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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KellieSue's picture
Replies 5
Last reply 12/19/2010 - 7:25am
Replies by: triciad, King, JuleFL, Becky, Terra

I got my last dose of ALT yesterday. Yippeee!!!!

This round has been much easier than the 1st time I did the trial. Cisplatin kicked my butt but the ALT hardly bothered me. Odd.

I did have one day of stupor and agitation after I came home. Apparentley I was very mad about a snow suit and some gloves but don't rmember that! ha

Dr. did say those were common side effects.

Scans on the 27th, hoping for shrinkage and possibly NED status. Would be a great present!

Hope everyone has a wonderful holiday!

Kellie(from Iowa) Stage IV    

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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nicoli's picture
Replies 9
Last reply 12/20/2010 - 10:12am

Hi, looking for anyone using biochemo now or in the past. I am most likely going to start Interferon, IL-2, DTIC and a few other wonderful sounding chemos in the next month or so (University of Colorado recipe).  I'm stage 3 and hoping to stay here.

I already know the common side effects and how difficult this will but am pretty sure I want to do this anyway. So I am looking for POSITIVE, HOPE -INSPIRING responses. Anyone with good experiences? (Funny stories about your biochemo experience especially appreciated!)

Nicki, stage 3b, diagnosed 12/2009, remission 7 months, local recurrance 10/2010

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Rocklove's picture
Replies 14
Last reply 4/13/2011 - 4:09pm

Hi all, I started the Ipilimumab last Friday and within a few days the tumors that are noticable on my right leg have swelled up alot including the leg, the tumors are warm and tender to the touch. 

The tumors in my liver have not bothered me any more than normal.

Is this a side effect that I should not worry about?

I would appreciate any knowledge to cope with this as it has started to keep me awake the last few nights with the pain.


Rocky  (Stage IV Liver Mets)

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nicoli's picture
Replies 4
Last reply 12/17/2010 - 1:42pm

I have a 2 local recurrances after 7 months of remission. My onc spoke with a doctor at the University of Denver Melanoma Clinic who strongly suggests a 12 week course of DTIC plus Cyspblastin plus vinblastine plus IL2 plus Interferon. In the hospital 7 days, 2 weeks at home, repeat 4 times. Maybe radiation after that.  (I may have misspelled some of the chemo)

The plan is to prevent Stage 4 by killing cells before they become tumors.

I have read the posts regarding IL2 but wonder if anyone has done this combination. 


Nicki, Stage3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Noramott's picture
Replies 4
Last reply 12/17/2010 - 10:13am

Hi.  I haven't been here in a long time.  My first husband passed away with Melanoma 7 1/2 years ago.  I have just found out that a friend has to go to a surgeon to have one removed.  Needless to say, he is very upset.  I remembered this site and knew you all could help him.  He hasn't gotten a lot of info.  He knows it has to come off.  What are the questions that he has to ask the dr when they call him to tell him the results.  The derm told him it was suspicious.  The surgeon that read the same report told him it sounded like it is Stage 2.  It has been a long time since my husband went through it and even then, I didn't know what to ask at the beginning.  I didn't find this site till much later.  So please help him. Thank you.

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Phil S's picture
Replies 4
Last reply 12/18/2010 - 12:50pm
Replies by: JakeinNY, jag, Becky

I just wanted to post and tell everyone that my husband had his head MRI and PET/CAT scans yesterday and the results were very positive, as no cancer is appearing on any of these tests.  Just a quick background, my husband was diagnosed with anal melanoma in January 2010, and has completed eight months of interferon.  Since this form of melanoma is rare and often times aggressive, we have been so worried about these scans.  He has recently had a cold and cough that wouldn't resolve and the doctors told us yesterday that he has pneumonia, and I was so happy that it wasn't the cancer.  He is now doing well (on antibiotics) and ready for four more months of interferon.  He has already lost 35 pounds, and our doctors told us that the average weight loss for a man on interferon is 25 lbs, so we need to fatten him up to tackled the next four months. 

