MD Anderson clinical trials recommended

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MD Anderson clinical trials recommended

Postby KarMel » Wed Mar 06, 2013 11:46 pm

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.

Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Re: MD Anderson clinical trials recommended

Postby some » Wed Mar 06, 2013 11:50 pm


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.

DH (age 41) diag Stage IV mets to peritoneum - July 2012 (undetectable on CT PET or MRI)
Folfox 7 & Avastin started July 2012 CEA, CA 19-9 not indicators
HIPEC surgery 1/18/13
Folfiri/Erbitux - March 2013
Lots of prayers.

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Re: MD Anderson clinical trials recommended

Postby weisssoccermom » Thu Mar 07, 2013 12:25 am

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.

Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Ashlee H.
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Re: MD Anderson clinical trials recommended

Postby Ashlee H. » Thu Mar 07, 2013 12:43 am

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.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga

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Re: MD Anderson clinical trials recommended

Postby raym » Thu Mar 07, 2013 7:19 am

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.
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

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Rob in PA
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Re: MD Anderson clinical trials recommended

Postby Rob in PA » Thu Mar 07, 2013 11:06 am

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,
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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Re: MD Anderson clinical trials recommended

Postby skypup » Thu Mar 07, 2013 11:22 am

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!

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Re: MD Anderson clinical trials recommended

Postby andy21 » Thu Mar 07, 2013 12:02 pm

Hi karin,

Is following not an option? It may come soon. ... 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.
Caregiver: To 67 Yr father
diag. Stage IV, 5/12, liver mets
6 cycles Xelox/Avastin, Start 06/12
Stage 1 of Two Stage Resection Surgery in Dec, 12. 2nd line fails.
T Cell Trial May-Jul, 2013
Becomes a Heavenly Angel in August, 2013

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Re: MD Anderson clinical trials recommended

Postby SoConfused » Thu Mar 07, 2013 12:19 pm

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.
Stage IV CC

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Re: MD Anderson clinical trials recommended

Postby juliej » Thu Mar 07, 2013 1:02 pm

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.

Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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Re: MD Anderson clinical trials recommended

Postby ams5796 » Thu Mar 07, 2013 3:44 pm


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

Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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Joined: Fri Jul 16, 2010 9:24 am

Re: MD Anderson clinical trials recommended

Postby tammylayne » Thu Mar 07, 2013 8:02 pm

So sorry to hear this news. I hope you are able to get some quick relief for your pain.

Gentle hugs to you....
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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Location: Connecticut

Re: MD Anderson clinical trials recommended

Postby mymom » Thu Mar 07, 2013 8:43 pm

Thinking of you.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

Posts: 418
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Location: Chicago, IL

Re: MD Anderson clinical trials recommended

Postby gep » Thu Mar 07, 2013 9:17 pm

Also thinking of you. I was so hoping that there would be something to get you stable.
caregiver to Eli
dx 8/07 3B
7/09 - liver & celiac lym node
1/10 Liver Res & Lym nodes out
7/10 Back - Liver & other lym nodes
12/12 hit chemo wall
1/12 Clin Trial - MEK & AKT inhibitors
3/12 Trial failed/ spheres 4/12
7/30/13 Eli died.

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Re: MD Anderson clinical trials recommended

Postby mstults » Thu Mar 07, 2013 10:12 pm

Stay positive. You never know what the future holds.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

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