Mother's State IV cancer - options at this point?

[HelpForMom]

My mother was diagnosed with stage 3b CRC over 5 years ago, when she was 66-67 years old. She had immediate surgery to remove a large mass from her abdominal region and then underwent chemotherapy (5FU + Oxaliplatin). Within between 1-2 years after that, a routine scan picked up another mass, so she had to have another operation, again, in the in the abdominal region, to remove it. However, this time, after surgery, it was found that the cancer had metastasized to the peritoneal region. It was determined that another surgery to remove it would not be advisable since the surgeon was concerned about (a) whether she would be able to handle another surgery due to how tough the other two surgeries were on her and how difficult it may be having surgery in the peritoneal region, and (b) because it had metastasized, the oncologist said that another surgery to remove the spread in the peritoneal region may not resolve the issue since it had already metastasized. At this point, she was said to have stage 4 CRC.

Fortunately, the oncologist said she was part of a small percentage of candidates for immunotherapy, as she was MSI-H. The options were Keytruda or Opdivo, or Opdivo + Yervoy. The oncologist asked if my mother prioritized quality of life or increased risk and potential lower quality of life if it meant more effective treatment, and my mother did find quality of life to be important to her, so she settled on Keytruda. The oncologist said Opdivo + Yervoy would be more toxic and have more side effects, and Opdivo was about the same effectiveness as Keytruda. The oncologist also said that with immunotherapy, there is no telling how a patient may respond and it could lead to serious side effects. I read up on Opdivo + Yervoy and it seems the combination tackles 2 different pathways and may be more effective, but also could come with more side effects. After settling on Keytruda, the initial treatments seemed to work, as her CEA dropped from like 60 to 30 or so. Gradually, her CEA started creeping up by 1-4 after nearly every blood test every 3 weeks. In the past few months, the CEA had gone down by 4, then up about 4, then down about 4. She has had zero side effects from Keytruda. This past weekend, my mother then had another scan and it showed some progression, after months of scans showing general stability and no real progression. She's not had any pain, loss of appetite, or loss or weight. She could feel a mass on the lower left side of her belly and noticed it getting smaller by feel of the hand as she received Keytruda infusions. After her recent scan this weekend, I asked if she could feel anything different and she said it felt like there were additional masses in the same area, but the original mass felt like it hasn't grown.

Tomorrow we have a video appointment with her oncologist to discuss other treatments, and her next 2 Keytruda appointments scheduled for tomorrow and 3 weeks later have been cancelled. I've asked her oncologist about HIPEC and she said it was a very drastic procedure and if my mother valued quality of life then she wouldn't recommend HIPEC. I've also asked about possibly trying Opdivo + Yervoy since it tackles 2 pathways, to see if that could make a difference over Keytruda. The oncologist said she wasn't aware of any research showing it would make a difference.

So, at this point, I'm wondering what treatment options we should look at as my mother's best option at this point:

1. Opdivo + Yervoy, to see if it yields better results than Keytruda.
2. HIPEC
3. Going back to chemotherapy but something other than 5FU + Oxaliplatin (since she experienced a recurrence after the 1st surgery and chemo that used those drugs after she was first diagnosed)
4. Ask about targeted cell therapies or any new developments that she could try.

Not looking for medical advice, just some feedback from as many as possible about what may be the best options to look into or pursue.

Thanks in advance.

[HelpForMom]

My mother had her video appointment with her oncologist this morning and was told that there is another treatment that she qualifies for because she is MSi-H BRAF Mutated. I think the oncologist also said "V600 mutation" but I have to make sure since it wasn't perfectly clear what she was saying. She had a couple of appointments and didn't want to rush ours, so she is going to call back later today to explain the treatment and other details. At that point, we can ask her to clarify on "V600 mutation".

Anyway, based on her initial assessment so far, she said a treatment consisting of Cetuximap and Encoratenib is something my mother appears to be a match for. One is supposed to be taken orally.

I will ask about other options, but wanted to update the thread in case anyone has some helpful input.

[HelpForMom]

We got an update from the oncologist who called back. She said the option of Cetuximab and Encorafenib combination that my mother qualifies for due to MSI-H BRAF mutation can have a major side effect of damaging the skin with rashes and acne like bumps and resulting scars. She said the skin can recover from some of that when off of the drugs.

The other option she said was to do Folfox again, which should have some effectiveness since the first time had been in 2014, or try adding Avastin.

She said a specialist to perform surgery to remove the cancer from the Peritoneal area is not likely to work because there is a good bit of cancer that could be there and removing some of it could lead to some not being spotted and removed. And lastly, she said HIPEC would be very much impact quality of life for my mother and the hospital may not even offer it in her case.

