Tumor Profiling - I have to share with you
 

Hello Gang,
I am sorry I have not posted in a long while; but for a GOOD reason! I am still pretty stable after 8 years post metastatic dx.
I am writing to share news about what I think is extraordinary pathology testing. I had a small tumor pop up in my lungs when I went on a short Herceptin holiday. My oncologist had it biopsied a couple of weeks ago and sent the tissue samples to Precipio Diagnostics at Yale in New Haven CT.
The report was amazing. They did a complete tumor profile; identified the exact gene mutation I am experiencing in that tumor (PIK3CA G1049S); then identified a promising med that will target that particular type of mutation. They also listed relevant available clinical trials with a link on clinical trials.gov. This is MUCH more info than from a standard lab and of course gives me the HOPE that comes from recommended trials and treatments.

Their web site (if you want to check it out) http://www.precipiodx.com/physicians...profiling.html

Also, when I called them to ask how I can get a bx sample to them; they sent me the FedEx package to mail the Biopsy results in. They consulted with my doc; all in all a great experience!!

I am happy to send a copy of my report if you are interested in seeing how it looks if you PM me.
Love Kim (from CT)

Re: Tumor Profiling - I have to share with you
 

wow, that's wonderful news. I think we are finally beginning to see a turn toward targeting txs.

Re: Tumor Profiling - I have to share with you
 

Thank you Kim. I keep a file of options for the future if I need them. This is definitely going in there!

I'm sure that lung met will leave as quickly as it came!!

Love,

Rachael

Re: Tumor Profiling - I have to share with you
 

Kim,
This is cutting edge. Thanks for sharing your information on the new frontier of fighting this disease. Keep going!
Love, your friend,
Karen

Re: Tumor Profiling - I have to share with you
 

Hi Kim
I had already sent my pm before I read this post. It is so good to hear that they have been able to so effectively track down the culprit gene and better still that there are good options to zap it. Please keep us informed on what treatment path you go down.
Ellie

Re: Tumor Profiling - I have to share with you
 

Ellie,
Yes, it is specific treatment options and HOPE that carries the day for me!
For my tumor's genetic mutation the lab noted a promising drug called Everolimus which is now approved for use with renal carcinoma. They thought it would be the most effective and has already shown promising results. It is comforting to know exactly which drug has the best shot at working when this pesty lung met starts to act up again. In the meantime; Herceptin continues to work well.
The hope that this gives me, made it worth the effort of shouting from the tree tops!
XOXO

Re: Tumor Profiling - I have to share with you
 

Love ya Kim!!!

Re: Tumor Profiling - I have to share with you
 

Becky! Such an Angel! So GOOD to see your beautiful picture, hear a chirp and see by your signature that you seem to be A-OK!
Wish we were next door neighbors!!

Re: Tumor Profiling - I have to share with you
 

Kim, very interesting, and as you say, HOPE filled post.

Thanks

Re: Tumor Profiling - I have to share with you
 

As usual, Kim, you go right to the top, without wasting time on the way!

Evirolimus is also called Afinitor, and has been used by some of the members here in the early trials last year. You could search by Afinitor as well and see what the other gals had to say about it.

This was one of the "darlings" of the San Antonio Breast Cancer Symposium last year. It got approval last July by the FDA to use with a homorne suppressor (I think), and some trials are ongoing for other stages/uses.

Good drug to have in your "bank account."

Re: Tumor Profiling - I have to share with you
 

Hey StephN! As always you have words of wisdom - thank you for chirping! I didn't know its trade name is Afinitor - and Afinitor I am familiar with. I am comforted to know it is already approved for use for some other cancers; so when it is my time to change therapies my doctor won't be WASTING time on tykerb, T-dm1 trials, etc; he knows that my tumor will respond to this everolimus or Afinitor. The strides they are making today are incredible - gives me so much hope for my daughters -
xoxo

Re: Tumor Profiling - I have to share with you
 

And StephN - SO HAPPY to see you are STILL NED - EVEN if it is on a wing and a prayer!!!

