Re: Update on LY2801653 clinical trial

Hi Kris,

I've been out of touch for awhile due to liver problems.  My stent was clogged and caused me to become jaundiced.  They were actually able to put another metal stent inside the old one, and after they cleaned it out, my bilirubin started coming down the next day.  I came home from the hospital yesterday.  If all goes well, I'll start chemo again on 4/4. 

Anyway, I'm glad you seem to be continuing to do well on the trial.  Stay strong!!!  That's all we can do with this horrible disease.

Love, Peace & Hugs,
Mary

Re: Update on LY2801653 clinical trial

Mary, I'm so sorry! I emailed you last week. Wasn't sure how you're feeling. I know you said the iriticain(sp??) is kicking your butt. Let's hope it's working.

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

Dear Mary, sorry to hear about what you have been going through and I truly hope and pray you are doing much better and that things start progressing again. Wishing you the best on April 4th!

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 Kris and Lainy,

I'm very weak and barely eat.  I fear this is the end but I hope not.

Take care,
Mary

Re: Update on LY2801653 clinical trial

Mary, 

I'm so sorry to hear you are not doing well.  Let's hope it is just a bump in the CC road and things will start to improve for you soon.   Keep updating us when you can and let us know how things are going.   Thinking of you and hoping for the best.  Take care.

Love & 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

Dearest Mary, I so hope you are very wrong and please do not take this the wrong way as I mean it with more love than you can imagine, but if you are right about things I wish you comfort and when that day ever comes I hope you are greeted by my Teddy with the biggest smooch ever. You are one of the sweetest people I ever 'almost' met. You have touched a lot of people here in the best way. I will step up the prayers and good vibes and if I could be with you right now I would wave a magic wand and be right there. We all love 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: Update on LY2801653 clinical trial

Darla & Lainy,

Thank you so much for the kind words.  I'll fight this as long as I can.  I'm not a quitter!!!  I'm hoping to get some strength back.  I'm fortunate that the stents are working and my bilirubin is coming down.

Kris - I kept your phone number.  When I'm feeling stronger I'm going to call you and "steal" some of your strength and hope!!! 

Re: Update on LY2801653 clinical trial

Hi, Mcwgoat,

Please take good care of yourself, this is not a easy journey to travel but I will pray for you for a comfortable ride.

Thanks for always praying for me. I do not know how tough this journey will be until now.

God bless

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Update on LY2801653 clinical trial

Mary, sending lots of strength to you!
And Mary and Percy, I'm sending as many prayers as I can for each of you.

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

My husband was diagnose  with cc seven weeks ago, had surgury were they were not able to get all the cancer.  So, no radiation for him and he wont go on chemo again.  This is his third cancer.  He has the defective gene so dr at Tgen have asked for sample to see if he will wualify to see if there is a medication to stop the growth.  Is this the  genomic testing that Kris has been mentioning? Its all new to us.  Any one have any luck with this?

Re: Update on LY2801653 clinical trial

Jan.....correct. Providing drugs are available, molecular testing of tissue or blood may allow for a more personalized treatments. It replaces the one size fits all approach and moves science into the "personalized" treatments for each individual.  Some institutions perform this test automatically; others may not.
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

Mary and Percy,
You are both in my heart and on my mind... Sending love and comfort.
Willow

Willow

Re: Update on LY2801653 clinical trial

Jan,
Please repost your introduction under new topic, introductions. More people will be able to see it and give advice. Sorry to hear of your husbands situation. Like Marion said, the molecular testing gives information that can sometimes guide treatment though it's relatively new and many drugs are still in the experimental testing stages. Best to you.. Lots of support here.
Willow

Willow

Re: Update on LY2801653 clinical trial

Thank you everyone for your prayers, kind words and warm wishes.  They mean a lot to me.  I'm getting stronger every day and that is making me happy.  I have chemo - gemcitabine and irinotecan - this Friday and that scares the heck out of me.  My quality of life has changed but it is still worthwhile to try and continue to live.   The irinotecan is what gives me the extreme fatigue.  Doctor gave me Ritalin for that and I'm hoping it will help. 

