Stage 3, about to start Opdivo

[JCKI]

Hello,

I'm 29 and was diagnosed with nodular melanoma on my ankle in early December. Since then, I've had a wide excision and two lymphnode biopsies. My excision came back with clear margins, however the groin sentinel lymphnode came back with a small amount of melanoma. My doctor has suggested I do not undergo full lymphnode removal and begin Opdivo for a year.

Has anyone used Opdivo? What was your experiences? How manageable were the side effects?

Up until now I've led an active life. Lots of outdoor activities (I'm guessing too many now 😬) and am having extreme difficulty picturing my life more sedentary. I've been on crutches for three weeks because I needed a full skin graft for the wide excision on my ankle. I haven't been able to work because my job requires me to be on my feet and am now worried the side Opdivo will force me to get a new job which I don't want to do in fear of having to switch my healthcare.

So if you or anyone you know has used Opdivo please tell me everything and anything you can. I've tried to research but have had a hard time finding anything more specific than " flu symptoms and organ failure" 🤪 my doctor has told me to expect a rash and maybe some respiratory issues. I know these things are very individual but I'd feel a lot better with an idea of how things go.

Thank you everyone!

[Asp2013]

Many experience symptoms such as arthritis and colitis, so far I’ve experienced no side effects.

[JCKI in reply to Asp2013]

Thank you for replying! Happy to know there are some who don't experience bad effects.

[Asp2013 in reply to JCKI]

Honestly, the side effects are minimal. For tips, eat small frequent meals, and hydrate!! Especially the day before treatment. The first one was rough, I didn’t bring anyone with me, and I regret that. Bring a focus item or something to do o kind of keep your self positive, and plan for longer than the appointment states lol I was there about 4 hours the first visit. Good luck, and with all of the advancements, Melanoma is no longer a death sentence! I was diagnosed at 23, prevention is key (sunscreen, and regular derm checks and scans). Genetic testing is also a benefit to learn more! Research opdivo, learn how it works, there is power and control for the uncontrollable, through knowledge. And there is a great company called “”Shit that I knit”, and they will also send you a beginner knit kit, if you feel like a new hobby or focus! Since goal making may be difficult right now, (it is for me), having a “goal” blanket helps. A physical representation of an achievable goal based over time. Also, if it hasn’t been mentioned, opdivo does effect fertility, in men and women, and is something to also discuss with your doctor. You can do this!

[JCKI in reply to Asp2013]

Thank you! I'm feeling more confident now with the support of everyone here. Funny you mention a knit kit! I've been crocheting a blanket since this all began. I'll make sure to bring it when I go in two weeks.

You're right about knowledge is power. Trying to learn as much as I can. I'm still awaiting results of if I have the BRAF variation or not.

[Asp2013 in reply to JCKI]

Same! The waiting on the BRAF

[Ch256706 in reply to Asp2013]

There is a girl on Instagram who was stage 4 and had a healthy baby boy 18 months after finishing opdivo no problem! I haven’t heard of it affecting fertility although my oncologist reminds me every month not to get pregnant ( not that I even want to!)

[Asp2013 in reply to Ch256706]

That’s the first child born on immunotherapy and they really won’t know the long term effects, but opdivo is labeled as removing fertility for most.

[JCKI in reply to Ch256706]

i haven't heard anything either on infertility post-opdivo. I've read through a lot of the literature today since I had my appointment with the medical oncologist. It advises against pregnancy during treatment, as it can cause miscarriage and effects on the baby are unknown, up to 5 months post. I'm not sure where the info on Opdivo removing fertility (at least for women) comes from, unless it is just misinterpreted.

[Ch256706]

I’ve been on opdivo for about 6 months now with literally 0 side effects other than thyroid issues. I am on medication for hypothyroidism which has helped. I have felt a little more fatigued lately and got my first rash after my last treatment which went away in like an hour. Never any rashes for the first 6 months which is interesting. I don’t know if anyone experiences side effects this late in? But it is very tolerable for most so I’m sure it will be for you! I am 30 and work full time and have a one year old at home that I still chase around no problem. ☺️

[Asp2013 in reply to Ch256706]

As your body builds up with opdivo, the side effects also build, which is why you may have gotten a rash now but but before! Thyroid issues are common also!

[Ch256706 in reply to Asp2013]

Good to know!! Thank you. Have you done opdivo ?

[Asp2013 in reply to Ch256706]

Currently on opdivo, but it’s how your immune system works in conjunction with opdivo... think of a battery that charging up.

