Keytruda induced pancolitis (help me please!)

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veckon
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Joined: Thu Jul 27, 2017 7:44 am

Keytruda induced pancolitis (help me please!)

Postby veckon » Wed Oct 18, 2017 7:50 am

Long story short, I developed ulcerative colitis in my whole colon as a side effect of pembrolizumab. They said this happens about 2% of the time so it’s rare but not unheard of. I started a high dosage of prednisone last week which helped curtail bleeding a lot. Bleeding is still improved, but I think I’m having a “flare up” because I can’t seem to go very long in between urgencies. I haven’t slept in many, many days, beyond passing out here and there. It is horrific. I have tried to adjust diet to low-fiber, low-fat, low-residue foods. Nothing is helping so far and I think my mental health is deteriorating due to lack of rest. Please help me... I need dietary advice mostly, but figuring out how to sleep again would be wonderful too. Thank you.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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

Re: Keytruda induced pancolitis (help me please!)

Postby Maia » Wed Oct 18, 2017 9:43 am

Veckon, I'm so sorry!! I know you are asking for dietary advice but if you are not sleeping because of this, I think that even the dietary part requires an urgent intervention from your MSK palliative team. Be a pain and ask them to give you exact directions about what to do. Maybe they need to add some other medication to the prednisone, and that is something that really only a medical team with experience in immunotherapies side effects can manage.
Or are you too far away from MSK? Still, phone them...

veckon
Posts: 104
Joined: Thu Jul 27, 2017 7:44 am

Re: Keytruda induced pancolitis (help me please!)

Postby veckon » Wed Oct 18, 2017 10:13 am

Maia wrote:Veckon, I'm so sorry!! I know you are asking for dietary advice but if you are not sleeping because of this, I think that even the dietary part requires an urgent intervention from your MSK palliative team. Be a pain and ask them to give you exact directions about what to do. Maybe they need to add some other medication to the prednisone, and that is something that really only a medical team with experience in immunotherapies side effects can manage.
Or are you too far away from MSK? Still, phone them...


I have been not only in phone contact but I’ve been in clinic a lot as they diagnosed this, it’s exhausting. The problem is they aren’t really experts on diets when this happens. I get mostly generic dieting advice like you’d find on a cursory Google search, even from the dieticians. I do think I may need more prednisone though, I think it may have tapered too fast.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Keytruda induced pancolitis (help me please!)

Postby Maia » Wed Oct 18, 2017 10:59 am

Ahhh, prednisone and its family are nasty stuff --even if needed, sometimes. That could be. What we know from ipilimumab --Yervoy, anti CTL4, other immunotherapy, around since years ago is that ''In clinical trials, rapid corticosteroid tapering resulted in recurrence or worsening symptoms of enterocolitis in some patients.'' And those for those who had a lower AE grade than you --not bleeding.

Re: diarrhea/ colitis from immuno:

There are several published algorithms for the management of diarrhea, as the one included in the Summary of Product Characteristics (SPC) of ipilimumab. Most guidelines include recommendations for management based on grading and severity and sequential algorithms. Since 2005, specific guidelines for diarrhea management have been implemented in all the clinical studies involving ipilimumab and soon it was realized that this intervention reduced the incidence of severe GI toxicities and perforations even when higher doses of ipilimumab were used (29,30). This detailed guidance algorithm can be found in the SPC of ipilimumab (20). In general, when a patient on ipilimumab therapy presents with diarrhea or blood in stools, initially we have to rule out non-immune related causes, such as microbial infections. In such cases specific treatment is administered and when the event is resolved ipilimumab can be continued. The grade of the event should be properly assessed. In grade 1 diarrhea it is recommended to treat symptomatically without steroids, administer loperamide 2 mg per os q 4–6 hours, anti-diarrheic diet and hydration and monitor closely until resolution.

