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.

@andylevine

I would also recommend the thymoma page on Facebook. I was able to get a lot of information from others that have or had this rare form of cancer. It's called the Thymoma Support Group.

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Thank you for adding this resource.

@hopeful33250

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!

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I am not sure anyone around this area (I am in Greenville, SC) is adept in Thymic carcinoma, but we have had a team really be very thoughtful and methodical in their approach to trying to manage the cancer. I believe the care takes into consideration a multitude of factors. I also believe we just do not have much time to explore many other options because my dad’s course has been complex. This tumor seems highly aggressive and invasive. I am having a hard time determining what is debilitating him more the cancer or his most recent hospitalization. It’s both alarming and concerning as we have chemo in 4 days and his performance scale is a 3 at this point and was a 0 just 2 weeks ago. Thank you for getting back to me. My mom and my sisters feel quite overwhelmed. – Gail

@gailkattouf

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.

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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

@allisonsnow

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

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We will stay positive and offer all the support he needs. I can see the internal struggle he is having. He wants to get well. We just need to keep him moving after chemo. I’ll report back. Thank you so much. – Gail

@gailkattouf

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.

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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.

@shilo14

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.

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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

@gailkattouf

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

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Hello Gail,
Yes, perplexing as there are no specific risk factors that you engage in to get awarded this cancer. "Luck" of the draw.
I am fortunate to have participated in so much prior to getting sick besides just work, such as travel, backpacking, bike riding trips, horses, raising children,…as I'm sure your dad has too in 85 years on earth. I am grateful to have a family who loves me as much as I love them and who plan some activities to include me, that while I'm sure they don't find them physically challenging, I certainly do. But I am glad to be along!
Give your dad a hug and my best. His fatigue is real, compounded by lots of emotional trauma, fear of the unknown he is entering, and the cocktails of chemo drugs and other chemicals surging through his veins. I didn't sleep at all the night of chemo due to the large steroid doses they pump into you. I opted out of the Benedryl portion of the cocktails. If he is having side effects be sure to bring it up with his doctor or the chemo nurse and they can talk to his doctor and adjust meds to his needs.
Best to you all on this journey and keep in touch.
Kristi

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?

@gailkattouf The constant swapping diarrhea and constipation, with prostate cancer, gives a strong clue. This combination, along with such things as carpal tunnel, bruising, etc, constitute a near obligatory diagnosis of My guess is that you have excessive mis-folded Proteins in our blood and urine. There is a test, SERUM FreeLiteChain (sFLC(c)) from The Bindings Site of Birmingham UK and Seattle which might help. It is a simple blood test, available almost anywhere, and it is sent to ARUP or Mayo-Quant, or Boston Amyloidosis for analysis. I think you need to begin looking at the stuff coming out of your liver and your kidneys. Also, you probably have mild enlargement of some of your organs, maybe 10% or less. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" Free, and in PDF or odt My guess is excessive mis-folded Proteins in our blood and urine. There is a test, SERUM FreeLiteChain (sFLC(c)) from The Bindings Site of Birmingham UK and Seattle which might help. It is a simple blood test, available almost anywhere, and it is sent to ARUP or Mayo-Quant, or Boston Amyloidosis for analysis. I think you need to begin looking at the stuff coming out of your liver and your kidneys. Also, you probably have mild enlargement of some of your organs, maybe 10% or less. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" Free, and in PDF for everyone who wants it.

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@gailkattouf

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?

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I did 35 sessions of proton at Penn in Philadelphia. Compared to the impacts I saw with traditional radiation, which included deep burns, it was nothing of consequence. The thymoma is right in front of the heart and lungs, and as I had just had open heart surgery the insurer approved proton.

@gailkattouf

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?

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Hi Gail,
I had 7 weeks (35 sessions) of proton therapy radiation at MD Anderson in Houston, TX. It was just over 4 months after my sugical resection and after several months of weekly chemo. I suffered with extensive radiation burns and my sternum didn't fully fuse due to my radiation treatments. Surely it can be tough, but here I am 6 years later, and I can't say which treatment saved my life or if it was all combined. We had to fight the insurance company until the absolute final appeal to get my insurance to cover proton therapy, but the final "peer review" doctor felt it was my only hope and only option, so approved it. Best wishes to your family.

Thank you all so much for the insight and sharing your knowledge and experience. We completed round 3 of Chemo today. We did skip a week due to fever which we found out was a UTI. My dad’s blood counts are within reason, except his hemoglobin is down to 8.8g/dL. He is definitely getting more fatigued and HR stays about 15-20 beats higher at rest. He started with Hgb at 13.3, so Is it fair for me to think part of his fatigue is also anemia. I asked about iron infusion and the NP did give us an option to transfuse a unit of PRBCs. Has anyone required blood transfusion or iron infusions. Thoughts on which may be better, more effective, or something to stay away from. We are also going to get a CT of chest, abdomen and pelvis to see if chemo is moving us in the right direction. If not, oncologist may add radiation. Thanks again and hope you all are managing well.

One day at a time, breath…

Gail

@gailkattouf

Thank you all so much for the insight and sharing your knowledge and experience. We completed round 3 of Chemo today. We did skip a week due to fever which we found out was a UTI. My dad’s blood counts are within reason, except his hemoglobin is down to 8.8g/dL. He is definitely getting more fatigued and HR stays about 15-20 beats higher at rest. He started with Hgb at 13.3, so Is it fair for me to think part of his fatigue is also anemia. I asked about iron infusion and the NP did give us an option to transfuse a unit of PRBCs. Has anyone required blood transfusion or iron infusions. Thoughts on which may be better, more effective, or something to stay away from. We are also going to get a CT of chest, abdomen and pelvis to see if chemo is moving us in the right direction. If not, oncologist may add radiation. Thanks again and hope you all are managing well.

