1. < Cancer

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 | Oct 17, 2022
In reply to @colleenyoung "Hi Joe, I'm tagging @kisten23 to make sure she sees your questions to her. Fatigue is..." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 15, 2022
In reply to @joedeal "I was diagnosed with thymic carcinoma 6/2022 and am in week 8 of a 12 week..." + (show)
@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.

Jump to this post

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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2 replies
joedeal | @joedeal | Sep 29, 2022
In reply to @kisten23 "Hello! I was diagnosed with a Thymoma in February of 2020 and has it removed April..." + (show)
@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.

REPLY
1 reply
kisten23 | @kisten23 | Sep 25, 2022

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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1 reply
shilo14 | @shilo14 | Feb 22, 2022

There is a Facebook group called Thymic Carcinoma that has 710 members. We are all touched by thymic Carcinoma, either as the patient, family, or survivor. This group contains a wealth of information. Feel free to join and all my best on your journey. Kristi

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 22, 2022
In reply to @mddelaney64 "Colleen, I was diagnosed with Thymic Carcinoma and not Thymoma. My recovery from the sternotomy has..." + (show)
@mddelaney64

Colleen, I was diagnosed with Thymic Carcinoma and not Thymoma. My recovery from the sternotomy has been a process, but doing great from the surgery. I started radiation 12 weeks after surgery, complete resection.

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My apologies. I'll tag a few thymic cancer members I failed to mention like @boola @luque76 @shilo14 @ggaines118

You may also be interested in this related discussion:
- Thymic Tumors https://connect.mayoclinic.org/discussion/thymic-tumors/

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lmno | @lmno | Feb 14, 2022
In reply to @andylevine "Took quite a while to get back in shape." + (show)
@andylevine

Took quite a while to get back in shape.

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2015, congratulations! I am looking forward to getting back in the gym! Right now I am walking 1 + mile everyday, and doing a little body weight "lifting". Have you ever had a recurrence of the Thymoma? Thank you again, for your help!

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andylevine | @andylevine | Feb 14, 2022
In reply to @andylevine "My surgery was in December 2015. I’ve been doing great thought it took about 2 years..." + (show)
@andylevine

My surgery was in December 2015. I’ve been doing great thought it took about 2 years to bounce back.

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Took quite a while to get back in shape.

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1 reply
andylevine | @andylevine | Feb 14, 2022
In reply to @lmno "Thank you, Andy for your reply! After doing much more research this weekend, I agree about..." + (show)
@lmno

Thank you, Andy for your reply! After doing much more research this weekend, I agree about trying to get the Proton therapy instead of just radiation. My dilemma is that I live in Southern Oregon and will need to travel and stay in Seattle or the L.A. area for the course of treatment. How have you been doing since your surgery and Proton treatment? How long ago was your surgery to remove the Thymoma? Thank you again!

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My surgery was in December 2015. I’ve been doing great thought it took about 2 years to bounce back.

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1 reply
lmno | @lmno | Feb 14, 2022
In reply to @colleenyoung "Welcome, @lmno. Allow me to tag fellow thymoma members to bring them back to this discussion:..." + (show)
@colleenyoung

Welcome, @lmno. Allow me to tag fellow thymoma members to bring them back to this discussion: @boola @andylevine @allisonsnow @jacquie1 @shilo14 @shaycoe12 @mddelaney64 @nenners @hppydg @anotherfinemass

I can imagine that you are concerned about having such a large area of your chest exposed to radiation therapy and being told that there will likely be damage to your lungs and heart. At Mayo Clinic, there is a Cardio-Oncology Clinic especially for cancer patients who have heart disease or who are at risk of heart disease before, during and after treatment for cancer. You can read more here:
- Mayo's Cardio-Oncology Clinic https://www.mayoclinic.org/departments-centers/cardio-oncology-clinic/overview/ovc-20442193

I wonder if you might be a candidate to get radiation at Mayo Clinic or for your Southern Oregon oncology team to work with the Cardio-Oncology team at Mayo.

Has has your recovery been from the sternotomy? When are you supposed to start radiation?

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Thank you Colleen! My recovery from the sternotomy has been fairly easy. I met with the medical oncologist and the radiation oncologist and the next step would be the appointment to measure and get set-up for radiation here in Medford. However, I wasn't expecting the information regarding the high risk to my heart and lungs. The thymoma was large and there was only 1 margin in question, however the radiation will travel through my heart and right lung to reach that area. I spent the last several days researching the risks of: not even having any radiation treatment/ or having radiation treatment/ or having proton treatment (which involves treatment at least 500 miles away from home). Thank you again!

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