Chris R

I think part of anxiety can be the loss of control and the feeling that one cannot do anything. I am stage IV and went through immunotherapy. While no input on thc/cbd, I did ask my oncologist about high dose vitamin C. She consulted with the hospital pharmacist and recommended against while on immunotherapy as it acts to rev up the immune system even more. Point being, do some research on vitamin C and melanoma. Early studies were promising, and later studies less so. I came away with it being inconclusive, but harmless. I am fortunate that my immunotherapy worked and I have been NED for over a year. After being off the ipi/nivo and then nivo for awhile I started upping my dose of vitamin C, but not to saturation. I take about 5,000 mg per day. Does it help keep things at bay? Who knows, but I feel like I am doing “something”. That said, always talk over what you are doing with your oncologist.

I have found prayer/meditation to be an effective means to help with anxiety for me.

We all have different journeys and hopefully yours will be be okay. As point of reference, and hope, I was diagnosed with a 9 mm (yes, no decimal) lesion on my head in 2019. Even being that thick, it did not travel to any lymph nodes.

Long sleeves, big brim hat and sunscreen are my new realities…as well as enjoying every day.

Hang in there. Waiting is certainly tough. All you are hearing is true. <1mm is good (well, as good as it can be). .3mm was very early. No doubt you should find a good dermatologist and get regular checks.

Sunscreen, UPF rated clothing and a large brim hat are good to protect from the sun.

Try to keep yourself busy with everyday activities and stay away from Dr. Google.

My best for your recovery.

Chris

Finem Respice, best of luck with your consult today. My journey with melanoma began in 2019 with a significant cutaneous lesion on my scalp (9mm thick). Fortunate that it did not spread to any lymph nodes. Fast forward 2022 I went in for my annual PET scan and a 9mm nondual was discovered in my lung and a couple small spots elsewhere. I made it through 3 cycles of Ipi-Nivo before colitis getting to severe. After a break for 2 months I was back on Opdivo for 6 more treatments and declared “in full remission” in March.

Long term impacts (so far) stem from it inflaming my pituitary gland. As a result I have hypothyroidism and have adrenal insufficiency. The hypothyroidism is managed with a pill early every morning, 1/2 hour before I get up. The adrenal insufficiency is managed with low dose prednisone (in my case) in the morning. I am more fatigued and as an avid cyclist have found I cannot ride at the same pace or for as long of distances as previously. Humbling, but okay. Has my quality of life changed? Somewhat, but not to a degree that regrets me having done the treatment, far from it.

I am almost 60. I like to think the treatment has given me the chance to live with cancer vs dying from it.

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.