70 replies to this topic

[Pin]

Yes they are

[Pin]

Haha, thanks Gerry - if only I loved living on the edge!! I don't know what's to come - the doctors keep telling me this still makes me eligible for stopping, which confuses me somewhat, because I thought you had to be 4.5 or 5 log for that (for 2 years), my results only being < 4 log.

[Pin]

Thanks Lucky, I know you do It is the long game isn't it, a good reminder. I think also something that complicates it, is when you get to undetected now or any low level, it feels like there is another goal to strive for - aiming to come off or reduce medication. As per Trey's argument, I'm not sure if coming off is necessarily the right option for everyone (or even just some of us) just yet, there's simply not enough data - and not being able to accurately predict who will be able to stop is worrying for me. But it is such a tempting goal. Sometimes, it is good to remind ourselves just what we have, even with medication and all the side effects and all.

Happy birthday to your boys! I'm coming up to my 3 year-versary in a few months, and I really can't believe it!

[Pin]

Thank you - that's a good reminder The difference psychologically between one test to the next, the two having minimal difference between them is really astounding.

[GerryL]

The Destiny trial in England is including people at MMR, so perhaps that's why they are talking about it to you.

[Pin]

I think the new term for it is MR 4.0, which is still considered 'CMR'.ish. It's interesting getting your head around the new guidelines, but it makes you realise that close enough is probably good enough, it's not like there's any real magic in the numbers.  I don't think I'm eligible for an actual trial, but I think I would be ok to do a one-subject doctor-monitored dealy like you

[GerryL]

The Australian trials also allowed for little bounces, which did occur for some. My doc and I agreed on this, as long as we didn't see any trends, then a bounce would be okay. So far no bounces thankfully. I get my blood taken next week and if the results come back negative I will allow myself to do a little happy dance (not a big polka mind you, just a couple of quick steps LOL) I will have gotten through the first six months.

Because the testing is not the most accurate, the Destiny trial will be looking to see if people can maintain the low levels of CML for people in MMR. If the trials turn out to be successful for a number of people, that would help you with your decision about stopping. By the sound of it you doc would be more than happy to work with you on it.

[winespritzer]

Dear Gerry,

Onc thinks that the thistle tea helped, maybe!! My liver enzymes went down from the 1 month test to the 3 months.

Hoping my .386% PCR is an almost MMR. Onc said these numbers are a technicality and that they supercede the cytogenetic response. Next test is in 10 weeks.

Internist said turmeric doesn't help anyone but I am using it anyway!

A little confused but grateful to be mostly well! Eating a ton of red,  orange, yellow, green, blue and purple fruits/vegetables.

Thanks for all your support,

Winespritzer

(was told not to drink any alcohol)

[GerryL]

Great news on your liver.

I was lucky enough not to have any issues with mine, allowed me to take Paracetamol when I needed it. I'm still on the lemon juice everyday. I've just had a blood test so hoping my cholesterol is on its way down, it had come down slightly since the last test, not sure if it is due to the high strength fish oil or the Fast exercise I do. Turmeric has helped me with joint pain, just keep an eye out for extra bruises. I restarted it when I came off the Gleevec and have had less bruises, so not sure if it was related.

[GerryL]

Darn on the alcohol - perhaps if your liver recovers enough you can have the occasional glass.

[winespritzer]

Dear Gerry,

Thanks!

I totally forgot that for many weeks, I drank the juice of a whole lemon either in hot or cold water. I'll bet that helped the liver lots!

I'll await the next round of tests. Doctor reminded me that my liver enzymes were above normal before I began treatment and that is why I should stick to ginger ale.

Winespritzer