← Return to Anyone out there with Thymoma/Thymic Carcinoma

Discussion

Anyone out there with Thymoma/Thymic Carcinoma

Cancer | Last Active: Sep 3, 2023 | Replies (136)
Comment receiving replies
@colleenyoung

@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?

Jump to this post

Replies to "@gailkattouf, I appreciate the update. Your dad must so appreciate your investigative research into his symptoms..."
nenners | @nenners | Mar 14, 2019

Hope this might be helpful? Having had many surgeries and chemo ( cusplstin and entopside) my B3 stage 4 showed little reduction. Now on a trial of Opdivo and after four cycles showing up to 25% reduction and they side effects have been manageable to date. Nick

VIEW AND REPLY
gailkattouf | @gailkattouf | Mar 14, 2019

@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:)

VIEW AND REPLY
gailkattouf | @gailkattouf | Mar 22, 2019

@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.

VIEW AND REPLY