GreggL

Sounds like a difficult year for you Steven. I was stage 3b in 2014 and 4b now. I've got about a 10" scar on my left side plus other smaller scars. I am handling it pretty well also. I think you should look at the 5 phases of acceptance. You will experience all of them, if you haven't already. When you get to the final stage of acceptance you will feel much better overall. I sometimes go back to anger or depression from time to time but I don't stay there long. This site has helped me in many ways and I'm sure it will help you also. You are lucky to have a kid and another on the way. I got married in 2016 and my wife and I want kids but I cannot have kids on this medicine. Bristol-Myers Squibb told me I should stay on it forever unless recurrence or toxicity levels. So you are lucky to have the kid area covered. Throughout my various surgeries my weight has gone down to 135lbs and I'm an everyday 185lbs so I can relate. I found myself buying a whole new wardrobe to accomodate my weight loss and then I gained it all back eventually. I'm originally from Missouri so best wishes from a fellow Midwest guy. Gregg

I was stage 3b in 2014 when I was first diagnosed. After 17 months of chemo and being off for about 4 or 5 months they found a nodule on my right lung. Everyone, except my best friend, kept saying oh it's probably nothing and that really annoyed me. My best friend said, well you've never had any tumors before on your lung, now you have melanoma and there is tumor so all signs point towards melanoma. I knew in my heart it was and sure enough it was. So, I officially became stage 4B in 2016. I had a wedge resection on my right lung. Started on Opdivo in April 2016 at the twice monthly dose and about 4 or 5 months ago switched to the monthly dose and I've had negative PET scans since I started. I really don't know how common it is for an 18 year old to have benign nodules on their lungs but with a history of melanoma it's much scarier to think about. Please let me know what happens when you find out, 18 is way too young to be dealing with this and I wish the best for him. 

I was in this exact same boat. My radiation oncologist wanted to let it grow but my oncologist thought that was ridiculous with my history and how high my mitotic rate was. She actually took my situation to the board when all the doctors get together to discuss various cases. Basically, the radiation oncologist was the only one that didn't think surgery ASAP was a good idea. All the other doctors said get it out right away. Personally, I felt like I would rather have it removed then have it monitored. If the medicine does not work you could end up with more tumors. Also, if the medicine doesn't work it doesn't matter so much anymore because it's been cut out. Of all my surgeries, the wedge resection of my right lung was the easiest. The chest tube was the most painful part of it for me. Gregg

Where did you go mountain biking? I am from St. Charles originally but have lived in Florida since 2002 with a couple years back home in MO while going through chemo. My grandpa lived down at the Lake of the Ozarks. I have recently been looking at houses in Rogers, AR and near Branson on Table Rock. I go mountain biking all the time here in Florida. There are some amazing trail systems down here if you ever make it this way. I was on the original Opdivo dose of twice a month for over 2 years. I just did my monthly treatment yesterday and it was probably my fourth or fifth month of the monthly dosing. Other than fatigue I really don't notice a difference at all. I'm not sure if you ever took the Interferon for melanoma but after that, this Opdivo is like taking aspirin. I became stage IV in Jan 2016 and they took part of my right lung at the VA in STL. I started on Opdivo in April 2016 and moved back to FL and have had clean PET scans ever since so I would assume it's working. Like most,  I was originally supposed to be on it for one year. At my one year mark I went to see a melanoma specialist and he said one more year would be good. Then at my 2 year mark I actually called Bristol-Myers Squibb myself and they said the only indications for me to ever stop taking it would be recurrence of cancer or toxicity levels. So, here I am going on 3 years and it's so tolerable I don't mind. I'm just worried my body will eventually get used to it like I have heard it does with immunotherapies. 

Of all the surgeries I've had this was actually the easiest one on me. But, like Julie in SoCal said, the chest tube was really painful for me, while it was in. As soon as it came out I felt way better. The problem was my doctor was standing in my doorway flirting with 2 nurses for a good 5-7 minutes. I was getting so frustrated watching this because I was really in alot of pain and with the meds I was on I was a little loopy and almost started yelling at him. I'm certainly glad I didn't, it might have made the stitches removal awkward. 

I started off as stage IIIB also in January 2014. I remember that itch you mentioned. Mine was on my left side and itched all day long.  Back then protocol was a chemo called Interferon and when it's all said and done, if you finish, the plan calls for 152 doses and it was very rough. After the Interferon, within a few months my melanoma had spread to my right lung, which then meant I was stage IVB. I started Opdivo back in April 2016. I was on the every 2 week dose for over 2 years and a few months back started on the once a month dosing. Fatigue is really about the only side effect I have experienced on either dose. So, sorry to hear about your new diagnosis but now is a much better time with better meds and higher survival rates. 

Hi Brad,

I met a guy in the gym almost three years ago now. After getting to know him and talking to him, one day he said to me "you just never know with cancer, I could have melanoma now and not know it". We met in St. Louis where I'm orginally from and I moved back to St. Petersburg, Florida a couple years ago where I had lived since 02'. Just moved home for awhile to be with family during chemo. Well, after I moved back I got a call from my friend telling me he found out he had melanoma and yes, it was on his right ass cheek. We both mentioned him saying he could have it and never know. He sent me a pic after his surgery and they really took a huge chunk of his ass during surgery. He didn't seem to mind but I know I would have. Seems strange to think of it in an area that never gets sun, such as the bottom of the feet which is common. Also, I am stage IV now, never was out in the sun much and have no family history of melanoma. I have been to Iraq and Afghanistan and I had a melanoma specialist looking through my medical records and he noted about 6 or 7 things that I was exposed to that can cause various cancers. 

My next dose on Oct 3rd should be #50 for me. Bristol-Myers told me the only indications for me to come off would be recurrence of cancer or toxicity.

Sorry to hear about this Mike. I remember getting the phone call telling me I had a tumor on my right lung. I was in Wal-Mart looking at fishing lures and all of a sudden I didn't feel like fishing. Hopefully this specialist or your oncologist will come up with a great plan of attack. Keep your head up. 

It sounds like our situations were very similar. In 2014 I was diagnosed at stage IIIB and started Interferon I believe in April 2014. From the very first dose I was extremely sick and in a lot of pain. I don't even know how I made it home from the hospital the first day since I drove myself. During the first month of the IV phase my fever would go up to 102 something every time. Some days it would hit 102.7, 102.8, and 102.9. When I started the SQ injections it was definitely better than the IV but my fever still went high and I always felt bad. It took me about 17 months to complete the full 152 doses. Within 4-5 months of finishing the Interferon my cancer came back and spread to my right lung making me stage IVB. They did a wedge resection in March 2016 and I started on Nivolumab in April 2016. Orginally, I was going to be on it for one year. At the one year mark they decided to keep me on it for one more year. At my two year mark I called Bristol -Myers and they told me the only indications for me to ever stop would be recurrence of cancer or progression. So, I'm going on my third year with Nivolumab and I've had clean PET scans ever since I started. Other than fatigue I have almost no side effects from the Nivolumab. I think even if I did have side effects after going through the Interferon I probably wouldn't even notice. This Nivolumab is enjoyable compared to Interferon, at least in my situation. 

Hi Celeste,

I'm really sorry to hear that you are having to deal with all this. You have helped me and countless others over the years. I hope you feel better soon. 

I never knew that his brain tumors were not related to melanoma, I always just assumed they were. I'm glad you mentioned this. 

Thanks Mike. I appreciate it and it was my pleasure.