Nivolumab for stage 3

This moderated forum is to support the needs of patients with stage III melanoma, as well as to answer questions about treatment options and what to expect.
Post Reply
CINDYB
Posts: 17
Joined: Wed Oct 07, 2009 9:24 pm
Contact:

Nivolumab for stage 3

Post by CINDYB » Tue Aug 14, 2018 1:35 pm

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
Posts: 11182
Joined: Wed Jan 02, 2008 12:09 am

Re: Nivolumab for stage 3

Post by Catherine Poole » Wed Aug 15, 2018 6:07 am

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.
Catherine M. Poole, President/Founder
Melanoma International Foundation

CINDYB
Posts: 17
Joined: Wed Oct 07, 2009 9:24 pm
Contact:

Re: Nivolumab for stage 3

Post by CINDYB » Wed Aug 15, 2018 7:38 am

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
Posts: 17
Joined: Wed Oct 07, 2009 9:24 pm
Contact:

Re: Nivolumab for stage 3

Post by CINDYB » Wed Aug 15, 2018 7:39 am

Sorry. Forgot to add I am BRAF negative

Catherine Poole
Posts: 11182
Joined: Wed Jan 02, 2008 12:09 am

Re: Nivolumab for stage 3

Post by Catherine Poole » Fri Aug 17, 2018 6:05 am

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.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Linny
Posts: 332
Joined: Fri Feb 03, 2012 9:24 pm

Re: Nivolumab for stage 3

Post by Linny » Sat Aug 25, 2018 11:20 am

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.
Stage III, Unknown Primary; 1 positive node in left axilla

CINDYB
Posts: 17
Joined: Wed Oct 07, 2009 9:24 pm
Contact:

Re: Nivolumab for stage 3

Post by CINDYB » Fri Sep 07, 2018 6:31 am

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
Posts: 332
Joined: Fri Feb 03, 2012 9:24 pm

Re: Nivolumab for stage 3

Post by Linny » Mon Sep 10, 2018 10:38 am

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.
Stage III, Unknown Primary; 1 positive node in left axilla

bethharte
Posts: 1
Joined: Sun Feb 03, 2019 2:20 pm
Contact:

Re: Nivolumab for stage 3

Post by bethharte » Sun Feb 03, 2019 2:32 pm

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
Posts: 11182
Joined: Wed Jan 02, 2008 12:09 am

Re: Nivolumab for stage 3

Post by Catherine Poole » Mon Feb 04, 2019 2:46 pm

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.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest