23 replies to this topic

[ChrisC]

Hi Susan,

We're all different. You have stuck to your treatment regime for so long, and are satisfied with the results. All the best to you!

Me, I found that my body didn't like having medication that produced such debilitating side effects, and fortunately I was able to find support for stopping taking it, backed up by current medical trials.

Your doctor apparently doesn't agree with applying the trial results to your case, and you are fine with that. Your choice. You might get a second, or third opinion, if you ever feel to take a break from Gleevec and see how strong your internal defense system is these days

As long as you are willing to live with the effects of taking medication for the rest of your life, with no breaks, we have your back.

Me, I have applied a different philosophy and am very happy with my results.

All the best,

ChrisC

[Susan61]

Truthfully I do not know which way to go anymore.  I have a long list of other health problems, so I just count my Blessings everyday.  I can see a lot of the younger people thinking far into the future as to not wanting to live like this for many years.  I am going to be 66, and maybe thats why I do not push to do anything else.

I see we have so many young people being diagnosed lately with CML.  It used to be the over 50 disease, where most people I knew were not diagnosed so young.

Thank You for your feedback.  I welcome any comments or ideas.  I did the trial for the Gleevec, and I do not think I have the energy or would even be considered for any other trial that might come along.

All The Best To You Too

Susan

[scuba]

HI Susan,

I can't help it Susan ... you wrote, " I have been PCRU for 11 years, and have had CML for 15 years this Dec".

You didn't have CML for 15 years. You had it for maybe 5 years and you have been cured for ten years. You are taking a drug that is giving you side affects and other things for over 10 years. The last CMl cell in your body died ten years ago. Done. Think about that.

I had to say it. Consider lowering your dose to what Trey takes (I believe it is 200mg. Gleevec). At least you will have less side affects. And then please let me wager on your next PCR result. I'll wager that your next test result is ZERO. Not below detection, not PCR < 0.001 .... ZERO. None.

Trey is cured also - and he keeps taking his Gleevec. So...as Chris said, we each have to follow what guides us. But I know you are cured. And that is wonderful.

I can't wait to get off this drug and join the zero club.

[ChrisC]

Susan, when I say "we've got your back," it means that if you can use our encouragement to make the move to taking action re your Gleevec dosage, or taking a calculated vacation from it, we are willing to confront every one of your fears and hesitations!

Remember: you can do ANYTHING with the support and encouragement of your friends and family!

Just say the word, or hint it, or wink . . . !

And why not give it a try . . . all the available research that I've seen indicates that there is no harm or damage to stopping your Gleevec after being PCRU steadily for TWO YEARS. You have a built-in buffer many times over.

What do you say?