RichInLife2

When I was on Opdivo, the charges that I saw was $70K per treatment including drug, hospital services and labs. Most of the cost was the drug, but I was never billed a penny for that, although I did have to kick in my portion for the services and labs. You should check with your insurer, but I’d be suprised if the hospital hasn’t already gotten the approval themselves.

Good luck, buddy. I’m praying for the day that you can go back to being just plain Mike!

-Rich

Congratulations. That is great news! Wishing you similarly good news from your CT scans.

So sorry to hear this. Wishing her and her loved ones peace.

I ended up with Type 1 diabetes. Later, when I had to take prednisone to deal with colitis, my glucose levels went really high and I had to up my insulin dosage. They’ve leveled out now that I’m off the prednisone. Hopefully, your injected insulin requirements are temporary. Good luck.

Hi Lydia,

I had radiation to a brain met followed by 8 rounds of Nivo. I didn’t have whole brain radiation, it was targeted to a single met. I didn’t notice any mental issues myself, but my wife says that she thought I was acting a bit more “spacey” than usual. I’ll take her word for it, but I don’t know if the spacey-ness was due to the radiation, the immunotherapy, the overall stress of what I was going through, or some combination of those things. I was able to keep to my normal activities and didn’t miss any work back then, other than for scheduled medical appointments. After three Nivo treatments, I also developed type 1 diabetes (I did miss work for that hospital stay). I continued on Nivo another 5 treatments, before getting colitis (more missed work), which booted me off immunotherapy completely. The good news is that my scans have been stable since last November and my doctor believes that I have no active disease and that my long-term prognosis is highly favorable (they’re always hesitant to say “cured”).

I think there’s a good chance that your husband’s mental state is temporary. Let’s hope so. Also, as others have said, having a strong immunologic response (even if it’s something you DON”T want, like diabetes) is a good prognostic indicator that his immune system is revved up and fighting. At least that’s what I’ve been told and, from my own data point of one, it seems to hold true.

I know this is a very stressful time for you. Does your hospital offer any support groups for caregivers? Or is there someone there who can point you in the direction of supportive services? I know this is hard. Friends and family can offer some support but only someone who has been through this can really understand.

You can always come here. This is a great community, even if we can only offer virtual hugs. You are not alone.

Hi, studiodad. My experience with opdivo was overall good. The actual infusions were painless and I had only mild fatigue the day or two after. I did have some side effects and my treatment was stopped after 8 infusions due to colitis. I’m doing fine now and my scans have been stable since last November. My last PET scan showed no active disease. More details in my profile, but I went from stage IV a year ago with mets in my lungs, liver and brain (the brain met was treated with radiation) to being told that I have an 80-85% chance of not having a recurrence.

They’ll probably give you a pamphlet listing all the symptoms for the most common side effects. Notify your care team immediately at the earliest sign of any of those symptoms. Most of the side effects can be managed if caught early. Immunotherapy has saved a lot of lives. I’m not saying there’s nothing to be afraid of, but if I had to do it over again, I would say “hook me up and start pumping it in now!”

Good luck,

-Rich

I’m not sure what you mean by “fullness.” If the melanoma had spread to a lymph node, it could feel like a hard lump, or it could feel like a soft, squishy mass. If it felt like either of those things, I would choose a needle biopsy over an ultrasound alone. If it’s not either of those things, then I’m not so sure. Melanoma could cause pain if the mass were pressing on something, otherwise there’s often no pain associated with it.

Not sure what to tell you, but if it truly bothers you, seek another opinion.

-RIch

I faced a similar decision last year when I was diagnosed stage IV. The standard of care that everyone was recommending was the combo. I was very uncomfortable with the risk of side effects. If you look at the statistics from the trials, the incidence of grade III and IV adverse effects goes up disproportionately with increase in clinical benefit. In other words, you get a lot more serious side effects and only a modest increase in overall survival.

https://www.nejm.org/doi/full/10.1056/NEJMoa1709684

Now, on the other hand, the combo can often give a quick and durable response, and as Celeste points out, the IPI can be stopped and monotherapy continued with Nivo if side effects do occur. It’s a tough decision. I ended up choosing Nivo alone because I was risk adverse. As it turns out, I ended getting diabetes and colitis from the Nivo. and I got kicked off all treatment in April. So much for avoiding risk! The good news is that I had a good response from the Nivo alone and my last two scans have been clean (no active disease). Obviously, this is a big YMMV.

The doctors I’ve seen are all surprised that I chose monotherapy over the combo, but I was lucky that my original oncologist at Dana Farber was supportive of my decision and didn’t try to pressure me into choosing a treatment that I was uncomfortable with. You are not crazy in your thinking. You have to do what feels right to you. I hope that the doctors you see will support you in whatever treatment decision you decide upon.

Good luck,

-RIch

I don’t know who you saw in Boston, but I was very happy with the care I received at Dana Farber. It doesn’t sound like you’re seeing a melanoma specialist, because I can’t believe they wouldn’t want to do follow-up scans for 3b. Just as a personal data point, I had an swollen lymph node that was misdiagnosed as a sebaceous cyst. I’m not saying you have been misdiagnosed, but I would certainly want an opinion from a melanoma specialist and radiologists who are trained to look for melanoma.

Good luck!

Hi Richard,

I’m not aware of any data for survival rates beyond 10 years. Don’t pay too much attention to statistics, good or bad. Everyone is different. The important thing, as others have noted, is to see a dermatologist for regular FULL-BODY exams. Try to find a dermatologist who is knowledgeable and has experience with melanoma. I was surprised, but most don’t seem that knowledgeable to me. I’ve had two dermatologists since my diagnosis and neither seemed to know much beyond the basic ABCDEs, which everyone should know. So, find yourself a good dermatologist, and also learn how to do a self-exam. You’re looking not just for the ABCDEs, but also check for any swelling around the original site. This could mean lymph node involvement, making you stage three, so it’s important to catch that early. It’s helpful to have someone else to check the areas you can’t see, such as your back and your scalp.

As for your other question, I would not fear the sun, but the precautions you mentioned are all sensible.

Good luck,

-Rich

Hi, I agree the new website design is NOT an improvement. What might work is clearing your browser cookies for melanoma.org. The method for doing this varies with different browsers, but can be found readily via google. After clearing the cookies for melanona.org, go to the following URL:

https://melanoma.org/legacy/user

You should be prompted for your username and password at that point. Good luck!

-Rich

Mike, that really sucks. I can only echo what Celeste said. It might be time to find another doctor, second, third opinions, etc. You’ve fought so long and hard and with grace and courage, don’t let one doctor tell you it’s the end of the road. As long as you’re behind the wheel, keep on driving.

You are in my prayers. Good luck!

-Rich

Hi Tim,
I’m a patient at Yale/Smilow and I can tell you that you are in good hands. My doc is Mario Sznol, but I have also met with Dr. Kruger and I can tell you that patients that I know who have her as a doc love her. Having said that, don’t be afraid to seek a second or third opinion, no matter who you see first.
As for prepping for treatment, all I can tell you is to treat it like a bad cold. Rest, fluids, and a varied diet. Also, I know that this is the scariest time for most people because there is so much that’s unknown or undecided. Once you find out for sure what you’re dealing with and come up with a treatment plan it will get better.
Good luck,
-Rich

I would also like to see that. Unfortunately, I think research, both at pharmaceutical companies and research institutions, is mostly driven what is patent-able. In the meantime, I recommend the book “Anticancer: A New Way of Life” by David Servan-Schreiber.