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.

Expand/ Collapse Topic
Replies By
View Topic
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)

Login or register to post replies.

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. 

Login or register to post replies.

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

Login or register to post replies.

MomwHorses's picture
Replies 30
Last reply 12/17/2010 - 5:17pm

So as luck would have it, yesterday I decided to wear a short sleeved shirt on a 20 degree day for my appointment with my gynecologist because I wanted to minimize my weight.  As I was washing my hands that morning I noticed a purple spot on my arm - I tried to wash it off.  Then I realized it was not going to wash off.  So I immediately think "skin cancer" since the spot doesn't look like anything I've ever seen before.  Later my gynecologist says the spot "gravely" concerns her and to have it biopsied immediately.  Fortunately I was able to do so today.

However, the dermatologist  wasn't very talkative.  He really doesn't want to say much until the results come in.  But I'm thinking he knows whether it's likely to be cancerous.  Thankfully I did think to ask, "Well if it is cancer, what type would it be?"  To which he replied "Melanoma" and quickly started talking about something else.  So, my questions are - If it is melanoma, how fast does it get to stage 2?  I feel fairly certain of these results since the doctor could identify actually what type it would be by it's appearance..  I looked at my pictures from this summer and the spot was there in July - only smaller.  It measures 6 mm by 10 mm. 

So, can the size determine how likely it is to have progressed?  Can having had the spot for over 5 months mean it's most likely to have advanced if it is melanoma?  Or is more than 5 monhts not so long, and 6 x 10 not so big?

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

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

Login or register to post replies.

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"

Login or register to post replies.

davekarrie's picture
Replies 9
Last reply 12/15/2010 - 10:12pm

Good morning all,

Just a quick update on myself.  Initial tumor 1.5mm, mitotic rate 4, non brisk TIL on center of sternum/chest.  Had the WLE, about a 7 inch scar, and SLNB under both armpits.  1 was positive under left arm, then complete Lymph node disection of 41 nodes.  The drain comes out tomorrow and had stitches out of WLE 2 days ago and healing very well.  PET scans negative so for now NED. Met with oncologist at Mayo clinic and she said there is really no approved treatments for IIIa, but she did recomend Leukine if my insurance would cover it.  I have blue cross/shield.  I will be calling them today, but my question is for all out there who have tried Leukine.  What are side effects, how long is treatment, can it be done from home and any other things that you can tell me.

Thank you so much for any info and god bless and happy holidays.


Live life to the fullest and enjoy each day!

Login or register to post replies.

Tracy Chicago's picture
Replies 4
Last reply 12/15/2010 - 7:38pm
Replies by: Anonymous, Jim in Denver

I have taken a break from visting the board for a while and just wondering what the latest is on BRAF and Ipi? I remember BRAF was showing measurable tumor shrinkage but it only lasts for about 6-9 months and then there is agressive tumor regrowth. Has anyone had a durable response?


And I heard Ipi might get FDA approval but only for stage 4 patients. Is that still true? Has anyone had a durable response from Ipi?


Thanks and best wishes to everyone!

Tracy, 3B, NED

Login or register to post replies.

mifis's picture
Replies 4
Last reply 12/15/2010 - 7:36pm

Hi there,

Some of you may remember me. I was diagnsoed with a melanoma in situon my upper arm in May, had a further excision in June and it came back with atypia at the edges, went for another excision in July which came back still atypical at the edges and was told to "stop worrying about it and get on with my life". Yes, that's a direct quote from the dermatologist! I had a gut feeling not to trust that advice, so went for a 2nd opinion at MSKCC in NYC and had the slides re-read,.Their opinion was that there was still melanoma in situ present so I had a further excision on October 20, much wider, by a different surgeon, and had the slides read twice, inlcuding by the same pathologist at MSKCC. This time it came back with CLEAR MARGINS. Hip hip hooray!

The scar is healing well, about 3" long and quite indented because of the size of the piece of skin that was removed. I went to see the surgeon last Friday for a check-up and he had a quick look at it and we had another long discussion about sunscreen etc. Today, I was checking it out in a mirror (it's hard for me to see because of where it is) and it looks like there's a couple of little dark spots in it. I had my husbnad check it out and he said it looks like  little dark pores, like blackheads, or  little scabs (but there's no roughness), so of course, I am freaking out thinking that the evil thing has come back.

What should I do? Is it possible for it to come back SO soon and would a re-appearnace manifest this way?

Thanks, Jennifer

Login or register to post replies.

killmel's picture
Replies 15
Last reply 12/15/2010 - 1:12pm



I am a newbie here and not sure if I am posting correctly to get some info from MPIPers who are taking or have taken PLX Braf or GSK Braf or IPI compassionate use 

I am  stage 3 unresectable with a few tumors in my leg. First dx 2006. So far, just have had surgeries.

My onc gave me 2 options.

1. Braf inhibitor (Onc says average durable long term response 6-8months) or 

2. IPI compassionate use (Onc says could have severe autoimune side effects, response rate average 20%.)

My onc did mention trials combining Braf & MEK drug willbe coming available. Anyone in a BRAF/MEK combo drug trial?

So here I sit, weighing benefits ve risks of Braf vs IPI. I sincerely would appreciate any feedback.

Thank you so much for taking the time to post a reply.


Login or register to post replies.

Rick W's picture
Replies 7
Last reply 12/15/2010 - 12:26pm


Links to recent MM research  related articles - all from Year 2010


Rick W


International clinical trial tests targeted drug for melanoma


Gene therapy for metastatic melanoma in mice produces complete remission


Melanoma drug shrinks brain metastases in phase I/II study


Melanoma uses body's immune system to spread to lungs


DNA repair capacity identified those at high risk for non-melanoma skin cancer


Study shows patient-specific vaccines for metastatic melanoma may induce durable complete ...


'Co-conspirator' cells could hold key to melanoma prediction, prevention


New targeted therapy for advanced melanoma associated with 80 percent response rate


The evolution of melanoma diagnosis: 25 years beyond the ABCDs


Melanoma rates among minorities in Florida differ from national trends


Professor discovers way to slow the growth of malignant melanoma


Researchers identify key enzyme in melanoma cell development


Tumor target suggests personalized treatment for melanoma


New treatment method safe, effective for advanced melanoma patients


Interleukin-10 a prognostic factor in treatment with autologous melanoma vaccine


U of M study definitively links indoor tanning to melanoma


Indoor tanning beds increase risk of melanoma


Wistar scientists explain the persistence of melanoma through 'dynamic stemness'


Researchers find melanoma not caused by early UVA light exposure


Clinical trial to test whether vaccine can effectively treat melanoma


Late-stage melanoma results in economic burden


The sound of melanoma can help doctors find cancer


Melanoma transcriptome reveals novel genomic alterations not seen before


Melanoma stem cells' evasive talents

Login or register to post replies.