[Ch256706 in reply to Asp2013]

That makes sense! I am feeling more tired than the beginning. What side effects have you been experiencing?

[JCKI in reply to Ch256706]

Wow! That's really inspiring. One of my bigger fears is will I/ won't I get to raise children in the near future.

I see a lot of women on here and else where who are making it work. I know I need to be careful not to get pregnant on Opdivo but it really helps my outlook.

Bless you and your family!

[Ch256706 in reply to JCKI]

Yes I totally understand that fear. I had my son and then 6 months later the mole was identified as melanoma. My melanoma specialist believes my pregnancy had something to do with the mole turning due to the hormones. I personally don’t think I will have another child which is kind of heartbreaking but I do not want to go through this again. I’ve heard of people getting pregnant after immunotherapy though! Let me know if you have any questions. It’s a hard thing to go through when we are so young.

[JCKI in reply to Ch256706]

Oh wow! I could only imagine how that must have felt being diagnosed with such a young baby. I've read a little on the subject of excess estrogen possibly catalyzing certain cancers. I 've also read about skin changes during pregnancy, deepening of melanin, skin tags, extra freckles/moles things of that sort pop up. I could see how they'd easily be missed by doctors. Completely get why you wouldn't risk it.

I will definitely do my research. My doctor told me today there is around a 40% chance of my cancer returning within 3 years. Seems best to just take it day by day as they say. It's hard though, you get all of these ideas and plans for your future and cancer just swipes them off the table. But it really makes you appreciative for what you've got.

[Ch256706 in reply to JCKI]

It absolutely does. I feel so lucky to have my baby boy even if he’s my last. Did you decide on treatment?

[JCKI in reply to Ch256706]

Yes, I'm going to start the Opdivo in two weeks. I figure it's best to make sure and at least try something. I don't think I could handle wait and see. I'm still nervous about long term effects but I'm reading a lot about low-inflammation diets and hoping that will ward off any serious complications.

[Ch256706 in reply to JCKI]

I’m glad you are doing it. Wait and see was definitely not an option for me. Good luck with everything!

[Asp2013 in reply to Ch256706]

Also, so glad you are able to continue daily activities! ❤️

[HC47]

Hi! Sorry to hear about your diagnosis I'm also 29 and was recently diagnosed with Stage IV in October. I've had 4 treatments of Opdivo and have had minimal side effects. I had did one infusion of the combo of Ipi/Nivo and that put me in the hospital, but I seem to be tolerating the Opdivo pretty well. I had some pretty bad arthritis (lower back pain, knee pain, feet and hand pain) but I'm now on a low dose steroid and that helped tremendously! I've been battling nausea every now and then, but for the most part I'm relatively normal. Hope the treatment works for you! Good luck

[JCKI in reply to HC47]

Thanks k you for sharing your experience with me! Truly amazing to be able to speak with people going through similar obstacles. I wish you well!!

[Ryan2 in reply to HC47]

Thank you for sharing your experience. So long as my most recent scan comes back clean again, which all parties believe to be the case, I will be switching from Tafinlar/Mekinist to Ipi/Nivo. May I ask what it was that put you in the hospital? Also, JCKI, please keep us posted on your experience as it seems from the comments, people get more side effects as the saturation increases. If I have any advice, I would say make sure your body is in the best shape it can be with diet, supplements, and things like meditation. Thanks -Ryan

[HC47 in reply to Ryan2]

Just had a severe immune reaction to the ipi/nivo combo. My doctor warned me that because we were doing the combo, I would have about a 50% chance of being hospitalized because they turned my immune system up too far. So that's what happened -- had really high fever, headaches, cough, etc. All thought it was the flu or something else, but after what seemed like a million tests, they concluded it was Ipi/Nivo reaction. All scans showed things were shrinking really rapidly (which was great) but that meant that the toxicity levels were really high in my body.

[Ryan2 in reply to HC47]

Thank you for sharing, I have not heard such warnings from my doctor yet. If I do begin the same, I now know what to look for. I hope that you continue to do well with Opdivo!

[JCKI]

Update:

I've had one treatment of Opdivo thus far. My next one is in two weeks. So far I've experienced a lot of thirst and a weird feeling in my throat that comes and goes. A feeling like if you cry a lot, or have a frog in your throat. Anyone else have this?

My energy is good, and some minor aches and pains I attribute to starting my exercise routine again.

Hope everyone is doing well in their journeys!