Update - Almost out of options?

Please feel free to read, share your thoughts, your stories and connect with others!
michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Update - Almost out of options?

Postby michellecairn » Thu May 25, 2017 7:21 pm

After my scan in February it was determined that Keytruda was no longer working for me. Going forward my onc wanted to put me on Erbitux, and then add Irinotecan after a few rounds of Erbitux.

At my last chemo appointment I had told my onc that I didn't feel like this chemo cocktail was working. Mainly because my abdomen just kept getting harder and harder after each infusion. When I was on Keytruda, my abdomen had gotten a lot softer and it was actually a bit "squishy." Now it is rock hard and my belly button is almost ready to turn itself inside out. I had also told her that I was planning on setting up a surgical consult. I called for the consult last Tuesday, and had the appointment this past Monday afternoon.

After 6 rounds of Erbitux and 4 rounds of Irinotecan, I had a scan this past Monday morning. The results were what I expected: there was disease progression.

My onc had contacted Mayo in regards of what to do next, and they basically said the next step to try would be Lonsurf or Stivarga. So, she is requesting insurance approval for Lonsurf, she feels the side effects are less severe and the efficacy is similar to Stivarga . They also said they had a phase 1 clinical trial that I may qualify for, but she seemed a bit hesitant to go that route because it's only phase 1, and I would have to travel to Mayo every 2 weeks which is about an 8 hour drive for me.

The appointment with the surgeon went a bit different. The surgeon I chose has a special interest in peritoneal disease, and he does do HIPEC. I did bring him a copy of my scan from Monday morning, and all my records were sent to him .

He basically said that I am not a candidate for HIPEC because there is too much going on in my abdomen, but he would like to do an exploratory laparoscopy to get a better look at what is actually going on in there, and there is the possibility that he can drain the ascites from my abdomen. Obviously he will be doing biopsies of the tumors he finds in there as well. I got the impression that he wants to re-run the different tests on the tumors. All of the testing that has been done up to this point has come from the tumor within my colon, but right now there is nothing left from my colon tumor to test anymore. They had to use pleural fluid to test for the BRAF mutation.

He did say that he has had other patients like me (Lynch positive, and MSI-H) who have also failed conventional treatment along with immunotherapy. He mentioned something about a using a chemo drug (one that isn't used for colon cancer) and a different immunotherapy drug that has worked on others like me. He mentioned that if I receive this cocktail and my tumors shrink or whatever that debulking may be possible in the future - basically if the conditions are ideal and I'm still alive.

He did say he was going to go to the tumor board with my case. As much as I want my abdomen drained just to relieve all this pressure - I became a bit apprehensive once he told me there is a possibility that the surgical incision may not heal and I could end up with a drain and a bag for it. He also mentioned that the fluid/mucus has quite an unpleasant smell.

I also showed him a photo on my phone of the photos that were taken of some of the tumors on the perinoteal lining and my ovary from when I was dx'd, and he mentioned to the resident that came in the room with him that poorly differentiated signet ring cell adenocarcinoma is usually fibrous and he really wasn't seeing evidence of that in the photo I showed him. Not sure if that is a good or bad thing.

I did relay all this information to my onc, and the surgeon had said he was going to follow up with her. I did ask her today to please get any and all information from him as she could, because I'm a bit fuzzy on what his intentions/and or goals are. I'm hoping that once my onc speaks with him I can get a clearer picture. My onc also wants me to make an appointment to see another onc where the surgeon is located to see if they have any other opinions or any clinical trials they are doing there that I may qualify for, so I will have to try to contact them tomorrow.

I tried to understand most of what the surgeon was saying, but going to the doctor with my husband is a bit challenging. It's almost like my husband acts like I'm a small child and he is the parent explaining my symptoms and events to the doctor. I love him dearly, and I know he's just trying to help and to understand everything himself, but he will talk over me and his recollection of events are not always in line with what has happened. It's like playing a game of telephone with 30 people, where what the first person stated is not what the 30th person heard. He also doesn't have the greatest understanding or knowledge of the importance of certain tests/procedures etc. if you get what I mean.

I know I'm not 100% out of options, but I feel like it's getting close to that, and I really wish that wasn't the case. And is it weird that I wasn't anywhere as devastated today when I heard the news that chemo failed as I was when I found out that the Keytruda failed? I could barely stop crying last time, and this time I have not shed any tears.

Best wishes to everyone!
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

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

Re: Update - Almost out of options?

Postby Maia » Thu May 25, 2017 8:45 pm

Michelle, I'm so sorry...
I was not aware that you anti PD-1 as monotherapy failed you in Febraury. Pembrolizumab, nivolumab, etc. *very often* works well for MSI-high but many times doesn't. So, a combination of immuno with something else is needed --something similar to what is investigated for MSS. Why was the rationale for going back to a chemotherapy combination, instead of adding chemo to the immunotherapy?
Our friend Stephen here is MSI-high, NED, but he had a combination of anti PDL1 AND a Avastin, for example. I know others for whom immuno only worked with the addition
of MEK inhibitor. And you always can try almost any of the immunotherapy trials for MSS CRC that admits MSI-high and allows prior immunotherapy --see link in my signature.
I think you are not out of options. Was something else, other condition, side effects, preventing you from just adding something to Ketruda, instead of leaving it completely?

