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Posted By
1/27/2020 2:40pm
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Replies: 20

Hi all! I'm new to this board and sadly, new to my diagnosis of metastatic melanoma. I had a small melanoma on my back in May 2009. It was excised, I had a wide excision and was followed up for 5 years and considered NED. Well, fast forward to late November and the vision in my left eye became blurry. I ended up losing all vision in that eye and after many tests to figure out why I wasn't responding to steroid treatment and plasma exchange therapy, they did a CT scan and found lesions on my liver and lung. I have about 12 small lesions on my liver, one on my lung and of course, optic nerve. I'm about to start Yervoy/Opdivo and am terrified after reading about all of the horrific side effects. If you've done this treatment can you fill me in on your experience please? I'm 52 and have a 14 year old daughter and 16 year old son who desperately need their Mom around as long as possible!

Hukill - (1/27/2020 - 4:20pm)

First let me say that I never understand why someone with metastic melanoma would worry about side effects from a drug when compared to not taking the drug. In 2016 I had 7 tumors in my lungs and was offered opdivo/yervoy as really my only choice. I never worried about side effects as I just wanted it to work, side effects was a small price to pay for living. The side effects started the second week after my first combo, was so happy to see the rash appear as I knew my immune system was reacting in some form. Over the next 26 months I had 5 yervoy and 52 opdivo treatments which resulted in 7 different side effects. Some were worse than others but I was able to still work full time, had responsibilities to take care of. I have been NED since August 2017. I still deal with 5 side effects everyday and 1 that comes and goes several times a week. For me the side effects eased up after stopping the yervoy. I also think those with a higher dose of yervoy seem to have more severe side effects but we all react differently. I never had to miss a treatment or stop due to side effects.

Andrea67 - (1/27/2020 - 5:35pm)

I’m worried about the life threatening side effects. Thank you for your response.

Edwin - (1/27/2020 - 4:42pm)

I had bad side effects from ipi + nivo immunotherapy, but this treatment saved my life. I had melanoma in several bones. Very bad diarrhea began a few days after my first infusion of ipi and nivo. I needed to wear adult diapers at night and when I was more than 3 minutes from a toilet. I lost too much weight. I received my 2nd infusion for ipi 9 weeks after the 1st one. By then I had regained weight. Be sure to contact your doctor’s office as soon as you have a worrying side effect.

Andrea67 - (1/27/2020 - 5:37pm)

So glad to hear it saved your life! Hope it does the same for mine!

Bubbles - (1/27/2020 - 6:02pm)

Yes, negative side effects - even life threatening ones - are possible with immunotherapy. However, they are small when compared to the prognosis of untreated Stage IV melanoma. Side effects vary a great deal between people with some experiencing many and others few. The most expected and common side effects are rashes, joint pain and fatigue. The good news is that since immunotherapy became FDA approved in 2011, oncologists are much more aware of how to administer the treatment and more cognizant of being watchful for side effects and aware of how to treat them quickly and appropriately should they occur. While not removing all possibility of death due to such side effects - that knowledge makes such an outcome far less likely. Therefore, for the best care - be sure that you are being treated by a melanoma specialist or at least an oncologist that is very familiar with and has administered immunotherapy to many patients.

Here is a primer I put together on basic current melanoma treatments that may interest you:

Here are a zillion articles and reports on the ipi/nivo combo:

And this post, though about nivo, still gives the basic low down on immunotherapy side effects and why we have them:

There are also tons of reports on immunotherapy side effects on my blog. The search bubble is useful should you wish more info. The most important thing is to have a doc that is familiar with the treatment and then report any concerning symptoms to their office should they occur.

Hope this helps. I wish you my best. celeste

Andrea67 - (1/27/2020 - 6:19pm)

Thank you so much!

JudiAU - (1/27/2020 - 8:54pm)

I have a relatively easy time with the drugs which was kind of a surprise because I think of someone who gets all the complications. I have had all four doses of the combo and now single doses. I had one week in the hospital with very high fevers and headaches. It finally stabilized and didn’t come back. Based in scans done at that time I had a craniotomy to remove my melanoma met. The next week I restarted immunotherapy.
I’m still eating normally, rash free, etc. I do take a modest steroid dose now. I’m not even tired anymore post-infusion.