Overall, the oncologist seems to feel that going back on chemo and maybe also trying the addition of Avastin would be the best course for my mother since she had been thru it before and may know what to expect more so than the cetiximab and Encorafenib combo which recently was FDA approved.

Any input out there?

[stu]

Sorry to hear about your mum’s situation . From an oncologist point of view it sounds very thorough . However purely from our own experience my mum responded really well to chemo and her oncologist was very negative about surgery . However we decided to hear directly from a surgeon in the field . Partly to weight up each specialist opinion and partly to gain a full picture on what my mum was dealing with . It turned out the surgeon had a different opinion and a surgical option was in fact available . This changed her direction . May not be the case for your mum but either way it may sharpen the direction or plan for her .

I wish her every success.
Stu

[Lee]

We got an update from the oncologist who called back. She said the option of Cetuximab and Encorafenib combination that my mother qualifies for due to MSI-H BRAF mutation can have a major side effect of damaging the skin with rashes and acne like bumps and resulting scars. She said the skin can recover from some of that when off of the drugs.

The other option she said was to do Folfox again, which should have some effectiveness since the first time had been in 2014, or try adding Avastin.

Any input out there?

If I understand correctly, that rash that people get usually means that cocktail is working. I believe there is a cream that can be applied that help alleviate the rash issues. Hopefully others who have been down this route will chime in shortly.

And Stu is right, get surgery advice from a surgeon, not an oncologist; and oncologist advice from an oncologist, not a surgeon. And sometimes getting a 2nd opinion is a good idea.

Good luck,

Lee

[ginabeewell]

We got an update from the oncologist who called back. She said the option of Cetuximab and Encorafenib combination that my mother qualifies for due to MSI-H BRAF mutation can have a major side effect of damaging the skin with rashes and acne like bumps and resulting scars. She said the skin can recover from some of that when off of the drugs.

I did Vectibix which is a similar drug that creates a rash as Erbitux/cetuximab.

My onc mentioned the rash and said that if I got it, they would address it. It was far and away the worst side effect I dealt with, and I have spoken with others who feel likewise.

I did most of my first 19 rounds with it and FOLFOX; then 5 of my last 10 with it plus FOLFIRI.

The good news: it really worked for me! The first course got me to operable; and the second improved my response to FOLFIRI alone.

BUT I discovered a trick that I’ve been meaning to post about:

First if you do this you MUST insist they give you antibiotics and steroid cream and start the antibiotics two or more weeks before the chemo. It is best practice but almost no MD prescribes prophylactically.

The last 5 cycles, I’ve also been icing my face during chemo. I just use two hospital issued packs that you break apart to get cold and move them around for the hour of the Vectibix infusion.

So far, I have had no noticeable rash, except I can see it popping up in places I’m not icing. I use steroid cream maybe once or twice a week when it seems like activity might be starting and that has kept my face clear, mostly.

But it is a night and day difference. I’m anxious to see if icing works for others.

[HelpForMom]

We got an update from the oncologist who called back. She said the option of Cetuximab and Encorafenib combination that my mother qualifies for due to MSI-H BRAF mutation can have a major side effect of damaging the skin with rashes and acne like bumps and resulting scars. She said the skin can recover from some of that when off of the drugs.

The other option she said was to do Folfox again, which should have some effectiveness since the first time had been in 2014, or try adding Avastin.

Any input out there?

If I understand correctly, that rash that people get usually means that cocktail is working. I believe there is a cream that can be applied that help alleviate the rash issues. Hopefully others who have been down this route will chime in shortly.

And Stu is right, get surgery advice from a surgeon, not an oncologist; and oncologist advice from an oncologist, not a surgeon. And sometimes getting a 2nd opinion is a good idea.

Good luck,

Lee

Thank you, Lee. My mother has Kaiser and Medicare. We had difficulty getting a Sutter oncologist to give a 2nd opinion when she was first diagnosed 6 years ago. We were told paying out of pocket or having someone pay out of pocket for that opinion could jeopardize her eligibility for continued coverage. I was both surprised and dismayed by that. Apparently, you have to submit an appeal to Kaiser and get it approved in order to seek a 2nd opinion outside of Kaiser's own offerings. I fear the same will be the case for seeking out and getting an opinion from a surgeon specializing in the peritoneal area.

As for getting a rash usually meaning that the cocktail is working, that's good to know or look into further. She had no real reactions or side effects while on Keytruda. I didn't know if that was good or bad. It seemed to slow down the progression and she was on it for one year.

