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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Anonymous's picture
Anonymous
Replies 2
Last reply 1/9/2014 - 3:11pm
Replies by: Anonymous, Janner

Can anyone speak to the topic of "compassionate use", perhaps using ipi as an example?  In other words, how does it work?  How is announced?  Is there still exclusionary criteria?  Is it confined to certain trial sites?  I'm not looking for predictions on when compassionate use for PD-1 will be available--rather I'm looking for info on what compassionate use might look like if and when it becomes available.  Thanks.

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hdelancey23's picture
Replies 23
Last reply 1/13/2014 - 2:44pm

January 6 2014 at 5:22 am my mom was called home to be an angel. She fought long and hard even in her last days. And now she is finally at peace. I am mad at her doctor because he went to the hospital two weeks earlier because she had a lot of pain in her back. She knew something was wrong and the doctor only did an x ray and said there was nothing there. It was probably just a pulled muscle. Well when she was admitted to the hospital for the last time they did a more invasive ct scan which hey should have done in the first place and found there was a tumor growing into her spine and bone. Thats what was causing so much pain. Would it have made a difference to do radiation on that tumor? I don't know the cancer was taking over by that point. It was in all of her organs and everywhere. In her last days she still wanted to know; what's next? What do we do now. At that point there really was no more options. She decided she wanted to donate her boy to science so even after her death she is wanting to fight this horrible stupid cancer. I pray that they can find out as much as possible from her body and maybe find a cure from her.

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tschmith's picture
Replies 2
Last reply 1/20/2014 - 5:24pm
Replies by: tschmith, KRob

Has anyone had any positive results from Temodar? I am Stage IV.  I had a brain tumor (melanoma) removed in February of 2014.  There is a small nodule in my lung, right hip, and on the L2 vertebrae.  Most, but not all, of the tumor on the L2 was removed in October.  Two infusions of Yervoy resulted in Pituitary gland problems. The Pituitary has since recovered but my doctor does not want to continue with the Yervoy at this time. I am being treated at Johns Hopkins...we are also looking for clincal trials but something has to be done soon, which is why my doctor is considering Temodar.

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Lisa - Aust's picture
Replies 17
Last reply 1/10/2014 - 11:31pm

Hi Everyone,

Just wanted to share our good news and give others hope. My husband Craig started the Merck PD1 trial in Oct 2013 after prolonged success on the BRAF inhibitor trial. The one lymph node in his abdominal region flared up again, so he had to stop the BRAF trial. He had his first set of scans last week since starting the PD1 trial, and the results today were excellent. He had an 80% reduction in the size of his tumour. Although his tumour wasnt very big to begin with, the results are so encouraging, and it is such a relief that he is responding. This drug seems to be doing wonderful things, I hope everyone can have similar positive results.

We are a couple of relieved Aussies tonight.

Good luck to everyone fighting

Lisa

x

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sFELDMAN's picture
Replies 5
Last reply 1/9/2014 - 10:15am
Replies by: Pink, Tina D, BrianP, Mat, SABKLYN

Hi everyone. I am in  immediate need and hope you can help me. I am in immediate need of a PD 1 trial. Does anybody know where any of them are being held I live in Florida but am willing to go and travel anywhere.    I have previously been on Braf/Mek  16 months did well,  then Yervoy....slowed it down but need pD1.   Thanks to all my fellow warriors for your help.  G-D bless

 

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Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.

Thanks.

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Hi all, posting on behalf of my wife.

My wife was diagnosed barely in stage 3.  1.01mm on her leg, 6 cells found during biopsy.  She was not a good canidate for Interferon so we investigated and eventually ended up with the Dabrafenib and Trametinib on prescription.

She has been taking them for about 11 days.  She's had a few side effects, a rash, sickness but nothing extreme.

I am wondering if this is the worst it gets or is there a peak period for side effects or perhaps they just show up at any time.  Keep in mind this is all for a seemingly healthy person.

Thanks.

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bodrum's picture
Replies 19
Last reply 1/10/2014 - 11:18am

In september of 2013 I noticed a change in the color of a birthmark/mole. I sent a picture of it to an oncologist family member who told me that it was probably nothing since it was a birthmark. 

In December, I jokingly showed the color change to my dad who is an orthopedic surgeon... He immediately took me to the hospital and had the birthmark removed.

The surgeon who was removing the mole looked at it and said that it's probably nothing but will check it just to be sure.

Two weeks later the test results came back. They said that it was malignant melanoma. A few days later they did the wide excision and sentinal lymph node removal. One of the lymph nodes came back positive...

Two days later they did the pet scan which was clear.

At first I refused the full lymph node removal since I really don't understand why I should be living with lymphedema when I was just fine before all of this. But I will have the surgery this tuesday...

On new years eve my brother told me that I will probably die within 5 years. (he is an oncologist) He also told me to stop taking vitamins... ( I don't get why)

My dad says there were few cancer cells in the mole but that it had only spread to the lymph node only because the cancer cells were at the hair follicle. He also stated that the lymp node only had micro metastases. 

All these terms seem so foreign to me.  I look at statistics and they all mean nothing at this point. I don't understand what it all means. 

I am 33, I just started my own business this year. I was planning to get married and have kids within a year...  All that is gone now. 

It's time to make new plans... I just wished someone told me the truth about what is awaiting me...

 

 

 

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ecc26's picture
Replies 16
Last reply 1/12/2014 - 1:40pm

Hello,

It's been a while since I've posted but I've got a question or two.

