Topic: Update on LY2801653 clinical trial

Hi, everyone. I am now on cycle 11 of this phase 1 clinical trial, and all is better than hoped for.
To recap, I had multiple treatment paths. 3 different chemo courses, 1 SBRT radiation round. The radiated areas are still nice and quiet after 1-1/2 years, but I had a new met to a more distant lymph node last April. So, I packed up my attachment to Sloan Kettering and entered a clinical trial at Fox Chase, only 20 min. from my house.
11 cycles (a cycle is 28 days) and I am more than happy!
The affected lymph node is considered stable, although there has been minimal decrease in size. That's DECREASE! And no new mets!

To recap the trial, LY2801653 is an Eli Lilly drug that is as yet unnamed. It is an inhibitor. Not to be confused with immunotherapy. But not chemo. The long term side effects are not well known, as I am one of the first 50-60 to take the drug and be documented, especially long-term.
The drug itself is designed to prohibit further growth, and so is working quite well for me.
Known side effects can be bad, but rare. I know they are particularly concerned with kidney functions. And I met a gentleman who had an allergic reaction to the drug. His whole face/body was covered in hives. Obviously, he was removed from this trial.
The side effects I've noticed are swelling in the hands, feet and face. Thinning hair, weight gain, and possibly tiredness. And itchy, pimple-like eruptions on face, scalp, neck and upper torso.
No nausea, no vomiting, no constipation or diarrhea.

Now, for more information... This drug has continued to phase 2.
I do not know if it is still open or closed. But the restrictions are tight. The patient can have had 1 treatment path. And the drug is now being paired with cisplatin. I did not ask my onc if she knew anything about the new phase and how it's going... I will try to remember to ask in 4 weeks. (I also forgot a few of my own questions).

For anyone interested in the previous posts about the trial, here is the link: http://www.cholangiocarcinoma.org/punbb … hp?id=9818

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Update on LY2801653 clinical trial

Kris.."decrease" and no new "mets", incredible, beautiful news.  I am absolutely, positively thrilled for you.  Do you continue on with 28 day cycle?

Also, thanks for compiling your in one thread.  As soon as Rick get's to it, he will add a "sticky."

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on LY2801653 clinical trial

Hey Cookie, fantastic news! I am so excited for you, hope the goodness keeps on giving! You know I wish you the very best and more good news!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on LY2801653 clinical trial

So much great news on clinical trials...Maybe this is what progress feels like!!

Kris, I am so glad you are doing so well.  I remember asking about multi-year survivors w/o surgery.  When I heard your story, I thought it was very inspirational.  Keep on keeping on!

I'll add this info to the wiki tomorrow. 

congrats,

Jason

Re: Update on LY2801653 clinical trial

I'm staying in the phase 1 section of the trial. We are continuing 28 day cycles.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Update on LY2801653 clinical trial

Good news on your progress, Kris. I wish you continued success.

Carl

Re: Update on LY2801653 clinical trial

Fantastic news Kris, so happy for you.
Hugs
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Update on LY2801653 clinical trial

Great new Kris. Keep it up!

Suzy

Re: Update on LY2801653 clinical trial

Kris I am glad things are going so well for you and having few side effects on top of no new growth and no new mets.  Awesome news.  I admire your strength and inspiration.  You are such a fighter! Hugs.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Update on LY2801653 clinical trial

Great news Kris!  I hope it continues well for you!

Re: Update on LY2801653 clinical trial

I met with Dr. Denlinger yesterday. It's so great to actually say I had a good visit with my onc! For those of you who remember, going to see Dr. Kemeny was like pulling teeth.
I'm having some minor ailments, mostly edema in my legs. The swelling is almost to the knee now, so we are trying Lasix. Not a fan of the side effects, but I hopefully won't have to take this too long. We have put off giving me Lasix, but it's at the point that it's pretty necessary.
We also talked about genomic testing. She is going to check with pathology to see if there is enough sample left for the testing. Also, possibly try to get some of the original, pre treatment samples from Sloan Kettering from 3 years ago.
She is also going to see about setting up a support group. There are many cc patients at Fox Chase, many of whom she sees. I think she has about 20 patients. I told her I would deal with the counselor or whoever to try to coordinate a good time to gave these meetings.
As far as the testing goes, many hospitals charge $3-5000 for it. She sends her testing out to another company, which works with insurance and the patient to get the testing done at much less cost to the patient. So hopefully Medicare and my part B cover it. It will be nice to know the information, if only, for now, to help others determine what chemo will work better.
I'm hoping to hear soon! Here's to the future of medicine!

