Topic: LY2801653 clinical trial

I met with my new onc today. You like those words, Lainy, Marion, Pam???
Her suggestion: a phase 1 clinical trial using no chemo. This drug, as I understand it, is to work with the body to keep the disease stable. I can handle that, as I am not "sick" and was not looking forward to chemo. If we can keep it stable for four months or so, I can revisit radiation!!
I am so excited, but need to read all 27 or so pages.
It looks like there are side effects, but not as bad as chemo. And they will need to do an endoscopic biopsy thru my stomach wall to get to the new node to have a biopsy done. They are also using genetic testing to see how "we" handle the drug...
And if it doesn't work, the new node is not in that dangerous an area where we need to worry immediately. If it doesn't work, we go to the evil that we know: chemo. More on the trial as I learn more.

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: LY2801653 clinical trial

I have been approved for the clinical trial! Biopsy is scheduled for next week and I start the trial the following Monday, the 22nd. I can't wait to see how well this new drug works!

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: LY2801653 clinical trial

Kris, great news!! I hope it works as well for you as my new drug is working for my UC. You so deserve to be in the trial, you have certainly worked your A-- off for it. I am so excited for you!

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: LY2801653 clinical trial

Great news indeed Kris and I hope that everything goes well and as planned. Everything will be crossed for you here and I look forward to hearing all about it.

Go Kris!!!!!

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: LY2801653 clinical trial

Kris....so thrilled to know that another door may open for you in the fight against this cancer.   A million good wishes are heading your way.
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: LY2801653 clinical trial

Hi Kris,

I found this about your study drug ... Sounds exciting



http://www.wjgnet.com/1007-9327/full/v18/i21/2591.htm


Abstract # 2339: Prevalence of MET expression, activating mutations of KRAS and IDH1/2, and ROS1 fusions in cholangiocarcinoma patient tumor samples Exploring the c-MET pathway from a different direction is LY2801653, a small molecule, reversible oral ATP-competitive c-MET inhibitor. In addition to targeting MET, LY2801653 has been shown to inhibit the activity of ROS1 fusion proteins and MNK1 and MNK2, two signaling proteins downstream of KRAS. The study evaluated LY2801653 as a potential treatment of cholangiocarcinoma, a rare cancer that originates in the biliary tract epithelium and has a typically poor prognosis.

The study examined the prevalence of MET overexpression, activating single point mutations of KRAS and IDH1/2, and ROS1 gene fusions in intrahepatic and extrahepatic cholangiocarcinoma tumor tissues obtained from non-Asian (n=40) and Asian (n=60) patients. The majority of cholangiocarcinoma tumors expressed MET with approximately 50 percent of cases having strong staining (IHC score of 2+ or 3+). Overall, 25 percent of analyzed samples were positive for KRAS mutation, and mutations were more frequent in Asian patients. At approximately 60 percent of samples, G12D was the predominant mutation. For IDH1, the frequency of mutation was less than 10 percent overall, with R132C as the predominant mutation. IDH mutations were more frequent in non-Asian patients. There is no apparent correlation of MET expression with either KRAS or IDH1 mutations. IDH2 and ROS1 analyses are ongoing. The data suggest that inhibitors of receptor tyrosine kinases and their signaling pathways--such as LY2801653--may merit clinical evaluation in patients with cholangiocarcinoma.

Re: LY2801653 clinical trial

I started the trial today. It was a long (can you say long?) day! 8 hours of not much... Blood work, wait..... Meet with onc.... Wait..... EKG and first day of pills..... Wait 4 hours UGH! And I forgot my chargers so my iPad died and my phone was about to!! Then another EKG and I was FINALLY free to go! Back tomorrow for 1-2 hours.
I will definitely keep everyone in the loop about this as I'm very hopeful we will ALL benefit from the results!! Just me first! big_smile --    I like to be first!!
I'm hoping for little to no side effects.....

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.

