Need advise from knowledgeable ones

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JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Need advise from knowledgeable ones

Postby JDinNC » Wed Aug 10, 2016 9:35 am

I have been on Yervoy for my melanoma. I've completed three treatments but due to the bad side effects. My doctor and I decided to stopped the treatment. One of the worst effect has been diarrhea where I'm now on day # 11. I've lost 20 lbs since the end of June. There's a long list of effects from the Yervoy. I always do my research regarding treatments but it wasn't until someone here posted immunotherapy trials I notice this. First on the list was a GI trial connected to melanoma and Yervoy.. My major concern is that this treatment destroy the digestive system which might be why there was a trial. I have not been able to eat for weeks due to the pain I experience when I swallow. The nurses were telling me I have thrust and had me use "magic" mouthwash which I would throw up. The P.A. Had me take fluconazole thinking I had a yeast infection. I've taken Imodium, bananas anything to try and stop the diarrhea but nothing has worked. I broke down and Google...diarrhea and learned that my liver is not producing a bile which is to slow down the processing of the food I eat. The moment I try to eat something in less then 5 minutes I have to head to the bathroom. It's like my digestive system is not processing the food and just runs straight through my body. I'm always hungry!!!! I asked my oncologist to check my thyroid, liver and kidney levels which he said were perfect. Having colon cancer and knowing my body is not processing the food Is scaring me.
I'm not sure if I should go to a GI specialist. Would love to hear if others have had anything similar to what's happening to me and what steps you took to solve the problems. I just don't want to have to live with another problem along with these cancers.

Thanks, Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Need advise from knowledgeable ones

Postby midlifemom » Wed Aug 10, 2016 12:09 pm

Have you tried prescription strength lomotil?
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Need advise from knowledgeable ones

Postby DarknessEmbraced » Wed Aug 10, 2016 12:31 pm

I hope that you and your doctors can find something that will stop the diarrhea!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Need advise from knowledgeable ones

Postby Lee » Wed Aug 10, 2016 1:02 pm

Don't have any medical advice, butt cheese can really bulks me up. I have to watch how much I eat or suffer. Maybe something to try if all else fails.

So sorry you are having this problem, hope it gets better soon.

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 - 16 years and counting!

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Need advise from knowledgeable ones

Postby Pita » Wed Aug 10, 2016 2:55 pm

Marshmellows, bananas and cheese work good for me. Hope your situation changes to the better...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Need advise from knowledgeable ones

Postby Bev G » Wed Aug 10, 2016 7:59 pm

If you have thrush they should probably be giving you flagyl (anti-fungal) in addition to the magic mouthwash. I think that would help you resolve it. I hope you feel better soon!
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now


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