81 replies to this topic

[sandiolivia16]

Hi Beth,

Have found out that I stopped responding to gleevec after 7 months and have a kinase mutation test.  I read your post about the ariad trial just a couple of days ago and have not seen a post from you recently.  How are you doing?  My doctor said I may need to go into a clinical trial but we do not know yet.  You last post, you were doing well on the ariad. How are you doing now?  sandi

[BethG]

Hi Sandi,

First of all...bummer! I'm so sorry to hear about this.

I am still on the Ariad drug and feeling absolutely fabulous! Better than I have in years--I actually feel "normal". Last weekend I walked a half marathon as a fundraiser with Team in Traiing (and shaved 31 minutes off my time from last year). I am back to work and Life Is Good. I do find that I need to sleep more than I used to (pre-diagnosis). I need to sleep closer to 9 hours a night or I pay for it the next day. I just have to manage my schedule, and cut back on socializing after work during the work week, etc. Exercise is a life saver for me--it helps me keep feeling good and helps my energy levels. The other "major" side effect I have is that I have very dry skin. Others in the trial have experienced rashes, but I haven't had that experience up to this point.

Anyways, please let me know what you find out and I'd be more than happy to answer any questions you have or talk to you more about my experiences with the trial, etc.

Good luck...and remember there are always options.

Beth

[BethG]

Sorry folks, I just noticed that I never gave an update here on how things are going! As you saw in my note to Sandi, overall things are great.

On a molecular level, I started off with 13 out of 20 cells Ph+ in my pre-trial BMB. My three month BMB showed only 2 out of 20! My fish test went from 50% to 4 out of 400 still showing the mutation. Obviously, no one knows what the future will hold--will my response be durable, etc. But, I feel like I have a moment of respite in the storm that is this disease. I feel great and I'm enjoying every single moment of my life. There is nothing like looking into the abyss to change your perspective on just about everything.

Beth

[sandiolivia16]

Beth,

That is awesome...............that you are feeling so good; that makes me feel so much better and you are actually feeling healthy--that is fantastic.  I have not felt healthy since I started on the gleevec in Oct. 08--feel tired and pretty crappy a lot.  Feeling normal is something that I have not felt in a long time. I know now that my pcr numbers are up and that is why I started feeling worse since August.   It should take about a week or so for me to get my tests back but I will let you know what I find out.  You actually did a half of a marathon--that is fantastic.   I am sooooo happy for you and I will pray that you continue to do well in the ariad trial.  As soon as I find out anything I will let you know.  Thank you and take care, blue skys, sandi

[mic]

Yesterday was my start of the new drug Omacetaxine that has to be injected twice a day for seven days a month which I have to injected myself.

Hopfully this will buy me time until they confirm a positive donor which they have found and are doing last testings to confirm a positive typing.

The only thing is in the last 4 weeks I have been getting pins and needles all over and my thighs have some pain, so this drug will show me if it is working or not.

So far so good with the drug and I'll keep everyone updated with this.

[BethG]

Good luck! I'm rooting for you here in California! I actually spoke to the company's chief medical officer when I first found out about my mutation and was doing some research--the company is located less than a mile from my home! It is so awesome there are options for us CMLers, and especially us CMLers who have these nasty mutations.

I sincerely hope this drug does the trick and holds things at bay (if not even more!) until you can find a donor and get things going on that end.

Hugs,

Beth

[mic]

Thanks Beth

Im on the 4th day and Im so tired from this medication but I guess it's not to bad if I have to only have it seven days in a month. I email the drug company Ariad and they told me they don't send it to Australia as yet because it's in early stages,but if I wanted go over there to the US they would treat me.

I will give Omacetaxine a go and see what happens.

[BethG]

Hang in there! I'm sorry to hear about your tiredness...unfortunately I know all too well what that feels like. We could probably write a book on the definitions of tired. I've heard it said Eskimos use 200 words to describe "snow"...us CMLers could do the same re tired.

It makes me sad that due to simple geography you are not able to have access to a treatment that might do the trick for you.