8 (edited by marions Mon, 22 Apr 2013 22:05:00)

Re: LY2801653 clinical trial

Kris.... you deserve it.  You should be the first to reap the benefits of this treatment.    Rooting for you and wishing for the absolute best response.  You have had to deal with so many side effects already and deserve a big break on this one. 
And, dear Kris, charger....charger...charger.  You may want to post on this site while waiting around at the facility.
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: LY2801653 clinical trial

Kris. Not to worry about the Trial, or the wait times, or to see if you tolerate the Trial...No,not Kris. what is important is the IPAD and Phone problems! What you see here folks is a great attitude! Love you girl and seiRously hope you breeze right through.  {} {}

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: LY2801653 clinical trial

Go Kris!!! And remember to get all charged up from now on in! smile

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: LY2801653 clinical trial

Hi Kris,

Hope you got a good night's sleep after such a long day yesterday!!!  Glad today won't be as long for you!!!  Stay strong and keep your positive attitude.  I know we will be hearing good things from you!!!

Mary

Re: LY2801653 clinical trial

6 days in and no side effects at all!! Yippee! Scan is set for mid June so won't know much until then.

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: LY2801653 clinical trial

Yea! Kris, let's just wish for your success to continue. I am so excited, I can't stand it! Since I can't wait for June, send me a pictue of you and I will scan it! Well, what else did you expect from me?  LOL

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: LY2801653 clinical trial

Kris.....awesome news.  It warms my heart to know this.  Enjoy.
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: LY2801653 clinical trial

Yay for you, Kris. I'm happy things are going well!!

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: LY2801653 clinical trial

Hi everyone.
4 weeks in and my numbers are good. CA19-9 is down to 39.3!!!!! Normal is 0-37 here. Last month it was 48.8, so I'm hopeful!! Biggest side effect? I've gained 10 lbs. and have dry skin patches and patches of breakouts on my face, hairline and scalp. And my hands are bloated a little. Usually goes down during the day, but a pain for wearing rings! Lol
I'm hopeful this is working. Can't wait for 4 weeks to see what the results are on the ct scan.

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: LY2801653 clinical trial

YEA! Kris, way to go. We will be a pair for our visit as I am also bloated from Preds.
Should we try out as floats for the Macy's Thanksgiving Parade? We have a saying in my neck of the woods, "OY VEY" Yiddish for OMG! Just think a week from tomorrow. I sure hope you are OK to drive. Hey, what's a little bloat to get the numbers you are getting? May your weight and numbers keep going down!

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: LY2801653 clinical trial

Hi Kris,

Great news - hope the side effects subside enough to make you more comfortable.  Will be looking forward to positive CT scan results!!!

Mary

Re: LY2801653 clinical trial

Great news Kris.

Wishing for great news in June. You are a true fighter!

Re: LY2801653 clinical trial

Yes!! Keeping you in my thoughts for your markers to keep on declining and your side effects not to get uncomfortable while you wait for the scan in June. Hang in there, Kris! You really amaze me.
Willow

Willow

Re: LY2801653 clinical trial

I must be missing a puffy girl convention....round 6 of steroids.......they work wonders...that is on the waist line.
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: LY2801653 clinical trial

Haha! I'm not uncomfortable, except when I try to wear any of my new clothes from the past few months! Ugh!! The scalp is itchy and annoying but nothing compared to SIDE EFFECTS!! I'll take it any day! As for bloating in hands... I've switched my rings down a finger! Haha
Lisa, I'll swing by and pick you up!

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: LY2801653 clinical trial

Yes! Kris pick up Lisa, we have room. All us PUFF balls will have a great time!

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: LY2801653 clinical trial

New side effect: my feet are HUGE by the end of the day! And BUZZY!! And the eruptions on my face and scalp are worse and itch like crazy! Still not bad enough for me to quit, and hopefully not enough to have them stop it. I find out Monday. Maybe they can lessen the dosage....

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: LY2801653 clinical trial

Kris, sorry to hear this. Can you take Benedryl or something to help with itching ?
Love ya
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