Anyway, I am mainly posting to tell everyone that we are always thinking and praying for all of you, our melanoma family. Also, I want to encourage all those who are undergoing interferon to know that so far we are holding those melanoma cells back, something that we didn't think we could do one year ago, when they gave us our grim prognosis.  So Keep Fighting!!  Wishing everyone a Happy Holiday season.  We are so excited to be able to spend this special time of the year with our young children with renewed spirit.    Valerie (Phil's Wife)

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Linda J's picture
Replies 3
Last reply 12/16/2010 - 8:50pm
Replies by: nicoli, Carmon in NM, jag

I'm just wondering if people here have done any natural or homeopathic treatments along with, or instead of conventional therapies.
I'm trying to decide if I should do any vit C infusions. I think I might also get a juicer and try any alkaline diet...any thoughts?
Does anyone have success stories connected to natural or homeopathic treatments?

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Sherron's picture
Replies 2
Last reply 12/17/2010 - 12:13am
Replies by: JenC

How are you and your husband doing.  I have not seen a post from you recently...Just thinking about you both.

Take Care,

Sherron,wife to Jim FOREVER

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Sherron's picture
Replies 0

How are you and your husband doing?  I have not seen you post recently.  I am thinking about you!

Take Care,

Sherron, wife to Jim FOREVER

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jim Breitfeller's picture
Replies 4
Last reply 12/17/2010 - 8:43pm
Replies by: jim Breitfeller, Anonymous, jag

Killing Drug-Resistant Melanoma Requires Combination Therapy

If you are BRAF +, The combination Therapy of BRAF + MEK  may be the best treatment available at the present time.  See the Article below.

I met up Dr. Flaherty in Boston this past week. He is one of the experts on BRAF inhibitors.

Here is his comments on the the news below


Nice meeting you as well.

 Dr. Herlyn’s data is not alone. Many groups have seen and published combination strategies that might take us to the next level beyond BRAF inhibition alone. The challenge is not generating the lab data, but getting in a position where the drugs can be accessed and combined. This has been my focus for the past several years and we are making progress. But not quickly enough.




Killing Drug-Resistant Melanoma Requires Combination Therapy

The researchers see this as further evidence that some cancers must be treated with multiple targeted drugs at the outset of treatment. Their findings are published in the December 14 issue of the journal Cancer Cell.

"The evidence suggests that targeting mutant BRAF can kill cancer cells, but it is not enough by itself to finish off melanoma," said Meenhard Herlyn, D.V.M., D.Sc., director of The Wistar Institute Melanoma Research Center and leader of Wistar's Molecular and Cellular Oncogenesis program. "The good news is that drugs are being developed to work in combination with BRAF inhibitors, which our data clearly shows is our best option if we intend to beat advanced melanoma."

Melanoma is the deadliest, most aggressive form of skin cancer. While surgical treatment of early melanoma leads to 90 percent cure rates, advanced melanoma is notoriously resistant to chemotherapy and has a tendency to metastasize, or spread, throughout the body. According to the World Health Organization, cases of the disease continue to rise, which has helped spur research into therapies such as BRAF inhibitors.

To study how melanoma responds to BRAF inhibitors, the Herlyn lab took melanoma cells with the BRAF mutation and tested them against a variety of anti-mutant BRAF drugs. When exposed to the drugs, the cells died off dramatically only to grow back again. In fact, cells that became resistant to one type of BRAF drug became resistant to all of them, which suggests that the cells were biochemically "rewired" in such a way that they no longer needed BRAF to form tumors.

"Cells are complex machines that work, essentially, through chains of biochemical reactions that we refer to as signaling pathways," said Jessie Villanueva, Ph.D., senior author on the study and staff scientist in the Herlyn laboratory.

"Knocking out mutant BRAF shuts a major pathway down, but if some cells can use an alternate pathway, then they can survive."

To find out which alternate pathways the drug-resistant cells use, Villanueva and her colleagues looked for signs of increased activation among proteins along the pathways BRAF uses, as well as other pathways.

Their hunt turned up two paths that worked together to aid survival. First, they found that resistant cells used a protein similar to BRAF to carry the signal down the chain. Second, they found these cells received an additional boost from the IGF-1 receptor, a protein that sits on the surface of cells and sends signals that prevent cells from being killed. The resistant cells re-route the signal around BRAF by switching to an alternate protein (CRAF or ARAF), which promotes tumor cell growth, while IGF-1R signaling promotes survival of the resistant cells.

