Re: Update on LY2801653 clinical trial

Not good. The cancer has grown in and outside the liver. The lymph nodes, which had been contained by Gem/Cis such that they weren't even showing, are now bigger than before. Lynn has pain in her shoulder and abdomen all the time. She is back on Oxy for pain. She is bloated from the liver growth. Feels terrible all the time. No appetite.
Man how things have gone downhill in a hurry.

As of today we are officially off the trial and will begin a new chemo regimen (Folfox) beginning next week. Hoping for another successful period of chemo so we can get back to where we were before the trial.

Options are starting to diminish unless we can contain this growth. From day one, however, Lynn's cancer has been very, very aggressive and grows at incredible rates without chemo.

Having expressed the reality of the situation, I can still look back at almost exactly a year ago when Lynn's condition was so difficult we weren't even sure they would administer the first round of chemo.So from that perspective we are in a better position this May than we were last May.

Carl

Re: Update on LY2801653 clinical trial

Oh, Carl. I am so sorry. I wish there was something I could do.
Did you ever have the genomic sequencing done? It seems to have targeted specific treatment options for me...
I sure hope the Folfox helps Lynn. Kick some butt! Please keep me posted.

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

Carl, I too am so sorry to hear of this down hill slide in Lynn's treatment.  Hoping that the chemo will turn this around and that the pain can be kept under control.  Hoping for the best results.  Let us know how things are going when you can.

Love & Hugs To You Both,
Darla

"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

Carl,

Real sorry to hear this latest news about Lynn. Like Kris and Darla I will keep my fingers crossed for Lynn that the Folfox starts working fast and works well too. Please do not give up hope, and as you say think back to a year ago when you weren't even sure if Lynn would get to start that first round of the chemo. You know that we are all here rooting for Lynn and everyone is here for you too. Please let us know how things go.

Thinking of you both right now.

Gavin

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

I'm 14 months into this trial... The hair thinned but seems to be holding steady. The fatigue is getting worse, but I can handle that. The edema is getting worse, too. But Lasix 2x a day is keeping it mostly at bay.
I discussed my concerns with Dr. Denlinger. I am flying to Alabama at the end of July to see Mom & Dad, and all my brothers and families. We are busy coordinating this now. My concern is the flying with the edema.
Dr. Ds response was a surprise. Since I am past 14 cycles, I have more than met the criteria for the trial. I am now "maintenance". Still being followed, but the requirements were met. So, provided the CT scan in July looks good, Dr. D is going to suggest to Lilly that I get a 2-3 week break. Hopefully it will give my body a little time to bounce back a little bit from the cumulative effects. Hopefully they allow it!

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

Newest update... Things have continued to be stable. The edema is pretty much under control with Lasix.
I spoke with Dr. Denlinger. My next scan is Monday and I get results Tuesday. As long as the scan is good, Dr. D is going to request a couple of weeks off for me, while I travel to Alabama to see family. I'm hoping they say yes, and the edema lessens on it's own. As well as the fatigue. Maybe I can get back to "normal", whatever that is!

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

Sounds good to me, Kris. I just have a feeling everything is going to be good and so I will say ENJOY your trip, you deserve it. Safe travels.

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

Kris.....Fingers crossed for the absolute best test results coming your way and off you go to see your family and get a break from it all.  Suppose that is what we call "normal".
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

Great news Kris, thanks for that! Keeping my fingers crossed for the scan and the results and so hoping that you can get your few weeks off to go see your family in Alabama.

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

Great news Kris! You deserve a break and a fabulous trip! Can't wait to see photos.
Love
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

Kris....if fingers crossed, prayers said, only good thoughts make a difference....you're on your way to Alabama.   You deserve the break...and "whatever normal is."

Iowa Girl

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Update on LY2801653 clinical trial

The break is a go! 15 days without these drugs! I'm hoping I lose 15 lbs!! lol
Realistically, I'll take 10 lbs. and the flight is booked for next week. One week from today and I'll be in Alabama hanging with my bros and their families!! I can't wait!

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

Yay!!! Brilliant news Kris! Enjoy your trip back home to see your family, have a great time!

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

Kris....so thrilled for you. Know that we miss you, but are happy that things have worked out.  Have fun and enjoy your time with your family.
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

Whoohoo Kris.....go get 'em!  Congratulations on the break and enjoy, enjoy, enjoy!!!!

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Update on LY2801653 clinical trial

Awesome news Kris! You deserve it....have an amazing time!

Re: Update on LY2801653 clinical trial

Great news Kris.  Enjoy your time off, your trip and your family.  You deserve this break.  smile

Hugs,
Darla

"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

Cycle 22 started on Tuesday... That's 19 months on this drug! And I have edema and a pimply reaction. All in all, not bad.
Stable is still the word of the month. And normal ranges for CA19-9 and bili. Still a bit off on the albumins and esonophils but I'm not too concerned.
Just wanted to post an update! Sorry I don't stop in often but with organizing the apt. and working (how do people work FULL TIME???) I just don't seem to have spare time anymore! I've even cut down on poker and karaoke!

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....that is great news! 19 months on one drug is amazing and STABLE is even better! Keep up the good work! I don't know how I used to work full time....there is not enough time in the day for everything!!
Melinda

Re: Update on LY2801653 clinical trial

Kris....fantastic news and just in time for the holidays and starting another new year.  I agree....since retiring and selling my cake decorating business a year ago, I can't imagine how I juggled everything either.  Keep on with the great news.  I'm so thrilled for you to hear that great news.   Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.