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Mar 23, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

No more Keytruda. He is home on hospice. I believe the pneumonitis has taken its’ toll and a sudden massive disease progression left us no alternatives. We were all shocked. Even at 85 he is not prepared to die and we had such good early results so we thought. We prayed we would make it to point where would be able to get Keytruda. I am not sure if the massive and sudden distal disease progression was hyperprogression from immunotherapy or just a nasty aggressive cancer.

My dad had things he was looking forward to. We were planning an each trip but he is too weak. My mom is devastated. My sister and I are loving and supporting them both as they need it.

I am hoping the spiritual counselor will help us reframe our perspectives and we can stop crying. We value life, celebrate health and have gratitude for all the 84 years of amazing living. It’s been a beautiful ride for my dad with plot twist he never could have imagined.

Mar 22, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

@colleenyoung

Thanks Colleen.

My dad developed pneumonitis/pneumonia and is currently hospitalized. He now requires oxygen.The CT of chest/abdomen/pelvis showed decrease in primary tumor size but new metastasis to adrenal, liver, pelvis, psoas and trochanter. What we thought was a degenerative shoulder is now actually looking like bone mets. His inguinal lymph node enlarged and was just confirmed as large squamos cells. We are going home on hospice.

Mar 14, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

@colleenyoung thank you for the MG link. I will take a look. My dad is losing hope and he doesn't seem to take a personal interest in knowing about his condition. I think it is too terrifying. His weakness is beyond profound. Prednisone 60 mg PO and IVIG every 3 weeks and he is still getting weaker and more discouraged, so may be it wasn't MG…neurologist said he definitely has severe peripheral and motor neuropathy and thought it could be MG.

He is also thru 2 treatments with Keytruda. We were told that we may not have symptoms at all with the immunotherapy except for skin rash, but apparently everything exhausts my dad. The prednisone ( for MG) is exacerbating labile emotionalism and anger. We are tapering 5 mg q2weeks so is going to take awhile for him to get off it. His mind is clear but we find him somewhere else and he is not living a quality life.

Our hearts are broken because we are even questioning why we went down this road. He continues to see commercials for immunotherapy and wonders why he doesn't feel like the people in the commercials.The cumulative effect of the cancer/age/chemo/radiation/immunotherapy have been more than tough. One day, just one day I would love for him not to feel shattered.

Thanks again for the link:)

Jan 23, 2019 · Thymic Tumors in Cancer

Hi there and welcome,

My dad was diagnosed with a mediastinal mass 6.5cm X 5.8cm on August 7, 2018. Like you, I was feeling overwhelmed at the lack of current research and the research that existed lumped thymomas and thymic carcinomas together (to get a bigger sample size) added to my frustration and fears. I was hoping it was a thymoma, but learned it was squamous cell thymic carcinoma. This path was sent off for further analysis which took another 3-4 weeks to result, but was able to tell us how receptive it would be to immunotherapy. The chemo regimen of carbosplatin and taxol had just fair results.

What I learned through my dad's surgeon, at least in our case, was that de-bulking was not an option with his type of tumor. What we were told by the surgeon was that he would not even attempt to remove the tumor unless he was sure he could safely get all of it. This being an aggressive tumor, he didn't want to leave any of it behind. To determine proximity, a cardiac MRI was ordered to try to "see" if it had invaded or nested too close to vital vessels, like the aorta. The surgeon was hopeful he could do the surgery, but after reviewing the cardiac MRI he and his team felt the tumor was too close to my dad's pulmonary artery and innominate vein for him to attempt to safely remove it. His fear was to open my dad's chest via sternotomy only to realize he could not do anything or worse attempt surgery and have a poor outcome. A poor surgical attempt would simply delay treatment for 5 weeks and that's barring any more time due to surgical complications.

Since thymic carcinoma is rare AND aggressive form of cancer, he consulted with cardiologist reading MRI, oncologist, radiation oncologist and his surgical partners to make the safest decision and determined the best course of action for my dad. We ended up not having surgery, but did have chemo and radiation. My dad's tumor has not spread and after radiation was notably smaller. He has since been started on Keytruda every 3 weeks. The disease is currently stable and we could not ask for more.

I would definitely find a surgeon who was not eager to cut, but one that was thoughtful and understood this type of tumor, meaning since rare they will need to review and learn about this very rare cancer. Time is of the essence. I never appreciated all the considerations that have to made until we were knee deep. We were fixated on surgery, but know we went down the right path.

Please feel free to ask any questions. You are not alone and treatment options are getting better with options in immunotherapy.

Gail
Greenville, SC

Jan 13, 2019 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

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

Oct 7, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

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

Sep 27, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

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

Sep 11, 2018 · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

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?