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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WendyD.'s picture
Replies 5
Last reply 12/31/2013 - 3:50pm
Replies by: Anonymous, WendyD., BrianP, Janner

I have to admit once I was diagnosed with melanoma I did what most of us did. I Googled everything I could on melanoma. I wanted to know what I was facing. Well, during all of the research I got confused on something. How can doctors/pathologists stage someone a stage T1a melanoma when there usually isn't a SNB done for thin lesions? How would anyone truly know that someone is a T1a without knowing if the melanoma has spread to nearby lympnodes? Another thing I would like to know is what are the chances of a thin lesion spreading that had no mitosis and no ucleration and was less than 1mm thick? If someone has links to web pages stating percentages of chance of spread I would definitely like to see it. It seems everything I have read so far says it can only truly be a T1a if it hasn't spread, which goes back to how do we truly know if the SNB was never done? Ok sorry for all the questions, but I really want to know this stuff.

In God I Trustsmiley!

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Pink's picture
Replies 3
Last reply 12/31/2013 - 1:49pm
Replies by: POW, Pink

I had to request a new pass word which is only good for 24 hrs, how do I change my password?

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mitchwendy's picture
Replies 2
Last reply 12/31/2013 - 10:40am
Replies by: mitchwendy, sbrooks90

If you had this done, how long did you wait before returning to exercise, specifically running?

They say "return to normal activities", but would that include running? I had 5 nodes removed (all free! ) and I did do 20 minutes with walk breaks yesterday and did not have any new swelling or increased pain....

Just curious as to what others experiences were....



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What You Need to Know About Interleukin-2 for Metastatic Melanoma.

"Melanoma." National Comprehensive Cancer Network. V.1.2009. 27 January 2009.

"Proleukin Prescribing Information." Novartis Pharmaceuticals Corp. 27 January 2009.

Smith FO, Downey SG, Klapper JA, et al. Treatment of metastatic melanoma using interleukin-2 alone or in conjunction with vaccines. Clin Cancer Res 2008 14:5610-5618. 27 January 2009.

This overview will arm you with the critical information you need to understand how it works, its effectiveness and its side effects.

Other Names (United States)
Proleukin, aldesleukin


IL-2 was approved by the Food and Drug Administration for the treatment of metastatic melanoma in 1998.

IL-2 is different than a chemotherapy drug -- it is actually a natural part of your body's immune system. It is a type of messenger molecule called a "cytokine" that is secreted from certain cells to alert other cells about an infectious invader. At least 15 different kinds of interleukins have been discovered since the 1970s: IL-2 is known to specifically stimulate the growth and maturation of two kinds of white blood cells, called "T and B lymphocytes." The IL-2 used to treat metastatic melanoma doesn't come from the body but rather is mass produced, using the techniques of genetic engineering. It has the same properties as the natural version, but it has a slightly different name, aldesleukin.

Evidence for the Effectiveness of Interleukin-2

In the studies that led to approval, 6% of selected patients (those in good physical and mental condition) with metastatic melanoma had a complete response to high-dose IL-2, and 10% had a partial response. A complete response is defined as a long-lasting (10+ years and counting) elimination of the disease, although it is not technically a "cure." Regardless of the terminology, it is the only drug available that even has the possibility of such a profoundly positive and lengthy effect. Responses were observed in patients with a variety of metastases, including in the lung, liver, lymph nodes, soft tissue, adrenal glands and subcutaneous (deep) layers of the skin. IL-2, however, has not previously been recommended for patients with existing brain metastases.

Many clinical trials have been conducted (and are still being conducted) in an attempt to increase the response rates of IL-2 by combining it with other medicines. For example, a study demonstrated higher response rates when IL-2 was given in combination with a vaccine (22%) compared to IL-2 alone (13%). Unfortunately, many attempts to combine IL-2 with various chemotherapy drugs (cisplatin, vinblastine, dacarbazine and others) -- an approach called "biochemotherapy" -- as well as with other drugs (interferon-alfa2b, etc), have thus far shown no significant improvement in the statistic that really counts: survival time.

Use of Interleukin-2

IL-2 is given by a 15-minute IV infusion every 8 hours for 5 days. Each treatment course consists of two 5-day treatment cycles separated by a 9-day rest period, and multiple courses are the norm. You will typically be imaged about a month after finishing your first treatment. If you are responding, you'll likely be offered a second course of treatment for 6 to 12 weeks after finishing the first course. To be eligible for IL-2 treatment, you must be in relatively good physical condition, with good heart, lung, liver and kidney function.

Potential Side Effects

IL-2 has frequent, often serious and sometimes fatal side effects. It should be given in a hospital under the supervision of a qualified physician experienced in the use of anticancer agents. An intensive care facility and specialists skilled in cardiopulmonary or intensive care medicine must be available. The rate of drug-related deaths in clinical trials of metastatic melanoma patients who received IL-2 was 2%.