[HelpForMom]

We got an update from the oncologist who called back. She said the option of Cetuximab and Encorafenib combination that my mother qualifies for due to MSI-H BRAF mutation can have a major side effect of damaging the skin with rashes and acne like bumps and resulting scars. She said the skin can recover from some of that when off of the drugs.

I did Vectibix which is a similar drug that creates a rash as Erbitux/cetuximab.

My onc mentioned the rash and said that if I got it, they would address it. It was far and away the worst side effect I dealt with, and I have spoken with others who feel likewise.

I did most of my first 19 rounds with it and FOLFOX; then 5 of my last 10 with it plus FOLFIRI.

The good news: it really worked for me! The first course got me to operable; and the second improved my response to FOLFIRI alone.

BUT I discovered a trick that I’ve been meaning to post about:

First if you do this you MUST insist they give you antibiotics and steroid cream and start the antibiotics two or more weeks before the chemo. It is best practice but almost no MD prescribes prophylactically.

The last 5 cycles, I’ve also been icing my face during chemo. I just use two hospital issued packs that you break apart to get cold and move them around for the hour of the Vectibix infusion.

So far, I have had no noticeable rash, except I can see it popping up in places I’m not icing. I use steroid cream maybe once or twice a week when it seems like activity might be starting and that has kept my face clear, mostly.

But it is a night and day difference. I’m anxious to see if icing works for others.

ginabeewell, thank you kindly for your reply. Was there a particular reason for going with Vectibix over Eributux/cetuximab?

have you ever heard that if you are getting a rash, it may mean that the drug is working?

when you did your first 19 rounds with it and FOLFOX, then 5 of the last 10 with it and FOLFIRI, was that your first time getting chemo? Sounds like nearly 30 rounds total... did you get infusions ever 2 weeks? I think when my mother had FOLFOX 6 years ago, it was a total of 12 rounds, once every 2 weeks, so it lasted a total of 6 months.

Lastly, how did you learn/hear about the insistence on getting antibiotics and steroid cream and starting antibiotics 2+ weeks before chemo?

[HelpForMom]

We got an update from the oncologist who called back. She said the option of Cetuximab and Encorafenib combination that my mother qualifies for due to MSI-H BRAF mutation can have a major side effect of damaging the skin with rashes and acne like bumps and resulting scars. She said the skin can recover from some of that when off of the drugs.

I did Vectibix which is a similar drug that creates a rash as Erbitux/cetuximab.

My onc mentioned the rash and said that if I got it, they would address it. It was far and away the worst side effect I dealt with, and I have spoken with others who feel likewise.

I did most of my first 19 rounds with it and FOLFOX; then 5 of my last 10 with it plus FOLFIRI.

The good news: it really worked for me! The first course got me to operable; and the second improved my response to FOLFIRI alone.

BUT I discovered a trick that I’ve been meaning to post about:

First if you do this you MUST insist they give you antibiotics and steroid cream and start the antibiotics two or more weeks before the chemo. It is best practice but almost no MD prescribes prophylactically.

The last 5 cycles, I’ve also been icing my face during chemo. I just use two hospital issued packs that you break apart to get cold and move them around for the hour of the Vectibix infusion.

So far, I have had no noticeable rash, except I can see it popping up in places I’m not icing. I use steroid cream maybe once or twice a week when it seems like activity might be starting and that has kept my face clear, mostly.

But it is a night and day difference. I’m anxious to see if icing works for others.

Sorry, I forgot to ask, but did you actually get the Vectibix at the same time as you wre on the FOFOX and FOLFIRI? I'll have to ask her onc about that. She just mentioned one or the other (cetuximab and Encorafenib OR Folfox with Avastin).

[ginabeewell]

Sorry, I forgot to ask, but did you actually get the Vectibix at the same time as you wre on the FOFOX and FOLFIRI? I'll have to ask her onc about that. She just mentioned one or the other (cetuximab and Encorafenib OR Folfox with Avastin).

Yes I did them together for most of my chemo. I’m relatively young and in good shape so they decided to “throw the kitchen sink” at me with aggressive treatment hoping they could get me to resectable. It worked but it’s been a rough ride! Maybe at your mom’s age they wouldn’t give the same reco to do them together?

I’ve never heard of Encorafenib, for what it’s worth. Don’t know how that would compare to FOLFOX, might be a good idea to ask that?

[ginabeewell]

ginabeewell, thank you kindly for your reply. Was there a particular reason for going with Vectibix over Eributux/cetuximab?

have you ever heard that if you are getting a rash, it may mean that the drug is working?

when you did your first 19 rounds with it and FOLFOX, then 5 of the last 10 with it and FOLFIRI, was that your first time getting chemo? Sounds like nearly 30 rounds total... did you get infusions ever 2 weeks? I think when my mother had FOLFOX 6 years ago, it was a total of 12 rounds, once every 2 weeks, so it lasted a total of 6 months.

