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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Brief recap - I had a full, left lymph node dissection in June after reoccurence noted in May, 2011. Primary site was lower, left back in 2006. Initial PET/CT showed highlighted area to muscle in upper left thigh at same time as node detection. Removal of nodes showed 4 of 11 to be positive. Due to area in upper left thigh being positive, I was told I was Stage IV, resected. Within one week of surgery site was infected and I have since been medically packing the area. During this time I have gone for additional opinions.

I have traveled to Johns Hopkins and Sloan Kettering. My staging was noted to be Stage IIIb and Stage IIIc respectively. Johns Hopkins recommends Interferon since I would not be eligible for any trials at this time with no known, measurable disease. I am showing positive for BRAF. Sloan Kettering does not recommend Interferon nor do they use Interferon for any means of treatment at their Institution. Sloan Kettering feels there is not an added benefit with the use of Interferon, statistically, against reoccurrence coupled with the extreme side effects when taking this drug for the year. They would rather me not take Interferon and scan me every 3 months for the first year stating I have an 85% chance of relapse in the first year.

I would love to hear from those that elected to take Interferon and what assisted you in your decision process as well as  hear from those that didn't elect to take Interferon and why not.

Your feedback is much appreciated - I am fairly new to the board, since July, and truly feel the added benefit of being part of such a compassionate group of people, thank you.

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ShellyB's picture
Replies 7
Last reply 8/11/2011 - 11:13am


could do with some help here, was orginally diagnosed with melanoma in 2003 on my left calf and had interferon back then, i was ned for just five years, since then i had recurrences twice on the back left knee, on the left thigh and last year just above my pelvis,all had been surically removed. Just recently i found a spot on my left arm and on the back of my left rib, I was then sent for a PET scan to see if they had melanoma, which they did but there are other spots which some i now can feel, one on my left thigh, also on the back  of my right rib, just below the right of my chest and a spot just above my liver, there is also spots in my right hip.didn't realise one person could get it in so many places, and i feel i'm not getting the help i need, i'm living in Ireland. Til today i was waiting to hear about the Braf trial and if i could get on it, but apparently the trial is now closed, so the only option i'm left with is a drug called Temodal. I'm aware of the Ipilimumab drug but this is not licenced here in ireland and the only way i can get it is to try Temodal for two months and if this fails i can then have the Ipi drug,,just do not understand the system. I was always led to believe that chemo drugs like temodal are not effective on melanoma, so i hope i'm wrong but why have i do go through with this. what is this ipi drug and what kind of results does it have..any info would be grateful





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Replies by: triciad

There has been some talk on the board recently concerning alternative medicines, herbs, dietary supplements, botanicals and other products etc., so I just wanted to post a few websites I have used over the years. If one has time, both websites are good reading. One will also find other areas of interest as well.

American Cancer Society:

Dietary Supplements: How to Know What Is Safe

Also from ACS: Complementary and Alternative Medicine:

Memorial Sloan Kettering:

Herbs, Botanicals & Other Products

This provides a alphabetical or search evidence-based listing of information about herbs, botanicals, supplements, and more.


This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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TracyLee's picture
Replies 3
Last reply 8/10/2011 - 12:17pm

Hi y'all,

First, my deepest sympathy to those who are in such pain over the loss of their loved ones. I lift each of you in my prayers.

I was admitted through the ER last Monday, stayed until Wednesday. Had to have two lung drains, just to get to a stable point until I went to Philly.

I was joking with my family, in the past week, I've had 3 thoracentesis (drain my lungs), 5 chest x-rays, CAT scans of chest and abdomen. Honestly now! And I still had to go BACK to the ER for yet another thoracentesis this past Sunday.

I went to Philly yesterday, and left with BRAF meds in hand. While I was not impressed AT ALL with my original consult up there, yesterday was a very pleasant encounter.  So, my hat is off to the U of Penn staff, and Dr. Schuchter.

Per Dr. Schuchter, since I just completed ipi, and am now doing BRAF, I have a very good shot at a positive response. I'm sure many of the more knowledgeable board posters are well aware of this, but I was not and was happy to hear it!

Praying for those of us in treatments, lifting those who are suffering.


Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Laurie from maine's picture
Replies 1
Last reply 8/9/2011 - 8:57am
Replies by: Phil S

Hi Everyone,

I started Braf clinical trial Vemurafenib last weds.  I am doing this thru Mass General and Doctor Lawrence.  So far no side effects except tired.  Def been STRONGLY warned about all the skin issues that might pop up rashes, skin sensitivity and growing things on my body ugh.  I can tell it is already working as lump in my breast is almost gone already.  I am psyched as we are leaving this weekend to our annual camping trip (cabins so not quite camping) to cooperstown ny and enjoy the peace and quiet it is soo beautiful out there and of course will venture in to town to do the basebal thing :)  perfect timing for me and my kids(in their 20s but still my kids)   and of course being a former bostonian - we are psyched red sox are doing soo well - sorry yankees fans :)

take care everyone, you are all in my prayers

laurie from maine

ps my sister who is currently battling stage 3 breast cancer is doing awesome with her recovery from surgery - been told she is a "rock star" by her doctors she is truly amazing!

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Lisa13's picture
Replies 6
Last reply 8/12/2011 - 12:54pm

Tomorrow is my first day of ipi (yervoy).  I'm a little nervous about potential symptoms, but other than that, I'm hoping and praying that this treatment will work for me. It's my birthday on Saturday, so that has to bring me some kind of luck :)

I have a busy month ahead of me - my birthday, a wedding to go to, moving into a house - all celebratory things which has been keeping my mind very busy through all this nonsense.   As much as I want to have symptoms to feel like this might be working, I hope it doesn't prevent me from enjoying all these wonderful things.

