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.

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allisonsnow | @allisonsnow | Jul 22, 2017

It has been a busy summer it seems...a lot of babysitting...this week for example had the 3 that live nearby for 3 days next week the one that just graduated is coming down for a week that will be fantastic !!! He has been so busy ,getting ready for college, that I have not seen him much.but it has all added to my stress levels. My pain has increased A LOT and all this humidity has made my breathing almost impossible. I have Dr. appts first of Sept I guess they had planned for Oct. but I really didn't feel I could wait that long

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 20, 2017
In reply to @allisonsnow "To everyone.....THANK YOU, finally finding some people that "get it" has been a godsend on many..." + (show)
@allisonsnow

To everyone.....THANK YOU, finally finding some people that "get it" has been a godsend on many days

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Hello @allisonsnow,

It's been awhile since we have heard from you. I hope you are enjoying the summer. How are you feeling?

Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
@shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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@gaybinator You've provided some good advice! Teresa

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allisonsnow | @allisonsnow | Jul 4, 2017

To everyone.....THANK YOU, finally finding some people that "get it" has been a godsend on many days

REPLY
1 reply
allisonsnow | @allisonsnow | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
@shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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I agree, I am calling them on Weds. and am going to try to co-ordinate two other apts . Now that is something I always have to ask for, if left on their own they will schedule them all separately ....but all in a two week period...sigh

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
@shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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@allisonsnow Your posts are always inspiring. I'm glad that you are part of Mayo Connect. I hope you have a great visit with your grandsons. Teresa

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allisonsnow | @allisonsnow | Jul 4, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
@shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

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@lizah
I have heard a bit about aplasia but will have to do a search and learn more. and yes I agree , one of the good things about 6 months is nothing is happening...no decisions to be made etc.
Do you have the guilt of what this has done to your family? I can't imagine being told ( a few times ) that your wife is dying make final arrangements. Yet other times I feel I have to remind him I AM THE ONE DYING he really complains about taking me to Dr. appts.
Well everyone have a wonderful 4th !!!! We are so lucky we have the health care available to us that we do!
I am headed over to see 3 of my 5 grandsons

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 4, 2017

@lizah I'm so glad to hear that you are feeling better right now. It is wonderful that you have found a medical team that is so knowledgeable and helpful. Please keep in touch and let us know how you are doing. Teresa

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Gaybinator | @gaybinator | Jul 2, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
@shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

Jump to this post

My husband has been fighting Squamous Cell Carcinoma since 2014. We have relocated to Jacksonville twice for treatments. One thing we learned is never, ever let scheduling make appts for you. Call the doctor's office directly and make an appt. Don't wait, as it could have fallen through the cracks. I have nothing but the highest praise for Mayo, but you must be proactive.

REPLY
LizaH | @lizah | Jul 2, 2017
In reply to @shelleyfl35 "I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for..." + (show)
@shelleyfl35

I was diagnosed with Thymoma last year at Mayo Clinic in Jacksonville. A CT scan for something else showed an unusual growth on my thymus. A wonderful team of mayo clinic doctors removed it and I am being followed every four months with CT scans. There is a wonderful Facebook group with lots of information about this cancer. It is called thymoma cancer research. I also saw the top specialist in the country at Indiana University. His name is Dr. Patrick Loehrer. Many people have a good prognosis and new treatments are being developed every day. With a condition so rare, you have to do a lot of footwork on your own. Prayers for healing and recovery.

Jump to this post

I understand when you say you are nervous about waiting 6 months for your new appointment, it actually happens to me also, my next CT will be in October, but on the other hand it means that we can wait, nothing is gonna happen until then (hopefully) so in the meantime we NEED to enjoy the great moments cause our lifes are a roller coaster today we feel great but we don't know about tomorrow, in my case, because of the thymoma, I developed an autoimmune condition and my T cells decided that my bone marrow is an enemy and they attack my cells red and white. It's call aplasia

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