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.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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ocelot's picture
Replies 5
Last reply 6/26/2014 - 10:44pm

Hello everyone, 

 

My fiancee was diagnosed yesterday with melanoma. We are still in shock, and trying to make some sense out of it. We;ve been to a dermatologist and have an appointment set up with a melanoma specialist the week after next. I expect that further excision (to increase the margins) and a sentinel lymph node biopsy are in the offing, and then whatever the biopsy indicates will shape what happens after that. 

 

Here is what we know so far, based on the pathology report for what looked like "just a mole" and the other tests that have been done:

Breslow thickness: 1.15 mm

Mitotic rate: 1

Location: behind ear

Depth of penetration of skin: to the point where the epidermis meets the subdermis but not subcutaneous (as far as I can follow pathology-speak)

Primary melanoma completely excised with clear margins, although very narrow  (1 mm hoizontally and 3 mm vertically)

No swelling or symptoms in lymph nodes, chest x-ray, abdominal ultrasound and bloodwork all clear of any abnormalities. 

 

From what I can figure, this looks like Stage 1B to me. However, the dermatologist we spoke to was quite ominous, talking about "spending quality time with your kids", "be grateful for each day you have", and "don't plan anything for the next year". So we are panicking on one hand, and slightly reassured by the high success rate for early cancers on the other. 

For those of you who have been down this road, what would your advice be at this point, in terms of what we should expect or what we should be doing? I realize there are dangers in getting information off the internet, but I also would appreciate any wisdom from this group.

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(Reuters) - A late stage trial testing Bristol-Myers Squibb Co's cancer immunotherapy nivolumab in advanced melanoma patients was halted early after it was determined that the drug was likely to prolong survival, the company said on Tuesday.

The 418-patient Phase III study, called CheckMate -066, was testing nivolumab as an initial, or first line, therapy for patients with advanced melanoma, the deadliest form of skin cancer.

An interim analysis performed by an independent data monitoring committee found evidence of superior overall survival in patients receiving nivolumab compared with those who received the chemotherapy dacarbazine, Bristol said. The committee stopped the study early to allow the dacarbazine patients to switch to the Bristol drug.

Nivolumab belongs to a new class of medicines called PD-1 inhibitors that have generated great excitement for their ability to help the immune system recognize and attack cancer.

Analysts have forecast multibillion-dollar sales for the drugs being developed by several companies once they gain regulatory approval.

"The outcome of CheckMate -066 ... represents the first well-controlled, randomized Phase III trial of an investigational PD-1 checkpoint inhibitor to demonstrate an overall survival benefit," Michael Giordano, Bristol's head of oncology development, said in a statement.

Independent monitors routinely analyze data from blinded trials at various points and can stop a study if a safety problem arises or if the study drug is seen as likely to prove clearly superior to the control medicine

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I saw an article online today, although I am having trouble finding it again. I saw it on yahoo but it was saying some people from MD Anderson tried IPI on pancreatic cancer and it responded very well. My mom died of it 5 years ago and she suffered tremendously so I found this very interesting. Looks like they are really on to something with immunotherapy. This gives me hope since I am taking IPI. Just thought I'd pass it along.

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Brendan's picture
Replies 10
Last reply 6/30/2014 - 6:20am

Hi Everyone,

I have now been stage IV for almost three years (Sep. 2011).  I have read many posts here that have helped  me through some tough times, hopefully my news will help some of you.

I started PD-1 (nivo) in December.  I just had my final scans and, thankfully, I responded.  The target met (right lung) shrunk from 4.6 sq. cm to 0.42 sq. cm (90%) and the smaller met (left lung) is gone.  

Furthermore, today I had my brain MRI and my brain is clear. I had craniotomy #2 one year ago today (June 25) and my brain has been clear since.  

Good luck to you.

Brendan

I also posted this on MIF.

 

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5dives's picture
Replies 3
Last reply 6/27/2014 - 6:23am
Replies by: Bubbles, 5dives

Hello all,

I met my surgeon yesterday and am waiting for surgery for my .96 Breslow, Clark IV WLE / SLNB.  I really liked the surgeon (Godellas at Loyola Medical Center) and felt very comfortable with the entire process. 

The problem: They can't schedule me until August 11th (original biopsy completed on June 3rd) which happens to be my first day of the new school year.  I'm a high school French teacher. 