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

Re: Update - Almost out of options?

Postby Maia » Thu May 25, 2017 8:59 pm

Just an example: in Chicago. IDO1 inhibitor + other anti PD-1 --nivolumab. Prior anti PD-1 allowed. https://clinicaltrials.gov/ct2/show/study/NCT02658890

jhocno197
Posts: 811
Joined: Mon May 11, 2015 9:33 pm

Re: Update - Almost out of options?

Postby jhocno197 » Thu May 25, 2017 9:04 pm

My husband did well on Stivarga for 8-9 months with minimal side effects, as long as he stayed at less than the manufacturer's recommended dose.

I know of several people who have had success with Lonsurf for a year+ with incredibly little in the way of side effects. If you start this drug, make sure they monitor your counts very closely. My husband's were starting to be checked weekly, but one day shy of his next check was when he ended up hospitalized for the final time. Prescribing info only recommends blood count checks on day 15 of the cycle; this may not be enough.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

User avatar
LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Update - Almost out of options?

Postby LeonW » Fri May 26, 2017 6:49 am

Hi Michelle
Sorry that it didn't work out again, this time. I sincerely hope your surgeon and consultation board will find something that *does* help, sometime soon.
I admire the way you're handling it all. Greetings and best wishes for all of you. Leon
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: Update - Almost out of options?

Postby michellecairn » Sat May 27, 2017 7:37 pm

Maia wrote:Why was the rationale for going back to a chemotherapy combination, instead of adding chemo to the immunotherapy?

Maia- I think there were a few factors that led my onc to not add chemo or Avastin to the Keytruda. Originally I was going to head to Cleveland for a clinical trial to get 10mg/kg of the Keytruda when we found out I could get the Keytruda locally under the compassionate use program. She didn't want to give it to me at first since they were only offering 2mg/kg. But she consulted with the 2 once I saw for 2nd opinions, and they said the dosing shouldn't matter, so then she gave it to me.

I wasn't aware you could do chemo with immunotherapy. I did have a few rounds of FOLFOX with Avastin, but I think she felt that once I progressed those drugs come off the table. I did tell her I was willing to go back on Keytruda - I'm still approved through March of next year to get it through compassionate use. I did absolutely great on it. I went back to work after 3 treatments of it and was able to work up to working 8-12 hours a day. I had a pretty physical job. I think I was able to lift 40-50 lbs, and when I started back I was only able to lift 10. Unfortunately I'm back to being quite weak again.

My onc called me yesterday after getting a hold of the surgeon, and he basically told her that his intention for the exploratory laparoscopy is to check the mucin/fluid in my belly to determine whether or not it's being caused by the cancer progressing or the cancer dying which may indicate the Keytruda had been working all along.

My CEA rose in October and February but that could've been the cancer dying....

I do have an appt on June 7th with a new onc that specializes in people who have failed traditional therapies - maybe he will have the Hail Mary I'm looking for.

jhocno197 wrote:My husband did well on Stivarga for 8-9 months with minimal side effects, as long as he stayed at less than the manufacturer's recommended dose.

I know of several people who have had success with Lonsurf for a year+ with incredibly little in the way of side effects. If you start this drug, make sure they monitor your counts very closely. My husband's were starting to be checked weekly, but one day shy of his next check was when he ended up hospitalized for the final time. Prescribing info only recommends blood count checks on day 15 of the cycle; this may not be enough.


Jhocno197, please accept my condolences on the passing of your husband. You are in my thoughts and prayers. If I do end up starting either one of the drugs I will make sure they check my counts regularly. I get to see them once the dr does, and if anything seems off I usually ask. Like this week the hospital was supposed to take labs when I had the ct, but they had no orders for it, and I wasn't scheduled for labs on the day I saw the dr. The hospital called the nurse and she told them I was to get labs when I saw the dr in case I was getting chemo. It was a bit of a headache.

However I am glad to know that there is the possibility of having one of those drugs keep me stable for at least 6 months.

LeonW wrote:Hi Michelle
Sorry that it didn't work out again, this time. I sincerely hope your surgeon and consultation board will find something that *does* help, sometime soon.
I admire the way you're handling it all. Greetings and best wishes for all of you. Leon


LeonW, thank you for your thoughts! I really appreciate it! I too hope someone can find something that helps soon! I'm not ready to give up yet - so there's always hope.

Best wishes to everyone!
Michelle
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

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

Re: Update - Almost out of options?

Postby Maia » Sun May 28, 2017 10:33 am

Michelle, it sounds like a good plan your doctors have there.
Just in case you didn't read that: Keytruda is part of the standard of care for you, since past week: BREAKING: Pembrolizumab/Keytruda APPROVED for MSI-High CRC Tue May 23, 2017 viewtopic.php?f=1&t=57995
http://www.onclive.com/web-exclusives/f ... nt-cancers

So, no more compassionate use or off label. That is part of the standard of care and your doctors can combine it with whatever other approved drug they think there is rationale to do it so. :)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Bing [Bot], Google [Bot], Yahoo [Bot] and 46 guests