Anyone out there with Thymoma/Thymic Carcinoma

We made it through round one of chemo. The benedryl 50 mg zonked him for the day and the next day he felt quite good (probably from steroid). The 3 & 4th day he was hit by fatigue and bowel movements. Now he fears eating and drinking cause he doesn’t want to have an accident. We continue to encourage and will return for round two this coming Thursday. I need to ask my dads doctor about the tumor type and make up. He had prostate cancer 15 years ago and no imaging studies were done at that time. Prostate was radioactively seeded. I wonder if this could have been a thymoma that turned into a squamos cell thymic carcinoma? Is this possible? Also wanted to know why immunotherapytherapy only seems to be option after reoccurrence. Lastly, has anyone had experience with proton therapy vs targeted radiation?

We made it through round one of chemo. The benedryl 50 mg zonked him for the day and the next day he felt quite good (probably from steroid). The 3 & 4th day he was hit by fatigue and bowel movements. Now he fears eating and drinking cause he doesn’t want to have an accident. We continue to encourage and will return for round two this coming Thursday. I need to ask my dads doctor about the tumor type and make up. He had prostate cancer 15 years ago and no imaging studies were done at that time. Prostate was radioactively seeded. I wonder if this could have been a thymoma that turned into a squamos cell thymic carcinoma? Is this possible? Also wanted to know why immunotherapytherapy only seems to be option after reoccurrence. Lastly, has anyone had experience with proton therapy vs targeted radiation?

I think my dad is perplexed as he repeatedly has asked, “How did I get this?” Just before getting ill he was so thankful he had been fortunate to live a life of amazing health. Thank you for sharing. I believe betrayed by his body is accurate. I hope his underlying health pulls him through. Since being released from hospital he has been grossly fatigued. Thank you, I am going to share your experience along with Allison’s experience with him and my mom. -Gail

Hello Gail (@gailkattouf),
I am also living with Squamous Cell Thymic Carcinoma diagnosed in 2012. I had similar symptoms to your dad, and an x-ray suggested an anterior medialstinal mass, so a CT was done. I had invasion into blood vessels (brachychephalic, innominate & subclavian, and a blood clot from my left elbow to my sternum. My PET scan revealed cancerous lymph nodes in my left clavicle, so 30 nodes were removed. Like Allison Snow, I was given a terrible prognosis and projected short survival time, but also like her, here I am six years later and happy to be not only surviving, but enjoying life as it is now. Certainly my life is different from before with my health and breathing issues, but I cherish it daily.
Your dad may be feeling betrayed by his body for not notifying him earlier, I did; this is such a sneaky disease. Until is has wreaked havoc by invading many vessels, systems and organs you don't even realize it is there.
Following a less than successful surgery which sacrificed my right phrenic nerve, I had chemo, then later seven weeks of proton therapy radiation combined with chemo every 3rd week.
The first chemos I did were weekly - a combo of Carboplatinum and Taxotere. For me, the chemo was the easiest of the three treatments. I had some nausea that was fairly easy to control and didn't lose much weight.
Following initial quarterly rescans, I am now just having yearly CT scans. No active disease (NAD) to date; I can live with that.

My dad had about 6 month of progressive SOB, fatigue. He went to primary care and MD alluded it was age related changes. He is 85. He was in really good health and very vigorous doing totaled work. The SOB and weakness continue and then a couple of months ago developed a dry hacking cough. After repeated ER and primary care visits, chest X-ray revealed elevated left diaphragm. This finding prompted a Chest CT and a 6cmx5cm anterior mediastinal tumor was seen. Biopsy later revealed squamos cell Thymic carcinoma. Excision not an option after a cardiac MRI revealed invasion into ascending aorta, pulmonary artery out flow tract. The metastasized to his pericardium and he developed pericarditis and required a drain to pull off 600 ml of metastic fluid. Later a pericardial window was made. We are now home experiencing some debility from 7 days in ICU, no food, no sleep, etc. His WBC stays elevated despite never growing anything out. I keep reading about wBC being elevated with tumor progression. Pet scan did not show distant metastatic disease. So, here we are just getting back to sleeping, eating, pooping, and ambulating now with a walker and oncologist is scheduling him for palliative chemo next week. The chemo is carboplatin and taxol in 1/3 dose every week. His performance scale is improving but not a 0. Any advice on how we can best aid him through this time? Again, his underlying health is quite good for 85 and is in part the reason they are willing to even consider chemo and radiation. Insight, suggestions, prayers welcome.

Those are the same two drugs I took. What I can tell you is that I was started at 100% strength I lost all my hair after the 2nd treatment. I struggled with nausea and they just gave me very effective drugs for that I didn't eat but I didn't really lose much weight. Pain was an issue so my levels were reduced. I didn't feel anybetter but I didn't get worse. As far as this decease goes I considered it worked.I did not get another recurrence for 3 yrs used a couple different drugs (when I asked why not the same dr.s said they thought! it doesn't work as well the second time) anyway didn't matter half way thru it was clear it was not working so we discontinued. We expected some explosion of growth and a dire outcome but instead it stop growing.
so now just waiting This may sound like a sob story but it really is not

I am alive iget to see my grandchildren every week I even saw 2 be born since I got my initial DX of 6 months to live 9 years of living
Yes has there been a lot of suffering I suppose physical ,mental and emotional. more to share but I have a gransdson to put to bed so that's all I want to get into

My dad had about 6 month of progressive SOB, fatigue. He went to primary care and MD alluded it was age related changes. He is 85. He was in really good health and very vigorous doing totaled work. The SOB and weakness continue and then a couple of months ago developed a dry hacking cough. After repeated ER and primary care visits, chest X-ray revealed elevated left diaphragm. This finding prompted a Chest CT and a 6cmx5cm anterior mediastinal tumor was seen. Biopsy later revealed squamos cell Thymic carcinoma. Excision not an option after a cardiac MRI revealed invasion into ascending aorta, pulmonary artery out flow tract. The metastasized to his pericardium and he developed pericarditis and required a drain to pull off 600 ml of metastic fluid. Later a pericardial window was made. We are now home experiencing some debility from 7 days in ICU, no food, no sleep, etc. His WBC stays elevated despite never growing anything out. I keep reading about wBC being elevated with tumor progression. Pet scan did not show distant metastatic disease. So, here we are just getting back to sleeping, eating, pooping, and ambulating now with a walker and oncologist is scheduling him for palliative chemo next week. The chemo is carboplatin and taxol in 1/3 dose every week. His performance scale is improving but not a 0. Any advice on how we can best aid him through this time? Again, his underlying health is quite good for 85 and is in part the reason they are willing to even consider chemo and radiation. Insight, suggestions, prayers welcome.

Hello @gailkattouf and welcome to Mayo Connect.

I can understand your concern for your dad. I am glad that you persisted in trying to find a diagnosis for him. He is fortunate to have you advocating for him with his medical problems.

We have quite a few members who have discussed this type of cancer, including @allisonsnow. You will probably hear from Allison as well as others in this discussion group.

While I don't have any personal experience with this kind of cancer, I do have a rare type of cancer, neuroendocrine tumors, and I understand some the concerns that go with a rare disorder.

Is your dad seeing a oncologist who specializes in this type of cancer?

Here is some information about this disorder, https://www.cancer.gov/types/thymoma/patient/thymoma-treatment-pdq.

You certainly have my prayers!