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I’m not sure I’m ready for this ride...

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I’m not sure I’m ready for this ride...

Posted By
DT1985
3/10/2020 12:57am
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Replies: 13

Hey folks, I’m back again. Quick recap...
Nodular Mel back of calf 1.5mm deep, no ulceration
WLE - clear
SLNB - not clear, involved less than 1mm (only took one node from groin)

Making me now IIIa. (Until I do the PET/MRI scans to see if it’s elsewhere)

The crappy part about my story was I received a phone call from the VA the other day stating that everything was clean. Only to go to my surgery follow up today and be told “actually there was cancer on the SLNB”. So I have already have had quite the up and down ride with this.

Questions...

I am on Long Island in NY and looking to take my case to the best. I have received names like Dr. Weber at NYU, Dr. Postow at MSK, Dr. Kudelka at Stony Brook. Of course I’ve heard many other names from friends/family and what you folks have said, but how do I decide? I live in Stony Brook so that’s convenient for the one but the doc isnt renowned like Weber or Postow. I’ve seen other names on this forum for docs at MSK in Manhattan as well, Chapman? I don’t know who to choose, but I do know the VA is not where I want to fight this. I would like a doctor who won’t treat me like he’s doing me a favor by seeing me that day. And someone who has a team that will stay on top of things and not say “oh sorry, we forgot to tell you blah blah blah” or get my pathology report wrong.

Also...

How do I get my BRAF checked?

Should I get my LDH checked?

Guessing PET scan is next step and MRI. Will they want to take more lymph nodes regardless or only if PET shows something? I’ve read that a dissection is no longer considered worth the risk of lymphedema. And how bad is lymphedema? I fly a lot for work, would that complicate me going back to work?

I’ve seen immunotherapys of Opdivo, Keytruda, and IPI, but also Nivo, Pembro, and Yervoy. Is that just brand names of the same drugs? Does one work better than the other? Most common draw backs to those?

What if it was just the one lymph node that is involved. Is immunotherapy still needed?

And now that I am IIIa, is it almost a certainty that I will have a reoccurrence somewhere else in my body at some point? (granted it hasn’t already metastasized) It seems some of you folks have almost gotten used to the fact that this crap doesn’t go away ever.

Again as always, I am very grateful to all of you and your willingness to share your experiences. I hope one day I can be the book of knowledge for someone that started in my position. Actually I hope no one ever has to experience this....cancer sucks

Here is a link to an Onclive video series from last June, that features several specific videos explaining staging and treatment options for stage 3 melanoma. The panel features Dr. Weber and other top melanoma experts in the melanoma world. you can add to your list Dr. Wolchok and Dr. Postow at Memorial Sloan Kettering. Ipi=Yervoy, Nivo= Opdivo, Pembro=Keytruda with the last two being Pd-1 inhibitors and standard of care for stage 3 patients, the panel get into your specific 3a category and the plus and minus of treatment vs observation with close monitoring. Good luck with the process. Ed https://www.youtube.com/watch?time_continue=35&v=TE9bDoHplzQ&feature=emb...

I would join Onclive, free but you have to fill in your information. Here is next video in series that I took off youtube, series on Onclive has 4 or 5 more videos. https://www.youtube.com/watch?v=Eov56UjzO18&feature=emb_logo

One last video from Onclive series, look at numbers at bottom of video and pick #5 to see other videos in series from last June. https://www.onclive.com/peer-exchange/malignant-melanoma-management/stag...

Hi, I used to live in Stony Brook, L.I. but now Port Jeff Sta., I started my treatment 4 years ago today with Chapman at MSK and then switched to Dr. Wolcholk. I'd rather travel into the city and see the very best then go local. I 'm very happy with him but have to be honest, most of the time I see the Nurse Practitioner.
Heidi

Hey Heidi, could we possible connect? I’d love to ask you more about your experience. I believe you can connect with me through my profile. I tried looking for your information but your profile isn’t filled out.

If this allows me to post it, my email is

David
Tracy
85
At Gmail

Hi David,

I just emailed you my cell. You can text or call anytime.

Heidi

you said IIIa?

Biopsy suggested spread from primary(mole). until SLNB there is no way to tell for sure if melanoma cells had traveled to lympth nodes from moler(aka primary). SLNB showed they did and so 4 nodes were removed. it was and educated guess by surgeon if he got all involved nodes.

So did you have and SLNB?

I was prescribed Nivo known as Opvido by one Onc and Pemrb known as Keytruda by another. My decision which to use was basically a role of the dice. The best I could determine they have about the same efficacy according to clinical trials. Your Onc bases his prescription on clinical trials, not trial and error with patients. In my case I was prescribed 240mg Nivo(Opvid0) twice a month for a year. the Onc prescribing Pemrb(Keytruda) prescribed 12 infusions, once a month for a year. I am guessing but its only a guess the Nivo is infused at half doses twice as often.
it kind of of makes sense , side effect wise, if you get less juice per infusion. However it may not be a factor at all. It all depends on what clinical trials reveal.

the other issue I ran into, since I had a second opinion was that the Nivo Onc wanted to infuse me via a port and the Pemrb Onc via injection. since I chose Nivo Onc (for other reasons) I got 24 x 12 @240mg Nivo (opvido) .

finally I too inquired about BRAF. neither Onc spoke about doing the test. I brought it to their attention. their response was that the mono-therapy should be sufficient and targeted therapy would only be considered if mono-therapy didn't work. Again based on results of clinical trials.

I have had 4 Nivo infusions at 240mg so far with no side effects.

I also live on Long Island and go to MSK. It is worth the trip into the city to go there. They can do the scans on Long Island you just have to ask and they arrange it for you. I have my scans done in Uniondale and I see the Doctors in NYC. They set up the appointments and everything for you. I know getting the diagnosis and scans at the beginning is nerving but you have nothing to lose by call them up and making an appointment there. I think my email is with my profile if you want to contact me. Try to stay positive (easier said than done) I have stage 3b melanoma and so far so good. I am NED.

Ellenb626

I also live on Long Island and go to MSK. It is worth the trip into the city to go there. They can do the scans on Long Island you just have to ask and they arrange it for you. I have my scans done in Uniondale and I see the Doctors in NYC. They set up the appointments and everything for you. I know getting the diagnosis and scans at the beginning is nervv racking but you have nothing to lose by call them up and making an appointment there. I think my email is with my profile if you want to contact me. Try to stay positive (easier said than done) I have stage 3b melanoma and so far so good. I am NED.

Ellenb626

I live in Syracuse and travel to MSK! All the name s are good, just make the call. I have received excellent care!
Bill

I live in Syracuse and travel to MSK! All the name s are good, just make the call. I have received excellent care!
Bill

Good morning, DT,
I live in Atlanta but was treated at MSK. My onc is Wolchock and surgeon was Dr. Coit. I was 3a with two positive nodes in my left groin. After the diagnosis, I had a PET scan which was clear . I elected to haven complete lymph node dissection, although many at my stage opted for ultra-sound monitoring. The only other treatment I had was a phaseI dendritic cell study. I had scans every 3 months for the first 2 years which went to every 6 months, then annually. My last scan was in 2018. I’m just about 10 years NED. Ipi, etc. we’re not available for 3a then, but would have taken it if offered. There’s a lot to digest but I will tell say you can’t go wrong with MSK or NYU. MSK has an office in Hauppauge Dr. Marghoub is a melanoma specialist and a very good doc. Might be worth a visit if you don’t want to truck into Manhattan. Good luck!

Thank you very much for sharing. I really appreciate it