Fortunately, there are a number compounds in clinical development that could block signals along both these pathways. So-called MEK inhibitors target a protein along the same pathway as BRAF, and IGF-1 receptor inhibitors (and inhibitors of P13K, a protein that can be activated by the IGF-1 receptor pathway) block the cancer-enabling survival signal. To test these drug combinations in the BRAF-inhibitor resistant cells, the Herlyn laboratory used a tool they developed to simulate the real-world environment of human cells: 3-D melanoma tumor spheroids. Their 3-D tissue cultures allow melanoma cells to grow in all directions, much like a new melanoma tumor would grow after metastasis. As predicted, a combination of these two inhibitors killed BRAF-resistant melanoma cells in the Wistar 3-D model.

Moreover, the Herlyn laboratory confirmed in tissue samples from patients in the PLX4032 trial -- taken both before treatment and after they developed resistance -- that an increased expression of the IGF-1 receptor is associated with resistance to BRAF inhibitors. None of the laboratory-generated cell lines or the post-relapse patient's tumor samples analyzed had new mutations in the BRAF, NRAS, or c-Kit genes.

Additionally, the researchers noted an association between the loss of a tumor suppressor called PTEN, and resistance to BRAF inhibitors in melanoma cell lines. The scientists found that the relapsed tumor of one patient included in the study lost the PTEN gene, even though it was present before treatment. These findings suggest that loss of PTEN could be an additional way that melanoma cells gain resistance to BRAF inhibitors. The Wistar group continues to investigate these and other mechanisms of resistance, as they expect that several will likely arise given the heterogeneous nature of melanoma.

"Tumors are efficient engines of evolution -- they are going to find a way around most treatments, so we want to kill all the malignant cells from the very beginning," said Villanueva. "By targeting both pathways simultaneously you hit these cells with two punches from which they cannot recover."

"If you do this at the outset of treatment, we reason, it will prevent melanoma survival and hopefully improve patient outcomes," Villanueva added.

Support for this study was provided by grants from the National Cancer Institute and the Dr. Miriam and Sheldon G. Adelson Medical Research Foundation.

Wistar co-authors in this study include Adina Vultur, Ph.D.; John T. Lee, Ph.D.; Rajasekharan Somasundaram, Ph.D.; Mizuho Fukunaga-Kalabis, M.D., Ph.D.; Angela K. Cipolla; James E. Hayden; and Ademi E. Santiago-Walker, Ph.D. University of Pennsylvania School of Medicine co-authors include Katherine L. Nathanson, M.D.; Xiaowei Xu, M.D., Ph.D.; Phyllis A. Gimotty, Ph.D.; Bradley Wubbenhorst; Richard Letrero; Kurt D'Andrea; and Anitha Pushparajan. Other authors included Grant A. McArthur, M.B., B.S., Ph.D.; and Damien Kee, MBBS, FRACP, of the Peter MacCallum Cancer Centre in Victoria, Australia; Jeffrey A. Sosman, M.D., and Kimberly Dahlman Brown of the Vanderbilt University Medical Center; and Sylvie Laquerre, Ph.D., of GlaxoSmithKline's division of Oncology Biology in Collegeville, Pa.

Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of ScienceDaily or its staff.


Take care


Jimmy B

Melanoma Missionary

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Anonymous's picture
Replies 15
Last reply 12/17/2010 - 11:51pm

Hi all,


I do not want to put negative thoughts about IPI but I have been reading posts daily. Many people taking IPI seems to have new lesions after taking IPI. Yes maybe these lesions would have shown up anyways with IPI.And yes may these are being caused by "reactions/inflammation" to IPI. I know that this can not be proven "scientifically" but I anyone have any thoughts about IPI and "cause & effect"ofmgetting new lesions after taking IPI. 

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dian in spokane's picture
Replies 12
Last reply 12/19/2010 - 10:56pm

hey.. I would normally think of this as an OFF TOPIC topic, but..the chat room is on topic for some and off for others.

It doesn't get much use anymore, but that's just because of the changes that have gone on with the boards.

But, I see there are hundreds of visitors right now and '10 members' . If I am right, only members can log into the chat room these days, but still, those who are logged in as members can pop in at any time.