In grade 2 diarrhea, that is increase to 4–6 bowel movements, or abdominal pain or blood in stools, if initial symptomatic treatment without steroids is not effective, stool white blood cell (WBC) should be send and stool calprotectin and endoscopy should be considered. Treatment with oral budesonide or other moderate dose steroid should be initiated. Steroid tapering should be gradual and definitely not shorter than 30 days, since premature stopping might lead to relapse. In grade 3 colitis (increase of ≥7 stools per day over baseline, incontinence, need for hospitalization for IV fluids for ≥24 h) then treatment with high dose steroids is required (methylprednisolone 1–2 mg/kg/day IV until improvement with a slow tapering for at least a month). If no response is seen in 1 week, then it is recommended to consider immunosuppressive therapy with anti-TNF inhibitors (5 mg/kg remicade, infliximab), which are approved for the treatment of colitis (29,30). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4971373/


Dietary, only can think of boiled white rice with butter and a lot of grated cheese --hard cheese--, white crackers, and grate a raw apple, allow some time for it to turn brown, only eat when it is brown.
In other circumstances, I would think of adding a med, loperamide, but you really really need to check with your team, because this is not 'just' diarrhea.
Wish I could be of any help, veckon... sending strong thoughts your way. It will take some more time, but it will get resolved!

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CRguy
Posts: 9286
Joined: Sun Feb 10, 2008 6:00 pm

Re: Keytruda induced pancolitis (help me please!)

Postby CRguy » Wed Oct 18, 2017 11:55 am

Maybe consider asking your Docs about Entocort (coated budesonide granules) which are more colon specific = less systemic than oral pred treatments, because it is activated directly in the lower small intestine / upper colon.

Two other meds which could be discussed are :
sulfasalazine and sucralfate for temporary use in managing the ulcerations.

Get your Docs thinking outside the box for you !

Best wishes
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

veckon
Posts: 104
Joined: Thu Jul 27, 2017 7:44 am

Re: Keytruda induced pancolitis (help me please!)

Postby veckon » Wed Oct 18, 2017 12:23 pm

Thank you Maia and crguy. Really, really appreciate any/all advice here.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Keytruda induced pancolitis (help me please!)

Postby Maia » Wed Oct 18, 2017 1:16 pm

Yes, listen to old uncle CRguy and old aunt Maia: get some fire under those doctors asses!!
I so hope you feel better soon.

Brearmstrong
Posts: 27
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Keytruda induced pancolitis (help me please!)

Postby Brearmstrong » Wed Oct 18, 2017 1:54 pm

Veckon,

My 19 year old son has ulcerative colitis and so the last two years we were working on foods that helped when he had a flare. If you google, "diets for Chron's or UC" you will get great information and recipes. Kefir is awesome because it's full of probiotics and also soothing to your intestines. It will also help you get much needed protein for healing. Good luck and this too shall pass.
45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations- just bad luck
FOLFOX April-sept 2017
Clean CT scan July 2017 watching one small lung nodule 4mm
October 2017 clean CT scan 4mm lung nodule stable, new 2 mm nodule watching

veckon
Posts: 104
Joined: Thu Jul 27, 2017 7:44 am

Re: Keytruda induced pancolitis (help me please!)

Postby veckon » Wed Oct 18, 2017 3:53 pm

Thank you! I have never heard of kefir before, I will look into it. Thank you again!
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

veckon
Posts: 104
Joined: Thu Jul 27, 2017 7:44 am

Re: Keytruda induced pancolitis (help me please!)

Postby veckon » Wed Oct 18, 2017 4:06 pm

Just so this thread isn’t all doom and gloom on my part, I will note that there is no longer evidence of peritoneal carcinomatosis; at all. Largest liver tumor left is about 1 cm. They noted two on last CT they could measure, down from 7 that were originally visible. So I really hope I can get through this colitis and get back on pembrolizumab despite this horrible side effect. It may take a month or two, but hopefully it won’t set me back too much long term.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Lovenothate
Posts: 26
Joined: Tue Aug 16, 2016 3:13 am
Facebook Username: Emily.guzman

Re: Keytruda induced pancolitis (help me please!)