I always keep everyone here in my prayers and will continue to do so, including our caregivers, who give up so much of their life to be with us.

Thank you moderators.  Without you we wouldn't get the info we need from this web site.   You work tirelessly for us and we all so appreciate it.

Stay well Percy and continue the good fight!

Love, Peace & Hugs,
Mary

Re: Update on LY2801653 clinical trial

So... 12 cycles down. It's been a year! Where DID the time go?
CA 19-9 is up to 40 again sad
But other blood work looks good. Unfortunately, we are doubling the Lasix because the left foot is SWOLLEN. sad
I saw Lynn and Carl today, although it was just in passing. I wanted to get to Dr. D and they were on their way back to cru. By the time I got to cru, they were gone.

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,

Congratulations on your one year success with this trial drug. I hope you find continued success and that you can keep the side effects under control.

It turns out we did not have to stay after taking the pill today. Blood work with the pill and then we could leave. Sorry we missed you.

We will continue on the trial for at least 2 more cycles - for Lynn, that means 6 weeks as each cycle for her part of the trial (part D) is only three weeks v. four weeks for the original part you are on. We are actually glad we will only have to wait 6 weeks for a new scan to assess whether the pill is working for Lynn. Since she had the allergic reaction to cisplatin, she is no longer doing chemo (the purpose of this part D). She is able to stay on the trial with just the pill, but it's at a lower dosage and the sponsor won't change the dose fort part D patients. So while the scan today showed 'stable' results, we have not gone a complete cycle with only using the pill. We have learned twice now that Lynn's cancer is very aggressive and grows rapidly without treatment. Dr Denlinger will not wait long to get Lynn off the trial if this lower dosage is proving ineffective.

In addition to the good news of a stable CT scan, the fact that Lynn will be off chemo for 6 weeks is quite nice. It will be the longest time period of no chemo since we began this journey a year ago.

Take care. We will see you soon.

Carl

Re: Update on LY2801653 clinical trial

Kris,  Congratulations on the year milestone.  I hope that the increase in Lasix will help the edema in your left leg.  You are one of my inspirations on this website.....and I'm so glad to have met you at least on line.  You've helped me in more ways than you could ever know. 

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.

Re: Update on LY2801653 clinical trial

Thank you Julie. Hearing that helps keep my spirits up.
Carl, I got to cru shortly after you left. I did hear Lynn is able to stay in the trial. I'm hoping the reduced dosage works for her (fingers crossed!), I will be waiting to hear what happens in 6 weeks! I guess it will be a couple of months before we cross paths again... 12 weeks, to be exact!

I did discuss the CD45 study and the new one in Thailand with Dr. Denlinger. She said the Thailand one sounds much like one at Fox Chase. So there ARE options out there! With more options monthly!!

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.

44 (edited by kris00j Wed, 21 May 2014 12:29:44)

Re: Update on LY2801653 clinical trial

Cycle 14 is complete! Still have adema, but it's ok. Met with Dr. Denlinger about results of genomic testing, and she has a couple of ideas in the works. I have some homework to do!
Meanwhile, on to cycle 15!
Will post genomic stuff in the other thread.

By the way, CA19-9 is 39.8. Still higher than normal, but low for most of this fight.

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, Congrats but honestly wish I could see you on your Harley Cycle instead of these cycles! Thinking of you all the time, miss my Cookie!

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

Great stuff Kris! Hope that cycle 15 goes well and looking forward to hearing about these idea's in the works!

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 happy to hear that the edema is controlled.  Congrats on completion of the 14th cycle. You are superwoman.
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

Yeah, Kris!

Willow

Re: Update on LY2801653 clinical trial

Kris,

So happy for you. I hope you have continued success with the trial.

Carl

Re: Update on LY2801653 clinical trial

Carl, how is Lynn doing?

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.