Four months in , scared, confused and overwhelmed about how to proceed

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SarahS
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Joined: Sat Mar 11, 2017 12:44 pm

Four months in , scared, confused and overwhelmed about how to proceed

Postby SarahS » Sat Mar 11, 2017 1:39 pm

Hello everyone, my name is Sarah and I am the wife to Brian who was diagnosed with stage 4 colon cancer at the end of November 2016
I started reading this board back when I was sitting at his bedside following the initial emergency surgery to remove a blockage in the cecum. This board has been a source of great comfort and a wealth of information.

I avidly follow everyone's journeys here, you all are so brave, compassionate and kind. I've tried to put as much information into my signature as I can, but to briefly summarize our situation.

My husband is 41 years old, he had no warning signs, and no health issues, he was in good shape, we were climbing mountains in Colorado in August.
In November he woke me in the middle of the night with intense pains in his right side, which was relived slightly after vomiting. We thought this might have been a gallbladder attack and went to the local ER.

After they ran a series of tests and imaging they informed us it was colon cancer that had spread to the liver, with possible lung involvement.
He underwent a colon resection the following day , recovered well and was allowed to go home 5 days later
The doctor in ER who made the initial diagnosis in addition to 3 gastrointestinal doctors who came to visit him , all told us he had a month to live, I have no idea what they felt the need to tell us that, the emotional toll on me at that time was unbearable, it was like living in some kind of nightmare, especially given that I had just lost my mother 2 moths prior to this to stage 4 breast cancer.
They were all wrong, he is still alive and (chemo side effects aside), doing well 3 and half months later
As you can imagine we did not stick with that hospital for subsequent treatment but went to a larger cancer hospital which is affiliated with MD Anderson
The surgery and pathology confirmed the primary as colon cancer with enlarged lymph nodes, mets to the liver, peritoneum and possibly lungs, although we have not had the lung things confirmed by biopsy or other method.They are very small

After 5 weeks of healing he had a port placed and began chemotherapy on Jan 5th 2017.
He has just this week completed his 5th treatment , which he is tolerating reasonably well, the first treatment was the worst, severe nausea and vomiting, the nausea has improved with treatment although the fatigue doesn't get much better , he has developed hand foot syndrome and has to self administer Neupogen shots for 6 days every fortnight. No neuropathy to date and no sensitivity to handling cold things. He did have a scary incident when riding his bike on the day of treatment , it was very cold outside and the cold air caused his throat to close up and breathing to become very difficult. Fortunately his cycling buddy happens to be a paramedic and handled the situation calmly. In about 15 mins of being back in the warm and sipping some hot tea the situation resolved itself. Lesson learned, no cycling in the cold on the day of treatment

Side effects aside, he is still in good shape considering and rides his bike when he feels able to, eats well after the first few days following treatment, has managed to maintain his weight and is experiencing no pain and symptoms from the mets. His CEA dropped in half after 2 chemotherapy treatments, this was also around the time when his white blood cell count took a hit and also I notice from his blood work his LDH levels spiked and doubled, they have subsequently dropped back to normal, but all this activity after 2 chemo treatments seems to suggest something was happening. His CEA continues to decline.

He has only had the one CT scan since beginning treatment and that showed a small amount of shrinkage and no new growth.
From that I think we can say he is responding failry well to the chemo, but my fear is that this will not continue in long term , and almost certainly will not lead to a long term remission

We have read about HAI for the liver involvement but I very much doubt that would be a possibility given the other sites of metastases, and of course surgery is not an option now and who knows if ever in the future.

I also feel as if we are playing a virtual chess game, with trying to work out what our next best move is. I am very interested and excited about immunotherapy and see that there is currently a trial recruiting in Atlanta where we live, specifically they are recruiting people who are MSS. If I correct I think this is for Opdivo in conjunction with another drug that can potentially help facilitate it's use on MSS tumors, but I might have that confused?

