8 replies to this topic

[hannibellemo]

Hi, everyone! Got the call on my PCR results yesterday - exactly the same as it has been the two times before - .2%   I can't really be upset (or surprised) because after 2.5 years at 100 mg. I didn't reach PCRU, but I was at least quite a ways below MMR.

I'm in a quandry - because of my recent scare with air hunger similar to the way I felt when I had the pleural effusion no one is really interested in bumping me up to 70 mg. Because of my liver issues on Gleevec, I'm hesitant to switch to Tasigna and also deal with brand new side effects once again, and Bosutinib, which is similar to Sprycel, may also be more inclined to cause effusion, ditto the new side effects. Plus, 50 mg. of Sprycel is half the cost of 70 - 100 mg. of Sprycel.

I would be interested in thoughts any of you may have. I'm not really concerned, I'm just open for suggestions.

Marnie mentioned dandelions in a different post - I would be happy to see dandelions!

Pat

[Trey]

It is a reasonable choice to prioritize keeping the side effects in check given your histories, while maintaining the steady PCR at this level.  Tasigna is a possibility that may be worthy of trying in the future if nothing changes during the next year.  Some day it will all come together for you.

[Marnie]

I will send you a bottle of my finest dandelion wine. . . I certainly have enough dandelions to make at least a case of the stuff!  Now if I just had the time, the motivation, and a good recipe. . .

[hannibellemo]

Thanks for the support, Trey. From your mouth to...

Pat

[hannibellemo]

Wine! Now that's a fine idea! Sadly, by the time school is out and you have more time for wine making you will want to spend it on more entertaining pursuits. The dandelions will be just bits of fluff by then anyway.

Sounded fun though, thanks for the thought!

Pat

[Susan61]

Hi Pat:  I know we all try to reach that PCRU, but you have been through so much already. You will hold your own where you are, therefore, I would just go easy doing what your doing.  The side effects you have had with other TKI drugs have really taken its toll on you.

           Makes you wonder about Marnie's Dandelion Wine.  They know that the Dandelions kill the root of CML, which is something the TKI drugs do not do.  I wish we could all  eat some Dandelion Salad with a glass of Dandelion Wine to beat this disease every day instead of taking these expensive pills.

          Something better will come our way, and you are stable where you are.  Try not to worry about the PCRU.

          You will get there.

Susan

[GerryL]

Hi Susan

I'm not sure I'd drink dandelion wine while taking a TKI. Dandelion works on the liver to help cleanse it, which may make your TKI leave the body a bit quicker than normal.

[Marnie]

Husband sprayed the dandelions, so they are wilting away.  I don't know how to make dandelion wine anyway.  I'd settle for my glass (or 2) of bubbly anyway.  Thirteen more days until summer vacation.  Yippee!!!!  I think that I just might survive.

Even without the dandelion wine.