Anyone out there with Thymoma/Thymic Carcinoma

Hi, my husband was diagnosed with Thymoma in 2014. It was a pretty large tumor and it also spread to the lining of the lung (2 nodules were found). They said it's a stage 4 b2/3. We saw the head of the cardio-thoracic department in a major hospital in Sydney. We thought he was good but it turned out to be a horrible experience. This money grabbing doctor scheduled too many operations in a day and only operated on my husband at 8pm at night (he has been on the operating table for more than 14 hours by then). What turned out was that he removed the tumor (with not enough margin) and left the 2 nodules unremoved. How could he had forgotten given he told us multiple times that's what he's going to do (removing the tumour + 2 nodules). His error was eventually found by the oncologist, so my husband had to be taken to the operating table again in 2 months!!!!

After the surgery, my husband had to have radiotherapy, but 2 more nodules on the lining of the lung were found 4-5 months after the surgery. The oncologist decided to do nothing but observed. Then after 1 year when the nodules became bigger, they gave him chemo (cisplatinum & 2 more drugs). The cancer shrank after the chemo but never went away. In Aug 2018, they found the tumor became bigger again, so they gave him another round of chemo (carboplatin & another drug). The chemo didn't work this time with the tumor size remained the same, probably the tumor has gained drug resistance. The doctors decided to give him another operation to remove the tumor. This is most likely the last operation he could have. Here we are in the hospital now. My husband is recovering from the surgery. The surgeon told me the cancer was likely to have spread to other organs. Here I'm, really really really upset. We have 3 young children and my husband is only 50.

I'm at the hospital bed typing this message! I know Thymoma may not be curable but I really want him to live longer and see the kids growing up. In Australia we don't have proton therapy so treatment option is not advanced. My hubbby doesn't cope well with chemo and his first chemo was reduced to a dose of 70% after the 3rd round. I don't know if there is any better way to treat him. I don't know what we can do from here. Can anyone tell me if going to the US would be a good treatment option for my hubby, and if so, how much will it cost given we don't have insurance in the US. Any advice is much appreciated.

@tsphere and @adribunny, welcome to Connect.
Tsphere, should you wish to seek a second opinion at Mayo Clinic, here is the contact information: https://www.mayoclinic.org/appointments
You can self refer or ask your doctor to make the referral. Might Mayo Clinic be a possibility for you?

Adribunny, several members have talked about a paralyzed diaphragm and damaged phrenic nerve. Is this what happened to you?

I was 37 when i was diagnosed with thymoma. First doctors told me that it may be lymphoma. After 2 biopsies I was 3 stage. They didn't know much only that it was rare that elderly and newborns are more likely to get it. After the removal I started my radiation. 7 days I was done with I got pneumonia. At the time I received the worst news ever. The doctors that performed my removal went to deep & cut a nerve and it paralyzed my right lung. I now have have of my left lung. My life has changed completely. Sorry to ask but how old is your sister?

My sister is recently diagnosed with 85% "possible" Thymoma. She just finished 6 rounds of chemo for her lymphoma (diffuse B-Cell, very aggressive stage 4) last year and during the follow-up scans, they discovered the growth in her thymus. 2 biopsies were inconclusive but the senior and supposedly very knowledgeable pathologist reported that judging from the cells and surrounding conditions, he is fairly sure it is thymoma. The thoracic surgeon recommends the removal of thymus (thymoma). We are hoping for a 2nd or even 3rd opinion, but according to my research, thymectomy with large margin is still the most popular solution. Anyone know any doc/hospital we can turn to for a creative 2nd opinion?

@gailkattouf, I appreciate the update. Your dad must so appreciate your investigative research into his symptoms and advocating for his care. You may be interested in connecting with other members about MG here:
> Groups > Autoimmune Diseases > Myasthenia Gravis* https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Here's a discussion about Keytruda by lung cancer patients on Connect:
> Groups > Lung Cancer > Immunotherapy and chemo; Keytruda side effects https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/

However, when I searched on Connect for Keytruda and thymic cancer I found @mddelaney64's profile. While Michael hasn't posted any messages on Connect yet, I looked at his website https://thymiccarcinomacenter.com. I know how rare this condition is and he looks like he's gone through a lot of work to put together stories and information. It may be helpful for your investigations. I also hope @mddelaney64 will post his experiences here.

Gail, how did the meeting with the oncologist go last week?

It's been awhile since I posted and thought I would update. Not only did we survive 6 rounds of chemo, we made it through 6 weeks IMRT and we are waiting on CT results. Throughout all this, my dad has been a zombie. I asked 5 months ago for his surgeon (pericardial window) to order lab for myasthenia gravis, but he never did. All the docs related his fatigue and weakness to his illness/hospitalization/age. Throughout all of his treatment, outside of a low HgB requiring 2 units of PRBC, his lab values have remained all quite good, but he went from weak and tired to unsteady and collapsing. He started to fall and just related it to his legs buckling. His oncologist reaffirmed it was chemo causing it. Then, when it didn't get better after chemo and with therapy and time, radiation was to blame. However, as I watched him, he just could not connect intent to move to movement, I started to think MG. He might walk a few steps, but after any activity he was exhausted. Like paralyzed with fatigue. He always worked to breath after he spoke or did any activity. His voice was hoarse since first going into the hospital. He gets tired chewing and can only eat moist foods. He does not have double vision, but had it briefly months ago.

We finally got a referral to a neurologist and are awaiting results to learn if my dad also has Myasthenia Gravis. The neurologist suspects he does based on his neurological exam and symptom descriptions. He prescribed Mestinon 60 mg TID and he started it. His voice has come back, no longer a whisper. He is able to keep his eyes open, walking is a little easier. Probably a good indication that he has MG. Tomorrow, we meet with oncologist to get results from CT. If CT results show disease is stable, we are supposed to start Keytruda. I am wondering if any survivors here have tried immunotherapy? If any of you have struggled with MG? And wondering whether the treatment for one impacts the other? Any insight always welcome. I am most interested at this point to improve symptoms of MG and hopefully improve the quality of each of his days.

Thanks so much, 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

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
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.

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