Many of the side effects are due to "capillary leak," which begins immediately after treatment is started. Capillary leak results in the leakage of proteins out of blood that then causes a decrease in blood pressure. The most common side effects are as follows:

    nausea, vomiting, diarrhea, loss of appetite
    weakness and fatigue
    flu-like symptoms (fever, chills, headache and muscle aches)
    low blood pressure
    general pain, chest pain (angina)
    breathing problems due to fluid in the lungs
    weight gain, fluid retention
    mental effects (paranoia, hallucinations, insomnia)
    itching, peeling skin
    anemia (low red blood cell count)
    low platelet count (increasing the risk of bleeding)
    low white blood cell count
    kidney damage
    mouth sores

These side effects are rarer but have been reported in some people taking IL-2:

    abnormal heart rhythm, heart attack
    respiratory failure
    severe infections
    gastrointestinal bleeding
    thyroid problems
    liver problems
    severe dizziness, fainting


IL-2 can make the side effects of other drugs and diseases much worse, so tell your doctor if you have:

    kidney problems
    heart disease
    liver disease
    lung disease
    a seizure disorder
    thyroid disorder
    any allergies
    any immune disorders

Also let your doctor know about any over-the-counter or prescription medications you use, especially corticosteroids, indomethacin, blood pressure drugs, antidepressants, anti-anxiety drugs or other anticancer medications. Do not start or stop any medicine without doctor approval.



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

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natasha's picture
Replies 5
Last reply 12/31/2013 - 6:07am
Replies by: natasha, Anonymous, JC, WendyD.

   Dear friends ! I wish you a Merry Christmas ,  good health and happiness !

  All the best for all of you and your families !

 I hope new year will bring only good news only  for everyone!



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Patina's picture
Replies 8
Last reply 12/31/2013 - 2:06am


Does anyone here know or have they experinced a reduction in visible tumors within weeks of taking Yervoy?  I can't find anything on this and wonder if anyone knows how good a sign this might be or not...

My Mother was diagnosed with stage IV and later brain mets.  She had gamma knife radiation for lesions on her brain and 4 days later had her first infusion of Yervoy. 

She had a very large tumor on her neck and 18 small to large tumors on her scalp.  There were 8 small lesions on her brain.

Two weeks later the tumor on her neck has shrunk by 50% and the tumors on her head are now hard compared to what they had been.  She still have 3 more treatments of Yervoy and I'm wondering how positive this might be or not...  

She goes in 3 weeks to get a MRI of her brain and we might know what is happening with her scalp, but its encouraging that the tumor on her neck is much smaller.





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hdelancey23's picture
Replies 10
Last reply 12/30/2013 - 11:23pm

I am up visiting my mom for Christmas. And it has been a great time. My mom is doing as well as can be expected. The morphine is really helping in managing her pain at home. She does okay through the day but it is the mornings that are the worst on her. It is hard for her to get up out of bed and very painful for her. I guess it is from the morphine wearing off through the night and it seems like her body is very very stiff. She has consultation for WBR next week and will start next week as well. I am nervous to see how she takes a second dose of it. I am just praying that it might buy some more time to get into the pd1 trials. At this point for me any more Tim that we can get is very precious. She is such a fighter and so strong. Her doctors told her last December that she only had three to six months and now here we are a year later. To all those that are fighting this horrible disease and to family members that are watching their loved ones struggle you can't always go by what the doctors say. Keep fighting and keep hoping.

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BrianP's picture
Replies 1
Last reply 12/30/2013 - 9:54pm
Replies by: BrianP

A small subset of patients with supposedly nongenetically driven melanomas respond to molecularly targeted treatment with an MEK inhibitor, according to recent findings released today.

Two novel genetic fusions involving BRAF – PAPSS1-BRAF and TRIM24-BRAF – were present in 2 of 24 (8%) of pan-negative melanoma samples tested. Both BRAF fusions activate the MAPK signaling pathway, and tumors found harboring either genetic fusion were more sensitive to treatment with trametinib than with the BRAF inhibitor vemurafenib, reported Dr. Jeffrey A. Sosman, professor of medicine, director of the melanoma and tumor immunotherapy program, and co-leader of the VICC signal transduction and cell proliferation research program of the Vanderbilt-Ingram Cancer Center in Nashville, Tenn., and his associates.

“About 35% of melanomas are, as of today, considered pan negative, which means they are devoid of any previously known driver mutations in the genes BRAF, NRAS, KIT, GNAQ, and GNA11,” Dr. Sosman explained in a press release issued by the American Association of Cancer Research.