Be determined my friend and do keep checking in! I want to know how you're doing.

Hugs,

Beth

[mic]

Went today in the morning to get my 2nd last injection of Omacetaxine and then went to give blood to see how I have been doing so far this week.

The results came back and everything was in good order except for my plattlets showing a reading of 22 x 10, a bit low so the doctor said not to have the last injection.

How they bounce back within two weeks so I can start another 7 day course.

[BethG]

So glad to hear your other counts are holding steady--that is a big deal! Sorry to hear about the platelets, though. Hopefully they will do a bounce over the next few weeks!  How are you doing other than being tired--I hope you are able to get out and about and enjoy life...you are in Spring now, which is such a beautiful time of the year...

How's the donor search going? Any word yet?

Hang in there my friend!

Beth

[mic]

I feeling ok since off the medicaton and hope the platelets bounce back in time for round 2.

I haven't heard anything about the donor as yet only to keep my fingers crossed.

[Trey]

Here is a recent article about ARIAD AP24534 (which Beth is taking in her clinical trial):

http://www.pipelinereview.com/index.php/2009110330546/Small-Molecules/ARIADs-AP24534-Featured-in-Cancer-Cell-Publication-as-a-Potential-First-in-Class-Pan-BCR-ABL-Inhibitor.html

[BethG]

Trey,

Thanks for posting this...I found it interesting reading. I went to an event at UCSF last Thursday night...the main researchers in the hematology group presented some of their latest research and results. My doc presented some of his work on CML (not the Ariad stuff specifically) and he gave an incredible visual on why the T315I is different and so tough to target.

I continue to feel great--almost normal. I even was able to go to a charitable event last night that my brother-in-law is on the board of. There was a live band and I was even able to get up and boogie. It felt fabulous to stay out late (well until 9:30, but still....) and dance and basically, just be normal. I do hope this continues forever!

Beth

[sandiolivia16]

Beth,

I am so happy for you that you feel "almost normal" and you feel so good.  That is fantastic that you went out and danced.  I will pray that you keep feeling that way.  We are so lucky to have options.  blue skys--sandi

[PhilB]

The results of the Ariad Phase 1 trial as presented at the ASH meeting are now available on line

http://ash.confex.co...Paper24837.html

Given this is a phase 1 trial and therefore most participants are on a much lower dose than the expected eventual clinical level and those on the higher doses haven't been on for long at all it looks excellent news to me.  Careful readers will spot our own Beth lurking in there!

[BethG]

Hey Phil!

Thank you for posting this abstract. The results are certainly encouraging and back up my own experience! It is kind of weird to pick through the patient data and know that I am one of the faces behind the number!

At least I can say with certainty that I've donated my body to science because no one will want this carcass once I'm gone!

Beth

[BethG]

Hi everyone,

Just wanted to add an update to my experience with this drug. On Wednesday, December 23 I received The Best Christmas Present Ever...

My six month bone marrow biopsy results finally arrived (and this particular biopsy was brutal--they had to go in four times because they kept getting dry taps, ughh!)

Anyways the results showed: UNDETECTABLE!!!!

I am so grateful for this chance at a "normal" life! So far, my side effects are minimal--mostly just dry skin and some fatigue (yeahhh to no more sharts!). As all of us know, there are no guarantees for tomorrow, but for today Life Is Good.

I have received my number in Zavie's Zero Club!

I wish that all CML patients could have the opportunity to hear the golden word (undetectable) and my thoughts and prayers are with those whose battle is a lot rougher than mine has been.

Beth

[kenb]

Hello Beth,

That truly is good news and wish you the best for the upcoming year, and forever!    

Ken

[PhilB]

Congratulations again Beth.  I wonder whether you are the first person non-transplant person in history to reach PCRU after developing T315i ?  How would that be for a little footnote in the history books?

[sandimartini47]

Beth,

FANTASTIC!!!! That is such good news; I know you attitude has helped you get to this point. Keep up the good work; we are all pulling for you.sandi