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richm
@richm

Posts: 6
Joined: Mar 01, 2018

SMART protocol for mesothelioma

Posted by @richm, Mar 1, 2018

After being diagnosed with stage 3 pleural mesothelioma I underwent the SMART protocol 18 months ago. At that time i was Mayo's third patient to do so. I am cancer free at this time, though do not feel at all like I had before treatment. Are any of Mayo's other SMART patients on this site? How are you doing?

REPLY

Welcome to Connect, Rich. I'd like to introduce you to fellow members @galy and @shortshot80 who also have mesothelioma.
I don't believe there are other Connect members who are enrolled or took part in 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/

@colleenyoung

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/

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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.

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