Thymoma B3

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

@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?

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/

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

@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

@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

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.

@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.

@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?

@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.

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.

@colleenyoung

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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Number was treated with surgery and then proton therapy. have they investigated whether proton therapy can be used to shrink the tumor?

@camillal

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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Hello @camillal
I noticed that it had been a while since you last posted about your husband. I hope he is doing well with his chemotherapy treatments.
I see that you posted that he would have a CT scan. Has that occurred yet?
Will you post again and provide an update?

@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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Hello @nenners
I hope you are doing well and enjoying the holiday season. Any new information regarding treatment with B3 and/or chemo?

@hopeful33250

Hello @nenners
I hope you are doing well and enjoying the holiday season. Any new information regarding treatment with B3 and/or chemo?

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Just to say have now had 7 cycles of nevomalab not without a few trials and tribulations along the way, mainly high fevers and chills but due to inflammation rather than infection. I have my 16 week scan on Monday which should reveal where I am currently. Thus far I had seen seen reduction in some tumours of 25% which has eased the pressure on my lung and ribs significantly. Had issues with high thyroid rates and some kidney function levels but all manageable thus far. The medical team seam pleased with progress but still early days with immunology I’m thinking. Will update on latest scan result when I get it. I understand the Marsden still looking to recruit B3 and thymic cancer to the trial. N

Hello @nenners and thank you so much for the update. How wonderful that you have had a reduction in some of the tumors! Twenty-five percent is remarkable in that it has eased the pressure on your lungs and ribs. Are you experiencing less pain now with the tumor reduction?

Hello @camillal. Just wondering how your husband is doing with his chemo treatments. Can you provide an update?

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