back to Gleevec once you've said the side effects are intolerable.

But it is a good suggestion for people in the US.

[jjg]

Hi Gerry,

I found the qualifying side effects to move off G: http://www.medicarea...ty-criteria.pdf

You need weight gain of 20%. Even for somebody with very little body fat that is a lot of weight gain!

I've been trundling along with mainly just puffy eyes but last week I put on 3kg (6.5 lb) overnight and at first it all went into my face. OMG I was so glad to be on leave and not to need to lecture that morning. I looked like a football, even my lips were swollen and that was just over 5% weight gain. Over the next few days it redistributed a bit - ankles in the evening, face in morning. I went though one day of v regular fluid removal which got rid of about half of it. Hoping my doc will cough up a diuretic for occasional use next time I see her. Do you use a diuretic for events like this one?

Josie

[GerryL]

Your specialist should give you a script, I take Moduretic which when I looked up doesn't impact your potassium levels like some of the other fluid tablets. It was prescribed by my Hematologist. I take my Gleevec in the morning - my fluid retention used to hit me in the throat tissues during the night when I was taking the Gleevec at night. I'd wake up feeling like I was choking and had difficulty swallowing, Trey tipped me off that it could cause this, so I moved the Gleevec. I get now get most of my retention around my ankles. You might be better taking it at lunch time, that should skip the puffy eyes at work and it may not be too bad around the ankles in the afternoon. You're also on 600mg which makes it worse.

A couple of things I have found - it does seem to build up if I don't take a tablet every so often and I really feel it when it has sent my blood pressure up. Red wine seems to make it worse than white, other alcohol like vodka (Black Smirnoff) seems to impact. So I'm always aware of what can happen if I want to have a glass of something.

The other thing is most fluid tablets have a little bit of blood pressure medication, which for most of us helps as fluid retention can drive your blood pressure up. But if you have extreme low blood pressure it could be an issue for you.

My Hematologist offered to switch my TKI when I mentioned about a future reduction of Gleevec, the two things I am trying to reduce can be worse under the other TKIs. Tasigna for its skin rashes and Sprycel for fluid retention. LOL

Hopefully you get the chance to have your baby/ies and then can take a lower dosage of Gleevec eventually. Or even better - they come up with a cure.

[jjg]

Hi Gerry,

The choking thing sounds a bit scary - I've had tightness there but nothing too bad.

I'll certainly be angling for a fluid pill at my appointment (PCR bloods on Tues :-o) and Moduretic has been added to my iPhone list as something to be asked about - thanks for that. I think they are a little less keen on fluid pills for me because of dehydration with exercise and my ALT and AST while never stupidly high are never normal. I think my blood pressure is pretty normal, certainly was pre G but would love to have measured it when I was super puffy as I did feel different...and grumpy! I've never been much of an alcohol person so having less of very little is ok.

I'm actually wanting to ask my doc about an increase to 800mg to maximise the response I can get before I get too old and crusty for babies. I asked her when I had some other problems 2 months ago but she wanted to discuss at this appointment. I can see the conversation going something like this "please give me something to fix all my side effects from 600mg of G, my gum is still infected and can I increase my dose to 800", roll eyes! Still she has been on board with the baby thing right from the first appointment before I was even diagnosed. I was actually in my last cycle before we were going to officially try for a pregnancy when the dodgy bloods came up. Thanks for remembering about the baby thing its very sweet of you. Today I got a text from a friend announcing her first pregnancy (must have happened on the honeymoon), first thought is oh how wonderful, second thought is sadness, third thought is what a nasty person I am for being sad for myself...later thought is without G we wouldn't be worried about a pregnancy which puts things in perspective.

[Pin]

Hi Mark,  As Gerry and Josie have said (thanks guys!), our healthcare system is a bit different in Australia. I hope soon that they might be able to move towards care for us that doesn't have these types of restrictions - as it is a difficult choice for us to decide on trying an unknown drug with its possible side effects vs. staying with what the side effects we currently have. I guess it is working on the better the devil you know priniciple.   Anyway, things have gotten a bit better for me with respect to this particular side effect - the eye oedema isn't quite as bad (or I am just more used to it now!) unless I am unfortunate enough to need to cry, then the next day I can't see so good out of my face...  Welcome to the board anyway! Cheers, Pin.

[GerryL]

Hi Pin,

Though our health care system can be a bit slow and painful at times, for me it is better than a lot of other health care systems around the world. I can't imagine going through the stress of being diagnosed with CML, then having to negotiate with insurance companies to get your drug. Plus we get our drug at an extremely reduced rate each month. I'm sure a lot of the people here would like to only have to pay $35.00 a month for their Gleevec.

It's great your side effects are settling down, only thing to remember is summer is here and fluid retention does tend to get a bit worse in the heat.

[GerryL]

Josie,

You are entitled to feel a bit sorry for yourself. life has thrown us all a bit of a curve ball. Be interesting to see how you're progressing on the 600mg, it should be giving you a reasonably fast response. Hopefully it is enough that you don't need to go to 800mg, but I do admire your courage in going there if you need to to achieve your goal.

[Pin]

Of course! I hope I didn't sound ungrateful for the current system that we have because I certainly am grateful! It's so upsetting that people have to negotiate insurance as well as coping with their disease. Also thanks for the tip about the hot weather and oedema - it seems summer has finally arrived!

[Pin]

Hey Josie, Good luck with your PCR tomorrow! I hope you are PCRU, same as Gerry - I think you've got a pretty good chance!

[jjg]

Thanks Guys!!!!