I am so confused as to what to do, do we stick with the chemo which is working for him, although I fear the long term damage ,and of course that the cancer will eventually stop responding, do we abandon it to give this trial a go with no guarantee that it will have any effect, and yet knowing the chemo is not a long term solution and the extent of his mets I feel as if immunotherapy may be our best option
I'm not so much asking for anyone to 'tell us what to do, but just looking for opinions, it is all so overwhelming sometimes.
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby Lee » Sat Mar 11, 2017 2:26 pm

SarahS wrote:I also feel as if we are playing a virtual chess game, with trying to work out what our next best move is. I am very interested and excited about immunotherapy and see that there is currently a trial recruiting in Atlanta where we live, specifically they are recruiting people who are MSS. If I correct I think this is for Opdivo in conjunction with another drug that can potentially help facilitate it's use on MSS tumors, but I might have that confused?


Hi Sarah and welcome. So very sorry for the reason you are here. 41 is too young to be dealing with this cancer.

Know that there has been a lot of advancements in the last few years and Immunotherapy is gaining a lot of ground in defeating cancer. I am a 13 year survivor and when I was diagnosed, FOLFOX was still experimental. That drug helped changed the landscape on defeating cancer. I believe immunotherapy will go even farther in beating this beast. There is one member on this board who was only given months to live and is now NED (No Evidence Detected) today, thanks to immunotherapy. So never give up the hope.

Has your husband had a PET scan yet? If not, it might be a good idea, it might help in with those lung thingy. I'm glad your husband decided NOT to stay with that hospital. Those Dr.(s) were wrong to give your husband and expiration date. So very glad they were wrong :twisted:

(((Sarah & Brian)))

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!

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peanut_8
Posts: 2163
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby peanut_8 » Sat Mar 11, 2017 3:03 pm

Hi Sarah,
So sorry to hear about your husband's diagnosis. He is very lucky to have such a good advocate as you looking out for his best interests.

I think you're on the right track looking into immunotherapy trials. It's good that the chemo combo is working for him now, but as you noted, it's not a cure.

Don't know if you've checked out this thread viewtopic.php?f=1&t=53238. It has some great info on trials, and several MSS options. Sorry I don't know much about the one in Atlanta that you're interested in.

We are fortunate to have a few members who know much more about trials than I do. They have contributed to the above mentioned thread, and may pop up here to help.

Best Wishes,
peanut

I see that our own dear Maia has posted a thread that you may find interesting, Sarah. viewtopic.php?f=1&t=57470
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby SarahS » Sat Mar 11, 2017 3:19 pm

Thank you so much Lee and peanut_8

Our oncologist seems to have a rather dismissive attitude towards immunotherapy. Whenever we bring up the subject of Dr Rosenberg he tells us his success has been very limited? and that people have died while trialing immunotherapy. I often feel like responding that I am sure plenty of people have died on chemotherapy but I just keep quiet.
It doesn't seem to be something that our oncologist wants to discuss either in terms of the work of Dr Rosenberg or any of the other immunotherapy treatment s currently available or in trial, I don't know if that is because of my husbands MSS status or just that he wants to keep dispensing the chemo.

So I feel we may have to go rogue if we want to explore other options, but I don't know if we are being too previous and/or perhaps foolish when his current chemo does seem to be working. Of course it's the peri mets that are giving me the most concern and making me wonder if chemo is even worth bothering with at all?
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

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peanut_8
Posts: 2163
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby peanut_8 » Sat Mar 11, 2017 5:47 pm

Sarah,
It's possible that your oncologist is right about limited success with immunotherapy. Especially with the MSS patient. However, that is changing, and pretty quickly too.

I'm certainly not an expert, butt would have to share you opinion on chemo regarding peri mets. It just doesn't seem to be very effective.

It would be ideal if you could get a second opinion with an onc who isn't so dismissive of immunotherapy. Maybe at a major cancer center? Hopefully fellow Colon Clubbers will chime in here, and give you suggestions.

I'm going to post this link again. If anyone knows what's current with colon cancer it's DK37. viewtopic.php?f=1&t=57470

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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ANDRETEXAS
Posts: 560
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby ANDRETEXAS » Sat Mar 11, 2017 7:08 pm

I can only say what I'd do....if there was a treatment, a trial or any other solution to get me well, I would investigate it. Your husband's oncologist should not mind you and your husband getting a second, third, fourth.....opinion until you are satisifed with all the answers and all the possibilities. I would not want to think back and wonder of there was something I should have done to increase my chances for recovery. Tell your husband to keep exercising and stay positive. Wishing you and your husband the best. One day at a time....Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT

ONE DAY AT A TIME !

