Anyone out there with Thymoma/Thymic Carcinoma
Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.
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Nivolumab in Patients With Type B3 Thymoma and Thymic Carcinoma (NIVOTHYM) (NIVOTHYM
In the uk. I went to the Marsden because nothing was really working. Saw Dr Popat who suggested this phase 2 trial checking for acid / alkaline levels but it is helping me with B3 since 2006
@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:)
Thanks Nick. I have sent an email to the trial contact email. Hope they get back to me soon. I'm also thinking to reach out to Dr Popat in Marsden. Going to the UK can be an option for us. Val
It is confusing and very challenging trying to find treatments as there are so many points of view but the emerging science is giving some hope to a diseases that are little understood. My journey was one of repeated surgeries over 10 years, chemo and radiology but the B3 repeatedly returned. Was accepted on the opdivo trial at the Marsden, not been without some challenges but it appeared to be reducing my tumours. A year ago I was told there was no treatment as my diseases were inoperable… so it puts you in a difficult place where you do clutch at straws. I think it’s worth a mail to Dr Popat at the Marsden who did acknowledge my initial enquiry. I wish you well and pray that there will be something that gives you hope, because without hope it is a bleak world. Nick
Hi @gailkattouf, I know this is tough. My dad also didn't want any information about his condition. He didn't want to know about possible side effects. He just wanted to deal with the ones he got. For him knowledge wasn't power. For me it is. At times I understood and at other times I didn't. It was hard to swallow when he didn't want to help himself. Anger was also something I had to deal with. Luckily he threw that anger only at me and not my mom. Thus we divided the roles of mom took care of dad and I took care of mom. Still it was hard to witness.
Gail, is the plan to keep going with the Keytruda treatment?
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.
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.
Hi @gailkattouf, I've been thinking about you and your family. How are you?
I was diagnosed with Thymic Cancer September 21, 2017…… Surgery on October 9, 2017
Welcome to Connect, @boola. Did you have any treatment after surgery in 2017? How are doing today?