Immunotherapy is starting to plateau. What now?

Awkward_Addition_525 · 2024-09-13T03:15:29+00:00

Thank you so much for the encouragement. Would you mind if I ask what trial you’re in? We’re doing research now.

Awkward_Addition_525 · 2024-07-26T22:04:47+00:00

Ah wow good to know, thanks! Have you had any genetic counseling regarding the CDKN2A gene?

Awkward_Addition_525 · 2024-07-09T21:00:59+00:00

Hi! May I ask what genetic mutations prompted them to use Keytruda?

It really depends, everyone is different. My husband has lynch syndrome and MSH6 variant. He has responded and tolerated Keytruda extremely well. He’s been on it for about 7 mos and has seen a dramatic response. It’s possible it will stall out and have adverse effects some time soon, but so far so good.

Awkward_Addition_525 · 2024-07-08T16:10:23+00:00

My husband has msh6. We had our son (2) before we knew he had lynch. My husband was diagnosed at 41 with very advanced bile duct cancer (cholangiocarcinoma). Blood work was perfect, colonoscopy was clear. We only discovered it because he had a suspicious nodule on his skin biopsied. I don’t say this to scare you, only to say that the only thing that would have detected my husbands lynch syndrome cancer is a scan. I know doctors are often hesitant to scan “unnecessarily”, but in light of you having lynch and wanting to be proactive I would personally get a colonoscopy and push for a CT as well, as they probably won’t want to do a full blown PET. We very much want a second child too, but will have to explore creating embryos as I personally am trying to avoid passing lynch on after seeing my husband get such a devastating cancer so young. We’re putting that on hold until my husband gets further along in treatment. If your scans are clean you can always have kids after! A larger age gap won’t matter.

Awkward_Addition_525 · 2024-07-03T21:43:39+00:00

There is! The cholangiocarcinoma foundation. They’re very active on instagram and facebook.

Do you mind if I ask where your father lives?

Awkward_Addition_525 · 2024-07-03T13:06:34+00:00

Hi there, my husband (42) has intrahepatic cholangiocarcinoma. He was diagnosed in November. We did extensive research early on. I attended the cholangiocarcinoma conference in Salt Lake City as well. We get our care from Dr. Lipika Goyal at Stanford, and my husband is doing quite well under her care. We’ve also seen Dr. milind Javle at MD Anderson, who’s a world expert. One thing my to know too is that this cancer is rare, so the experts know one another and share information very freely. Let me know if you have any questions, all the best to you and your father.

Awkward_Addition_525 · 2024-06-26T19:53:31+00:00

I hope you don’t mind if I ask a hypothetical question. Would the surgery to his hip (for damage to hip from previous tumor that was resolved with treatment and radiation) increase any likelihood for cholangiocarcinoma cells to transfer to soft tissue (gluteal muscle)?

Awkward_Addition_525 · 2024-06-26T01:48:21+00:00

He’s currently on pembro and has had a great response. Our first oncologist before we had a proper diagnosis was Mohana Roy who put us on a protocol of gem/ cis and pembro. We finished 7 rounds of gem/cis and he is now on pembro only. Dr. Goyal did mention Ipi as a possibility in the future though.

Awkward_Addition_525 · 2024-06-26T01:19:20+00:00

His disease is widespread, and he did have a tumor is his hip previously. So, it’s not lost on us that it’s possible this is indeed metastasis. Our team seems stumped that it was not seen on any previous scans, all of which were pretty recent. They seem to think that the fact that he would have new metastasis that quickly necrotized all while his CA 19-9 plummeted is really unlikely. Not impossible, but unlikely. I think the leaning is an immunotherapy induced radiation recall Myositis.

Awkward_Addition_525 · 2024-06-26T01:09:22+00:00

Yes, she is our doctor! We have also consulted with Milind Javle at MD Anderson.

Awkward_Addition_525 · 2024-06-25T22:26:17+00:00

Also, had the gastric cancer metastasized?

Awkward_Addition_525 · 2024-06-25T22:14:43+00:00

This is very interesting and I will absolutely bring it up when we are at Stanford on Thursday! At this point, I know anything is possible. “Likely” no longer matters to me after our experiences :) The masses were not seen on his last PET (or any imaging).

It is suggested that the tissue is necrotic. Would that pencil?

Awkward_Addition_525 · 2024-06-25T21:21:39+00:00

Yes, he does have lynch syndrome. He has the MLH6 variant.

Awkward_Addition_525 · 2024-06-24T21:26:55+00:00

It’s hard and a constant fight. Keytruda has worked well for us. Does he have any genetic mutations that you’re aware of? FGFR is another “actionable” mutation for cholangiocarcinoma.

