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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jeandmike99's picture
Replies 1
Last reply 9/6/2014 - 9:31am
Replies by: Bubbles

I am new to this and was wondering if anyone has had melanoma in the stomach/intestines.  My husband was recently diagnosed and has had 4 treatments of ipi (Yervoy).  The tumor did not shrink, in fact it may have gotten larger.  The tumor is NOT Braf and we do not know what the mutation is.  Now he is receiving the new Merck drug pembrolizmab or MK-2437 ??  Not sure if that is the right number combo.  I can find very little information and wondered if anyone was currently receiving this pembro and was also not Braf positive and what results they are having.  Also he seems to run a temperature all the time so he is pretty uncomfortable.  I know that is because if is in the gut but wondering how other folks are coping with this.  Any information would be helpful.  Thanks so much and God Bless.

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Johngifford's picture
Replies 7
Last reply 9/5/2014 - 7:52pm

Went to optometrist had images from two years ago when I visited him last month he said he found something that had grown significantly in the two years probably choroidal melanoma. so I went to my primary doctor Dr. Bailey's office in Ventura got referral for retina specialist Dr. Hung at Seaview medical Center nice doctor she agreed with diagnosis and wanted to send me to UCLA the closest and really only ophthalmolic oncology center in our area. so back to my primary doctor to get referral from my blue shield HMO, so their reply came back last Friday, need to be seen inside our network, and they referred me back to Seaview. Who had already told me I need to go somewhere else. And that my tumor is stable, which is not true. And I do not know where they got that from. I am frustrated, and I feel like too much time is going by. I don't know how to handle this Hmo Any response would be appreciated thank you John

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Squash's picture
Replies 5
Last reply 9/5/2014 - 5:15pm
Replies by: SABKLYN, Janner, Squash, Momrn5

Hi

I recently found out via ultrasound that two sentinel nodes that I have been monitoring are now malignant with a 5mm and a 6mm growth respectively.

The doctor wants to do a full groin dissection but after reading everything and considering QOL issues I have opted against his advice and decided just to have those two nodes taken out.

Has anyone else been in that situation and done the same thing?

I have decided to try and mop up any existing melanoma undedected by ultrasound using alternative therapies.

I have cleaned up diet diet getting rid of all sugar, white flour, fried foods , red meat and dairy.

I started taking Avemar ie fermented wheat germ extract which according to some research is very good for melanoma and also beta glucens, IP6 , COenzymeQ10, green tea extract, tumeric,organic phyto greens, selenium and I am using a zapper for electrotherapy threatment.

Has anyone had success with these therapies?

 

 

 

 

 

 

 

 

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jualonso's picture
Replies 2
Last reply 9/5/2014 - 2:39pm
Replies by: BrianP, Tim--MRF

Hi folks,

Some of you know that few days ago i failed on BRAF inh. And now im on the decision way.  A new meat appeared in my lung, a very small one SUV 5.1 but all others, including my armpit nodule, are not in PET. As far as i know, a new met always means progression, so i have to change the treatment. My onc. Wanted to stop pills but finallywe decided to continue, at least till i decide what to do. IPI is the most clear option but new Trials are going to come out in a little time in Spain and i want to see if something more interesting could be on them. May be a Combo pembro and ipi or something like that. Now my Onc. Wants to wait 1.5 month to see everything with more perpective. But as you know after Fail Braf the tumor could become more agressive and everyday counts. I want to wait just 15 max for trials information and start IPI inmediatly. Well, thanks for your pieces of advice in this difficult moment.

 

Juan

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 0

For all my Melahomies, today I received a message from Jill (Sizemore) Judd fabout a research company that was calling for Eric. Eric did a research study before he passed away and they gave him $150 for participating. This new study is paying $225 for your participation. I know how helpful that can be when you are not working or have medical bills piled up. I asked them if I could share their information and they said yes. They need many participants for phone and possibly web surveys. Here are the requirements: You must be Stage 4 with Melanoma and currently undergoing treatment. Contact 1-888-392-5000 and ask for Raina or Nancy. Or you can call Nancy direct at 212-401-7904. Study will begin next week or the week after. Good Luck! Please feel free to share this information. I talked with them and they want people that have taken a Anti-BRAF targeted chemo.

I'm me, not a statistic. Praying to not be one for years yet.

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eturner's picture
Replies 2
Last reply 9/5/2014 - 12:20pm
Replies by: arthurjedi007, jualonso

Hi everyone,

My husband went to the dr on Tuesday and  we now know that the Braf combo drug has stopped working... While on the Braf drug his bone mets did not disappear they just stopped growing and his pain stopped during this time as well.... On the MRI this week it showed his L5 has a burst fracture and a large met in his hip area (radiation starts today on that) next week he will begin Ipi. My questions are he had many many bone mets to his spine, hip and pelvis as well as a deep femur met, and some on his skull, Is Ipi a good med for many bone mets and since the mets never went away after taking the Braf drug will they become active once again? Just looking for others experiences and advice. It means so much getting your advice.

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arthurjedi007's picture
Replies 9
Last reply 9/5/2014 - 11:28am

I'm trying to decide whether I should have surgery or radiation or maybe both. Any thoughts would be appreciated.

I have 3 tumors in my skull or calvarium as the report says. The largest is growing and pressing on the outer layer of my brain and displacing it. It is 3.65 cm x 2.3 cm x 2.8 cm if I read this report right. There is also a lump on my head there that went down a lot with the PD1 then increased at the time of the MRI and is now slowly going back down some. It is in the posterior parietal bone to the right of the midline.