“Our data support the idea that pan-negative cancers are not truly pan negative,” he added, noting the results are “important because they suggest that there probably are other, as yet unidentified, molecular changes that make these melanomas susceptible to drugs that are available right now.”

Dr. Sosman and his associates have spent several years assessing pan-negative tumors for any potential genetic anomalies other than those already known that could offer targets for molecularly driven treatment. Their discovery of PAPSS1-BRAF came from examination of a sample from a 27-year-old woman with stage IIIC malignant melanoma involving almost all the axillary lymph nodes. Despite irradiation and experimental and standard immunotherapies, the patient progressed rapidly and died just 11 months after her diagnosis.

Some of you more technical savy folks might find this article interesting.  Just don't ask me to explain it!


The patient’s sample had been genotyped using the, which examines more than 3,000 exons in 182 cancer-related genes and 37 introns and in 14 genes recurrently rearranged in cancer. The assay simultaneously looks for any single nucleotide variants, insertions, deletions, copy number changes, and selected genetic rearrangements.

They found a large genomic deletion in BRAF and a region on chromosome 7 suggesting that two genes were possibly fused together. Subsequent targeted RNA sequencing of complementary DNA identified PAPSS1-BRAF and further studies showed that it activated the MAPK signaling pathway and that this activation was more sensitive to inhibition with a MEK inhibitor than with a BRAF inhibition.

The team then evaluated a further 51 melanoma samples, of which the majority were supposedly pan negative – only eight had BRAF V600 changes and seven had other, non-V600 changes. TRIM24-BRAF was also identified and found to affect the MAPK signalling pathway and be more sensitive to MEK than BRAF inhibition.

The team also analyzed RNA, whole genome, and whole-exome sequencing data from an independent cutaneous dataset available from the Cancer Genome Atlas and found BRAF fusions in two of 49 of pan-negative melanoma cases researchers.

“Collectively, these data suggest that BRAF fusions exist in 4%-8% of pan-negative melanomas,” the researchers reported. “Coupled with the fact that the transforming ability of multiple BRAF fusions has already been established, we believe enough evidence exists to raise awareness that BRAF fusions are present in this ‘pan-negative’ population.”

This could have implications for clinical trials involving therapies that target the MAPK signaling pathway and explain why unexpected clinical responses are sometimes seen with MEK inhibitor therapy. The findings could also help clinicians select patients for MEK-directed therapy.

Dr. Sosman and associates conclude (Clin. Cancer Res. 2013 Dec. 17;19:6696-702): “BRAF fusions represent a new, potentially clinically relevant target in melanomas possibly treatable with kinase inhibitors.”

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WendyD.'s picture
Replies 9
Last reply 12/30/2013 - 2:35pm

I have spoke with Janner about it taking so long for me to receive my WLE since my melanoma diagnosis. First I would like to say that orginally I didn't have my specialists to follow up with after my GP sent my charts over to him. I ended up having to go to another doctor completely which was shocked that no one had followed up considering my diagnosis. Well, the new doc said he would do my WLE himself since he does these kind of things all the time. Plus my melanoma was thin and in an area that I wouldn't have to see a plastic surgeon. Out of curiousity I'm just wanting to know how long each person here had to wait before they performed the WLE on them after their diagnosis? Thanks to all. :)

In God I Trustsmiley!

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PracticeUpdate: In your view, which development that occurred in 2013 in melanoma research could have the most significant impact on clinical practice?

Dr. Kirshner: The reporting of the results of additional clinical trials of antibodies against the programmed death 1 (PD-1) receptor and ligand (PD-L1).

The most striking of these studies was presented at ASCO 2013 and promptly published by Wolchok et al in The New England Journal of Medicine in July.1 Metastatic melanoma patients treated with the combination of ipilimumab and nivolumab had a disease control rate of over 65%! The majority of responses were major and are predicted to be durable.

Additional reports of T-cell checkpoint inhibition presented at ASCO add to the growing body of evidence that inhibitors of CTLA-4, PD-1, and PD-L1 are effective treatments for melanoma, with a number of long-term survivors. Patients progressing on ipilimumab can respond to nivolumab or even to retreatment with the same drug and schedule.

PracticeUpdate: What specific changes have you observed or do you foresee as a result of this development?

Dr. Kirshner: I expect FDA approval of nivolumab in the next year and the approval of even more checkpoint inhibitors in the near future.

PracticeUpdate: Would you put this development into historical perspective for the practicing physician?

Dr. Kirshner: Not too long ago, treatment options for metastatic melanoma were very limited. Responses to chemotherapy are poor, in general, and toxicity can be substantial. Immunotherapy (interferon and IL-2) is toxic, for the most part, but occasional durable responses were seen, usually in patients with more limited disease.

