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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(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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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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degood's picture
Replies 4
Last reply 6/25/2014 - 4:45pm

Just got home from eye specialist. His opinion is totally diffrerent from the melanoma specialist!! We had finally got some answers and ready to start a clinical trial with ipi and a vaccine. Thought things were finally starting to move. We go to the eye specialist and he checks my husbands eye and now decides it is melanoma after a 3 month wait. We tell him the situfation with the melanoma spreading and that he is to start treatment shortly and his answser is he is abouth to throw a wrench in all of that! Really no further explanation other than info on the placque treatment or removal of the eye.  the eye doc says it has spread from the eye and not from the original melanoma from his back. The melanoma specialist told us that she feels the eye should wait and we need to start treatment for the rest asap. At this point we don't know what to do who to believe and are totally at a loss.  I guess we have to let the doctors fight it out and go from there. All I know is they are wasting time and my husband is getting worse!! Any ideas? Thanks!!

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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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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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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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Camila Navarro's picture
Replies 12
Last reply 6/24/2014 - 11:38pm
 

Hi everyone, I'm Vania's daughter. We're from Brazil, so, I'm really sorry for my bad english.

My mom had a mole in the right leg since ever, and noticed that it changed a little, it got a little bigger and darker. So she went to the dermatologist, that looked and said that it should be taked off, for a biopsy. The biopsy took 3 weeks to be ready, and we got very nervous about it. So, when the result came, it showed that it was a stage IV melanoma. The doctor said that she should pass for a surgery that would take off more tissue from around the mole, and have a biopsy of de sentinela limph. The biopsy came positive, so the doctor recommended another surgery, to take the other limph...

She also had a petscan, that was clean, and I thank God for it!

We are waiting for the results of this surgery, and we're very nervous.

 

I'm researching a lot about this disease and I found this website, that It's like a blessing, cause I saw many people that had a stage IV melanoma and lived for a lot o years.

When I researched about the life expectation, I got in panic...

 

I hope I have good news about the next results...

 

Thank you for your atenttion.

 

Mother have a stage III melanoma

 

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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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aussiewoman's picture
Replies 11
Last reply 6/24/2014 - 3:59pm

Hello. Have you faced this problem? I have stage IV, just diagnosed with 2 lung tumours - a 16mm on a lung lymph node and an 8mm lower in the lung lobe.

They're both theoretically resectable.

Here's the question - do I cut them out ( I LOVE cutting cancer out, it's my #1 favourite thing to do to it!) or embark on the Yervoy path and hope I'm one of the 30% who's tumours slow?

What if I have surgery and more tumours arise elsewhere? Aside from the primary site (conjunctiva) recurring like a mad thing, I also had two tumours in a paraspinal muscle - removed last month.

Ideas? Decision paths? Have you faced the same thing and how did you decide what to do?

Thanks X 1000.

 

 

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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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Charlie S's picture
Replies 15
Last reply 6/24/2014 - 3:49pm

1987 - Lump under my armpit turned out , after surgery and an electron mircrosope to be metastatic melanoma with an unknown primary.  Nothing on my skin anywhere, just showed up inside of me eating up my surgically removed lymph nodes.  Stage III right out of the gate.  Just surgical removal and a "time bomb" diagnosis.  Not if, but when.

1996--Pretty much forgot about the time bomb, but danged if a new lump appeared in and on my chest.  Wow, nine years$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$  Yes, nine years now Stage IV.

The long and short of it is that after all of that and seven more recurrences, having a girlfried die in my arms from the same disease, I now stand before you as a testament to keep moving.

After well over two hundred injections and infusions of many drugs in addition to surgery after surgery; know this:  it is possible to surviive melanoma.

I am pretty much irrelavant here because when first visiting MPIP we were all transistioning to Win 95 from win 3.1 when Jeff created this site.

Anyway, just wanted to throw it in that people DO survive melanoma.

Charlie S Stage 3 1987-----Today Stage IV and alive.

Kiss my ass melanoma.

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/24/2014 - 1:20pm
Replies by: Anonymous, JerryfromFauq

Dear all, tomorrow afternoon I have an appointment at the dermatologist to receive the lab results of three moles that were removed last week. My dermatologist (and I) worry most about one, who, as she indicated looked 'at least very dysplastic'. But only a pathologist can tell. I will not bore you with the history, but in short it boils down to a GP who was reluctant to send me to a dermatologist and a dermatologist who saw no harm in my three 'odd' moles and wished to just follow them (taking pictures and measurements). But the last weeks/months they were really changing and growing quickly. And now I got an appointment with a different dermatologist as the one that I usually see was on vacation. She took one good look and agreed to remove all three the next day. In fact, she seemend unpleasantly surprised that her colleague had not yet removed the moles. 

While waiting for the results to come back, I did some (terrifying!) Google research. Heart breaking stories... In view of the fact that doctors have left me hanging (at least that is what it feels like) for too long, I really do not trust anyone right now.

Therefore my questions: how hard is it for a pathologist to distinguish a dysplastic mole from a melanoma? I read somewhere that it is a sliding scale and that sometimes a melanoma is missed. How realistic is this? Is is advisable to ask a second opinion on pathology? Also, if it is 'just' a dysplastic mole, is it still advisable to take away the extra skin around the mole? And if it indeed is a melanoma, from what thickness onwards would you recommend a sentinel node procedure (I read somewhere as of 0.7 mm others say 1 mm)?

I know that most likely I can find opinions on either topic on this forum in the older posts. But for the moment, I feel a bit overwhelmed and although I am in search of information relating to my situation, I get really scared when confronted with people who are way ahead of me (though the fact that there are indeed long term stage iv survivors also gives me hope!). I would sincerely appreciate your answers. 

Best, 

Doro78

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pasadenagirl's picture
Replies 5
Last reply 6/24/2014 - 11:58am
Replies by: pasadenagirl, Janner, MattF

Good Afternoon,

 

I'm newly dx and just needed help understanind path report.  My Derm said that I should be ok with just a WLE since the thickness is 0.86MM.   It's the should that worries me, I ask if we could have an oncologist give a 2nd opioion on SNB.  She indicated that most insurance companies will not pay for SNB unless MM is 1MM or more.

The following is what my path report indicates.  I would really appreciate feedback, am I just being over the top or should I push for something more then a WLE.

 

Lower Back:  Shave method, Neoplasm of uncertain behavior vs. Melanoma

Gross Description:

1/4 10x8x2 mm 1 Slide.  Micro Description typed by MAK

Diagnois:

Skin (Lower Back Shave Method)

Malignant Melanoma, Invaise, 0.86 MM in thickness, non ulcerated, see comment:

 

Comment:  This is a diffcule case to evaluate.  There is compound melanocytic proliferation with areas showing definite change of benign nevus.  There are large areas composed of cellular nests or atypical melanocytes with mitotic figures within the papillary dermis.  Other lare areas are composed of atypical melanocytes with mitotic figures.  There is apparent maturation.

I favor the diagnosis of nevoid melanoma arising in a compound nevus.  The area of melanoma appears completely excised in the planes of section.  The changes of nevus are present at one lateral margin of the specimen.

Appropriate reexcisionis necessary.

 

 

 

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