I’m so sorry about your loss of vision. That was the most terrifying experience I had. And having kids makes everything harder. I have three.
The Important thing is to know common complications and report them.

Andrea67 - (1/27/2020 - 10:39pm)

Thanks for sharing - you've given me some hope! I work for myself so taking time off is not an option, I plan to continue working throughout so I'm hoping I get off as easy as you did!

tkoss - (1/27/2020 - 10:40pm)

I am thinking you can swim in a sea of conflicting and confusing information. I too am wondering why I was prescribed 1 thing and not the other.

I ran across this from National Cancer Institue:
After a great deal of science performed they say; "It is not yet known whether treating patients with ipilimumab and nivolumab followed by dabrafenib and trametinib is more effective than treatment with dabrafenib and trametinib followed by ipilimumab and nivolumab."

TarlieT - (1/27/2020 - 11:13pm)

Hi Andrea. I agree that, while these drugs represent truly incredible advances in melanoma treatment, the near-term side effects can feel scary and sound brutal. But keep in mind that a good chunk of people have only mild side effects, and the more severe ones can generally be managed. I had my second infusion of ipi/nivo about four weeks ago, and it's true that it ramped up my immune system quite a bit! I haven't had fatigue, rash, thyroid problems, etc.--just GI upset. Like others, my main advice would be to make sure you're keeping your team informed about everything that's happening--even 1-3 loose stools can be a harbinger of emerging gastroenteritis, for instance, so the earlier your team can jump on it, the less likely it is to become severe. For example, when I started having mild diarrhea they immediately prescribed budesonide (a locally-absorbing steroid), which took care of the symptoms immediately!

Later I developed nausea and eventually vomiting/lack of tolerance for food or water, and I made the mistake of underplaying it to my docs--not wanting to waste their time or sound like I was complaining. As a result, it ended up getting more severe than it should have. Once it became clear what was going on, they put me on prednisone and some anti-emetics, and everything calmed back down again. So frequent and open communication with a team who has extensive experience managing side effects of ipi/nivo is key.

You can do this! Much warmth to you and your kids. I've found the love, support, and distraction of family to be indispensable during my little bouts with side effects.

Stage IV since May 2019 after four years Stage III NED. Receiving ipi/nivo at MSKCC with Jedd Wolchok. Age 28.

Andrea67 - (1/28/2020 - 7:27am)

Your comment is exactly why I posted! I have heard so many horror stories I really needed to hear some stories of people who were making it through relatively easily. The advice to make sure to check in with my doc immediately after troubling symptoms is huge and I'll most certainly stay on top of it! Thank you so much.

TarlieT - (1/28/2020 - 8:46am)

I'm so glad! My fingers are tightly crossed for you as you tackle this path.

Stage IV since May 2019 after four years Stage III NED. Receiving ipi/nivo at MSKCC with Jedd Wolchok. Age 28.

MelMel - (1/28/2020 - 12:15am)

I would not worry about the side-effects. I have stage IV and have undergone two of the combo infusions before getting a drug induced liver injury. It took months of steroids to normalize after which I resumed and remain on Opdivo. Combo treatment has a higher incidence of side-effects but they can be dealt with. The important thing to remember is that one can have great and lasting results even with only one, two or three combo treatments. My other side-effects were a body rash, fatigue, arthritis, neuropathy, some fevers, migranes, vitiligo and few minor ones. Remain positive and believe in the treatment. When you need to vent we are here.
Best of luck,

Andrea67 - (1/28/2020 - 7:28am)

Thank you! It's so great to have this network of people who get what I'm dealing with. Appreciate your comments!

travelgirl1 - (3/9/2020 - 12:09am)

Melanie. Hi. I had three combo treatments. Got super sick like low sodium and elevated liver enzymes. Went on asteroids like a month or 5 weeks. Then. Stabilized and the doc gave me a single dose of opdivo. I got super high fever and elevated liver enzymes. It was possible to fast after I had been so affected by the combo. Now I have been on a 5 holiday from
Treatment. I was diagnosed last June with stage 4 on liver lung rib bone pelvis etc. I had a big positive response first scan in October and dec 27 also stable or slightly better. I just had my pet scan two days ago getting results tomorrow. Nervous. Also have brain Mets. Getting radiation. Already had that two months ago. How did you do after resuming. The opdivo. ? How long have you been doing it ?
Oh. My name is Susanna. Hope to hear from you


