Stopping clinical trial

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lorrainem
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Re: Stopping clinical trial

Postby lorrainem » Sat Dec 27, 2014 12:05 pm

Wish you nothing but the best dear Belle, and right now it's best that you stop. As soon as you recover and regroup do something you can enjoy for you, then get back to work on the stupid cancer. Sending love and best wishes to you and your family. You continue to be an inspiration to us all.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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abuttigi
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Location: SE Michigan

Re: Stopping clinical trial

Postby abuttigi » Sat Dec 27, 2014 1:20 pm

Belle,

I agree with everything that's been said. You are an incredibly strong woman. Hoping for a miracle in this season as well, and that you feel well enough to enjoy this season with your family.

Best,

Angie
Daughter to George (64)
Dx'ed Jan '11 Stage IV CC liver and peritoneum, KRAS mutant
Folfox
Folfori, Avastin
SIRT
Aug '12- progression in liver, mets to lungs
Oct '12- mets to bone, Regorafenib
Nov '12- Hospice
12/10/12- Became my beautiful angel in heaven

Lee
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Joined: Sun Apr 16, 2006 4:09 pm

Re: Stopping clinical trial

Postby Lee » Sat Dec 27, 2014 1:40 pm

Belle,

So sorry the trial drug was to much. As others have said, you are a strong & brave person and probably took on more than most of us here could have endured. Thank you for all you have shared.

I hope you have a wonderful holiday season with family and friends. And that 2015 brings new promises for you.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

stevieb
Posts: 405
Joined: Sat Feb 09, 2013 12:26 am

Re: Stopping clinical trial

Postby stevieb » Sat Dec 27, 2014 3:12 pm

Thinking of you Belle and wishing you the best!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

Asterix
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Location: Brisbane, Australia

Re: Stopping clinical trial

Postby Asterix » Sat Dec 27, 2014 9:18 pm

Hope you feel better soon Belle, and thank you for participating in this trial, as your experience will contribute the the knowledge of this drug and how it works.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

tammylayne
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Joined: Fri Jul 16, 2010 9:24 am

Re: Stopping clinical trial

Postby tammylayne » Sun Dec 28, 2014 6:53 pm

Belle...hope you are feeling better and were able to enjoy the holidays with friends and family.

Always in awe of 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."

rp1954
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Re: Stopping clinical trial

Postby rp1954 » Mon Dec 29, 2014 3:26 pm

Belle, have they ever analyzed or named the pleural effusions you are having. I ran across this chylothorax paper, one type of pleural effusion, while reading. So often effusions and ascities seem to reflect a shortage of something that might be delivered nutritionally, if they can identify the problem specifically.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

NWgirl
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Location: Battle Ground, Washington

Re: Stopping clinical trial

Postby NWgirl » Mon Dec 29, 2014 3:38 pm

rp1954 wrote:Belle, have they ever analyzed or named the pleural effusions you are having. I ran across this chylothorax paper, one type of pleural effusion, while reading. So often effusions and ascities seem to reflect a shortage of something that might be delivered nutritionally, if they can identify the problem specifically.


I don't know. All I know is they tested it for cancer - negative. I think it's a side effect of the trial drug - part of that Cytokines Release Syndrome that DK mentioned previously. That said, could it be continuing because of some nutritional deficiency? I don't know. My oncologist has no experience personally with immunotherapy drugs but he knows the oncologist who runs the trial so they can talk. Hopefully they can come up with some answers. I just want it to stop. It's painful and resolving it is even more painful.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Stopping clinical trial

Postby Maia » Mon Dec 29, 2014 5:19 pm

NWgirl wrote: That said, could it be continuing because of some nutritional deficiency?


Belle, if you want to give it a try to what rp1954 is saying, that would mean that you should lower (or eliminate) all saturated and trans fats of your diet, during a time, and use only medium-chain triglyceride (MCT) fats. Which means: try and use coconut oil in all. Don't use whole milk, cream, ice cream, whole-milk cheeses, meats with fat (beef, poultry with skin, or lamb) (all that is saturated fat) or (worse) margarine and all the stuff with trans fats (all those manufactured cookies, crackers, donuts, french fries, etc.).
(If you want an explanation: it may seem silly and little, but it makes sense. The MCT fats (say, coconut oil) are absorbed directly into the portal venous blood; instead, saturated and trans fats are absorbed via the lymphatic system. If one 'gives a vacation' to the lymphatics, you're creating favorable conditions for healing of the effusion. It's the way that kind of pleural effusion (chylothorax) that rp1954 mentioned is treated in children (1974) and also the recommended diet for those adults who had a pulmonary resection and mediastinal lymph nodes taken off (2014)

I had to read a bit about fats because, sadly, my daughter has epilepsy and ketogenic diets (based on fats; one of them, MCT based) are one of the treatments for that condition. Also, I had pleurisy past month so I had to remember about MCT. I think it helped me to finally get better... :roll:

Nobody says it's a cure but, for a while, it can't hurt if you eliminate the saturated fats and use coconut oil, and it may help to heal... :)

NWgirl
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Re: Stopping clinical trial

Postby NWgirl » Mon Dec 29, 2014 6:51 pm

I'm not a big dairy fan, but give up my sweets!? Oh Maia, how could you suggest such a thing! :lol:

Although I eat very little now, I do feel better when I choose healthy options and less well if I eat junk.

I'll keep this in mind and try to stick with healthier choices.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Maia
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Re: Stopping clinical trial

Postby Maia » Mon Dec 29, 2014 8:24 pm

NWgirl wrote: but give up my sweets!? Oh Maia, how could you suggest such a thing! :lol:

Ahhh, no, no, you just enjoy your sweets! I didn't want to sound like a food nazi. It's only about saturated and trans fats, no even sweets. And I said, "for a while", to hopefully give you an upper hand in this crisis. And maybe someone can cook something yummy for you with sugar *and* coconut oil... Good ole homemade food, a little pampering for you.
And of course don't give up beer and wine! A girl needs some joy :wink:

NWgirl
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Re: Stopping clinical trial

Postby NWgirl » Mon Dec 29, 2014 8:50 pm

Yeah, that's another draw back of doing this trial. My body just doesn't want alcohol of any kind and nothing acidic - which means no coffee!!!!!

So I have little to no appetite, no alcohol, no coffee, back pain, shortness of breath, nausea - enough already!!!! I want to feel at least close to normal again.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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elise
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Location: Ontario (Canada)

Re: Stopping clinical trial

Postby elise » Mon Dec 29, 2014 8:53 pm

Belle, I'm so sorry. You are such a strong woman, I have no doubt you gave it your all. Rest and then make decisions.

(((HUGS)))

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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Maia
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Re: Stopping clinical trial

Postby Maia » Mon Dec 29, 2014 9:05 pm

Ah, that sucks, Belle. Elise is totally right -just rest and that's all. ((hugs))


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