Re: Tumor Profiling - I have to share with you
 

Kim, Outstanding! What awesome hope for all of us some day! Thank you so much for the update. How absolutely wonderful for you. Gods blessings to you and your family. Peace my friend,

Nancy

Re: Tumor Profiling - I have to share with you
 

Dear mamacze,
Thank you for emailing me the info!

Re: Tumor Profiling - I have to share with you
 

Kim,
This is exciting news and I'm sending all the love and positive energy to you in this new treatment. You are a pioneer, this is very exciting. Hopefully this means we finally "getting there"
hugs and love
health and happiness
sarah

Re: Tumor Profiling - I have to share with you
 

Evergreen - you are welcome, I hope the info is helpful!

And Sarah - oh my gosh, I have to log in more often. It is so nice to hear from you! Yes, it is exciting news; I feel like we are turning the corner with new diagnostic tools and genetic profiling.
How are you doing? I think of you often and just kick myself for not logging in more often.
xxoxo

Re: Tumor Profiling - I have to share with you
 

Hi Kim!

Wow that certainly is amazing to get that much info on your tumor. You are a pioneer for sure!

Since I'm not up to speed on lung tumors, can you share how the biopsy was taken? Was this an out patient procedure?

Like you, my Herceptin holiday didn't last as long as I'd hoped, so this is timely info for me as well.

Hugs to you Sister!
Kim

Re: Tumor Profiling - I have to share with you
 

Hi Kim,
It was nice to see a post from you. I'm doing well, thank you.
Last winter I had serious breathing problems and they discovered I'd had a heart attack - it was news to me!! I just had pain in my chest when I went out in the cold to walk my dog in the morning!!! Anyway an artery had closed up due to the radiation I had for BC, so I had an angioplasty and a stent put in. so now I'm on pills for that!!! I also have fibrosis in one lung also because of the radiation. But all of that is just easy stuff. I watched the angioplasty - it was fascinating. I had to stifle a laugh when the doc said "merde" (shit) in the middle of the op! Not something you like to hear when something's being pushed up a vein from your groin!!! it was because the scanner slammed into the bed and he needed it to move it to the other side to see so then they pulled it around. He was thrilled when the vein burst open - apparently when a vein is blocked 100% it's not a sure thing that they can open it!!! something he only divulged to me the night before the op!!! so I took 2 mild sleeping pills that night - one the nurse gave me and one my roommate had squirreled away!
I just got back from 3 weeks in China which was very interesting.
Keep us posted on what's going on with you. It all sounds very well planned. Hope this new treatment is easy to take, get well and come and visit me!
hugs and love sarah

Re: Tumor Profiling - I have to share with you
 

Oh Kim, I am sick at heart that you too had a set back after your Herceptin holiday. I think deep in the recesses of our minds, there is a tiny whisper of hope that maybe we are cured and don't need our Vitamin H after all; but sadly, that is not the case. Where did your cancer recur? Please don't tell me your brain...:>(

Yes the procedure was same day and in performed in radiology. The interventional radiologist simply numbed me up, slid the tiniest of wires into my lungs, scraped a few samples of the tumor then sent it to Precipio Diagnostics in the packaging that Precipio provided to me.
(You can check them out at http://www.precipiodx.com/contact.html) I asked my oncologist to have the biopsy sent there, instead of the in hospital lab. I was very interested to see exactly what my genetic mutation was and to know what treatments are effective with it, and am amazed at the report. I will get my oncologists opinion in 2 weeks (delayed because of hurricane). Kim, please keep me posted on what you decide to do and what treatments you go on. Our histories are so similar.

Sarah - you had a HEART ATTACK??!!!?! Good Grief!! Cancer isn't enough?!? Thank God alls well that ended well! And how wonderful you had what I hope was a restful and fun 3 weeks in China!

Wish we all were neighbors!
xoxo Love Kim (from CT)

Re: Tumor Profiling - I have to share with you
 

Kim,
Very exciting! Please don't stay away too long again.

Best Wishes,
Jean