11 replies to this topic

[wallystl]

Hello all.  Started the trial about 85 days ago.  Had a baseline BMB done at the start.  I'll be in for another BMB on Wednesday 8/10/2011 to measure my progress.

My initial dose was 45mg.  After about 3 days I woke up at 3:00 am with extreme pain in my legs & lower back.  I mean extreme. I was taken off the drug for several days and redosed at 30mg. I've done well so far on the new dose.  Typical sides as with Gleevec & Sprycel; bathroom issues, skin rash, head ache, and yes the never ending FATIGUE....  Nevertheless its going fairly well and I'm hanging my hopes on this drug keeping me from a BMT.

I rarely post here, sort of a "Fox-Hole Poster" only when I'm in trouble.  I do check in and read the posts from time to time.  I want everyone to know that I appreciate your contributions to this community and I'm sorry you are struggling with your disease like I am. Sometimes its hard to be a cancer patient.  Hard to be optimistic. Difficult to hang on, just keep trying.

[lala]

Wow...sorry for your pain and sadness.  I can feel your heaviness.  I hope your results look good on Wednesday....I bet a bit of good news would go a long way!  I agree, sometimes it is hard to be a cancer patient.  Very hard when you don't feel good and the results of the medicine are not what you are hoping to see.  Hang in there and good luck on Wed.  Lala

[random]

Wally, thank you for your feedback, very important for all of us.

Be strong, your body will get used to this drug.

HEAD UP!

[Susan61]

Hi Wally:  First let me say that I have not heard that name in years.  My fathers name was Walter,but everybody called him Wally.  Do not be a stranger or lurker on here.   Join in and share your experiences, especiallly with the Ariad Trial.  Its one of the newer ones,and I know some people who are in it, and doing very well.  I wish you the best on your BMB on Wed.  Please share how things are when you get your results.

Susan

[JoshLee]

Hey Wally,

      Just wanted to wish you the best of luck for your BMB results. I also hope you start feeling better very soon. There's no way around it....This s$*t sucks. Keep us posted. Rooting and praying for you. -Josh  p.s. Thanks for your courage to do the Ariad trial, you're helping to pave the way for the continued treatment of this disease.

[HPL]

Hi Wally,

Just want to jump in and wish you best of luck. The drug has been pretty remarkable for T315i patients, so I cross my fingers that you enjoy the benefits as well. I'm a phase 1 guy with T315I, still on 60 mg and knock on wood doing ok. I was CCR at 3 months with a log 2 reduction, so hope you get even better results than that.  I have been weak positive for over 6 months now.  There are others who had trouble at 45 and went down to 30 and doing quite well. My main complaints have been constipation and fatigue, but I have tried to learn to adjust to a new normal...

Hope to hear stellar news from your 3 month BMB.

Regards,

Hans

Woodinville - WA

[BethG]

Hi Wally,

Hang in there! I've been in the Ponatinib trial for over two years now (another t315i-er). When I first started, I went through the extreme bone pain as well. If you can ride it out, the pain does go away after about 72 hours (although those hours are tough--I get through with vicodin). Like you, I cannot tolerate the 45mg, but at the moment I'm doing awesome on the 30mg. Last BMB results showed a complete cytogenetic response and PCR was super low (don't remember the number off the top of my head, but it was .0something...)

This disease is tough and the drugs are tough on our bodies as well. The big trick is learning to manage your fatigue. For me, I roll with it, if I'm tired I sleep. Even though we look "normal" (whatever that means), our bodies are processing some serious medicine and working hard to get well. Recently, I've actually been feeling fairly normal with my energy levels--I mean I can actually stay awake until 9pm! A big accomplishment. :-)

You are not alone my friend! We are all out here pulling for you. Hopefully once your body adjusts, the side effects will diminish for you.

BethG

[wallystl]

Thanks all for your kind words.  Spent the day at the hospital, BMB, EKG, 12 vials of blood, needless to say I'm worn out.  I'll be hearing results in a week or so, talk then.

[random]

Hi, some news?

[wallystl]

Hello all!  MBM & counts reveal that I'm making progress, although slowly.  I'm on a reduced dose (30 mg) due to severe leg pain.  Sides are still difficult especially fatigue.  I've battled fatigue on every form of chemo.  Anyone have any experience with vitamin B shots as a treatment for extreme fatigue? 

[BethG]

Hi Wally,

Glad to hear you are hanging in there! It does get better. Re the Vitamin B...I started taking B12 about 4 months ago, mostly because I was having tingling in my hands and feet. A pleasant "side effect" has been increased energy. I am like a "normal" person now. I can even stay up to 9pm or 10pm once in awhile without suffering the next day. I am taking 30mg of ponatinib due to side effects (for me it was a whole body rash), and I am responding well and my CML is under control (even had a few "faint positive" results).

Good luck and remember, you are not alone. We are walking with you through this maze of CML.

BethG

[valiantchong]

Wondering what is your PCR results, hope you achieve CCR..