Oh, and my CA19-9 is 32!!!!!!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Update on LY2801653 clinical trial

Thanks, Kris, that was quick.  But, then I remember you being a night owl.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on LY2801653 clinical trial

We have to add Lynn to the trial. Her husband, Carl, visits this board. She began the trial last week, I think. I visited them today. She is on Phase 2 which means she gets cisplatin also. Today was chemo day so I spent an hour or so with them and tried to keep her mind off the cisplatin! I was there at the beginning, tho, and after they administered the pre chemo meds, I knew she'd get tired. So I left her to sleep. What a nice couple of people. I'm glad I went!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

14 (edited by marions Thu, 20 Mar 2014 03:50:02)

Re: Update on LY2801653 clinical trial

Kris....so glad that you were there in support of Lynn and Carl.  Who better than you? I wish for Lynn to benefit from this trial as well as you have, dear Kris.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on LY2801653 clinical trial

Thanks Kris and Marion,

We are excited and hopeful about this trial.

It was such a pleasure meeting Kris in person yesterday. We talked about the trial. And we all agreed what a terrific oncologist we have in Dr. Denlinger.

We also had an enjoyable discussion regarding multiple non-ICC topics. We especially liked when Kris described how she got involved with karaoke and how she has gone from knowing one song to being a top entrant in karaoke competitions. Way to go Kris.

Thanks Kris for taking the time to stop by and meet with Lynn and I. We look forward to seeing you again very soon.

Carl

Re: Update on LY2801653 clinical trial

Kris, Carl and Lynn, it is so beautiful that you all got to meet. I think it is very exciting to meet another member of our family and just gives one the best feeling in the world.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on LY2801653 clinical trial

Carl, it was my pleasure to meet you and Lynn! And I took the subject off cc to make you two laugh and relieve some of the stress... I know how hard those long days can get. Even a brief hour of smiles and laughter removes us from the stress of thinking "chemo", "cc", etc... And laughter is the best medicine! If some of your days are Tuesdays they might coordinate. Otherwise, we might just have to have me crash the party again.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Update on LY2801653 clinical trial

I am starting cycle 12. They have added some side effects to the list. Edema and fatigue are most common, along with something else which I can't remember... And nausea, diarrhea, constipation are less common. No mention of the acne like skin or hair loss.
My nurse today was distracted by having to fill the pump. So distracted that I didn't notice she forgot my labs!! lol
And I have the beginnings of a UTI so I'm on Cipro. So in 2 months my meds have doubled! We talked about the edema and the fact that I can't seem to take a day off: the swelling comes right back, not that it goes away completely. But kidneys look good so I will keep taking it.
Scan yesterday shows nothing new. And stability. So I'm happy there. CA19-9 is up a bit to 39. Guess I gotta lay off the meat for a bit.
All in all, a good day!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Update on LY2801653 clinical trial

Good news, Kris! Thanks for he update.

Willow

Re: Update on LY2801653 clinical trial

Great news on the scan Kris! Hope that the cipro works and it clears up the possible infection as well.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on LY2801653 clinical trial

Good News Kris.  smile

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on LY2801653 clinical trial

Way to go, Cookie! I just feel so bad for all that goes along with it but if it's working that is the best news! Hang in girl, I KNOW you and I know you can do it! Sending huge hugs! {}{}

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on LY2801653 clinical trial

Thanks for the update Kris. Glad to hear the scan was good. Hopefully you start feeling better quickly.

Carl

Re: Update on LY2801653 clinical trial

All that goes along with it is still a heck of a lot better than traditional chemo! I'll take my "normal" head of hair and large left leg over sever nausea any day!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Update on LY2801653 clinical trial

Kris....you speak from experience.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER