Mesothelioma - no known asbestos exposure - compensation experience

Epithelium is more responsive as there are no sarcomatoid cells. My husband’s was 70% sarcomatoid.

I hope you have success with Mayo. They are exceptional physicians and care teams.

I learned that the Toronto Cancer Hospital - Princess Margaret Center - developed the SMART treatment plan - and have success with it which has not been replicated elsewhere. This group of specialists is available.

I'm glad I am at the Mayo - and I have faith they will do everything they can - but it does not look good and that has been hard to hear but necessary to hear.

@sueligthart, I'm glad that you are satisfied with the care that you are receiving. It's great to be able to put that worry aside, so you can focus on feeling better and to take time to process the weight of the diagnosis. I'm a stage IV NSCLC patient, and it took me a few years to get to a point of acceptance. I'm like you, I want to know what I'm up against even when the news isn't good. I also understand that any statistics for my cancer are based on patients who were diagnosed years before me and didn't have access to the same treatments or research during their initial months of diagnosis. The statistics are lagging, and they also don't represent us and our specific cases. Hugs.

I so pray you are right. The oncologist estimated 18 months - I'm stage 2-3. It is devastating. I just learned from my sister that my father had asbestosis - he demolished an asbestos building for extra money when we were kids. He would be devastated if he knew I have this cancer. I'm very lucky I have a great husband, friends and family to support me. I just do not want to leave them. It totally sucks as life was just starting to get really good. Chemo starts soon and I am looking forward to that. Trying for the Carboplatinum/Pemetrexed and if possible adding Bevacizumab.

I, too, was diagnosed with Malignant mesothelioma, epithelioid type a little less than a year ago. I underwent 4 rounds of chemotherapy (Carboplatinum/Pemetrexed), and as of January 24, the cancer (stage 3) was arrested. The chemo wasn't bad; in fact the steroids they administer with it gave me new energy for a few days. When I started maintenance chemo (Altima?), they cut the steroids back to practically nothing, and I started experiencing unpleasant side effects such as nausea, loss of taste, fatigue, and weight loss. My oncologist asked me to consider taking a three-month break from chemo, and I did. I have a CT scan on Monday, April 22 to see how or if the hiatus affected me, and I am scheduled to resume maintenance chemo next Wednesday. I am 79, so I have a few years on you, and your experience may be different from mine. One thing we share though is the devastating diagnosis of mesothelioma. Not many people on this site have experience with mesothelioma, so it is good to communicate with those who do. My oncologist's first estimate was 1 yr, but the chemo seems to have slowed things down. I wish you well as you begin your journey . . .

Oh thank you so much for sharing. This has given me some hope that we can slow this thing down. My husband and I decided to take a few days hiking and having fun and hope that I wake up and it all has been a horrible nightmare. Terrible telling the kids.

The oncologist says everyone is different but knowing there are others out there helps.

Good luck on Monday. Keep me posted.

Sue, have you had any genetic testing to identify inherited mutations or somatic mutations specific to your cancer?

When my dad was first diagnosed with mesothelioma, his oncologist (who I wouldn't even recommend to my enemies) didn't think any genetic testing was appropriate, but when I finally got a word in edgewise and told him about my own ATM mutation and pancreatic cancer, he relented and agreed to order the Invitae germline test.

Sure enough, Dad had the same ATM mutation. Although it's not commonly considered a trigger or increased risk for mesothelioma, it might just be that mesothelioma is rare enough that the link hasn't been studied or recognized. Shared, inherited mutations (ATM or other) that you have (and your dad had) might be a factor that increased the susceptibility for both of you. It's worth checking because there might be other targeted treatments specific to your genetic makeup.

Speaking of makeup... The talcum powder in some makeup products may be contaminated with low levels of asbestos. I'm not aware of any direct link between makeup and mesothelioma, but it has been acknowledged that there is a _possible_ risk, perhaps made worse by any mutations you have. And I think I read that it's almost a 50-year average between exposure to asbestos and the development of mesothelioma/symptoms -- almost 60 years in my dad's case from his days in the navy until diagnosis.

Cancer can be weird like that... unknown or very surprising causes you never expected.

Genetic testing was ordered as soon as I saw the Mayo oncologist.

The exposure timeline is correct for me. It would have been on my dads clothing, he developed asbestosis. Plus we had a regular talcum powder snow storm. Most likely exposure.

Thank you for the suggestion.

@keisha2539 and @sueligthart, you mention the SMART clinical trial and may also be interested in this related discussion:
- SMART protocol for mesothelioma
https://connect.mayoclinic.org/discussion/smart-protocol-for-mesothelioma/

Thank you. I did read it. I understand the Mayo in Rochester have stopped using the protocol as they could not replicate the Canadian results.