Lastly, how did you learn/hear about the insistence on getting antibiotics and steroid cream and starting antibiotics 2+ weeks before chemo?

Sorry I missed seeing your first wave of questions! Let’s see.

1) Clinically Vectibix and Erbitux work the same way and deliver same impact. I think only difference is that when I started, they did Vectibix infusions every two weeks and Erbitux weekly, so my onc prescribed the one that required fewer visits!

2) yes, however that is a bit of dated data. It is based on a study where it is used ALONE while most patients use it as part of a protocol. And 90% of people get the rash, so it’s not like it’s some rare confirmation! I think it’s like when people tell you it’s good luck if it rains on your wedding day - it may be, but it’s still a giant bummer as a consolation prize. And it did NOT work on the woman who had the worst rash I had ever seen but had a mutation that prevented it from working.

3) yes my FOLFOX + Vectibix started just two weeks after diagnosis. I was stage 4 from the start and the first four oncs I talked to were ready to give up before they started. A fifth wasn’t. So I hired her! I just did round 29 on Monday. I got infusions every two weeks with short breaks for surgery and a longer one after my last resection - so long that I didn’t have mop up chemo. But perhaps should have!

4) the rash is hell. No other way to say it. And I think I had between a level 2 and 3 response. (Only 4 levels and 4 is fatal!) So I spent hours and hours researching and Googling and eventually landed on a paper or two that tested antibiotics used prophylactically and cited it as a best practice. But tied to my answer to #2, I think most oncs feel a false sense of security when they see the rash. So they wait to see it, and THEN prescribe. But it is way harder to cure a rash than prevent one. The same steroid cream I’m using once a week I was using twice a day to no avail!

Separately it looks like the drug I wasn’t familiar with is just a blocker which allows Erbitux to work in spite of her BRAF mutation - which I don’t have, so makes sense I hadn’t heard of it!

[HelpForMom]

ginabeewell, thank you kindly for your reply. Was there a particular reason for going with Vectibix over Eributux/cetuximab?

have you ever heard that if you are getting a rash, it may mean that the drug is working?

when you did your first 19 rounds with it and FOLFOX, then 5 of the last 10 with it and FOLFIRI, was that your first time getting chemo? Sounds like nearly 30 rounds total... did you get infusions ever 2 weeks? I think when my mother had FOLFOX 6 years ago, it was a total of 12 rounds, once every 2 weeks, so it lasted a total of 6 months.

Lastly, how did you learn/hear about the insistence on getting antibiotics and steroid cream and starting antibiotics 2+ weeks before chemo?

Sorry I missed seeing your first wave of questions! Let’s see.

1) Clinically Vectibix and Erbitux work the same way and deliver same impact. I think only difference is that when I started, they did Vectibix infusions every two weeks and Erbitux weekly, so my onc prescribed the one that required fewer visits!

2) yes, however that is a bit of dated data. It is based on a study where it is used ALONE while most patients use it as part of a protocol. And 90% of people get the rash, so it’s not like it’s some rare confirmation! I think it’s like when people tell you it’s good luck if it rains on your wedding day - it may be, but it’s still a giant bummer as a consolation prize. And it did NOT work on the woman who had the worst rash I had ever seen but had a mutation that prevented it from working.

3) yes my FOLFOX + Vectibix started just two weeks after diagnosis. I was stage 4 from the start and the first four oncs I talked to were ready to give up before they started. A fifth wasn’t. So I hired her! I just did round 29 on Monday. I got infusions every two weeks with short breaks for surgery and a longer one after my last resection - so long that I didn’t have mop up chemo. But perhaps should have!

4) the rash is hell. No other way to say it. And I think I had between a level 2 and 3 response. (Only 4 levels and 4 is fatal!) So I spent hours and hours researching and Googling and eventually landed on a paper or two that tested antibiotics used prophylactically and cited it as a best practice. But tied to my answer to #2, I think most oncs feel a false sense of security when they see the rash. So they wait to see it, and THEN prescribe. But it is way harder to cure a rash than prevent one. The same steroid cream I’m using once a week I was using twice a day to no avail!

Separately it looks like the drug I wasn’t familiar with is just a blocker which allows Erbitux to work in spite of her BRAF mutation - which I don’t have, so makes sense I hadn’t heard of it!

Thanks a lot for your reply. I will check with her oncologist about #4!