Anyone out there with Thymoma/Thymic Carcinoma

Posted by allisonsnow @allisonsnow, Jan 5, 2017

Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.

@colleenyoung

@gailkattouf, I appreciate the update. Your dad must so appreciate your investigative research into his symptoms and advocating for his care. You may be interested in connecting with other members about MG here:
> Groups > Autoimmune Diseases > Myasthenia Gravis* https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Here's a discussion about Keytruda by lung cancer patients on Connect:
> Groups > Lung Cancer > Immunotherapy and chemo; Keytruda side effects https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/

However, when I searched on Connect for Keytruda and thymic cancer I found @mddelaney64's profile. While Michael hasn't posted any messages on Connect yet, I looked at his website https://thymiccarcinomacenter.com. I know how rare this condition is and he looks like he's gone through a lot of work to put together stories and information. It may be helpful for your investigations. I also hope @mddelaney64 will post his experiences here.

Gail, how did the meeting with the oncologist go last week?

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@colleenyoung

Thanks Colleen.

My dad developed pneumonitis/pneumonia and is currently hospitalized. He now requires oxygen.The CT of chest/abdomen/pelvis showed decrease in primary tumor size but new metastasis to adrenal, liver, pelvis, psoas and trochanter. What we thought was a degenerative shoulder is now actually looking like bone mets. His inguinal lymph node enlarged and was just confirmed as large squamos cells. We are going home on hospice.

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@colleenyoung

Hi @gailkattouf, I know this is tough. My dad also didn't want any information about his condition. He didn't want to know about possible side effects. He just wanted to deal with the ones he got. For him knowledge wasn't power. For me it is. At times I understood and at other times I didn't. It was hard to swallow when he didn't want to help himself. Anger was also something I had to deal with. Luckily he threw that anger only at me and not my mom. Thus we divided the roles of mom took care of dad and I took care of mom. Still it was hard to witness.

Gail, is the plan to keep going with the Keytruda treatment?

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No more Keytruda. He is home on hospice. I believe the pneumonitis has taken its’ toll and a sudden massive disease progression left us no alternatives. We were all shocked. Even at 85 he is not prepared to die and we had such good early results so we thought. We prayed we would make it to point where would be able to get Keytruda. I am not sure if the massive and sudden distal disease progression was hyperprogression from immunotherapy or just a nasty aggressive cancer.

My dad had things he was looking forward to. We were planning an each trip but he is too weak. My mom is devastated. My sister and I are loving and supporting them both as they need it.

I am hoping the spiritual counselor will help us reframe our perspectives and we can stop crying. We value life, celebrate health and have gratitude for all the 84 years of amazing living. It’s been a beautiful ride for my dad with plot twist he never could have imagined.

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@gailkattouf

No more Keytruda. He is home on hospice. I believe the pneumonitis has taken its’ toll and a sudden massive disease progression left us no alternatives. We were all shocked. Even at 85 he is not prepared to die and we had such good early results so we thought. We prayed we would make it to point where would be able to get Keytruda. I am not sure if the massive and sudden distal disease progression was hyperprogression from immunotherapy or just a nasty aggressive cancer.

My dad had things he was looking forward to. We were planning an each trip but he is too weak. My mom is devastated. My sister and I are loving and supporting them both as they need it.

I am hoping the spiritual counselor will help us reframe our perspectives and we can stop crying. We value life, celebrate health and have gratitude for all the 84 years of amazing living. It’s been a beautiful ride for my dad with plot twist he never could have imagined.

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Hi @gailkattouf, I've been thinking about you and your family. How are you?

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I was diagnosed with Thymic Cancer September 21, 2017…… Surgery on October 9, 2017

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@boola

I was diagnosed with Thymic Cancer September 21, 2017…… Surgery on October 9, 2017

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Welcome to Connect, @boola. Did you have any treatment after surgery in 2017? How are doing today?

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Any suggestions for thymoma doctors in the Raleigh/Durham/Chapel Hill North Carolina area?

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@sunny123

Any suggestions for thymoma doctors in the Raleigh/Durham/Chapel Hill North Carolina area?

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Hi @sunny123, the Duke Cancer Institute (DCI) is a National Cancer Institute-designated Comprehensive Cancer Center. Have you inquired about a thymoma specialist there? Might Mayo Clinic Jacksonville be a possibility for you?

Sunny, have you been diagnosed with Thymoma Cancer?

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