106 replies to this topic

[rcase13]

Norway is such a beautiful country. I enjoyed visiting in my youth. Hope to go again someday. Congrats!

[TeddyB]

How do you say "Yay" in Norwegian?

 

We just say "Hurra" really loud

 

Norway is such a beautiful country. I enjoyed visiting in my youth. Hope to go again someday. Congrats!

 

Thank you, glad you enjoyed your stay

[Trey]

HOORAH!!!!  (That's Texas for "YAY")

 

https://www.youtube.com/watch?v=EeXfePNHG9w

Edited by Trey, 01 August 2016 - 08:24 PM.

[TeddyB]

HOORAH!!!!  (That's Texas for "YAY")

 

https://www.youtube.com/watch?v=EeXfePNHG9w

 

Hoorah!! and hurra!! then, and thanks for the song

[scuba]

Hoorah!! and hurra!! then, and thanks for the song

 

skål !!

[TeddyB]

skål !!

 

[TeddyB]

Hello again, just a quick update, i have had 2 new tests since last time. 0,015 around 3-4 months ago, and a big fat zero again on my latest test done in january

 

The red wine in combination with 400mg gleevec (at different times pr day of course) seems to be doing wonders for my PCR, hope you all are good and healthy

[gerry]

I will be toasting your success with a red wine as well teddy - congratulations, may there be continued 0s in your results.

[TeddyB]

I will be toasting your success with a red wine as well teddy - congratulations, may there be continued 0s in your results.

 

Thank you gerry   I hope all is well with you as well.

[Melanie]

Congrats Teddy! I'll be toasting you too! Think I'll volunteer to do the red wine and Bosulif experiment to see if it works as well as yours. Cheers!

[TeddyB]

Congrats Teddy! I'll be toasting you too! Think I'll volunteer to do the red wine and Bosulif experiment to see if it works as well as yours. Cheers!

 

Thank you, i hope the red wine and Bosulif have worked well for you

 

I am considering de-escalating dosage soon, but have not worked up the courage for it yet.

Ive considered 350mg or 300mg to start with, even as low as 200mg as the Destiny trial in the .UK suggests will be very plausible for me. I will have to get my Onc on board, for more frequent testing. I can probably argue that the less drug i take the "cheaper" i am to keep alive, and i can therefore justify the increase in blood tests.

[gerry]

Start having a conversation with your doc, set a timeframe eg after six months / a year of negatives you would like to drop to 300 and if the CML starts to rise again you'll return to full dosage. If they aren't used to doing anything different, sometimes they just need to think about it for awhile. :-)

[Melanie]

Teddy, I would definitely have the discussion at least as Gerry suggested. When I reduced my dose to 300 from 400, I hadn't been even MMR very long. I strongly believe that's why I lost MMR so quickly (within 2 months) and by 3 months, I was back on 400 mg. Last month I regained MMR with a .09. I'll wait a year, then try to reduce again.

Think I'll give credit to your wine/ TKI combo though. I'll keep up the experiment and maybe I'll actually move one more log! Regardless, it's a fun plan! Wishing you the best!

[TeddyB]

Start having a conversation with your doc, set a timeframe eg after six months / a year of negatives you would like to drop to 300 and if the CML starts to rise again you'll return to full dosage. If they aren't used to doing anything different, sometimes they just need to think about it for awhile. :-)

 

I will ask her next appointment

Having some GI issues, so reducing would hopefully make things better. Been having them around 3 months now, not sure what it is, but it seems to really flare up when eating spicy food and/or drinking wine, also some other trigger foods like some raw fruit/veg. I am hoping its the combo gleevec - fistula that is annoying my intestines, and that it will subside soon (2 weeks since i removed the fistula), and i am also thinking gleevec - birch pollen allergies and cross reactions, but not sure. Going to my GP on Monday to try to solve this mystery.

 

Teddy, I would definitely have the discussion at least as Gerry suggested. When I reduced my dose to 300 from 400, I hadn't been even MMR very long. I strongly believe that's why I lost MMR so quickly (within 2 months) and by 3 months, I was back on 400 mg. Last month I regained MMR with a .09. I'll wait a year, then try to reduce again.

Think I'll give credit to your wine/ TKI combo though. I'll keep up the experiment and maybe I'll actually move one more log! Regardless, it's a fun plan! Wishing you the best!

 

Yea i do not have Treys courage of doing it without telling my onc, so i will definitely speak to her about it

Smart move waiting some more before trying again! I have been hovering around 0,01 the last 4 years, and 2 of the last 3 tests have been undetectable, so i am hoping a dose reduction to maybe 200 - 300mg would benefit my stomach. I tried taking my pills 2 times pr day, breakfast and lunch, but that did not help, i guess you have to take them breakfast - dinner for it to help, but i have not tried that yet.

[gerry]

TeddyB have you tried taking a probiotic and psyllium husk (metamucil)? And were you on a stool softener?

[TeddyB]

TeddyB have you tried taking a probiotic and psyllium husk (metamucil)? And were you on a stool softener?

 

Have not tried psyllium husk, but i did try probiotics for a month which helped a bit but not much. I was on a stool softner for a few days after my operation, but gleevec makes my stools lose enough

I am now taking a 300mg Ginger capsule each night before i go to bed, and it seems to be helping.

[gerry]

Ginger will help with nausea as well. :-) the psyllium husk adds a bit of bulk to your stools, so less of the runs.

[TeddyB]

I will keep psyllum husk in mind, thanks

 

I went to the doctor yesterday, and she thinks i have "Fecal Impaction of the Colon" (sounds like fun right?) after examining my stomach, so i go for a CT scan in a few weeks to find out.

 

And so it goes, the never ending GI story continues.

[gerry]

They might put you down for a fecal transplant - a couple of tablets with a glass of wine. :-)

[kat73]

TeddyB - Fecal compaction!  What next down there?  Do they think it has anything to do with the fistula procedures?  I'm just free-associating here, but could there have been some effect from anesthesia products of some kind?  Or pain relievers?  Also, the mind can play tricks on the body - if elimination is associated with pain (fissures, fistulas, etc.), then maybe the body holds off on pushing that stuff out?  I'm sure you are thoroughly sick and tired of dealing with this part of your anatomy!  Thinking of you.