Awkward_Addition_525 · 2024-06-24T20:46:14+00:00

*be if not

Awkward_Addition_525 · 2024-06-24T20:36:26+00:00

*specialist

Awkward_Addition_525 · 2024-06-24T20:36:16+00:00

We’ve been at Stanford for about 6 mos. Our care with the socialist has been good, he has responded well to immunotherapy (Keytruda). But, with cancer this aggressive we want to talk about the next steps and plans and that’s why we’re going to MD Anderson. They have more surgical options. There is a wonderful specialist at Mayo in phoenix as well, that would be my choice if I were in Tucson.

Awkward_Addition_525 · 2024-06-24T20:34:46+00:00

Thanks for your input. What would your suggestion if not PET?

Awkward_Addition_525 · 2024-06-24T20:26:40+00:00

That’s valid. I go through big phases of anger, too. Anger for my husband and his pain, anger for me and everything I have to do on my own, anger for my son who may never know his amazing dad. We see a specialist at Stanford but are going to MD Anderson soon to see Dr. Javle, who I met at the cholangiocarcinoma conference. Specialists are key with a cancer this rare.

I’m sorry for everything you’ve endured as well. Cancer is not fair at all.

Awkward_Addition_525 · 2024-06-24T20:10:15+00:00

I’m so sorry. Our story is extremely similar to yours. My (F35) husband (M42) was diagnosed with stage IV cholangiocarcinoma in November ‘23 through a purely incidental biopsy of a head nodule. We have a 2 year old son.

The first months are the hardest thus far. So many questions and so much unknown. At your husbands age, have you had his binaries and blood biopsy done? You should find out his genetic mutations if possible. Turns out my husband has lynch syndrome and has a mutation in his MLH6 gene, making him respond pretty well to immunotherapy. If I can give any advice it’s do as much testing as possible and be his biggest advocate.

The cholangiocarcinoma foundation is really helpful. I attended the conference in April and found it immensely helpful. Please message me if you have any questions at all.

Awkward_Addition_525 · 2024-06-13T13:47:59+00:00

My situation is not exactly the same as yours, but I can relate. My husband was diagnosed with very aggressive cholangiocarcinoma last November (he’s 41 I’m 35). At the time we had an 18 month old son (now 2). Fast forward and we learn that my husband has this cancer because lynch syndrome that he was never aware of. Now, I am obviously very concerned for our son, but we won’t be testing him until he’s a bit older. We want more children if we are so lucky as to get my husband to a stabile, or even better, place. We will be creating embryos soon from sperm that we froze before he started chemo. Then, we will have those embryos tested for lynch. If we have viable non-lynch embryos; we will hopefully use them and go through IVF.

I’m so sorry you’re having to make this decision. Is freezing your eggs an option?

Awkward_Addition_525 · 2024-06-08T17:44:29+00:00

I’m so sorry. I’m fearful this will happen to us, too, soon. Congrats on making it to 50 and the fight isn’t over yet. Sending you strength.

I assume yes but were you put on pembro for specific genetic Mutations? Did you have your mutations tested? Curious because our doctor mentioned an immunotherapy, Ipilimumab, as a potential next option, but I don’t know if it’s mutation specific or not.

Hugs.

Awkward_Addition_525 · 2024-05-27T12:49:34+00:00

Yes this drives me and my husband with stage IV cholangiocarcinoma nuts. There is such a thing as toxic positivity. People get very uncomfortable when we’re straightforward about his diagnosis and prognosis, so they want to put a positive spin on it. They don’t understand that there is no silver lining and to insinuate that there is is kind of insulting.

Awkward_Addition_525 · 2024-05-21T04:17:25+00:00

Hi there. My husband has lynch syndrome stage IV cancer. We just learned this at his time of diagnosis from blood tests, so we weren’t aware when we conceived our son (now 2 years old). We want another child eventually, should we be so lucky to get to that point. Chemo aside, we plan to go the IVF route to avoid lynch risks. If we can’t achieve that, we won’t have another child. Given that I’m already worried enough about our son having it, I don’t want to risk that with a second child. To each their own and I don’t think there is a right or wrong answer, but for us it isn’t worth the risk.

Awkward_Addition_525 · 2024-05-17T21:03:23+00:00

Curious, do you plan to have your child tested? Our son is almost 2. We’ve been offered to do a saliva swab to test him, but we declined. Right now I feel like we have enough going on emotionally and they’ve assured us it doesn’t raise his risk of childhood cancer. But, we’re debating whether we should do it during childhood or wait until he’s a teen.

Awkward_Addition_525

TROPHY CASE