MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

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Expanded Access Program With Nivolumab for Subjects With Histologically Confirmed Stage III (Unresectable) or Stage IV Melanoma Progressing Post Prior Systemic Treatment Containing an Anti_CTLA-4 Monoclonal Antibody

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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OzzieK's picture
Replies 11
Last reply 5/20/2014 - 2:48pm

This board has provided a wealth of information. THANK YOU to all of those that support and educate!

Very brief background: My dad had 4.9mm nodular diagnosed in January, WLE and complete axillary node dissection under left arm (8 of 48 with melanoma). He has had 2 local recurrences since, with the first one removed surgically. The second one is growing on the outside of his WLE scar (from 1st local recurrence) and he has a couple of very small mets in the tissue in the same general area. Organs are clean thus far.

His specialist doc (O'Day from Bevery Hills Cancer Center) started him on Yervoy on Friday and does not believe surgery is necessary/helpful at this time. He wants to see how the mets respond and then, depending on how things go, may continue with the full 4 doses of Yervoy or switch to PD1 expanded access.

My mom spoke with a general surgeon friend and he insists that the mets need to be removed if they can be. Dr. O'Day feels differently and wants us to trust his judgement. We do and understand his reasoning, but can't help but have some doubt about just leaving the mets there indefinitely and risking them growing and spreading further. After all, surgical removed is or used to be best practice right??

Anyone else have a similar experience? Could really used some insight.

Thank you in advance!

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ncdaniel's picture
Replies 1
Last reply 5/20/2014 - 3:09pm
Replies by: Janet Lee

Has anyone had WBR more than once? I know at time this is done but has anyone had experience with a second WBRt?  My wife currently has to small spots 5mm and 7mm plus. Numerous small spots. The current response from medical treatment is wait 4 weeks for new MRI and then plan treatment based on results. This plan makes sense as there is questions on what small spots will do.  My interest is has a second treatment of WBRT had any significant effects. while our med team has not reccomended WBR I am thinking this could be a possibility.  She has already had gamma knife in September followed by WRBt at that time. No issues until last week.



Trust in God - Live one day at a time

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Janet Lee's picture
Replies 4
Last reply 5/20/2014 - 3:26pm
Replies by: Janet Lee, jonakeefe, Jme, BrianP

It's been awhile since I've posted, and not necessarily because "no news is good news." Don's Stage IV Diagnosis was only 16 months ago, out of nowhere and no primary, and what a ride it's been. After brain mets, cyberknife, brain surgery, SRS, and other various complications, his response to Zelboraf was questionable and short-lived (he is V600R, a relatively rare form of the BRAF mutation). Then he had a positive response to IPI according to his doctor (completed last August), but since then has had multiple growths in his abdominal area. Surgery in October and then another surgery last month to remove pelvic-area masses, two rounds of radiation in between for other mets. And these are just the highlights. He's down at least 75 pounds (he could have afforded losing maybe 30 of those 75 pounds) and is quite weak.

He, like so many, has been waiting for the PD1, always missing qualifying for a trial for one reason or another. We were informed yesterday that the PD1 is now available at Mass General (where he is treated) through the EAP program. The only requirement this time is that he cannot start the PD1 until 28 days after his last surgery. We have 1 1/2 weeks more to wait.

In the meantime, his doctor has started him on the Taflinar/MEK combo. Since Don did have something of a response to the Zelboraf about a year ago, his doctors felt this might help in the short-term. First dose was last night. Incidentally, some of you may remember that we had to stage an all-out campaign to get the Zelboraf approved, since he was V600R and not V600E. It took us months. This time, the Taflinar/MEK was also denied, but it only took a week for MGH to appeal it. So I hope this is good news for others who may be BRAF-postive but not with the V600E.

Our granddaughter, Cecilia, is already 5 months old and is quite the charmer! We are really looking forward to a wonderful summer with her.

I continue to be inspired and kept hopeful by most of the people and posts on this forum. My warmest thoughts are with all the Melanoma Warriors and their families. This is quite a war that I never thought we would be waging, but the knowledge and hope gleaned from this website helps keep us focused and positive.

Janet Lee

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aldakota22's picture
Replies 30
Last reply 5/20/2014 - 3:32pm

Results of brain MRI & docs visit not very good from 01/15/14. Told to get affairs in order.Not words anyone really wants to hear who has mel stage 4.Melanoma has traveled to the brain but not as tumors but as mel cells into the cellephane wrapper around it.Meaning WBR would not be of any use cause there will be mel cells in the spinal cord that would only get back in.The thing I am fighting with is the addition of a Mekinist drug with the Tafinlar drug .Dual treatment was just approved this 01/08/14/.Praying that this works.Still have high PMA and faith in healing miracles.Will see Dr Pavlick on 01/29 than brain MRI last week of Feb.Still feel really fine.Major problem is constpation & anything I drink or eat taste really horrible.Force myself to eat.Any ideas of what I should do? Get another opionion or maybe a trial.Appreciate oppions and prayers.We will beat the beast. thanks      aldakota22

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BMS has opened an expanded access protocol for their anti-PD1 drug nivolumab. Details can be found here:

No sites are open yet, but several sites are actively working on opening up this study. Opening a study like this can take some time, with the delay varying considerably from site to site based on their own rules. 

We will provide updates on open sites as soon as we have that information.

The program will be available for patients with Stage IV or unresectable Stage III melanoma, including cutaneous and mucosal melanoma.

