PD1 for resected stage 3 melanoma

Posted By
Rncab218
6/11/2018 2:49pm
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Replies: 7

Hi,

It has been a long time since I was on this site.  WhenI was first diagnosed in May 2009, I was a daily visitor and received so much support here.  I was diagnosed stage 3, no known primary,two positive lymph nodes, wide excision done and 10 months of Leukine.  I was followed closley with scans for five years and last month a nodule appeared close to where others were (left forearm) and was positive for melanoma.  Had a wide excision today and meeting with oncologist at MSK tomorrow to discuss adjuvent treatment with PD1.  Surgeon told me I am eligible for this treatment but not sure if side effects warrant the use as I was NED for nine years and have one positive nodule, PET scan and CT of lung both negative.  Any information or thought would be much appreciated as I cannot decide wheich way to go.  I read so many negatic side effects but don't want to advance to stage 4 and wish I had done somthing to prevent it.

Thanks,

Cindy

In 2016 they only adjuvent treatment available to me at stage 3a was Yevoy. I opted for watching and scanning but progressed 18 months later. I am now on Opdivo/Nivo. If Nivo would have been available at the time as an adjuvent treatment I would have done it. Nivo does not have near the major side effects as Yevoy/IPI. I would talk very serious with your doctor about it. I believe the less tumor burden you have the better the results.

Thank you for sharing your story. As a 2017 dx 3B, it is good to hear a long term survival story that continues on after a return visit.  

You don't know what you will get in side effects. I had next to none. If it gets bad, you quit. (a little bit of treatment may still go a long way, you don't know) Side effects need to be disclosed in full negative potential; that is scary, but not likely to apply to you in full potential.

I think the onc's using PD-1's are watching closely throughout. So you adjust and watch. It's the best time to deal with side effects, when you aren't sick.

I think if you catch up the last year of posts, you will get a better sense of how completely the world has changed since you've been off the board.

I will be on synthroid for life as my thyroid was impacted. But it's just not been a big deal. YMMV.

Thank you for all the information. I am on synthroid as I had a total thuroidectomy for thyroid cancer.  I want to prevent a recurrence but surgeon feels it took nine years to recur so must be a slow growing cancer?

I would, personally, take any treatment options that were offered.   My wife was stage IIC in December 2016 after WLE to remove primary on her leg.   Lymph nodes were clear and PET scans were clear.   In July 2017 she started having dizziness and two brain mets were found.   Craniotomy, Gamma Knife, Immunotherapy and she is currently NED.  

I would not wait for it to come back again before attacking it.   Immunotherapy is showing very durable responses.   I would try to attack it now and try to keep it at bay proactively.

Hi Cindy, 

I hope you have gathered more information since your post.  However, here are some links that may help you should you need them.  This ia a basic primer on current melanoma treatment I put together:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Here are about a zillion reports on adjuvant care in melanoma:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant  

I wish you my best.  Celeste

Hi Cindy,

My situation is somewhat similar to yours. in 2014, I was diagnosed stage 3c. After a lymphandectomy (4/12 positive) and radiation on my right side, I remained NED for 4 years. A months ago, though, I had a recurrence on my left side, and underwent another lymphandectomy (1/14 positive).

My medical oncologist was similarly noncommittal about going forward with Opdivo (I wouldn't be surprised if we have some of the same doctors!). Ultimately, I decided to move forward, and am starting treatment tomorrow.

My thought process went like this... After looking at all the potential side effects, I rationalized that I'm 42 years old and otherwise healthy, so:

* If I DON’T get the immunotherapy and the cancer comes back, I’ll be like, #$$%^@^@^@…

* If I DO get the immunotherapy and the cancer DOESN’T come back, I’ll be like, yay, it worked, and was worth going through the ordeal!

* If I DO get the immunotherapy and the cancer STILL comes back, I’ll be like, well, I did everything within my power at the time – let’s try something else.

Good luck to you!!!

 

Patrick

Anonymous - (6/15/2018 - 8:21pm)

I was diagnosed stage 4 with an unknown primary. I had 42 lymph nodes removed by modified radical neck dissection along with what was originally thought to be a lymph node but was a 1.3 cm tumor instead. Zero lymph nodes come back positive (all negative). The tumor was found by needle biopsy after initial unltrasound showed what was thought to be only a swollen lymph node in the fat layer (near thyroid). Since I had no evidence of other tumors I didn’t qualify for PDL1 or CTLA (yerzoy) adjuvant treatments.

I asked my oncologist (who specializes in melanoma) what are my best chances for disease free survival, and he said ‘do a trial’,  I hoped to get nivolumab but I was blindly assigned into the yerzoy arm and fell out of the trial due to immune toxicity. The yerzoy arm of the trial was pulled within 3 months of me starting the trial.

You have the opportunity for PDL1 treatment without a blinded trial. If I was you I would do the nivolumab treatment and consider myself lucky to have that option. If you have a recurrence down the road and you don’t do the trial, you’ll wish you were able to come back to this time and make the other choice.  I wish you good luck in whatever decision you come to.