After winning a fight wiht my insurance company about coverage I was denied access to a PD-1 trial in December because the researchers realized during prescreening that I had not tried the BRAF inhibitors yet. Not that it would have mattered- I would have been denied anyway because after successfully treating 7+ mets in my brain last summer with WBR there were 4 new ones found at prescreening- just about a month after a clean scan. Following denial of enterance to the trial I was placed on the BRAF/MEK combo and have been on those drugs for about a month, give or take.

I had a follow up MRI on Friday and my results appointment yesterday locally. Unfortunately the images from my December MRI did not upload into their system so we were not able to make an acurate comparison (and the written report does not give measurements), but based on what I saw on this new scan I very much expect I will be referred back to a center for either SRS or gamma knife. Hopefully they can get the computer guys on it and be able to more acurately compare the scans later this week, but in the mean time...

I know a little about the basic differences between the two methods of targeted radiation, but I guess I'm soliciting opinions about which may be the better choice and other's experiences with this therapy particularly regarding side effects. 

Thanks

 

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Anonymous's picture
Replies 1
Last reply 1/9/2014 - 8:49am
Replies by: Tina D

Ok ladies, kind of an akward question here and it may be that no one has any answers or ideas, but here goes:

I started the BRAF/MEK combo about a month ago and have been on birth control pills for over a decade. Before starting I was told (by about 6 different doctors, nurses and pharmacists) that the new medications would make my birth control less effective and it was imperative that I use a barrier method as backup. OK. Fine.

I started the new meds about the same time as I started a new pack of birth control. I had some minor spotting mid way through the pack which I attributed to the "less effectiveness" but no other issues. Anyone who's ever been on birth control knows one of the perks is very predictable reliable menstuations. I was supposed to have my menstual period this past week and... nada. I've had nothing. I started a new pack this weekend, but I've never not had a period in the almost 20 years I've been on these pills. For those of you thinking I might be pregnant- unless it's an immaculate conception I'm not... trust me. I know exactly how long it's been and if I'm pregnant it's either because some magical baby fairy managed to outsmart biology, or the government is doing more than reading people's e-mails. 

Not sure if anyone out there has had any kind of experience with these drugs and birth control pills, but I thought I'd put it out there just in case.

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Maureen038's picture
Replies 14
Last reply 1/9/2014 - 5:38pm

My husband just had scans from the BMS CA209-004 study of 3mg/kg of yervoy and 1 mg/kg of nivolumbab. There is nothing new and his tumors have shrunk almost 50 percent!!! We are so thrilled, but we are still dealing with the side effect of hemolytic anemia after the third infusion. He has been on steroids for almost a month and while it's been tapered down from 100mg to 30 mg he can't get on the maintaince schedule of nivolumbab until his steroids are stopped. Yesterday, we were at UPMC with Dr. kirkwood and his glucose level went very high so they had to give him insulin twice. We are hoping to get all of this under control soon and he needs to see an endricologist now.

i wanted to post this to give people hope. This is the third trial he has been on, so please don't give up. He had HD interferon and he had the ACT at NIH this summer. The ACT stopped the alarmingly quick growth of lung mets, but unfortunately a few mets kept growing a few mm. Each of the trials have taken a toll on his body though so he is eating very healthy foods, exercising and enjoying each day! You truly learn what is important in life. We wish everyone here the best!!

Maureen

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mikvahnrose's picture
Replies 1
Last reply 1/7/2014 - 9:39am
Replies by: Janner

I got a shave biopsy of a suspicious mole about a month ago. December 2nd

The results came back that it was a Benign Compound Melanocytic Nevus. Read by a dermatopathologist so it makes me feel more confortable that it is not cancerous.

Well i now know that the mole wasnt cancerous, but within a month it has reappeared!!! Not the same size as it was before, it's smaller, but it came back. Is that normal?? Is that a concern that i should get it checked out again?

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Hstevens0072's picture
Replies 8
Last reply 1/9/2014 - 8:50am

I don't usually post but I do read the board.  I want to let you know that I am in the MK 3475 PD1 clinical trial and just had my third set of scans at the end of December.  I am very fortunate, my largest tumor is 82% smaller and the others have resolved.  No new disease.  I haven't had any trouble with side effects.

i know many people read these posts looking for hope so I wanted to share.

Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/6/2014 - 10:33pm
Replies by: POW, BrianP

My 34 year son was diagnosed two years ago

large mole on torso surgically removed with lymph nodes under arm, one of 12 nodes infected

radiation for 6 weeks then 12 months of interferon

july 2013 MRI showed small brain lesion and 3 new tumors on torso and back

radiation of total brain for 4 weeks plus 1 mega boost to exact spot

12 weeks of yervoy

good news brain MRI showed lesion gone

bad news tumors on torso 2mm larger and also on liver and spleen and new tumor on thigh and side torso

next step clinical trial - dr Laos at u of m has already closed his trial so have been recommended us to karmonas cancer at Wayne state

waiting now for appt date

Pat

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Anonymous's picture
Replies 11
Last reply 11/4/2014 - 5:00am

hi ... i'm a Danish guy looking to enter a Bristol Myers Sqiubb phase 3 trial of ipilumimab and/or nivolumab and I was wondering if anyone else in this forum is participating in this trial already and what your observations have been so far - both in terms of tumor effects as well as side effects ... looking forward to your comments !

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