Thymoma Cancer B3 stage 4: starting immunotherapy

Posted by nenners @nenners, Dec 9, 2018

I am about to commence a trial Opdivo for my thymoma now stage 4
Would welcome any thoughts on this topic.? Previously had numerous surgeries and chemo ( cisplatin based ). Be grateful for any thoughts or experiences

Interested in more discussions like this? Go to the Cancer Support Group.

@nenners Welcome to Mayo Connect,

I understand that you have had numerous surgeries and chemo for thymoma. Has your thymus gland been removed?

In the NETs discussion, I have not heard of Opdivo being used previously. I hope that someone who is familiar with this treatment will post.

What type of symptoms do you have with this type of cancer, @nenners?

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Hi @nenners
Several people have talked about Opdivo for melanoma, lung cancer, kidney cancer, colorectal cancer and other cancers here on Connect, I but don't recall anyone with thymoma discussing it. Is this the trial you will be participating in? https://clinicaltrials.gov/ct2/show/NCT03134118

You might also be interested in these discussions in the cancer group:

- Anyone out there with Thymoma/Thymic Carcinoma https://connect.mayoclinic.org/discussion/anyone-out-there-with-thymomathymiic-carcinoma/
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

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Hi @nenners What kind of surgeries did you have ? And when was your diagnosed ?

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@hopeful33250

@nenners Welcome to Mayo Connect,

I understand that you have had numerous surgeries and chemo for thymoma. Has your thymus gland been removed?

In the NETs discussion, I have not heard of Opdivo being used previously. I hope that someone who is familiar with this treatment will post.

What type of symptoms do you have with this type of cancer, @nenners?

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Yes full removal of thymus which was encapsulated it was feared that seedlings may have been spread by the biopsy? So I have had recurrent tumours on my pleura, chest wall and diaphragm. All done through the ribs which is hellish, now resultant is quite a lot of nerve
damage which causes some difficulties. No real pain from the tumours but now pressing on the lung and pericardium. N

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@colleenyoung

Hi @nenners
Several people have talked about Opdivo for melanoma, lung cancer, kidney cancer, colorectal cancer and other cancers here on Connect, I but don't recall anyone with thymoma discussing it. Is this the trial you will be participating in? https://clinicaltrials.gov/ct2/show/NCT03134118

You might also be interested in these discussions in the cancer group:

- Anyone out there with Thymoma/Thymic Carcinoma https://connect.mayoclinic.org/discussion/anyone-out-there-with-thymomathymiic-carcinoma/
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

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Correct trial at the Marsden (London). From my reading limited success with B3, and maybe needs chemo alongside but I feel this is the way forward and science needs to explore this avenue for a brighter dawn. N

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Good to hear from you again, @nenners. Have you looked at the links that @colleenyoung posted above? I think you might find helpful information there and find some Members to post with and get more information about Opdivo.
Take a look at them and post again. I would like to know how you are doing.

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@nenners

Correct trial at the Marsden (London). From my reading limited success with B3, and maybe needs chemo alongside but I feel this is the way forward and science needs to explore this avenue for a brighter dawn. N

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I do admire people who participate in clinical trials, @nenners. It does pave the way for future patients. Thanks for being a part of that journey and education.

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@camillal

Hi @nenners What kind of surgeries did you have ? And when was your diagnosed ?

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Hi @camillal, welcome to Connect. Do you also have thymoma carcinoma?

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@colleenyoung

Hi @camillal, welcome to Connect. Do you also have thymoma carcinoma?

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Hi @colleenyoung No not me, but my Husband got diagnosed a month ago, and he just started his Chemotherapy two weeks ago. He does not have any specific side effects yet. We are going for his other round on Monday. After to rounds he will have a ct scan. The Doctor told us he probably needs 6 rounds of Chemo in order for an operation. They will scan him for every second round. The Doctor told us the chemo is to stop the spreads ( which is in the pleura and two lymph nodes) and also for shrinking the main tumor before the operation. Does any of you have a similar story ? Sorry for my english skills. I am all the way from Denmark. Best to all of you.

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Hej @camillal, welcome from Denmark. Your English is perfectly fine.
I'd like to invite @shelleyfl35 @andylevine @lizah and @jean25 to this discussion. They, too, have thymoma cancer and may have chemo experiences to share with you.

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