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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.

Interested in more discussions like this? Go to the Cancer Support Group.

joedeal | @joedeal | Nov 1, 2022
In reply to @colleenyoung "Hi @joedeal, according to Allison's profile, she has not been on the forum since 2020. I..." + (show)
@colleenyoung

Hi @joedeal, according to Allison's profile, she has not been on the forum since 2020.
I invite you to join this discussion where @anotherfinemass @shilo14 @gailkattouf @ggaines118 and others are talking about thymic carcinoma:
– Thymic Tumors https://connect.mayoclinic.org/discussion/thymic-tumors/

How are you doing on chemo? Side effects?

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Hi Colleen. I last week I finished a 12 week treatment (once a week) and am waiting to do a Pet scan 2 weeks from now to evaluate. I have had Surprisingly few side effects, mostly unable to sleep on treatment nights due to steroids. Hair is falling out, I've had some digestive problems, and taste is very strange. Otherwise I feel good and I maintain a positive attitude. Truthfully, I'm convinced that God already has planned for this and one way or another I WILL Be healed. Thanks for your concern.

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missbev | @missbev | Mar 27, 2023

My husband has recurring Thymoma. He was diagnosed in 2005 with thymoma. Surgery then checked for 6 or so years, everything seemed good. Then in 2015 it came back. He has been doing chemo off and on for 7 years now. He is starting to get some other symptoms like, eye-site problems blurt, spots in eyes, changes in vision. Starting to have issues swallowing, not bad but has a couple times of not being able to swallow just for a few seconds.
He just got finished with a chemo pill 21 days on and 7 days off cycle for 4 months. It was rough on him not at first but about half way thru it just got worse and worse. He will be checked with a scan at Indiana universities Simon canter. Dr Patrick Loehrer on the 19th of April. 🙏praying it reduced it again, so he can have another break.

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2 replies
donsunlover | @donsunlover | Mar 28, 2023
In reply to @missbev "My husband has recurring Thymoma. He was diagnosed in 2005 with thymoma. Surgery then checked for..." + (show)
@missbev

My husband has recurring Thymoma. He was diagnosed in 2005 with thymoma. Surgery then checked for 6 or so years, everything seemed good. Then in 2015 it came back. He has been doing chemo off and on for 7 years now. He is starting to get some other symptoms like, eye-site problems blurt, spots in eyes, changes in vision. Starting to have issues swallowing, not bad but has a couple times of not being able to swallow just for a few seconds.
He just got finished with a chemo pill 21 days on and 7 days off cycle for 4 months. It was rough on him not at first but about half way thru it just got worse and worse. He will be checked with a scan at Indiana universities Simon canter. Dr Patrick Loehrer on the 19th of April. 🙏praying it reduced it again, so he can have another break.

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Medicak language fols might be interested in this article:.
https://pubmed.ncbi.nlm.nih.gov/16046709/

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vickilk | @vickilk | Aug 20, 2023

Hello,
I've found a lot of comfort and learned a great deal from the stories here. I was wondering if you could suggest any oncologists in Southern California who know about thymoma. I'm 59 years old and I recently had two surgeries to deal with a thymoma. The first surgery was on June 15, 2023, because they thought it was a teratoma. But after more tests at the Mayo Clinic, they found out it's a specific kind called thymoma type B (60%) with Type B3 parts. Then, on July 24, I had another surgery where they removed the thymoma completely. This surgery took out the left phrenic nerve, a part of my lung, and the pericardium.

Since the tumor was taken out in two different surgeries, I'm told there might be a bit more risk, like the possibility of spreading. I haven't seen an oncologist yet. Because thymoma is rare, I'm asking if anyone knows of good doctors in Southern California who have experience with it. Your help means a lot to me.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 3, 2023
In reply to @vickilk "Hello, I've found a lot of comfort and learned a great deal from the stories here...." + (show)
@vickilk

Hello,
I've found a lot of comfort and learned a great deal from the stories here. I was wondering if you could suggest any oncologists in Southern California who know about thymoma. I'm 59 years old and I recently had two surgeries to deal with a thymoma. The first surgery was on June 15, 2023, because they thought it was a teratoma. But after more tests at the Mayo Clinic, they found out it's a specific kind called thymoma type B (60%) with Type B3 parts. Then, on July 24, I had another surgery where they removed the thymoma completely. This surgery took out the left phrenic nerve, a part of my lung, and the pericardium.

Since the tumor was taken out in two different surgeries, I'm told there might be a bit more risk, like the possibility of spreading. I haven't seen an oncologist yet. Because thymoma is rare, I'm asking if anyone knows of good doctors in Southern California who have experience with it. Your help means a lot to me.

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Hi @vickilk, I don't have a specialist recommendation in Southern Calaifornia, but I wonder if you've considered working with your Mayo Clinic cancer team in collaboration with a local cancer specialist?

I'm tagging fellow thymoma cancer members like @missbev @andylevine @lmno @anotherfinemass who may have additional thoughts.

You might also be interested in these related discussions if you hadn't seen them already:
- Thymic Tumors
https://connect.mayoclinic.org/discussion/thymic-tumors/
- Thymoma Cancer B3 stage 4: starting immunotherapy
https://connect.mayoclinic.org/discussion/thymoma-b3/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 3, 2023
In reply to @missbev "My husband has recurring Thymoma. He was diagnosed in 2005 with thymoma. Surgery then checked for..." + (show)
@missbev

My husband has recurring Thymoma. He was diagnosed in 2005 with thymoma. Surgery then checked for 6 or so years, everything seemed good. Then in 2015 it came back. He has been doing chemo off and on for 7 years now. He is starting to get some other symptoms like, eye-site problems blurt, spots in eyes, changes in vision. Starting to have issues swallowing, not bad but has a couple times of not being able to swallow just for a few seconds.
He just got finished with a chemo pill 21 days on and 7 days off cycle for 4 months. It was rough on him not at first but about half way thru it just got worse and worse. He will be checked with a scan at Indiana universities Simon canter. Dr Patrick Loehrer on the 19th of April. 🙏praying it reduced it again, so he can have another break.

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@missbev, how are you and your husband doing?

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