Anyone out there with Thymoma/Thymic Carcinoma

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,
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.

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.

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
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.

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

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