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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Ninniditti's picture
Replies 5
Last reply 9/8/2014 - 5:52am
Hi! 
Has someone here had TIL therapy. I have not read about someone having good results from it. I am not sure if I dare to have it. I have done IPI and NIVO with no result. 
 

Inger

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Nik_1986's picture
Replies 4
Last reply 9/8/2014 - 4:29am
Replies by: Nik_1986, JerryfromFauq

Hi,

i have a mole on my right shoulder which I have been meaning to get checked for a very long time due to differences in colour and asymmetry. Today I woke from my afternoon sleep (I suffer from crohns and as a result sleep a lot) and had pain in my shoulder. When I examined the area that was painful I noticed that said mole was inflamed and red with an additional swelling aprox 7cm from said mole that has a small piece of darkened pigment in the middle but does not look like a mole. Both swellings are slightly sore to touch (I take a lot of pain killers including MST so it's hard to gauge the amount of pain) and my whole shoulder to my neck has a dull ache and it feels hot like a mild burning sensation.

i also am taking immunotherapy and methotrexate for my crohns which can increase the chance of developing cancer.

obviously I'm going to the doctor first thing on Monday morning but I was wondering if anyone can share some insight...

many thanks in advance

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Bruce Davis's picture
Replies 4
Last reply 9/7/2014 - 10:40pm

Feel like I'm fortunate to have been on zelboraf for 3 years with minimal side-effects although I seem to be a lot weeker with increased diarrhea lately. CT after CT show no growth in lung nodules after they shrunk by 10 X.

It just seems that people are either changing to different medicine for better results  or that Zelboraf becomes toxic.                                                                                                                                                                                                  

Myquestions are:  1. How long do people survive on Zelboraf?

                              2. What 's the next drug that works when your body has been warn down by Zelboraf?

 

Bruce 

Presently it's "Don't give up."

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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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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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Anonymous's picture
Anonymous
Replies 0
Question: does "no microscopic sattelites were seen and no lymphatic invasion" mea that it's less likely that there is a rogue cell on it's way throughout my body?

 

Also, does the "melanocytes are extending very close" necessarily mean they didn't get it all, or just that there isn't SUFFICIENT clean margin seen?

When you DO get clean margins, are you "cured" pending recurrence?

thanks so much for your help!

 

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INOVA Supposrt Group    Fighting Cancer with a Fork-IAH 2014:

http://www.lifewithcancer.org/ajax_classDateInfo.php?classDateID=13436

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

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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 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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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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