Mesothelioma - no known asbestos exposure - compensation experience

Hello @sueligthart, Welcome to Mayo Connect. Know that you are in good hands at Mayo Clinic, and that you need to focus on your health and getting better. A diagnosis like this is always devastating and not easy to process. I am a stage IV lung cancer patient (not mesothelioma) who had no risk factors for any cancer. No one could believe that I had lung cancer, except my doctors.

Here is a short list of some older discussions related to mesothelioma that may interest you:
- Any information on Biphasic mesothelioma response to immunotherapy https://connect.mayoclinic.org/discussion/any-information-on-biphasic-mesothelioma-response-to-immunotherapy/
- SMART protocol for mesothelioma https://connect.mayoclinic.org/discussion/smart-protocol-for-mesothelioma/
- Treatment Options for Mesothelioma https://connect.mayoclinic.org/discussion/mesothelioma/

@markymarkfl, Did you ever file for compensation on behalf of your father? (https://connect.mayoclinic.org/comment/883337/)

@sueligthart, I'd like to add my welcome and invite @pattyjo002 @benmab5050 @texasmimi to join this discussion about mesothelioma to share their experiences.

Sue, have you already been to Mayo Clinic? Do you have a treatment plan?

We did start that legal process about a year ago, and he died about 9 months ago. My dad had known asbestos exposure from the military and space programs, as well as some of his commercial work. The attorneys did several interviews with our family and work colleagues they could find before and after his passing, plus digging into other historical research of their own, and identified several companies that could have some culpability, including a few surprises. They have a choice of making settlement offers or going to trial. The whole process may take two more years. Since dad passed away before the lawsuit got started, it has changed from a negligence claim to wrongful death claim.

@sueligthart , given your much younger age, hopefully earlier stage, and access to Rochester, the options for you should be more numerous and the outlook much more promising. Just be proactive as heck about advocating for every aspect of your care, getting every corner looked under and every question answered for you.

Wishing you all the best!!!

What type of mesothelioma do have? My husband had Biphaic that was not surgical. The type matters for the ability to treat it and prognosis. My husband did wonderfully on immunotherapy for 17 months. Then lived another 4 months.

He filed a claim. His exposure was through the military and other jobs 50 years ago.

I have Malignant mesothelioma, epithelioid type - we are at the Mayo tomorrow to meet the oncologist. I'm hoping surgery is still an option.

My dad's was pleural and bi-phasic (epithelioid + sarcomatoid). The first two labs to look at it only saw epithelioid cells, but a third lab also spotted some sarcomatoid (more aggressive?) cells hiding in the mix.

He was 84 years old at diagnosis, and any surgery for him would have been way too radical. His options were either traditional chemo of Pemetrexid + Carboplatin or an immunotherapy combo of Opdivo + Yervoy. He chose the latter, but didn't respond well to it.

The specialist we liked best (who also discovered the sarcomatoid cells) said that if he had any ALK fusions or NTRK fusions (he didn't; only a familial ATM mutation) that there would have been other more targeted drugs available.

There are other interesting treatments like TTF (Tumor Treatment Fields) and HITHOC (heated intrathoracic chemotherapy) that might be useful in conjunction with others.

I live in Canada BC-77 yrs.pleural meso Did immno treatment but got extremely sick(hospital for 2 weeks) after 4-5?months on Chemo- did for 6-7 months now no spreading as per ct. Scan. You mentioned those new treatment TTF &HITHOC. Are they an option for your husband?? And is there anyway You can give me your Oncologist contact to forward to my oncologist. USA mayo is so advanced. Could you or her contact me so I can inform to my oncologist. I live in Kamloops British Columbia Canada. Hope to hear from you and good health and hugs to your husband. 💕Helena Byrd.

Hi @keisha2539, please note that I removed your personal email from your message. Mayo Clinic Connect is a public forum and it is better to use the secure private message function.

I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from the information and support shared.

Mayo Clinic has one of the largest mesothelioma practices. Read more here: https://www.mayoclinic.org/diseases-conditions/mesothelioma/doctors-departments/ddc-20375030
If you're interested in seeking a second opinion with Mayo mesothelioma experts, you can get started by clicking this link http://mayocl.in/1mtmR63
You can self-refer or ask your current oncologist to send a physician referral.

I think your question about TTF (Tumor Treatment Fields) and HITHOC (heated intrathoracic chemotherapy) was intended for @markymarkfl, correct.

Helena, I'm sorry to hear that chemo made you so sick. It looks like you were able to complete treatment (phew) and that spread has been stopped. Are further treatment options like immunotherapy an option for you? Are you on treatment now?

Tomorrow is the big day at Mayo, meeting with the oncologist. Last week was the first round of appointments and getting to know my way around. I feel I made the right choice to come to the Mayo - if anyone is going to give me a chance to see my children graduate and step out into the world and my husband and I to hope of more time together - it is the Mayo team.

Thank you. I've learned I have to be proactive. Mayo are brilliant and the staff helping navigate the system we were able to move appointments up. Just have to be on it and I need to upgrade my phone to have the app. Husband is on it - lucky to be in the twin cities and have access to the Mayo.