Susanna Adler

jennifer83 - (1/28/2020 - 8:32am)

Hi Andrea. I'm so sorry to hear about your diagnosis. Our stories are similar - I had Stage 1b on my back and had it excised in 2014. Lymph node biopsy was negative. Followed-up with derm every six months, then every year. 2019 - I felt a lump in my breast and was terrified it was breast cancer - biopsy came back metastatic melanoma. It's in my liver and lungs, as well.

Hopefully my post will ease some of your worries. I've had three ipi/nivo infusions and haven't had many side effects at all. After the first infusion, I developed a rash and itch all over my midsection, but it went away on it's own within a week and it wasn't horrible to deal with. Other than that, I've had some mild GI upset and slight fatigue - some blurry vision, too.. I'm working full-time and have three smaller children (ages 2, 3, and 9). I go for my fourth infusion this Saturday. Side effects range widely from person to person! It's a lot to take on, but we've got this! Praying that things go smoothly for you.


Primary 1B in 2014 - WLE and SNB negative.
Recurrence Dec 2019 - Stage IV with mets in liver and lungs. Currently on ipi/nivo combo @ MD Anderson (Houston, TX).

Andrea67 - (1/28/2020 - 6:42pm)

Thanks so much Jennifer. Honestly, I feel so much better now. I hope you continue to be successful in your treatment and thank you for responding.

Tsvetochka - (1/30/2020 - 1:46am)

I started into this with a lump in my breast, too! It took them a month to work through pathology from the original suspicion of breast cancer to the melanoma that I actually have.

I'm on Keytruda, and it's working well. Side effects have been minimal, mostly fatigue and some GI trouble. I had a rash early on, but it was quickly and easily taken care of with a topical cream. Now my mouth is hurting, and I think that's a side effect? But really, nothing awful.

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

jbronicki - (1/28/2020 - 11:25am)

HI Andrea, So sorry you had to join this group, but you will find a great deal of knowledge and support. I'm so sorry you got this diagnosis and we all understand the panic/anxiety that comes with the unknown of both the disease and the treatment. I can't speak to side effects from personal experience, I can speak to the idea of basic understanding of these numbers or stories you hear about side effects. As Bubbles noted, the rates of these side effects is fairly low comparatively looking at the whole population that has taken these drugs and these are reported and compiled all the time. The information on her site is invaluable to look at and will give you perspective on these issues. I'm a person that finds solace in knowing that rates of possible side effects are relatively low compared to some other treatments. Low though IS a subjective definition for some. There are a couple of more common side effects (thyroid, rash, itchiness etc) based on these drug profiles that make them more likely to experience, but again, will not know if that is you. You can look up the prescribing infromation and you'll see both the common side effects and the very very rare. These drugs go through all this safety testing before they make it to market. And thanks to the folks who trialed these drugs, they can make a side effect profile for the drug and they continue to gather information while drug is publicly available. If you are a person that takes comfort in this type of knowledge, know that the drugs that make it to market like these have gone through years of testing. The whole point of clinical research and drug development is to balance toxicity (how bad are the side effects) with efficacy (does the drug work and what dose is needed to show therapeutic value). And for a disease like melanoma, you need the efficacy. Statisticians are always trying to triangulate this perfect dose against side effect profile. And these drugs are shown to work better than anything we've seen to date, that is the ALLELULIAH of Opdivo AND Yervoy (IPI). The two together are even more synergistic. Now I don't know of any evidence that anyone can predict who will have side effects (doesn't mean it doesn't exist, I just haven't pursued looking into this type of research) and who will not and what exact type of side effects for this type of therapy. I tend to research efficacy primarily. So I would stick to the facts and the proven research as many of the things on the internet are skewed towards worse case scenarios. Can they happen, sure, will they happen, it is much much less likely. Many hugs.

Jackie <3

Andrea67 - (1/28/2020 - 6:44pm)

Thank you Jackie! So grateful to you and the members who have replied and helped ease my fears. So very appreciated.