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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5dives's picture
Replies 6
Last reply 9/7/2014 - 11:12am

Hello, 

I'm almost two months post-op for my wle / slnb and I still don't really know if my node is positive. I was told that it was, then that it wasn't, then that it "might be" trace positive. I'm incredibly baffled by the fact that this well-regarded Chicago hospital can't seem to tell me if I have a positive node or not.

Met the medical oncologist this week, who offered me 4 options, based on my "possibly positive" node: 

1. Full groin dissection (he recommended against it) 

2. A year of interferon (he said he could "go either way"with that, but that he wasn't going to push me in that direction)

3. Five years low-dose interferon (never heard of it myself, I guess I need to do some reading)

4. Do nothing

I said I was inclined to do nothing because my node was possibly negative or barely positive. He asked me if I had thought about a second opinion. He said that if it were him or his wife in my situation, he'd go to Boston or New York. 

I'm heading to Memorial Sloan-Kettering (after a PET scan) for a treatment consultation. I guess I'm mostly just venting here. I just can't believe that I can't get a clear answer on my stage. 

I respect that the doctor admits my lab results are "iffy", but I am officially going crazy with worry. 

If anybody has a thought about what I should do, I'm listening. 

 

 

http://melanomadame.blogspot.com/

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Bubbles's picture
Replies 23
Last reply 9/11/2014 - 12:26am

To all of you:

CT's of chest, neck, abdomen and pelvis along with an MRI of the brain were all negative today.

133 months post original melanoma diagnosis in 2003.  53 months Stage IV.  47 months NED.  45 months since start of my Nivolumab (BMS' anti-PD1)  trial in Tampa.  15 months since my last infusion.

I feel incredibly lucky and amazed  and grateful and strange and undeserving...to be here...and to be able to share this news with all of you.  I do so to wish you hope and strength in all your journeys and struggles.

Yours, Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/6/2014 - 9:41am
Replies by: lactansdea, Janner, Anonymous

Hi, hoping someone can translate for me:

 

Large melanocytic lesion with prominent proliferation of nests and single atypical melanocytes along the dermal epidermal junction in a lentiginous patter.  the cells have large atypical nuclei and there is focul upward migration of single melanocytes as well as melanin pigment in the cells.  The papillary dermins shows fibroplasia with an area of regression noted as there is fibrosis, increased number of vessels, scattered inflammation and melanophages.  There is also some invasion of the papillary dermis by nests of atypical melanocytic cells and there is a distinction between the atypical melanocytes inflitrating the papillary dermis and deeper nests of nevus cells which have a benign appearance so this melanoma appaers to have developed in a pre-existent dysplastic nevus.  The melanocytes have somewhat nevoid appearance, but there is a large nucleolus in each cell and lack of maturation with an occasional mitotic figure seen.  The overall appearance there is that of a malignant melanoma developing in a dysplactic nevus, level 3 invasion.  The vertical height is 0.70 mm with no ulceration and focal regression is noted.  The melanocytes are extending very close to one lateral margin of the biopsy so the lesion is not completely excised.  the mitotic index is two mistoses per one mm squared.

 

Thanks!

newbie

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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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ecc26's picture
Replies 4
Last reply 9/7/2014 - 12:04pm
Replies by: arthurjedi007, Cooper, Anonymous, Bubbles

I was on Merk's EAP and got my 5th dose on Wednesday. I've been looking, but I'm wondering, now that it's been approved, how do local oncologists go about getting access and how long does that process take? Does anyone know?

 

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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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Vermont_Donna's picture
Replies 3
Last reply 9/8/2014 - 12:57pm
Replies by: kylez, BrianP, Vermont_Donna

Hello everyone,

  Its been a while and I thought I would update MPIP on how I am doing. I am an 8 year stage 3a (melanoma on lower calf, superficial spreading type) melanoma survivor. I am B-RAF negative. I am currently NED for 3 years 7 months after completing a clinical trial of ipilimumab (3mg/kg). I will have another PET scan this month, just saw my oncologist and did labs (exam and labs all normal) but he wants me to have PET scans every 6 months until I am 5 years NED. I'm ok with that!

  I have done the following treatments: 11 months of low dose interferon injection (I was unable to tolerate the high dose after having two of them), 7 months of leukine injections, 5.5 weeks of radiation to my lower right leg, an isolated limb PERFUSION at Mass General, 6 weeks of radiation, and then finally a clinical trial of Ipi. yes my melanoma came back after every treatment except for ipi. I do not feel that any of my treatments were a "waste of time", I feel that every treeatment "bought" me more time until the ipi worked, and who knows what cumulative effect there may be?

 I have moderate right leg lymphadema and wear a JOBST custom compression garment during waking hours, a Solaris night time compression garment, and I also have a Flexi-touch lymphadema pump that I do most nights (takes an hour). As I have below the knee edema also on my left leg due to cardiac meds that I take (I also had a heart attack two years ago, unlreated to cancer), I wear a double legged pantyhose style compression garment. Hotter than heck in the summer and not the best fashion statement, BUT it is a real conversation starter when I wear shorts or capris! I just naturally do on the spot education about skin cancer. I have alot of posto

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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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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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Happy_girl's picture
Replies 6
Last reply 9/8/2014 - 4:28pm

I just wanted to share here because I know so many of you have experienced the same emotion.... 

I had micromets in my sentinal node.  It was actually missed by the first pathologist.  So because of that, I  just had the clnd and heard that 34 nodes were removed and ALL were clear!!!! Yay!!!

I was just excited and wanted to share!heart

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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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meghanod1's picture
Replies 2
Last reply 9/6/2014 - 9:46am
Replies by: snbsmith1, RJoeyB

My brother is in treatment for stage 4, recently experienced mixed response to AntiPD1, now on to TIL therapy at the NIH. He's having a tumor excised next week and then will have to wait a few weeks whils his TILs hopefully grow. Unfortunately he is also experiencing a lot of pain from a cluster of tumors that are not operable at this time. He's looking into options to manage his pain and wondering what experiences anyone has had with: 

- General pain management strategies -- in addition to narcotics including Lyrica, MS Contin and Dilaudid we are consulting with pain management team to look at nerve blocks and other options. Also trying accupuncture

- TIL treatment while on narcotics or other treatment for pain management (particularly since he's in a waiting period for TIL therapy to start)

- Options people have used to treat a specific troublesome tumor -- radiation therapy, someone else mentioned injections of  IL-2, others? 

- Anyone with experience going for a second round of Zelboraf to shrink a troublesome tumor? 

Any and all thoughts on these questions much appreciated! 

Thanks,

Meg

 

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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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Tim--MRF's picture
Replies 18
Last reply 9/11/2014 - 2:23pm

The FDA has approved Merck's PD1 drug, pembrolizumab, for use in patients with metastatic or unresectable melanoma.

The drug, which will be sold under the name Keytruda, was approved based on a trail of 173 patients. 24% had tumor shrinkage and most of those patients continued to respond after 8.5 months. This is by far the best response rate of any melanoma drug currently approved.

The drug is approved for patients who have already been treated with ipi and, for those whose tumor has the BRAF mutation, with a BRAF inhibitor.

Tim--MRF

 

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