Postby Lovenothate » Thu Oct 19, 2017 2:41 am

Veckon!

im so happy I read to the end! It absolutely made my day knowing there is no evidence of PC.

As for the colitis, i'm not 100% sure it would be the same but I've had three C.Diff infections since january that have led to my current IBD-D. I would recommend googling C.diff forums as they have forums with people who have Crohns, UC, etc. Everyone is different but they have great diet recommendations like the BRAT diet which has been the only thing to work for me.

I hope you find some relief and stay hydrated please!
daughter to DM dx Stage IV CRC @47 July 2016
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17

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Shana
Posts: 135
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Keytruda induced pancolitis (help me please!)

Postby Shana » Mon Oct 23, 2017 4:52 pm

veckon wrote:Just so this thread isn’t all doom and gloom on my part, I will note that there is no longer evidence of peritoneal carcinomatosis; at all. Largest liver tumor left is about 1 cm. They noted two on last CT they could measure, down from 7 that were originally visible. So I really hope I can get through this colitis and get back on pembrolizumab despite this horrible side effect. It may take a month or two, but hopefully it won’t set me back too much long term.


Awesome news on the tumor shrinkage! I'm glad that the Keytruda is working, damn the side effects! :(

I had chemo induced colitis from 5FU and ended up on TPN (IV nutrition) for 5 weeks to rest the bowels. It's an extreme solution but I was unable to keep any food down and suffered malnutrition so it helped tremendously. The previous suggestions on type of diet to follow for colitis are excellent, I do hope you feel better soon!

Hugs,

Shana
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage (surgery on 6/17 for blockage)
Removal and resection not on the table at this time as long as liver mets remain.
BB- aka colostomy is new high maintenance friend... she was a life saver
Living the new normal day by day :)

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Keytruda induced pancolitis (help me please!)

Postby MissMolly » Mon Oct 23, 2017 5:14 pm

Veckon:
There is a high potency probiotic that is considered the Holy Grail of intestinal healing for individuals with auto-immune based Chron’s and ulcerative colitis - it is called VSL#3 or Visbiome.

Visbiome or VSL#3 is not your standard probiotic. This probiotic is a medical grade probiotic (it required a physician prescription until a few months ago).

You will want the Visbiome 112.5 CFU/capsule.

People without Chron’s or ulcerative colitis can also use VSL#3. For people with severe intestinal inflammation also find enhanced benefit of this high potency probiotic.

I use VSL#3 on the advice of my Palliative Care provider given my compromised immune system, as a means of infusing my intestinal tract with a specific bacterial flora. It has been easy for me to assimilate without any secondary intestinal distress. I purchase it through Amazon and it arrives packaged with a cold pack.

Talk to your medical providers about Visbiome 112.5 CFU/capsule (aka VSL#3). You can also Google VSL#3 to learn about its specific healing properties for severe colitis.

Best wishes that you are feeling better,
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

benben
Posts: 222
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Keytruda induced pancolitis (help me please!)

Postby benben » Tue Oct 24, 2017 10:16 am

Hey Veckon, sorry to hear of the colitis, but very glad to hear about reduction of tumors. That's great news!

Yes boost probiotic consumption as much as possible. Yogurt, kefire, sauerkraut, kombucha (great drink), and daily probiotic pills, reduce fiber.
I've got some chemo induced colitis myself (seems to be just one small section of colon for now) and increasing probiotics is helping.
Make sure your WBC and ANC specifically are up for raw foods like most of the probiotic foods. I'd imagine they are fine with your form of therapy.

Listen to MissMolly, she's a fountain of knowledge...

Best wishes,
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
Granix given, Now Zarxio treatments every session.
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
Current - 12 treatments done, CBC good, CEA decreasing.
10/20/17 CT-SCAN - CLEAR


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