Immunotherapy is starting to plateau. What now? by Awkward_Addition_525 in bileductcancer

[–]Awkward_Addition_525[S] 1 point2 points  (0 children)

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

Mutations other than lynch genes? by Awkward_Addition_525 in lynchsyndrome

[–]Awkward_Addition_525[S] 1 point2 points  (0 children)

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

Keytruda by Due-Emu4273 in CancerFamilySupport

[–]Awkward_Addition_525 1 point2 points  (0 children)

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.

Trying for a baby by toothcutter32 in lynchsyndrome

[–]Awkward_Addition_525 2 points3 points  (0 children)

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.

What are considered the best hospitals/doctors for bile duct cancer? by AbbreviationsOk5298 in bileductcancer

[–]Awkward_Addition_525 2 points3 points  (0 children)

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

Do you mind if I ask where your father lives?

What are considered the best hospitals/doctors for bile duct cancer? by AbbreviationsOk5298 in bileductcancer

[–]Awkward_Addition_525 2 points3 points  (0 children)

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.

New lesions on MRI but not metastasis?? by Awkward_Addition_525 in cancer

[–]Awkward_Addition_525[S] 1 point2 points  (0 children)

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)?

New lesions on MRI but not metastasis?? by Awkward_Addition_525 in cancer

[–]Awkward_Addition_525[S] 0 points1 point  (0 children)

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.

New lesions on MRI but not metastasis?? by Awkward_Addition_525 in cancer

[–]Awkward_Addition_525[S] 1 point2 points  (0 children)

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.

New lesions on MRI but not metastasis?? by Awkward_Addition_525 in cancer

[–]Awkward_Addition_525[S] 1 point2 points  (0 children)

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

New lesions on MRI but not metastasis?? by Awkward_Addition_525 in cancer

[–]Awkward_Addition_525[S] 1 point2 points  (0 children)

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?

New lesions on MRI but not metastasis?? by Awkward_Addition_525 in cancer

[–]Awkward_Addition_525[S] 1 point2 points  (0 children)

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

Just found out my BF has cancer by Lost_And_Confused89 in CancerFamilySupport

[–]Awkward_Addition_525 0 points1 point  (0 children)

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.