Anyone out there with Thymoma/Thymic Carcinoma

@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 !!!

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

Hi, I was diagnosed with thymoma stage IV on feb 2016 and red cell aplasia 5 months after my quemo on November 16 and neutropenia 3 months ago. All this related with the thymoma

Welcome to Connect, @lizah,

Have you been diagnosed with Thymoma/Thymic Carcinoma? We sincerely look forward to getting to know you.

Hi Allison I'm seeing. Dr Loehrer and he is awesome

I read through your entire chain, and quite a story. I was diagnosed with stage 2B thymoma about a year ago (12/15). I had an intense episode of pain in my left shoulder in September 2013, and while I thought it was a rotator cuff tear, it was diagnosed as a rare autoimmune condition known as Parsonage Turner Syndrome (PTS). My symptoms matched almost identically with intense pain, followed a week letter by a complete resolution of pain, but a loss of 90% of the motor strength in my left arm. I spent two years in PT regaining function and strength, and then the pain returned. This time it was clear there was a cuff tear, but it was not caused by trauma, but rather the tendon was pulling apart due to the muscle imbalance caused by the PTS. The top ortho surgeons would not operate noting that the location of the tear and the location of the pain did not correlate. Finally I found a surgeon to operate, though he warned it could be unsuccessful. I had to do something to alleviate what had become debilitating pain. That was at the end of 11/15. I then went for a pre-op clearance at my primary care doctor, who administered an EKG. He came in to state there was an anomoly, and ordered an echo cardiogram the next day. The result was that I needed immediate aortal valve replacement surgery. Penn Hospital's chief of thoracic surgery then examined me, and basically would not let me leave the hospital, noting that he didn't give me two weeks to live with this heart condition. Before I knew it surgery was scheduled, and just before the surgery they performed a CT scan of my chest. The doctor noted that the thymus appeared a bit inflamed, but advised this happens constantly. The surgery went well, and in the process he removed my thymus. A week later, while doing very well in my recovery, the surgeon visited me with an oncologist, and they noted this was the first time in 30 years that the thymus came back positive for cancer, in this case stage 2 thymoma. I went through 7 solid weeks of proton therapy treatments, which were quite debilitating after heart surgery, but it appears successful. The irony is that had my shoulder not hurt so much, I would never have found out about my heart issue. That heart problem should have been tracked my entire life, and the need for the valve replacement was inevitable. But had I been properly checked over the years, the surgery would probably have occurred a couple of years earlier, in which case they would have missed the cancer. As you've come to learn, once this type of cancer becomes symptomatic, the issues become very complex. Now what they're studying is whether the PTS itself was a manifestation of the thymoma, which is frequently linked to rare autoimmune disorders. A year later, and thankfully I am in terrific health. I went from 225 pounds to 163 pounds during this ordeal (and mind you the 225 was with 13% bodyfat). I regained about 40 pounds very carefully and have worked out like a fiend to get in the best shape possible. Now I attend the proton treatment alumni functions at Penn to try to give reassurance to patients entering treatment. Statistically, I really should have won millions in a lottery, but I'll take my health thanks.

A couple of updates, I got a second opinion after my last oncology visit was such a disaster and my case was also heard by the tumor board at Mayo and we were all able to reach a decision on how to proceed which we all agreed on. Wait 2 months have the scans redone and see a different oncologist at Mayo ( I believe he is the head of thorasic oncology) for results. We are looking to see how aggressive it is before I even think about another round of chemo to shrink them. So needless to say I have a lot on my mind. It is a bit easier now that I have some good !!! Dr.s' on my side. As a side note the clinic I am treated at has bent over backwards trying to make it right ( ref; my last visit ) and make sure I get Quality care.

Allison, I felt it was worth my time to see Dr. Loehrer. He spent at least 45 minutes with me explaining the disease, my case and future treatment. The doctors at Mayo had initially
recommended radiation. I felt very uncomfortable with this since I believe my Thymoma was a result of chest radiation I had in 1987 for Lymphoma. He agreed and said that radiation doesn't help if the tumor is completely removed. He said it tends to recur in the lining of the lungs - so where do you radiate? Also he gave me a scan schedule which the doctors at Mayo are using. I liked him and felt peace about his plans. My Thymoma was stage 2a type b3. Praying for peace and wisdom for you. I highly recommend the Thymoma Facebook group too.

Shelley what did you think of Dr. Loehrer?

everyday is important. I have lived so much longer than anticipated. When I was first diagnosed on 2009 ( I can hardly believe it has been that long ) they did not have any chemo drugs that were working well for Thymoma/ Thymic . and now they have the paclitaxel and ?????(brain fart ).
From my research it seems widely accepted that Thymoma cells are very similar to Thymus cells while Thymic has significant changes. Which clinic are you going to? I can't remember if u mentioned that. I go to Rochester Mn. I went to the Cancer Treatment Centers of America for my 28 sessions of Toma radiation therapy.
It makes it so hard on my son and husband when they tell them/me to get my things in order ....and this has happened about 4 times. Whaty even my closest friends don't get is living knowing you are dying, their response is well everyone is going to die ,meaning it's no different.
But there is a big difference......a person doesn't get reminded every day that you going to die sooner than you are supposed to. I am on oxygen 24/7 so I see it every time I look in the mirror.....after all this time it still surprises me and not in a good way.
BUT I have gotten so much more time than even the Dr.'s anticipated....so here is a toast to surviving!!!!!!!