SMART protocol for mesothelioma

Welcome to Connect, Rich. I'd like to introduce you to fellow members @galy and @shortshot80 who also have mesothelioma.
Allow me to add a link to the SMART study (https://clinicaltrials.gov/ct2/show/NCT02613299).

Rich, I'd be interested in hearing more about your experience in the study and the treatment you received. You said you "do not feel at all like I had before treatment". What symptoms are you experiencing?

Good morning Colleen,
Thank you for your response, and I would be happy to be introduced to my fellow mesothelioma members. Shortly after my surgery I experienced numerous complications, including kidney failure, heart twisting out of proper position, and infection, to name a few. Moreover, I have on-going post surgical neuropathy pain which has resulted in my having to quit my job, as well as abandon most of my hobbies. Needless to say, this has created a huge shift in my lifestyle and quality of life. While I am extremely grateful to still be alive at this point and cancer free, I continue to struggle with the emotional issues that these changes have brought. Regards, RichM

Rich, I was wondering. Did you also have immunotherapy along with radiation and surgery? I was just reading about SMART version 2.0 where researchers are investigating the addition of ipilimumab (Yervoy), atexolizumab (Tecentriq) or pembrolizumab (Keytruda). Here's the article I was reading https://www.asbestos.com/news/2017/07/06/smart-protocol-mesothelioma-with-immunotherapy/

Hi Colleen, and no I did not have the immunotheraphy treatment as this came about after my surgery. I have heard however that Mayo is the only institution in the country that has begun a cryotheraphy clinical trial before surgery, again as a method of boosting the body's immune system, which sounds very promising. Surgeons are constantly tweaking the SMART protocol to help make it more effective with less risk of complications which bodes well for future meso patients. RichM

Hi Rich,
My 22 yo daughter had the SMART protocol in Australia & has just cleared her first 6 month scan. She has had nerve pain & it has been a hard road, but she’s now planning on returning to her part time job & uni.
We are very grateful that she had this treatment & expert surgery. We had a second opinion from s very highly regarded physician in UK who said it couldn’t be done. But our amazing surgeon got RO clearance.
I thought I would connect with other people who have had this treatment
I hope things are improving for you

Hi Helen,
Thank you for reaching out to me, and I am so sorry to hear that your daughter is battling this same terrible disease. I underwent the SMART protocol in August of 2016, and I also experienced numerous post surgical complications as well, including neuropathy. After trying many different approaches for pain control I finally found that duloxetine to be very helpful with managing this type of pain. I remained cancer free for over two years until this past November where it began to present itself again. My oncologist has recently started me on a 12 week course of chemo, and if we don't achieve adequate tumor reduction and growth then we'll probably try one of the immunotheraphy drugs such as Keytruda. The medical community is constantly making improvements to the treatment regimen for mesothelioma, and your daughter's young age and health will certainly be in her favor. Some patients have lived long, happy and productive lives following meso treatment, and hopefully your daughter will be able to do so as well. Best to you both.

This is the first time ive heard of the SMART protocol, and that its available in Australia, can I ask Helen, where ( which city) which hospital her daughter received this treatment?

Hi @natalietenzin, apologies in the delay in welcoming you to Connect. You can find our more about SMART here https://clinicaltrials.gov/ct2/show/NCT02613299
Reading the location details, it appears this study is only being conducted in the US at Mayo Clinic in Rochester.

Natalie, I look forward to getting to know you. Do you have mesothelioma?

Does anyone know if such treatment is available at Baylor in Houston?

Husband was not offered the SMART protocol diagnosed in Late January with Biphasic (epithelial and sarcomatoid cells identified) Pleural Mesothelioma. He is being treated with Opdivo & Yervoy as well as a 5 day radiation trial to an enlarged area of the lower right lobe. He also had a chest PleurX drainage system for about 4 weeks. He was not a surgical candidate but the radiation seem to help his lung capacity as his O2 sats have been 98-100. The cancer remains but seems to be under control for now. No pain, mild occasional cough, and no fatigue; however he has lost 75 pounds and much muscle.
I’m sorry to hear of all of your painful and limiting side effects. May you heal and May the cancer be kept at Bay.