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.

@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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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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@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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@joedeal

Hi Colleen. Do you know the status of @allisonsnow? I am hoping to chat with her. Considering that her posts are now 5 years old, that may not be possible. She is the only person I've found that has thymic Carcenoma. I'll be doing my 10th chemo treatment this afternoon. I'm wondering what the success rate is for treating this cancer. Do you know anyone that is willing to chat?

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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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@colleenyoung

Hi Joe, I'm tagging @kisten23 to make sure she sees your questions to her.

Fatigue is one of the toughest side effects of cancer and its treatments, especially chemo. You might appreciate the tips shared by members in this related discussion:
– Fatigue and cancer treatment: How do you cope? https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/

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Hi Colleen. Do you know the status of @allisonsnow? I am hoping to chat with her. Considering that her posts are now 5 years old, that may not be possible. She is the only person I've found that has thymic Carcenoma. I'll be doing my 10th chemo treatment this afternoon. I'm wondering what the success rate is for treating this cancer. Do you know anyone that is willing to chat?

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@allisonsnow

I have looked into some of the trials and I thank you for the list of current (and past) trials. On many it is either the distance or requirements that rule out my participation. I have had surgery ,radiation (toma-therapy ) and chemo ( using two of the drugs tested in a previous trial ) .
As I am sure all of you do also, am getting a bit anxious for the tests and results.

I may have a rare cancer we all have so much in common, I look forward to rewarding discussions on connect.

Erin

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Hi Erin. I'm just wondering what you're current status is since your part is 5 years old. I was diagnosed with thymic Carcenoma this past June and I'm now in week 10 of a 12 week chemo plan. The best prognosis I've heard so far is that 55% of patients with this chemo live another 5 years. I deeply hope all is well with you. Blessings.
Joe

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@colleenyoung

Hi Joe, I'm tagging @kisten23 to make sure she sees your questions to her.

Fatigue is one of the toughest side effects of cancer and its treatments, especially chemo. You might appreciate the tips shared by members in this related discussion:
– Fatigue and cancer treatment: How do you cope? https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/

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Thanks Colleen. I'll check it out.

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@joedeal

I was diagnosed with thymic carcinoma 6/2022 and am in week 8 of a 12 week chemotherapy plan. Side effects of sleepless nights and quickly fatigued and now my hair is falling out. Hair and fatigue is fairly new and the fatigue gets to me the most. Wondering if it gets worse.

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Hi Joe, I'm tagging @kisten23 to make sure she sees your questions to her.

Fatigue is one of the toughest side effects of cancer and its treatments, especially chemo. You might appreciate the tips shared by members in this related discussion:
– Fatigue and cancer treatment: How do you cope? https://connect.mayoclinic.org/discussion/fatigue-in-cancer-treatment/

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@kisten23

Hello!

I was diagnosed with a Thymoma in February of 2020 and has it removed April 29, 2020.  I want to share my story with people that are going through / have gone through the same thing.  It has been so therapeutic to find this forum and read all of your stories.  I documented my story here – https://1in1point5million.com/

I am here if anyone wants to chat.

Thinking about you all ♥️ 

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I was diagnosed with thymic carcinoma 6/2022 and am in week 8 of a 12 week chemotherapy plan. Side effects of sleepless nights and quickly fatigued and now my hair is falling out. Hair and fatigue is fairly new and the fatigue gets to me the most. Wondering if it gets worse.

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Hello!

I was diagnosed with a Thymoma in February of 2020 and has it removed April 29, 2020.  I want to share my story with people that are going through / have gone through the same thing.  It has been so therapeutic to find this forum and read all of your stories.  I documented my story here – https://1in1point5million.com/

I am here if anyone wants to chat.

Thinking about you all ♥️ 

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