Nivolumab for stage 3

[CINDYB]

Hi

Trying to decide if I should do nivolumab treatment as adjunct treatment. I was diagnosed nine years ago stage 3 , no known primary, two lumps removed which were lymph nodes. Left forearm. Did Leukine for 10 months and NED since then. Had a local recurrence in June. Lump removed from arm near where nodes removed and positive for melanoma BRAF negative. PET negative. I want to do what I can to prevent any further disease. Have seen three doctors at two cancer centers in NYC and getting conflicting recommendations. One non- comital, one recommends wait and watch and other recommends nivo treatment monthly for one year. Long term side effects scare me but so afraid of further disease. Any help much appreciated. Thank you

[Catherine Poole]

Hi Cindy,

I imagine this has been a scary time for you. What NY centers have you been to? Are you BRAF positive or negative? Has Keytruda also been offered as a choice? Because of the unknown primary you are a bit more high risk. Where was the Leukine prescribed (just curious since it failed studies). Hope you don’t mind more questions to discuss this fully.

[CINDYB]

Hi Catherine

Thank you Have been treated at MSK since first diagnosis in 2009. Tried leukine at that time until they stopped it. There were very few options then and I wanted to try something. They diagnosed my recurrence. My options are wait and watch with close observation or nivolumab for one year. Having a hard time deciding. I still can’t believe this is back after nine years. I went to NYU this week for another opinion hoping it would help me decide . I need to decide soon since I need to start treatment within three months of surgery which was early June.

Thank you

Cundy

[CINDYB]

Sorry. Forgot to add I am BRAF negative

[Catherine Poole]

Having an unknown primary puts us in a place of not knowing why there would be a recur after 9 years. But this decision to take a PD1 drug or watch and wait is up to your gut instinct. If the tumor was completely removed and there is no evidence of disease, then you might want to see if your body can again do its thing of keeping the disease at bay. Leukine may have helped as well. On the other hand, if you are very anxious about a return, go head with either Keytruda or Nivo. I hope this helps.

[Linny]

Wow, we were diagnosed at around the same time! This November will be 8 years for me. I’m also an Unknown Primary but with 1 lymph node affected in my arm pit. Where did your melanoma recur? In another lymph node?

You’re in great hands at MSK. I think if you opted for Nivolumab, you’d most likely get the close observation along with it. While Nivolumab is not without side effects, I can’t imagine them being worse than with Leukine. It’s also more effective than Leukine. I would seriously consider Nivolumab. But the decision is yours to make.

[CINDYB]

Linny

My recurrence was in the same arm. Lymph node distal to two previous ones. all in left arm. I decided to do nivo treatment. Had one infusion and so far no serious side effects

Thanks.

[Linny]

CINDYB wrote:

Linny

My recurrence was in the same arm. Lymph node distal to two previous ones. all in left arm. I decided to do nivo treatment. Had one infusion and so far no serious side effects

Thanks.

Hi Cindy,

It sounds like they did not perform a full axial dissection on you. Is that correct? Good luck with the treatment. I hope you are able to tolerate it well so it can work its magic on you.

[bethharte]

Hi,

My story is about the same but I am in Ontario, Canada. In 2010 I was diagnosed with stage IIIA, SS, non-ulcerated with a microscopically positive SN. I did the full 52 week Interferon protocol as it was my only option other that ” wait and watch” which I was not emotionally comfortable with. I discovered a recurrence myself, in October of 2018, in the inguinal basin where I had a LND in 2010. I have personally decided to proceed with Nivolumab. My Oncologist who is one of the top Melanoma Specialist in Canada has told me the success rate with Nivolumab in creating a durable response is significantly higher than Interferon so again, emotionally I find myself “needing” to proceed for my mental health which, as a nurse, I understand is a vital component of the healing and preventative process.

[Catherine Poole]

I’m sorry to hear interferon is still in use. I remember a top doc at Mayo calling it “crap.” You suffer so through it. Hopefully the Nivo will be effective and less toxic for you. Let us know how you are doing.

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