Chris R

I too have pituitary gland inflammation and will be on levothyroxine and prednisone going forward. Your oncologist should be able to tell from your blood work if you need to see an endocrinologist. Adrenal insufficiency is very serious, but can be managed with hydrocortisone or, in my case prednisone. (I had an adverse reaction to hydrocortisone)

Amen. The reality is that anyone could be hit by a truck before the day ends.

A melanoma diagnosis cannot help but make one face their mortality. While I have responded well to treatment and am officially in full remission as of today, I certainly will never take another day for granted. Sunrises are just that much more beautiful.

I cannot speak specifically to Pembro, but I know the Ipi-Nivo cocktail can have side effects occur as late as a couple years after treatment.

I asked that question after two or three weeks after starting Ipi-Nivo as I had no side effects. I was told not read into not having side effects as a sign it is not working. Apparently some rev’ed up immune systems are better at targeting the disease vs other organs. It’s totally dependent on the individual.

Hang in there Jeff.

Congratulations! Great news indeed. If my scan remains unchanged in March I will be able to stop Opdivo. I am not sure that I am technically NED as there is a 8mm spot in my lung that is new from my original diagnosis, but does not show bright and is not growing. I am hoping my journey goes as well as yours.

Marty, sorry that you too are dealing with this. In 2019 I had a 9mm lesion removed from my head. Clear margins and a clear CT/PET scan at that time. In January of this year PET showed a 10mm spot in left lung that biopsy confirmed as melanoma. Boom, Stage IV. I went through 3 treatments of ipi/nivo before side effects hit…hard. First PET scan subsequent to treatment showed 80% reduction in size and very low SUV uptake. After 2+ months on prednisone, I was able to get back on nivo (Opdivo). PET scan last week showed no real change from previous scan, except another spot (8mm) with no SUV uptake showed up. This is just something to watch at this point.

I am resolved to this being a roller coaster. Like a roller coaster, I am not in control. Thanks to Bubbles and others on this site distilling the immunotherapy info down into Cliff Notes form, I have read what I believe to be important and it has jived with what my care team has told me. That consensus gives me comfort.

I recall reading that something on the order of 67,000 people a year are diagnosed with metastatic melanoma and 8,700 do not make it (about 1 in 8). That means 7 out of 8 of us are still around. There is reason to be optimistic!

Hang in there and best of luck as your treatment goes forward.

Chris

I got GREAT news. 2 of 3 nodules no longer visible and the largest (9+mm) has, as the report says, “significantly” shrunk to 6mm. That works out to 75%-/- reduction in volume! Hopefully the regression continues. Well worth the 10 days of side effects and now taking a thyroid pill. Ipi/Nivo has worked!

I hope anxiotyalldaylong’s scan goes as well!

I go in tomorrow for my first post Ipi-Nivo PET scan. My first Ipi-Nivo treatment was April 20th. I remain optimistic but understand, particularly for the first scan, that it may not show ideal results. A bad scan 2 months into treatment does not mean failure.

I just finished 3 of 4 Ipi/Nivo treatments and had to stop due to colitis. I go in for my first post treatment scan on June 17. I am tempering my anxiety by considering the three possible outcomes: 1.) Scan shows regression, which would be great, 2.) Scan shows no change, no change is good. 3.) Scan shows growth, or other hot spots, okay, less than ideal, BUT… according to my oncologist, the treatment can inflame some spots to make them appear bigger initially an thus make other spots show up. It can take up to 6 months to know for sure if the treatment has failed. As such, I would view the third result as inconclusive for this scan. Will I be disappointed? Naturally, but as others have said, we need to be patient.

Lets face it, there are some things that are just flat out of our control, and I am a bit of a control freak. I have come to accept that.

I had a pretty rough two weeks with side effects that kicked my butt. (I know others have had worse) My goal from here on out is to make today better than yesterday.

I am reading a book that is basically a journal with daily thoughts. Today’s topic was courage. It had a couple quotes:

“It’s never too late to become the person you might have been” – George Elliot
“Courage is not the absence of fear, but rather the judgement that something is more important than fear”- Meg Cabot

I hope that you can move forward toward your scan with optimism and hope. There are options after immunotherapy. Keep the strength!

I just finished 3 of the 4 cycles of ipi/nivo. I had to stop mainly due to colitis. More to the point, it appears it has impacted my Thyroid as well. I go to the endocrinologist today. I will likely have to be on a thyroid medication the rest of my life. Not ideal, but lets hope I have to take that medication for a very long time. 🙂

I am to understand 20M people have to deal with thyroid issues, so we are not alone.

Last summer we went to Hawaii. Talk about sun anxiety. I purchased a number of UPF 50 long sleeve shirts on Amazon. Typically in the $20 each for what I would describe as long sleeve T shirts. The fabric was basically the cool breathing type. They worked great in and out of the water. My favorite hats are wide brim hats by Oregon Research, as I like the shape and I have a Panama Jack that is a bit more formal.

Also from Amazon I order Alba Botanica Sensitive Mineral Sunscreen SPF30. It includes 14.5% zinc oxide. It rubs in nicely and does not leave you with too much of a ghostly look.