The 2nd tumor is 3 cm but is less expansile than it was in Feb. It is in the left frontal bone along the high convexity.

The 3rd is somewhat less expansile than it was in Feb but does appear to involve the underlying dura. It is in the high left parietal. Doesn't say its size.

So the Drs were talking radiation for the 1st one but now maybe surgery instead. With pd1 for the other 2.

I also have a couple dozen other tumors but these are the only ones in my head that I know of. They will be doing radiation again to my spine soon except this is further down where they haven't done before (t12 and l2).

If they do surgery I was wondering what that would be like? What would this plate they mentioned be like? How long would it take to recover from the surgery? Would it be done between the 3 week PD1 cycle or would I miss some PD1? What am I not asking that I should be cause I just don't know what to ask?

Thanks for any thoughts on this.

Artie

 

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Frannie55's picture
Replies 2
Last reply 9/5/2014 - 10:34am
Replies by: Tim--MRF, Bubbles

It's been quite a while since I've checked in. I seem to remember someone having lists of resources for financial help, nutrition, and a bunch of other stuff. Does anyone know where I can find it? Thanks all.

Believe that you can or believe that you can't. Either way, you are right. - H. Ford

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I posted the following appeal on Facebook this morning....sharing here in the hopes that others might do the same -- either share my appeal or create your own....My prayers include all those who are still in the fight!

Thank you!

Lana

 

My appeal, as the Mom of a heroic, 30 year old metastatic melanoma warrior who tragically lost his battle 4 weeks ago: 
If you’re planning to contribute to the Stand Up 2 Cancer fund drive tonight, and are not already committed to donating to another type of cancer, please consider instead, donating to the MELANOMA RESEARCH FOUNDATION (4 Stars on Charity Navigator - highest rating). Stand Up 2 Cancer is definitely a worthwhile generic research funding drive, but I couldn't find a way to designate my dollars to melanoma research specifically.
http://www.melanoma.org/

Melanoma research is grossly underfunded. Yes, great strides have been made with the new immunotherapy drugs, but they are far from a cure and still do not help the majority of metastatic melanoma warriors. 
Your donation is greatly needed for the melanoma warriors still in the fight and those not yet diagnosed!
Some facts, impersonal, but compelling: 
--Every hour of every day someone dies from melanoma.
--It is estimated that there will be 77,000 melanoma diagnoses 
and nearly 10,000 deaths in 2014.
--Melanoma is one of the fastest growing cancers in the U.S. and 
worldwide.
--Melanoma does not discriminate by age, gender or race. Everyone 
is at risk.
--Melanoma is the leading cause of cancer death in women ages 25-
30 and the second leading cause of cancer death in women ages 
30-35.
--In ages 15-29, melanoma is the second most common cancer.
--The incidence of people under 30 developing melanoma is 
increasing faster than any other demographic group, soaring by 
50% in women since 1980.
--Melanoma is not just a skin cancer. It can develop anywhere 
on the body – eyes, scalp, nails, feet, mouth, etc. (My son’s primary location was never found).
--The most dangerous aspect of melanoma is its ability, in later stages, to spread – most often to the liver, lungs and brain.

Please share...if for nothing more than to educate!

The Melanoma Research Foundation (MRF) is leading the melanoma...
MELANOMA.ORG
 

 

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tschmith's picture
Replies 14
Last reply 9/5/2014 - 2:54am
MattF's picture
Replies 5
Last reply 9/5/2014 - 2:37am

I dont know when or how but now I'm a little confused on the Ipi progression....

Isn't it that the yervoy itself works late? or the side effects come late etc?

I'm on my 2nd infusion and my visible palpable tumors in soft tissue areas are smaller.....just not looking for false hope lol.

Matt

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/4/2014 - 7:52pm
Replies by: JoshF, Anonymous

I heard University of Chicago just got Dr Jason Luke from Dana Farber under Dr Steve Hodi, which is great because Dr Gajewski at U of Chicago travels constantly. 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/4/2014 - 6:35pm
Replies by: Anonymous, Janner

I just received the call that I have malignant melanoma.  I'm awaiting the pathology report by email.  The doc said it was stage 3 - but i don't know what classification system was used.  She said it was not thick and that i'd need WLE and i'd likely be good to go.  Apparently the report said the cells were close to the border of the excision, and as such, another excision was recommended.  Can anyone shed some light?

thanks.

newbie

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Anonymous's picture
Replies 2
Last reply 9/4/2014 - 10:37am
Replies by: Ginger8888, Anonymous

By Lynne Adkins

PHILADELPHIA (CBS) — Pilots and cabin crew have a new worry – skin cancer.

Working on an airplane puts you at high risk of getting melanoma, according to a new study in the Journal of the American Medical Association Dermatology because of the exposure to higher levels of UV radiation.

Dr. Jeffery Farma, Co-Director of the Cutaneous Oncology Program at Fox Chase Cancer Center.

“Pilots and crew members are at about double the risk of having melanoma over the general population, which is interesting,” says Dr. Jeffery Farma, Co-Director of the Cutaneous Oncology Program at Fox Chase Cancer Center. “This is an occupational hazard potentially that puts them at an increased risk just from where they’re working.”

He suggests they pay attention to any changes in the skin and see a dermatologist annually.

The study didn’t mention frequent fliers, but Dr. Farma says they should be on alert as well.

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