Anyone have melanoma on the bottom of their foot?

@zxc142 what side effects did you have that made you go off keytruda?
I have been on keytruda since 2021 and will remain on it for life. My oncologist says melanoma hides and if I am off keytruda it will come back with a vengeance.
So I am in remission right now but I am suffering so badly with:
1. Severe breathlessness when barely walking 20-30 feet. As soon as I sit down I can breath perfectly. I use my nebulizer as a rescue inhaler as the inhalers are not strong enough. The nebulizer only lasts 30 min if even that. My doctors can not figure out why I have this problem. I cant go anywhere cause when I cant breath I feel as if I am taking my last breath. I sleep with oxygen but it does not help when I am breathless.
2. Keytruda effected my heart. My doctor sent me to a heart doctor. My bloodwork enzymes showed I was very close to a heart attack. I was put on a defibulator vest for 8 weeks while heart medicine repaired and protected my heart from keytruda. My heart was at 20% but in 8 weeks it was up to 55%.
3. Keytruda damaged my top teeth. They started turning dark and breaking off. I spent $17,000 on a permanent top bridge and at the time my bottom teeth looked good. It's been 2 years since my top teeth and now bottoms are looking darker and it looks like something is eating the enamel. I cant afford to do the bottom teeth. I had no dental insurance when my tops were done. We dipped into savings.
4. I have excruciating lower back pain. I had 2 back surgeries 10 years ago with no problems up to several months ago. My back doctor said my metal nuts and bolts look great but I have alot of arthritis. I feel my arthritis is being inflamed by keytruda but I was sent to a rheumatoligist to see if keytruda had caused an autoimmune disease with the arthritis. After checking results of previous test she said no they were not connected. I am not so sure she is correct.
I have no quality of life. I cant go anywhere for fear of being stuck somewhere breathless and at the same time my back pain is debilitating. I did buy a scooter to help me.
Keytruda is a lifesaving miracle drug.
I tell people it saved my live but it's killing me..

@songinmyheart54 Keytruda gave me IBS like symptoms, after two infusions they stopped, now I’m on evtivio infusions and it’s getting much more in control.. I still have melanoma in situ in my left heel and they’re planning on leaving and monitoring it with PET scans. Your are experiencing many different side effects and you have to stay on keytruda forever?

@zxc142: I have also started on Entyvio after being diagnosed with ICI (immune checkpoint inhibitor colitis) after 10 sessions of Keytruda. As my solitary lung lesion had resolved after 3 sessions my oncologist is hopeful the 10 infusions provided long term benefit as newer studies are showing one year max vs the previous two may be sufficient in such cases. I, too, will continue to be monitored with PET scans every three months. In the event of recurrence the option will either be chemo or gradual restart of Keytruda depending on how my colitis has responded to treatment. The risk of toxic side effects - which can increase with prolonged exposure to immunotherapy- can pose greater risk than benefit.

I, too, am curious about the necessity of lifelong Keytruda. From what I’ve been told, heard about in melanoma forums and read - such as https://oncodaily.com/oncolibrary/immune-oncology/lifelong-immunotherapy - there is no evidence for this and in fact can contribute to greater side effects
Does that correlate with your understanding?

@songinmyheart54: You had asked where my melanoma metastasis had been identified. It was thankfully detected as an incidental finding on an abdominal CT (meaning that was not the original intent of the imaging that had been performed for an entirely unrelated condition) as a small lung nodule that had not been there a year before. Since I’d had a wide locale excision for melanoma performed on my face a few years prior I knew to have this biopsied.

Based upon your past posts and our communication, am I correct that your melanoma was in remission but has now returned in your lung?