Usually, people don't use the chat room here because the see no one listed. There's a spot on the left side of the board that says something like "who's chatting?" that shows a list of people in the chat room, and if no one is in there, then no one comes in. why bother? BUT.. after many years here (I've been coming since 2003) I know that if one goes into the chat room and hangs out there, then new people see your name and come on in (well.. if they are LOGGED IN!)

It is a little used resource with the new boards. But that's a shame, because over the years, the chat room has been a WONDERFUL resource for many people. I've spent many hours there, hours when I was stressed out worrying about scan results, or during treatment. I've chatted with people who were on their computers in their hospital rooms! And I have talked to others from my hospital bed.

It can be very rewarding, being there to talk to someone who is new and scared, and it can be very comforting to chat with others who know how you feel on those nights when you are just ...obsessing and worrying.

I'd like to see people using it more, so that's why I am bringing it up on the main board.

Over the years, there have been different people who just..stuck with it, and hung out in that room, even if they were all alone, for hours at a time. When I first came it was Lynn from Oz..and Charlie and Barth. But many people have done it over the years. Sometimes, there are many of us in there horsing around, and sometimes it's just jokes and celebrity gossip, and sometimes it's someone who is having to figure out how to say goodbye to their kids. But..there's always been someone who did it for weeks at a time. JerryFromFauq was our last guy to hang out there for hours at a time, before his horrible horse accident. And a year, it was Mykka, and before that Barth. Lots of times, these guys just forgot to log off! and you'd go in to talk and they wouldn't even be 'present', but their ghosts would bring people in, and others would come.

I used to do it. Just hang out there for hours while I watched tv or did other things in the evening, but now I travel too much. So regulars..come chat. Just, log in, go to the chat room, then, if you are alone, minimize that window and open another to read the board. Stay logged on while you read the boards. If no one comes in by the time you finish, then just..check on out. It helps for newcomers to see someone's name in that chat window.

My public service topic of the day.



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ValinMtl's picture
Replies 21
Last reply 3/19/2011 - 1:16pm

I have completed my 4th round of the compassionate ipi trial.  Received my scan but have as yet to meet with my doctors although spoke over the telephone to one who was concerned and would be speaking the director of the trial.



Key finding of this study is the signifcant progression of a previously seen left inguinal region 1 cm lymph node in short axis diameter which is currently seen measuring 2.6 cm in short axis diameter.


Follow-up patient with metastic melanoma showing disease progression according to recist criteria with more than 20% increase in size of a left inguinal region lymph node.

Decrease in size of more than 30% of a right external ilac lymph node. Two other non-measurable lymph nodes show also decrease in size.

No newly developed lesions.

I'm was very happy about the 30% decrease on my problem leg but extremely concerned and surprised about the 20% increase on left.  I can actually feel the swelling. I have heard (and praying this is so) that sometimes lymph nodes react to ipi and was wondering if anybody else has had such a reaction.  Would appreciate any comments or thoughts on this.  I'm hoping they don't take me off the treatment since I have had this increase (unless, of course, it is absolutely necessary).  I'll be due for another scan in 12 weeks.

Stressed and worried in Montreal,


Live Laugh Love Nothing is worth more than this day!

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Linda J's picture
Replies 6
Last reply 7/19/2011 - 2:45pm

Currently I am recovering from a ingronial LND and the removal of a large tumor on my hip/buttock. When I had my drains and my staples removed the surgeon took out another small lump in my pubic area. Since the i have had six "pimples" come up near my drain wounds. The surgeon called today to say that the other little lump was MM and she is worried that these other pimples are local reoccurances. I see her and a medical oncologist on Friday.

I need help.
Are there people out there who have survived multiple reoccurances that pop up after surgery? They are all just surface ones - like right at or just under the skin.
What are my options for treatment???
I'm in Canada with princess margaret cancer hospital but should I look for treatment in the states?

Can I make it through this again?

Please please help!

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LynnLuc's picture
Replies 7
Last reply 12/16/2010 - 10:26am

my scans are clear and I am still thyroid is still reacting and now it is no longer “not functioning” but has bounced up to the high side LOL...also seen as good! They took pics of my thighs today and Doc laughed and said I would be famous lol...I said I am blessed...I begin the 2nd Twelve week cycle on Dec 22.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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