One day at a time, breath…

Gail

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@gailkattouf
I have had both blood transfusions and iron infusions. They wouldn't give me a transfusion until my hemoglobin was down to 7. For me, the transfusions worked better than the iron infusions, but both were only temporary. I was eventually given a shot of aranesp. My hemoglobin is still below normal, but instead of being in the 7-9 range, my hemoglobin is consistently aound 12.

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The oncologist at last visit was sure my dad’s fatigue was chemo fatigue. Before chemo #4 his HgB was 8.8 and other labs were in line. We are 4 days out from chemo #4 and fatigue has hit him hard. Finding a comfortable position to sleep in at night has always been an issue since this diagnosis. He won’t use a wedge pillow and ends up having very splintered night time sleep. He says he feels full and hasn’t been able to eat or drink. I feel like with a left paralyzed phrenic nerve and hemidiaphram elevation it’s a compounded problem. I am also concerned that with the diaphragm elevation his small intestine is looping up toward the stomach into what was lung space or at least that’s what it looks like on x-ray. Has anyone else had feelings of fullness as if they can’t digest? He won’t drink cause he says the water isn’t going anywhere. Very frustrating for him and concerning for me. I think we may be getting fluids tomorrow and I was wondering if they ever give steroids to help get through fatigue and stimulate appetite?

Also at chemo #4, after the taxol drip was started, he had a severe reaction. He sat up and motioned that he could not breath and he turned bright red and then purple. They hit him with more benedryl and stopped the infusion for 30 min. It was quite alarming and resolved. Has any one experienced such reaction?

Needless to say, he is scared about his next 2 and final treatments. Lastly, they repeated a CT scan after 3rd chemo and the oncologist was comparing it to a PET scan 3.5 weeks prior to starting chemo. It revealed that the tumor was 2mmx 2mm larger. He said the tumor may have grown in between the PET scan and the start of chemo or that the dimensions of the PetScan aren’t as clear as what appears on the CT with contrast. He was not all that concerned and was pleased there was no new disease.

We rescan after 6th chemo and onc thinks it will be a petscan to see how “active” the tumor by how much glucose uptake it has. If tumor is stable and no new disease then we head to radiation. I am afraid to ask what happens if there is new disease or if the tumor grows…

Sorry for all the moving parts of this post and thank you for sharing your experiences…It is priceless.

Gail

@gailkattouf

The oncologist at last visit was sure my dad’s fatigue was chemo fatigue. Before chemo #4 his HgB was 8.8 and other labs were in line. We are 4 days out from chemo #4 and fatigue has hit him hard. Finding a comfortable position to sleep in at night has always been an issue since this diagnosis. He won’t use a wedge pillow and ends up having very splintered night time sleep. He says he feels full and hasn’t been able to eat or drink. I feel like with a left paralyzed phrenic nerve and hemidiaphram elevation it’s a compounded problem. I am also concerned that with the diaphragm elevation his small intestine is looping up toward the stomach into what was lung space or at least that’s what it looks like on x-ray. Has anyone else had feelings of fullness as if they can’t digest? He won’t drink cause he says the water isn’t going anywhere. Very frustrating for him and concerning for me. I think we may be getting fluids tomorrow and I was wondering if they ever give steroids to help get through fatigue and stimulate appetite?

Also at chemo #4, after the taxol drip was started, he had a severe reaction. He sat up and motioned that he could not breath and he turned bright red and then purple. They hit him with more benedryl and stopped the infusion for 30 min. It was quite alarming and resolved. Has any one experienced such reaction?

Needless to say, he is scared about his next 2 and final treatments. Lastly, they repeated a CT scan after 3rd chemo and the oncologist was comparing it to a PET scan 3.5 weeks prior to starting chemo. It revealed that the tumor was 2mmx 2mm larger. He said the tumor may have grown in between the PET scan and the start of chemo or that the dimensions of the PetScan aren’t as clear as what appears on the CT with contrast. He was not all that concerned and was pleased there was no new disease.

We rescan after 6th chemo and onc thinks it will be a petscan to see how “active” the tumor by how much glucose uptake it has. If tumor is stable and no new disease then we head to radiation. I am afraid to ask what happens if there is new disease or if the tumor grows…

Sorry for all the moving parts of this post and thank you for sharing your experiences…It is priceless.

Gail

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Hi Gail,
I'm sorry your dad is struggling with sleep on top of all his other worries. Since he won't use the wedge can you just raise the head of his bed 4 inches or more? I also lost my right phrenic nerve in my surgery to remove my cancerous tumor. I absolutely couldn't breathe laying down and my oxygen SATs were proof. I was on oxygen for months afterwards, and quite a long time more just used it for sleeping, using a wedge as well. Months later a nurse suggested I have a test at the hospital to see if using a CPAP machine (as kind of a mini ventilator) would provide enough of a positive airway to hold my right lung open, allowing my left lung to work more efficiently. It did help tremendously and I now sleep with a CPAP and can lay down. No wedge.
My first chemo was also Taxol & Carboplatinen.
Taxol was given first and I had received about 10 minutes of the drug dripping at a slow rate when I had a severe anaphalactic reaction to the Taxol and absolutely couldn't breathe.  Four nurses immediately surrounded me, stopped the administration and ran saline to flush the line and increased my oxygen by several litres. I turned white as a sheet, then flushed bright red, then in five minutes  it was all over and I was returning back to normal.  I did NOT ever get more Taxol; but was switched the next round to Taxotere, which sounds similiar but is a very different drug and completed all future chemos with that combo instead. Best of luck navigating all the hurdles and roadblocks. Sending love and light to you all. Kristi

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