4 replies to this topic

[reedgirl]

Hmmm.....my husband is now three weeks off Tasigna due to elevated liver counts.  Wonder how long a person should stay off treatment, feels like we just cant get a good hold on this and remain on treatment for long.  Started Gleevec in August, took two weeks then off for four, then Tasigna in Sept half dose till Dec, then full dose for three weeks until taken off.  Guess no one ever said this would be easy but after 6 months I was hoping to have been somewhat more stable with things.

Thanks for the opportunity to vent....needed to hear some encouragement, but dont we all

Audrey

[Trey]

It would be a good idea to start back very soon on a low dosage.  Three weeks seems long enough.

[reedgirl]

I have a feeling he might keep him off until our visit on the 28th, I don't know why, just a feeling.  That would make it 5 weeks so I hope not. I'm sure he's keeping him off because the ast and alt are not coming down but rising and the bilirubin that went down climbed a bit.  I wish he'd either run more tests or start another drug, the only one he hasn't taken which is Sprycel.  Now we feel like we're running out of options, Greg's voicing those concerns while I'm thinking them and not knowing how to put him at ease when I myself and not at ease.

Thanks for your reply Trey, I had a feeling you would be saying time to start back up, we're beginning the third week off.

Audrey

[Tedsey]

Hang in there.  I have been through the same.  After a year, things are finally looking up.  How low have your husband's counts been?  Different oncs have different threshholds.  I could tell you what my onc did.  You can compare notes if you want.

Wish you both all the best,

Tedsey

[reedgirl]

Thanks Teds.  I know you understand the disappointments and frustrations.  His bilirubin went to 4.5 so they took him off, after a week off it dropped to 1.2 which was great so I figured they'd put him right back on.  The ast and alt went up to  90 and 168 so she said he wanted another week off to give those a chance to come down. They called today and said stay off another week because the ast went up to  94 and the alt went up to 172.  I know those arent extremely, dangerously high, its just bothersome that this was never a problem until he started Tasigna.

Thanks again for the encouragement,

Audrey