I'm a 47 year-old male. I live in St. Louis and I have a 14 year-old and a 5 year-old. I was diagnosed with with MPM 15 months ago. There were no symptoms. I had a tumor about 6 cm long attached to my pericardium, several 1 cm nodules in my mediastinum and a few patchy areas with very small (< 1 mm) tumors in the pleura of my lung. My PET scan showed an SUV max = 3.1. I had tumor analysis done at the University of Chicago and it showed a mitotic index of 1 and nuclear atypia of 2. No growth was seen of the tumor was seen from diagnosis until my surgery.
I had a pluerectomy and decortation done at the University of Maryland by Dr. Friedberg on 7/14/15. My chemo was done at Barnes in St. Louis and consisted of 4 rounds of Alimta and Carbo.
I'm currently NED and I walk 2 miles a day and do some push-ups. I recently hiked up the Chimney Tops in TN. This was a struggle but I made it most of the way until I ran out of water. I have various minor pains from the surgery and the surgical site is sore. I don't have anymajor pain. I realize that this is uncommon for Meso patients but I was wondering how many other Meso patients are doing well? I don't want to get to excited because I paranoid about a recurrence.
Reply # - July 15, 2016, 09:47 PM
I want to add that there wasn
I want to add that there wasn't any lymph node involvement detected.
Reply # - July 16, 2016, 10:24 AM
Hi ront,
Hi ront,
Welcome to GRACE. It's terrific to hear that you're doing so well a year out from your surgery. I don't know how many MPM patients visit GRACE, as its not that common a disease, but perhaps you will receive a response from someone in a similar situation.
In the meantime, there continue to be developments in MPM treatment, including an early clinical trial of pembrolizumab, an immunotherapy agent which showed promising results. You can read about it by following this link.
I understand your worry about recurrence; uncertainty is one of the most difficult aspects of coping with a cancer diagnosis. Most GRACE members are quite familiar with "scanxiety" those anxious days and weeks leading up to the next scan results. Although that feeling never goes away, it gets a bit easier to deal with the further you get from initial treatment, as the process of waiting and scanning and waiting again becomes another fact of life. To me, it's a reminder of how important it is to enjoy each day. It shouldn't take something like a cancer diagnosis to make us realize that, though it often does.
The American Cancer Society has a page devoted to cancer recurrence here.
My thoughts are with you, with hope that you can find some peace of mind.
JimC
Forum moderator
Reply # - July 16, 2016, 10:56 AM
Yes, I definitely have a bad
Yes, I definitely have a bad case of scanxiety. My next scan is coming up on 7/28. If the results are good then I can most likely live a normal life for four more months. I saw an old post by Dr. West and he said meso is an aggressive disease but behaves indolently in certain patients.
Reply # - July 17, 2016, 07:46 AM
Just curious to see if you
Just curious to see if you know the cause of your meso? There are support groups out there and can help answer some of your daily living experiences with meso. Though it's lung cancer, it's a very different LC than many of us have. I know in my support group,I've seen very few meso patients. Maybe you can check out the link and see if it's something you'd be interested in. Wishing you the best.
Take care, Judy
https://www.mesotheliomaguide.com/community/support/
Reply # - July 17, 2016, 02:33 PM
Most of the links out there
Most of the links out there are associated with law firms. I am a member of a very good group but I thought I would post here because what Dr. West posted about some mesotheliomas following an indolent course.
Reply # - July 18, 2016, 07:57 AM
One of the top meso surgeons
One of the top meso surgeons in the world is Dr. Sugarbaker who is now at Baylor College. I went to him for my surgery when he was in Boston at Brighams, because my tumor had invaded the pleura and was 5.2cm.
He did a great job via VATS, that was in 2013 and I have adeno. Here's a link to a good article with him.
Take care, Judy
http://www.cancernetwork.com/review-article/malignant-mesothelioma-pleu…