Patients must have progressed on Yervoy (ipi) or some other anti-CTLA4 drug. If the patient has a BRAF mutated tumor they must also have progressed on a BRAF inhibitor.

Patients with active brain metastases are excluded. This includes patients with brain mets who are currently in radiation treatment or who are taking steroids following radiation treatment.

The good news is that anti-PD1 therapy will soon be available to more patients. The better news is that we are likely just a few months away from having one or two anti-PD1 drugs approved by the FDA.


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mwcollins's picture
Replies 3
Last reply 5/20/2014 - 5:17pm
Replies by: OzzieK, BrianP, hbecker

So I have been a little quiet lately (and I think Kevin has as well). We have been enjoying NED since his surgery in February doing normal life activities and celebrating children's accomplishments. Reality, however, has come back around and Kevin's 3 month scans are scheduled for tomorrow. Hearing all the warrior stories you all share make me less worried about whatever the results are tomorrow, so thank you all for that. I am so hoping and praying for more NED status, but am ready for anything!

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Rebecky's picture
Replies 11
Last reply 5/20/2014 - 8:39pm
Replies by: Anonymous, Rebecky, Janner, Teochasse

On Melanoma Monday I wanted to check back in here to let you all know what a tremendous gift this community was to me a decade ago when I was diagnosed, particularly between the intial results and receiving the results of my WLE/SNB. Ten years and two beautiful children later, I am forever grateful for the gifts I have received and continue to keep everyone in this community in my thoughts and prayers. Thank you.

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Nadia's picture
Replies 9
Last reply 5/20/2014 - 11:31pm
My husband was enrolled in the BMS ipi/nivo three arm trial, he showed both progression and new growth and was kicked out. When he was unblinded we found out he was on the ipi only arm. He is not eligible for the EAP Mercks trials since he is Braf positive and he never took any Braf drugs yet. He started two days ago to take Dabrafenib.
The plan right now is to let Dabrafenib to do it's magic, for as long as it works, 8 months average, and then go for the antiPD1, hopefully available either as EAP or as standard care for people that failed ipi and Braf meds.
But I do have this thing in mind that really stresses me out. As almost all the stats I read are saying that antiPD1, which as of today is everybody's dream treatment, is only working on 38% of the patients! what if Dave is one of the unlucky ones? Is there a test out there that tells if his melanoma cells are expressing PDL-1 and antiPD1 will work? I'd rather know this sooner rather than after months of unsuccessful treatment, and try to find another line of treatment, like TILs. 
I would only hope that my answer lies on one of the tests that BMS performed on his blood and melanoma tissue they biopsied. I understand why BMS would not make this public information, they obviously don't want people leaving the trials when they find out antiPD1 doesn't work on them. I am not going to bring up any ethical issues I may have. I just want an answer: is there anywhere in US or Canada, heck, even in Europe a lab that would analyze Dave's blood or melanoma tissue and tell us if his melanoma would respond to antiPD1 or not?
Posts: 7
Joined: 24 Jan 2014 23:28

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Aloha all!

I will be at Plum Island for 2 weeks next month if anyone wanted to get together - nope not on the island itself cheeky.  If I remember right I will be in the Orient Point area at the Silver Sands motel.  LMK if anyone is interested.  I will be free in the evenings and weekend in between.  I am going for some training on the island.  Apologies for not posting on the OTBB but no one goes there any more.

I hope to see Carole K there and anyone else.

I get in at 7 AM at JFK and will have to wait until 1PM or so to get a shuttle to Orient Point.  How feasable is it to make a run out to the Sept. 11 memorial museum during that window of time?  I will be arriving on a Sun.



Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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beatricefromPARIS's picture
Replies 1
Last reply 5/21/2014 - 9:08am
Replies by: Tina D

Hello Tina,

A quote from one of your 2012 messages when you had to stop Zel because of uveitis

"My pupil is actually shaped like a sideways heart at the moment... looks rather unusual, haha!"

Did that pupil problem solve in the end and how?

I also had to stop Zel because of uveitis early January. 2 months after stopping, I developped on one side a drooping eyelid and enlarged pupil (reactive but larger than in the other eye). Exams have ruled out serious causes such as problems in the brain which could damage eye nerves.

My ophtalmologists here seem puzzled by this rare occurrence.

Just curious to know what your experience is...

Thanks in advance




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starletwoman2007's picture
Replies 3
Last reply 5/21/2014 - 9:09am
Replies by: ecc26, starletwoman2007

Just been told that my brain mets have got worse and that need wrbt. I am currently on vem only. Just wondered who had had it and been any effects. Also how successful has it been for people?I

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Momrn5's picture
Replies 6
Last reply 5/21/2014 - 9:20am
Replies by: Momrn5, Thandster, G-Samsa, tcell, JerryfromFauq, Anonymous

I am Stage 3a with micromets to the Sentinel node only.  Had scans 5 months ago showed a couple abnormalities.  I had a follow up brain/head MRI and Chest CT yesterday.  The 2 mm and 3 mm nodules in right lung did not grow  and Onc. Told me he feels that they are granulomas and nothing to worry about.  That being said, he wants a follow up CT in 6 months.  The uptake is still " different" on the top of my head, but he said that they feel it's nothing. Possibly an abnormality that resulted from a head injury when I was a kid.  He won't order another MRI for a year.  All blood work including LDH normal.  Now the question....I am thinking of getting my next CT scan locally because of the distance I have to travel. I live in a smallish town in the U. P.   Would people in this group feel OK doing that? Or should I stick with the scans at U of M?   Opinions requested.  Thanks! 

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