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MD Anderson appt...no clinical trials recommended

Posted: Wed Mar 06, 2013 11:46 pm
by KarMel
So, I am done with treatment.

He doesn't think any current phase one or two trials would benefit me, or if there is chance it might, I won't qualify due to liver damage from tumors and toxicity of chemo over last four years. I tod him I didn't want to do anything with low probability of help and high probability of inducing misery. He was very understanding and agreed.

I am visiting my sister in Austin till Sunday, then Monday gonna get signed up for Palliative care/hospice, after I get home.

I have pain and nerve problems in my left arm. It is not chemo induced neuropathy, it is either a spinal met or a ruptured disc in my neck probably C5 or 6. This bothers me more now than the ascites and liver pain do.

If it is a met, could get radiation to alleviate pain. If it is a disc, probably just going to treat with pain meds.


Thanks for all thoughts and prayers. Too old timers and newbies, if you haven't figured it out by now, I truly love this little club, even though I wish I didn't belong. The kindness, caring, support, and generosity of the members overwhelms me, and I can't thank you all enough for everything you shared these lasr four years.

Karin

Re: MD Anderson appt...no clinical trials recommended

Posted: Wed Mar 06, 2013 11:50 pm
by some
Karin,

We love you too and my heart breaks that you have to make this decision to go to palliative care/hospice. I want you to stick around a long time and I am sorry your body is letting you down when you are very much present.

I will pray for peace for you as I do for all of us stuck dealing with this dreaded "C". You have always been so warm and caring to others here including us and I wish you the best and a miracle if it is out there for you.

Thank you for being here and thank you for sharing your experiences with all of us, newbies and old timers.

Peace, love & light to you.

Serena

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 12:25 am
by weisssoccermom
Karin,
Right now, I don't know what to say. You have always been such an inspiration in fighting for every trial, etc. I remember last summer when you and I were both seemingly researching the Regorafenib trials at the same time and although Terry couldn't be a part of it, I am glad that you were able to.

I am glad that you will be able to visit with your sister for the next few days....enjoy the time with her. Let's hope that some you can find something to control the pain in your arm. I wish you comfort and peace as you move forward with palliative care/hospice. Please though, keep in touch with us....the board wouldn't be the same without you.

Hugs,
Jaynee

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 12:43 am
by Ashlee H.
I am so sorry to hear this latest news. Your outlook has always been so positive and it just isn't fair when medical science has no more to offer. May you be immersed in peace and calm as you endure the next part of your journey. It is a very sad night. Hugs.

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 7:19 am
by raym
Sorry about your latest news. Regarding the pain in your arm, you could see an ortho doc. My wife has had neck and back issues and a round of steroids has helped with getting things back on track. An x-ray and/or MRI would probably be needed to diagnose a ruptured disc. At least that may provide some fast comfort.

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 11:06 am
by Rob in PA
KarMel, so sorry to hear the news out of MD Anderson. Enjoy your visit with your sister, and safe travels home. I would take Ray's advice and try to find some way other than pain meds to relieve your arm pain. You don't need that undue pain and stress if it can be somewhat easily (hopefully) resolved. One steroid shot helped my dad with his back pain several months ago and hasn't needed another shot since.

My best,
Rob

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 11:22 am
by skypup
Karin,
I'm so sorry you have to stand at this crossroads. You are a model of both fight and grace for the rest of us to learn from. May you be pain free. Please post often!
Love,
Theresa

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 12:02 pm
by andy21
Hi karin,

Is following not an option? It may come soon.

http://www.12newsnow.com/story/21234562 ... s-progress

Xilonix has been used in trials on numerous types of advanced cancers. XBiotech recently got approval from the U.S. Food and Drug Administration for a new drug trial with Xilonix focusing specifically on colorectal cancer patients. It will begin in 2013.

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 12:19 pm
by SoConfused
I hope you enjoy your visit with your sister ... Austin is a beautiful city and the weather has been nice in Texas. I am very sorry MD Anderson didn't have more to offer ... and that the news was not what we had hoped for you.

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 1:02 pm
by juliej
Big love back atcha, Karin, from all of us!

I'm deeply touched by your amazing courage and strength. All we can do is say we care, and we do.

xo,
Julie

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 3:44 pm
by ams5796
Karin,

I wish you the very best going forward. You have been a special member of this board.


Ann

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 8:02 pm
by tammylayne
So sorry to hear this news. I hope you are able to get some quick relief for your pain.

Gentle hugs to you....

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 8:43 pm
by mymom
Thinking of you.

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 9:17 pm
by gep
Also thinking of you. I was so hoping that there would be something to get you stable.
Gloria

Re: MD Anderson appt...no clinical trials recommended

Posted: Thu Mar 07, 2013 10:12 pm
by mstults
Stay positive. You never know what the future holds.