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peanut_8
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Location: Capital of Texas

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby peanut_8 » Sat Mar 11, 2017 7:34 pm

More info

Sarah, I've been think, and maybe you'd like to read about one of our resident celebrities, Sleen. She entered a trial at the NIH, and is now NED.

The short version

http://www.today.com/health/experimenta ... er-t107772

The long version

viewtopic.php?f=1&t=49736&hilit=sleen+nih+trial

In my limited knowledge, the trial is still recruiting, and you need a tumor large enough to harvest cells to develop the therapy. Iit requires traveling and a lengthy hospital stay. Butt the results are amazing.

peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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mypinkheaven
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Facebook Username: Sally Cunningham
Contact:

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mypinkheaven » Sat Mar 11, 2017 8:23 pm

The one thing I would like to mention about the NIH TIL trial is that Sleen is the only successful patient - so far, of course. I don't know that I would give up chemo after such a short time to try an unproven trial. Although looking for one now is a good idea. I would certainly go for a 2nd opinion.

Here's a link to a MSS trial finder that was put together by Tom Marsilje. Put your state into the search. The majority are immunotherapy.

Good luck,
Sally 8)
MSS, KRAS Wild
9/2012 Colon Cancer IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Metastasis to uterus. Hysterectomy
2/16 Pelvic radiation - 25, brachytherapy - 3.
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules less than 5 mm.
8/16 CT Nodules still present. Most stable. Some growth
10/16 CT Same ^. Onc recommends no tx :evil:
11/16 Transfer to UCSD Moores Cancer Center
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus

SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby SarahS » Sat Mar 11, 2017 10:25 pm

Thanks again peanut. I have been following Sleen's story, quite incredible . I think there are other people who are in that same trial right now yes?

Sally thank you also , yes I do think we might be jumping the gun a little especially as the current chemo is bringing CEA level down and showing some shrinkage but it's good to be prepared for the future. I feel like the initial diagnosis blind sided us so much that I'm not prepared to just sit back and let things run away.

Thank you everyone who has taken the time to respond, I appreciate each and everyone of you :)
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

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juliej
Posts: 2739
Joined: Thu Aug 05, 2010 12:59 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby juliej » Mon Mar 13, 2017 6:22 pm

SarahS wrote:We have read about HAI for the liver involvement but I very much doubt that would be a possibility given the other sites of metastases, and of course surgery is not an option now and who knows if ever in the future.

Sarah, I would not rule out HAI. I was diagnosed with mets to my liver (all lobes) and lungs (one met in the bottom of each lung). After 14 months of chemo and considerable shrinkage of the mets, my local cancer center still said there was zero chance I could have surgery - just chemo for life or until it quit working. I had a consultation at MSK with Dr. Kemeny and everything changed after that. :D A few weeks after the consultation, I had my liver resected and an HAI pump implanted. Three months later I had dual lung surgery, followed by 6 months of adjuvant chemo. My liver has been clear for 5 years now! :D

I was healthy, physically active, no warning signs, and no family history of colon cancer so I know how devastated and confused you feel right now. It sounds like your husband is doing very well so it might be time to get a second opinion. Too many Stage 4s get written off when a hefty percentage of them can be brought to NED status by a doc who thinks outside the box. Thank goodness I went to MSK for a second opinion.

Let me know if you have any questions or if I can help in any way!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 10/2/2017, CEA<1

mhf1986
Posts: 64
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby mhf1986 » Mon Mar 13, 2017 7:42 pm

Hi Sarah, we are almost in the exact same place you are. I"m researching, crying, praying, repeat each day while trying to work a little too. Sooooo overwhelming. Do we try for another oncologist as ours seems a little "yep, you got 2 years but have some chemo"? Go to NYC? Talk to a surgeon?