Prayers and Positive Thoughts to you all!


Many impossible things have been accomplished for those who refuse to quit

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DeniseK's picture
Replies 17
Last reply 8/11/2011 - 5:57pm

Hi all!!

I'm going to see my oncologist tomorrow!  Finally after 2 months since diagnosis and surgery!!  Anywho I'm supposing that I'll start my treatments of Interferon soon. 

A few questions about the process.  I heard that I either need a port or a picc.  Do they put this in on the first treatment day or before?  About how long after I see my doctor can I expect to start?  I really want to get this started and get it over with!!  Can anyone tell me the process??  What about tests before?? 

I'll find out tomorrow but I have no patience!  I wanna know before!!



Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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triciad's picture
Replies 8
Last reply 8/10/2011 - 5:53pm

Hi All,

I just got a copy of my path report from my surgery from 7/20.  It says "the mitotic index is 2-5 mitoses/high powered field (20x).  There is extensive tumor necrosis."

I would greatly appreciate it if anyone could translate this for me.  Please tell it to me straight.



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RMcLegal's picture
Replies 1
Last reply 8/8/2011 - 7:41pm
Replies by: MichaelFL

The folks who participate on this board are inspirational.  Though there's been a lot of sad news lately and too many reasons to mourn, the sincere expressions of sympathy renew my faith in the essential goodness of people.

For all you tough melanoma warriors, a salute in the form of some new lyrics to George Thorogood's "Bad To The Bone". 

Best wishes to all.


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jrervin0378's picture
Replies 9
Last reply 7/19/2013 - 8:36pm

Hi!!! I was diagnosed back in 2009 with SSM on my right knee (1.08mm, SNB Neg), and of course been followed regularly ever since.  I had a spot removed the other day on my upper arm that my derm has kind of been watching off and on for some time.  It had grown about 1mm in width, so she wanted to take it off.  It was completely flat, pink, and this sounds odd, but if you were to stretch that skin around it, it would pretty much disappear.  And, it had been there for at least 6 years, if not longer.  Kind of reminded me of a birthmark, or scar.  Anyway, I get to googling and all of that other nutty behavoir, and come up with amelanotic melanoma.  Just curious to see if anyone has had on of these rare mels, and if so, what did it look like.  I'm a hot, freaked out mess right now waiting for the results!!!! Any insight would be great!!!!!!!!!!!:)    Thanks!!    Jenn

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Eileen L's picture
Replies 8
Last reply 8/10/2011 - 2:41pm

Hi folks. I haven't been on the bulletin board very much over the last six months, use to come here quite often when I was first diagnosed Stage IV, which will be four years ago in September! Just had my six month scans last week and my two remaining tumors remain essentially stable. So another six months before my next set of scans. Yahoo!!!

For those of you  who don't know me, I was one of the very fortunate few folks who responded to an early BRAF inhibitor, Nexavar, which is also an anti-angiogenic. Have been on the medication for almost four years now. This drug is no longer used for Melanoma patients since it failed its Phase III trial for mel, but since it is still used for other cancers is available.

Although I don't come to this board much anymore, I am filled with gratitude for all the support I received here when I was first diagnosed. This is an awesome community!

Eileen L



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MariaH's picture
Replies 7
Last reply 8/10/2011 - 7:37am

Dave was scheduled to start IL-2 on Monday, the 15th.  He went to our local hospital after having a "tightness" in his chest and they did a CT scan.  The scan showed significant growth in his lymph nodes in his chest, now pressing on a major vessel.  They called today and are scheduling him to start radiation prior to IL-2 (they worry that the swelling during IL-2 may cause the vessel to be compromised).  IL-2 has been postponed until the 22nd now.  I'm not sure what type of radiation they are doing, as they mentioned maybe 1-2 sessions of high dose.

I hate this damn disease, and my frustration level is through the roof right now...

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awg's picture
Replies 9
Last reply 8/10/2011 - 12:29pm

I am in my last week of Interferon infusions. The side effects have been very mild (in my case) and I am very thankful for that. The one thing I have noticed is that food taste horrible and nothing tastes the same.


Will my taste return once I transition to the 3 shots weekly or is the change to my taste buds here to stay?

I am also interested to see how many of you completed the IV Infusions and decided not to continue with the 3 weekly shots? What made you make this decision?





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MaryBeth and Jeff's picture
Replies 25
Last reply 8/15/2011 - 1:19pm

The love of my life lost his battle with the beast tonight at 0200 Aug 8, 2000.

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aynw's picture
Replies 3
Last reply 8/10/2011 - 2:33pm

I have done a number of searches and have been unable to find any others who have encountered this, but am sure there are.  If so - I'd like to hear from you. 

I started the high dose interferon June 22.  First week labs showed elevated liver function and low neutraphils - both outside of the acceptable range, so oncologist put me on a 1 week break and reduced the dose by half.  I was put on 1 week breaks after 2nd week and 3rd week, again because my neutraphils were too low.  Throughout, I was generally feeling fairly well, considering some of the side effects others have reported.  When I went in to see the oncologist last week he advised that he is terminating the interferon treatment as he doesn't feel it is safe, and that I will get into trouble very quickly once I start the injections.  I was surprised and disappointed...I know many don't complete the year, but I hadn't heard of anyone who wasn't able to get through at least the high dose round.  Has anyone else encountered this?  Are there any other options for me other than wait and watch?

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