T-cell checkpoint inhibitors have a different mode of action than prior treatments (blocking inhibition activates T cells for more effective immune destruction of the metastases). These are the most active treatments for metastatic melanoma to date, and toxicities are manageable.

PracticeUpdate: Would you sum up in a single sentence why you chose this development as the top story of the past year?

Dr. Kirshner: The development of new T-cell checkpoint inhibitors (specifically anti-PD-1 and anti-PD-L1) not only adds to the armamentarium of treatments for advanced melanoma, but there are reasons to believe that these drugs will be active in a wide range of malignancies that would respond to immunotherapy.


  1. Wolchok JD, Kluger H, Callahan MK, et al. Nivolumab plus ipilimumab in advanced melanoma. N Engl J Med. 2013;369(2):122-133.

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eric w's picture
Replies 28
Last reply 12/28/2013 - 3:19pm
Replies by: Genny, Ali, steelergirl, eric w, POW, gabsound, Anonymous, Gene_S, Janner

Hi all,


My wife was diagnosed with melanoma on her arm 2 years ago. We live in Las Vegas and went to UCLA for the removal of the mole. I forget the number it was but it was ulcerated. It was removed and lymph nodes were clean. she has been getting pet/ct scans over the last two years. On the scans some subcentimeter nodules were noted without growth. This last scan 5 of the nodules hat grown but still subcentimeter....we are going to UCLA next friday and are waiting for mutation results...I have just started to read about treatments but wanted some input...first i need another facility to take my wife for second opinion...luckily we have the means to go where we need....again i live in Las Vegas....


my second is what type of treatment should i be expecting to seems that Yervoy is a good option or IL-2 i think it was....all the rest of her scans have been clean so far....also should we be looking at the PD-1 as well??? sorry for so many questions...scarried out of my mind....


by the way my wife is a beautiful healthy 42 years old.....thanks

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Nicky's picture
Replies 5
Last reply 12/28/2013 - 8:33am

Hi everyone.

Merry Christmas and Happy Holidays.  Well it's now coming up to the end of my 13th year surviving this disease.  After 3 primary melanomas of various depths and types over the 13 years, one spreading to my lymph nodes, 2 radiation treatments and lymphoedema in my right leg, it is so good to be persistently kicking this disease.  I have been clear for quite a few years now.  For all those out there who are battling and going through a difficult time at the moment, please never give up hope.  Try and reduce your stress over the holiday season and enjoy each day you have. Once again and I say this each year, but MPIP got me through some of those dark days and I will never forget that, thank you everyone for making this board a beacon of hope. You can read my patnet under Nicky


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mikvahnrose's picture
Replies 8
Last reply 12/28/2013 - 2:43am

I have had a funny looking mole on my back for (as long as i can remember 3 years) but it is possibly longer. My boyfriend said it never eally changed but always worried me. I got it removed two weeks ago and the derm did say it looked odd but he wasnt too concerned about it. He told me that when looking under the dermascope it didnt have an blue or white halos, color regression, rapid cell movement.. all that was was spotting?? I think thats what he said. Anyways he sent it to the lab (called Mohs-tek biospy prep lab) and about a week and half later got a call from the nurse to tell me everything was fine. It was benign. I was overjoyed to hear the news. I cried to her saying thank you, you don't know how much stress ive been; waiting for the results. That was 3 days ago.

Now i am thinking, they told me it was benign. But what if they misdiagnoThis was the mole.sed it. How common of an occurence is a melanoma misdiagnosed? 

Questions have been running through my head: Should i trust the pathologist? It that company a reputable company? 

I sound crazy but i want an accurate answer, i don't wnat this thought to linger in my mind of "what ifs"

Does this sound justified to get it re-examined or am i just being paranoid. Does it cost anything to ask your derm if they can do a second pathology report on my mole, i don't have insurance so price is a concern. But i am willing to pay the cost if i get an accurate answer. 

Has this happen to anyone? What should i expect or do.

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Anonymous's picture
Replies 6
Last reply 12/28/2013 - 2:35am

I'm anxiously waiting for call back from my onc doc about a node that lit up on scan earlier this week...she didn't know a whole lot when she phoned last night at 10 final report as yet, but at least one node had lit up; she said it's likely in drainage area from lung mass removed by VATS early Sept....

is the standard in these cases (well, I really don't know the case as yet I guess!) resection if at all possible, followed by radiation? I'm not sure a lit up node qualifies me for the ipi/nivo trial...but would definately like this thing (hopefully it's only one) removed...I so so so appreciate everyone's input and support...thanks very much




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ironberg's picture
Replies 5
Last reply 12/28/2013 - 12:41am

I am supposed to make an appointment with a dermatologist ...


what can I expect?


I wasnt told anything except that my Melanoma biopsy wasnt good....



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