I am struggling with the scheduling....too far away, would probably have to miss the first two weeks of school (lesion on my leg, probably skin graft) stress, etc.  Friends and family are advising me to try to find another surgeon, maybe at Northwestern Memorial or University of Chicago (which also have more comprehensive cancer centers).  

I am also struggling with the idea of making the change of surgeon, because I did feel so comfortable at Loyola.  My surgeon's exact words were (more or less): 

"Listen, doctors get sued. They really do.  If I felt that this kind of wait would negatively impact your health, I would refer you to another hospital to avoid being sued.  Enjoy your summer. Take a family vacation. Enjoy your family. We'll take care of this in August." 

ACK.  I don't know how I can wait until August, and I don't want to change surgeons, missing the first two weeks of school will be a nightmare. 

I would accept ANY advice or thoughts this group may have.  Would you wait? Or change surgeons?

Best to all of you,

Elaine

 

http://melanomadame.blogspot.com/

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Last time I saw his post, he was having issues with brain mets. Hope and pray everything is ok with him.

All things are possible through God!

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NYKaren's picture
Replies 20
Last reply 7/4/2014 - 2:14pm

Howdy all 

well, nearly 4 years after I first heard the phrase, Thursday I'm going for Merck EA Anti  PD1 at Sloan. 

with failing almost every treatment out there, including gamma knife for brain mets, 2 rounds of Ipi, and both BRAF treatments, I'm finally getting PD1. With the news that Ipi non-responders have a lower response rate, my excitement is tampered but hopeful. I don't get where these IPI successes are, why would they start PD1?  I guess they were partial responders??  If anyone knows, please advise. 

Please wish me luck. 

FYI, I know Dr. Sznol at Yale is starting a trial for brain mets, but he said to me that since I had gamma knife very recently, he advised PD1 ASAP.   So, here I go. 

Karen

Don't Stop Believing

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FYI, I posted this over at MIF, too, figured it was worth cross-posting here.
 
This is good to see, BMS is seeing such superior results for nivo vs. dacarbazine (no kidding, right?) in the Phase III trial that they are closing the trial and allowing the dacarbazine patients to cross-over to the nivo arm.
 
 
Joe
 
 

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I haven't had time to thoroughly study this report yet but it appears to be a very comprehensive review of the molecular pathways. Some of you more technically inclined will proably find it very interesting.

http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=1892&path%5B%5D=2533

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braunerk's picture
Replies 0

Does having Acral version of melanoma mean that you can't be in a PD- 1 trial since acral is different from other forms or does it mean it doesn't work? My melanoma is Acral and I want to try PD-1 as soon as I can but if it is not available I guess I need to rethink my plan.

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/25/2014 - 4:12am
Replies by: Anonymous, BrianP

I just received a phone call from one of my drs.  He just received back information on my tumor and said it had some genetic make up that puts me at a higher risk for recurrance. I don't know what that is yet- I meet with him next week- but now I  am terrified and broken -hearted and afraid this definitely means my 1b will progress.  Thanks for listening.  I just don't know what to do and feel overwhelmed.

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/4/2014 - 10:03pm
Replies by: BrianP, Anonymous, Gene_S, shanemcdonald99

Just came back from an appointment with the local oncologist who administered my chemo (I am a patient at Sloan). He told me that melanoma can possibly be cured at stage 3 by chemo but if it hits stage 4 it is not considered curable. Since the recurrence rate is so high does that just mean that dying is the only option when the scans come back positive?

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dodo's picture
Replies 3
Last reply 6/25/2014 - 5:45pm
Replies by: dodo, joelcairo, tcell

Dear friends, I've just joined the forum. I'm not citizen of USA. I am prescribed to have ipilimubab + pd-1, but unfortunately it is not available in my country. Could anyone advice if I may be aligible in any clinical trials in USA?

Thanks

Dodo

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/24/2014 - 11:50am
Replies by: Janner

moderately atypical nevus with halo immune infiltrate.  eurgh?  I have dealt with atypical nevi before but what is halo immune infiltrate?

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Anonymous's picture
Anonymous
Replies 8
Last reply 6/25/2014 - 1:36pm
Replies by: Anonymous, Scuba Doc, rosa1

Rumor from a reliable source says MK-3475 (pembrolizumab) could be approved as early as mid summer. 

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