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.

@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 couldn’t finish my last reply, I’m 42 and the thymoma I had, is, at least for now inoperable, Everything started by the end of feb 2016 with a pleural effusion, they put me a catheter in my lung and after a biopsy they were between linfoma and thymoma,finally Drs diagnosed thymoma stage IV, I had 4 months of quemo and the thumor kept stable until the end of october, when my hemoglobine went to 5, so Dr here in Florida (University of Miami) ordered a CT Scan, he found out the tumor started to grow again, they did a lot of blood test to figure out what happened with my hemoglobine and I decided to see Dr Thymoma in Indiana (Loehrer). He and is colleague Dr Robert Nelson (hematologist and inmunologist) explained to me that I had red cells aplasia from my bone marrow and acute anemia, it as a consequence of the thymoma. They gave treatment and I got much better. The thymoma shrunk and my bone marrow started to produce red cells again. On march 2017 my white line from my bone marrow (neutrophils) stopped, I had to go again and receive besides my normal treatment something calls atg. The problem is that my t cells (which are trained in the thymus) attack my bone marrow, it is a very rare consequence but it happens in some cases.
In this moment, I feel great. I love dr Loehrer and Dr Nelson, both are incredible and very knowledge doctors, right now my platelets are kind of low (around 30) but I guess nothing to be worry about. My next follow up is in october. In the meantime I have to check my blood every two weeks.
I hope I can have surgery one day

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@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 loved your statement “in this moment I feel great” because that is all we have …this moment. I have to be truthful. I am getting frustrated with the Mayo clinic and the plan of action or lack of I am getting. I have a new Dr. AGAIN, I have seen him once and he seems fine except he said my next appt. would be 6 months out instead of 3. That its self has been nerve wracking, waiting and thinking those extra months. of course I know he wouldn’t do it if he thought my recurrence was more active and growing faster than what we have seen. But that is just it…things can change so quickly. I am confused also why I do not see an appt. set yet???? 6 months is first week of Aug. and I see no apt on my schedule????? They haven’t done a biopsy this time because of the risk, complications with the lungs and placement of four tumors, and because all but one Dr. was 100% all four spots were not sarcoidosis and WERE thymoma. Have been weening off prednisone but no weight is coming off…. AUGH !!!!
Am grateful for what I can do right now I am going out to water my garden !!!

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@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 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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@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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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.

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

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@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

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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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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