Sending you hugs.
Melissa
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastin 12/16
4/17: CEA 11, blood pressure medicine added
6/17: CEA 15, OX discontinued due to neuropathy, Vit D added
11/17: CEA 38, back on OX due to liver tumors' growth, switched to Xeloda too

SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby SarahS » Mon Mar 13, 2017 9:37 pm

Julie, thank you, I was hoping you might chime in , you are kind of a hero of mine :) along with many others on this board.
Do you think that it might be worth contacting MSK even with the peritoneal involvement ( which I think is not that extensice given that the colorectal surgeon took out almost everything including the kitchen sink whilst performing his resection) ?

Melissa our situations are very similar even down yo the CEA numbers , and yes lots of researching and crying whilst trying to hold down a job.
I'm ready to do something
See you in NY :)

Hugs to you too

Sarah
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

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

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby Maia » Mon Mar 13, 2017 10:13 pm

Hi SarahS. So sorry your husband and you have to face this... what else one could say.

You might want to check these trials ongoing in Georgia (even those that say "Not recruiting": sometimes the centres are recruiting, for those who go for a second opinion, for example, but it's not showing up in clinicaltrials. gov). They are all immunotherapy-based:

Pembrolizumab + Poly-ICLC in MRP Colon Cancer (It's in Augusta. It's a trial *specific* for MSS CRC. https://clinicaltrials.gov/ct2/show/NCT02834052

MRP (mismatch repair proeficient) = MSS (microsatellite stable)
Contact: John Janik, MD 706-723-0000 jjanik@augusta.edu or Carrie McAteer, BA, CCRC 706-721-1409 mmcateer@augusta.edu

*************
An Investigational Immuno-therapy Study of BMS-986205 Given in Combination With Nivolumab in Cancers That Are Advanced or Have Spread. (At Emory. Recruiting. IDO1 inhibitor + PD1)
https://clinicaltrials.gov/ct2/show/study/NCT02658890

****
These are more far but focused on peritoneum:

αDC1 Vaccine + Chemokine Modulatory Regimen (CKM) as Adjuvant Treatment of Peritoneal Surface Malignancies
https://clinicaltrials.gov/ct2/show/NCT02151448 (It's only when surgery is possible to reduce tumour burden in the peritoneum but checking with the main researcher there might be worth; might be that he has other idea of resectability than other surgeons)

This one is not yet recruiting but one to keep an eye on it. Maybe your husband can be in a waiting list, for when/if the chemo is not the best option anymore:
A Phase 1/2 Study to Investigate the Safety, Biologic and Anti-tumor Activity of ONCOS-102 in Combination With Durvalumab in Subjects With Advanced Peritoneal Malignancies
https://clinicaltrials.gov/ct2/show/NCT02963831

You can find more immunotherapy trials for MSS CRC in this app https://www.appsheet.com/start/80e729e7 ... c32d26c9f4

or download all them in PDF, here: https://drive.google.com/open?id=0Bwc5k ... 0JHV0Y5cjQ

It's 38 pages of immunotherapy trials that accept MSS colorectal patients. It's the spreadsheet curated by our fellow Tom Marsilje/ DK37; I help him a bit with that.
Hope it helps!

SarahS
Posts: 44
Joined: Sat Mar 11, 2017 12:44 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby SarahS » Mon Mar 13, 2017 10:26 pm

Thank you so much for that Maia, plenty to look through :)
Wife and caregiver to husband diagnosed with stage 4 colon cancer Nov 2016
Emergency surgery to remove blockage in cecum 12/03/2016
Stage 4 colon cancer. Mets to liver, peritoneum, possibly lungs
K-Ras mutant MSS
01/05/2017 Begin Folfox 6 plus Avastin
CEA pre surgery 114, post surgery 70, 02/2017- 35 03/2017- 23 04/2017- 12

Maddielolo
Posts: 138
Joined: Tue Apr 08, 2014 4:57 pm

Re: Four months in , scared, confused and overwhelmed about how to proceed

Postby Maddielolo » Mon Mar 13, 2017 11:34 pm

Hi Sarah. I agree w Julia re: HAI. I would contact Kemenys office, and see what they say. They may want to see the next CT scan to see burden outside (and in) liver. Otherwise, Maia has provided some good links. This is a good time to be looking while he's doing chemo, especially if you're seeing results.


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