JudiAU

Following. After many treatments and a a very heavy steroid and anti-seizure load I know it is coming.

Hopefully things have cleared up up by now but almost all vision changes, including those from steroids, are temporary.

I am so, so sorry to hear this. I guess I haven’t checked the boards in a while. Absolutely devastating. Bubbles, you were the best of us. Thank you. Your blog and advice was so useful when I was in such a deep place. And your fashion was out of this world.

I’ve had radiation used twice after craniotomies, once for a melanoma met and another time for my actual brain tumor that had a tiny bit of growth. In both cases it was to deal with the small scraps that of tumor or cancer that is left behind and the surgeon can’t get. Neither was a big treatment just 2-4 sessions and not the big radiation sessions you hear described. The radiation is sort of like clean up. I don’t know anything about radiation pearls. Sounds horrible. Usually the oncologist and radiologist work as a team to schedule the best approach for a particular met.

When I was initially stage IV and I had a small area of lung met/biopsy for confirmed melanoma. Immunotherapy made the area inactive. I later had a terrible cough I got from my kid at the end of immunotherapy. I seemed to get much sicker then and I had three kids. It was awful. They finally did X-rays to check for pneumonia and my lungs were so bad, as you describe, I had to get early CT scan, same readings. Come back in three months. All gone. A bad cough really can mess with your lungs in a very visible way.

There is no clock but he did you a disservice by denying you access to a higher level of drugs? Is that the case? You have only had single agent? What level of scans have you had? Where do you or did you have Mets? I would personally switch oncologists, switch drug regimes, and wipe out the Mets if you can. They had more time in your body to replicate without the best treatment and you should be angry.

To put it as politely as I can, there is a very large “divide” among melanoma specialist about steroids and melanoma and many specialists particularly mine absolutely would have treated with the immunotherapy the absolute minute she could physical tolerate it. Because it needs to get in the body working and she would still be tapering. And they will treat while steroids are ongoing as well to manage AE so you can continue the drugs. “Doing well” is pretty meaningless when you have widespread melanoma and multiple brain Mets. And why single agent originally?

I am so, so sorry you are going through this situation. I would really suggest you spend time on this board and read through the posts and Bubbles. She and Ed have a wealth of knowledge and it is very important to see a melanoma specialist who treats melanoma exclusively and is running a very busy office/trials.

AIM/MRF do a good job of giving a good overview of stages of melanoma etc. but I wish there was more information about common treatment issues like detailed side effects and how to manage them, and steroid basics. Also, now that people are living longer with previous rare issues doctors are frequently treating radiation necrosis. These issues need to be detailed and updated. I’d also like to see updated survival stats. People seem to think they will either die immediately or everyone lives if they get immunotherapy. There is a lot of nuance that is missing. Melanoma is not a chronic condition but some people need guidance on how to live when they are not dying.

I am glad to hear about the positive CT scan!

I am glad you feel you are in good hands. Because immunotherapy has so transformed melanoma care, a lot of patients and less experienced doctors I read about online are acting like it is sort of a done deal. But really we have much to learn about how immunotherapy can and cannot be administered to people with serious AE. I think many experienced doctors want more drugs + steroids, I know mine probably would. But I know other prominent doctors who still avoid mixing immunotherapy and steroids. What I want is for everyone to live.

A brain met that is present and not diminishing is a serious issue. So if it is not resolving/resolved because of the immunotherpy/radiation or planned crainiotomy please make sure you are getting a second opinion. They can spread quickly.

I don’t have personal experience.

But you should you know that there are lots of ways to administer immunotherapy. 1/2 doses or different pacings etc. There are different ways to administer to reduce side effects. Treating the side effect and returning to drugs. Returning to drugs at a different dose. Treating the side effect and returning to treatment with steroids throughout immunotherapy. Ideally, you would get a lot of the drugs which continue to work in your system.

I developed high fevers after my second combo dose and was hospitalized for week. Then had craniotomy to control brain met and then returned to immunotherapy with steroid support. Also had one dose of radiation during this period. Finished all four combo sessions. Switched to single dose immunotherapy and completed two years. Been NED for three years.

I’ve read an awful lot of treatment protocols. Hopefully your doctors can keep you on immunotherapy as long as possible. If your doctor isn’t a melanoma specialist please start seeing one.

I’ve noticed it with myself. But I have also had multiple intense crainiotomies, have an unrelated brain tumor, had a stroke, etc. I have taken many heavy rounds of steroids and current rounds of anti seizure meds. Immunotherapy drugs were hard but steroids and anti seizure meds are just as hard for me. I have picked up a lot of damage a long the way but it is hard to figure out where it is from.

Swelling and brain Mets can be a common reason for brain changes but I’d assume he is getting MRIs every three months. I think it is more likely that you are seeing the effect of drugs (short, longer term) than early onset Alzheimer’s which is even more rare. Read the labels again for drugs inserts and talk to your doctor.

Really terrific news Luvnlyf. But take all the drugs you get lol. I asked for extra and tried to stay on immunotherapy for as long as they would let me!

I am sorry. Whatever it is, I am sorry. Your doctor has probably already explained this but it may or may not be melanoma. There are plenty or people in this board who have had multiple major health conditions, even multiple cancers. If the MRI seems to suggest metastasis then a careful doctor and frankly, likely required by insurance, will probably be a biopsy next to confirm the type of cancer. At various points I have lung and breast cultures biopsies done and each time they were not presumed to be melanoma without a clinical diagnosis, even with a giant brain met in my head. Than you can get a treatment plan together or get transferred to the appropriate care.

Thank you a lot for sharing. I hope the TIL continues to keep you strong. Weirdly enough I shared many of these experience through my prior brain tumor journey, prior to melanoma. Dry eye and mouth from nerve damage and terrible shaking from sepsis once and immunotherapy fevers another time. You have my utmost sympathy.