My name is Mike & Im new here to MRF

Hello Mike. Just to share my personal experience. My history is on file. I had Melanoma in the middle lobe of my right lung in 2010. Primary was a mole behind my right ear removed in 2006.Bot were surgery resected. It spread to my stomach in 2015. Six months later it re-occurred on the same lobe and a furher op was done over the same scar to remove it. Both tumors were in the region of 5 to 7 cm long x 2 to 3 cm wide. Due to its size my stomach was totally removed. I lost 35 Kg in the process. I was put on a course of Interferon for 3 months bjut despite that in 2016 it progressed to a 7cm by 5cm tumor that attached itself to my Pancreas, Colon and Spleen. The spleen was removed and portions of my colon and pancreas were removed in November 2016 resulting in a hospital a stay from 23/11/2016 to 3/1 2017 (spending Christmas and New Year there. Horrible! Despite that a post op pet scan indicated a further 3 spots in my stomach area lining. I just finished a course of 4 IPI infusions every 21 days. Melanoma is a very tricky devil. Your question is related to the op itself, I can assure you it is a major operation cut the cut id long (about 14cm from behind your shoulder blades to close to your stomach, They do have to crack a rib (3 times in my case) to enable them to access the lungs. Your lungs are deflated and you are put on a  occurring but this is more of an irritation for 2 days in my case as my lungs failed to inflate at the second attempt, I did not experience any significant pain discomfort. I spent 2 1/2 weeks in hospital on both  the lung ops and stomach op. The last one in Nov 2016 was the worst as my Colon developed a leak and a serious infection resulting in the long stay. As of today I am very well with only the side effects of the IPI still manifesting itself. Had a Pet Scan yesterday to see whether or not the last 3 spots have disappeared. The op was the best option but be aware that in my case it was not a cure but it has extended my life dramatically. I feel very good despite all the drama. I really wish you well and pray that you have a successful op and a good recovery. No one can predict whether or not it will metastasize but that is a risk one has to take. Please do not for one moment let my response influence any decision you take. This as my personal experience and the bottom line is that it effects every one differently. Good luck and God bless you and all other members on this forum. We all fight the same battle and we will win!

First I would like to ask are you seeing a melanoma specialist.  Most will not use chemo as many have talked about on this board both pro and con.  The spots in the lungs could be something other than melanoma as many have discussed worrying about it being melanoma but found out it was not.  Some have said the spots in lungs don't even show up on the next pet scan so if yours is small this might not be the melanoma.  I wish you luck in whatever you choose but would suggest a melanoma specialist as they are the most up to date on what works for melanoma.

If your oncologist doesn't mention immunotherapy, specifically names like Yervoy (Ipi), Opdivo (Nivo), Keytruda (Pembro), and only uses the word "chemo" then he's not the right oncologist for you. I know how hard it can be to get a true melanoma specialist when you're in the Kaiser system. Some oncs are fairly up to date, some are totally out of the loop. Just make sure you have one that at least knows that melanoma only gets treated with immunotherapy, not traditional chemo. Also, if the lung spots are small, there is definitely no reason to go breaking your body wide open. Most of us have dealt with small lung spots from time to time, some have grown and then needed to be biopsied to confirm melanoma, and then they start treatment. Some have had VATs surgery, which is much less invasive. Others have had spots show up, then at the next scan or two after a few months they shrink and then eventually dissapear. Or they never grow any bigger, that's also a sign they're not cancer. Lungs get spots, it just happens, healthy or not healthy, you can't always be certain it's melanoma when they're small.

Hi Mike,

Glad you found this board – it's definitely one of the largest and most up-to-date repositories for great information existing online today!!

Just a bit of a different perspective for you: we are in Canada and they don't believe in surgery here to fight mel. Targeted therapy (Taf/Mek combo for BRAF+) and immunotherapy (ipi/Nivo, Nivo maint.) are the standards of care. My sister is just about to complete treatment that has worked on a very high tumour burden that involved her brain (radiation was used too for that), bones (spine, ribs, femur, ankle), lungs, liver, spleen, pancreas, omentum and tons of sub-qs.

She's had no surgery at all since original diagnosis, WLE, SLNB and removal of that group of lymphnodes. 

Immunotherapy is not chemotherapy and though there can be side effects, it's tolerated differently by each individual. Most importantly, for many it finally represents real hope and progress!!!

Wishing you the best outcomes regardless of the treatment plan your docs devise for you!!

Barb

Hi Mike, 

My mom was part of Kaiser Orange County and we made a trip to Kaiser Riverside when she was first diagnosed.  We did not feel that they were very up to date on the latest in melanoma treatment and there was no sense of urgency.  My mom is Stage IV.  We ended up paying for an out of pocket consultation to see Dr. Ribas at UCLA and then have Kaiser apply his recommendation.  We now see Dr. Hamid at the Angeles Clinic.  I highly recommend that you see one of these specialists or visit one of the specialty centers for a second opinion.  

Definitely see a melanoma  specialist. I had vats  surgery for lung met and was out in three days. But they knew it was definitely melanoma. They use immunotherapy to reduce everything down before surgery.  

I have 3 letters for you: USC. They are simply the best. And yes, get a second and even a third opinion. My Mom even had a fourth. That was USC.

My Mom was stage IV. Misdiagnosed by a number of doctors and then a radiologist missed the brain mets. The third opinion found them. A radiation oncologist “missed” one the day she had gamma knife for 8. – The treatment plan of the fourth opinion and the care at USC (the new radiation oncologist found 17! when someone else said she had a new one, but we should watch it)… Roller coaster!

Point of this is, find the best. Make sure they communicate and its best when the are in the same hospital and better yet same building.

My Mom’s doctor is Dr. James Hu. Her radiation oncologist is Dr. Eric Chang and her neuro-oncologist is Dr. Naveed Wagle.

She ended up with 28 brain mets, but you’d never know it. She’s 81 and is on a cruise in Alaska… She would not have had this outcome without getting the right doctors and the right team who worked together.

Good luck,
Patina

PS
My Mom’s original doctor at USC was Dr. Mike Wong. He left USC a while ago and was simply amazing! Dr. Hu took over and he’s been fantastic.

Oh my goodness Mike……. after reading that, I'm curious what happened at your oncology appointment! Please tell me there was mention of Ipi/Opdivo combo or Keytruda. They should also be getting your brain MRI scanned, and testing you for BRAF mutation (that could open up further doors for ridding you of the lung lesions without any ribs getting snapped)! If, by chance, the oncologist doesn't find a drug that rids you of the lung lesions…… as already mentioned… USC. I had a large lesion in my lower right lobe (along with a 2 cm in the lower left lobe). MEK inhibitor shrunk it down from 9 cm to a little over 5 cm. At the time, Keytruda was not an option for me, and Yervoy had done nothing to help it. Soooooo… the lower lobe had to come out. Dr. Jeff Hagen at USC went in and fully removed the lobe, WITHOUT CRACKING MY RIBS. DaVinci robotic surgery. I've got three very small scars where the tools were inserted (each about 1/4 inch long), and one scar (about 3 inches long) below the rib cage, where the lobe was pulled/pushed (the escape hatch! ha!) from my body. Fast forward from surgery 4 months, and Keytruda was FDA approved. My left lobe lesion disappeared within 2 months.