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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carol b's picture
Replies 3
Last reply 8/30/2011 - 8:39pm

I had 3 tumors removed under my arm. Now they want to do radiation. Problem is i have had radiation before for breast cancer. Now they question is how serious will it be if thr radiation treatments overlap just a little. I was told it could cause lymphodema and tissue death,, Like a Chance of getting it.. The problem is they give me 2 options. A 5 day high dose radiation or a 20 dose low ratidiation. The 5 day treatment increases my chance of lymphodema and tissue death by 15% and the 20 treatments a 10% chance, now thats added to the 20% chance that i already have of getting lymphodema after surgery.. I have not had any lymphodema after surgery. So bacially i want to know do you think it will be ok to do the 5 day treatment and just take the chance of lymphodema and tissue death.. i have been so lucky so far with no problems. I just need a second opinion on here. I live 3 hours away from treatment. So the 5 day just makes more since to me. just need some answers about the treatment, and opinions as well... thanks in advance for answering...prayers to all on here who are going thru the same thing and even worse things, its a horrible disease.


Stage 4

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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jax2007gxp's picture
Replies 8
Last reply 8/30/2011 - 8:31pm

Hello all,

I've read about patients and caregivers being trained in massage by a lymphedema specialist.  Tonight, I was watching a television program which featured a high-end spa where they perform a "lymphatic massage" technique.  The woman being interviewed explained the benefits of this sort of massage for folks with a weak immune system, but never mentioned people whose lymph nodes had been removed.  Does anyone have experience with this sort of massage? 

On a slightly side note, I'm considering a short getaway prior to my lymphedectomy.  Should I skip massage treatments?  Could massage spread the melanoma???

Looking forward to any thoughts on the subject.


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Long article that discusses c-kit mutations and resistance to treatments.

I would expect similar modes of findings in all of the targeted attacks on different mutations other than just c-kit.  This shows what the medical research is up against in attempting to narrow the attack on each mutation in each type of cancer (even within the different types of c-kit melanoma!).  

The introduction, results and Discussion sections are especially interesting.
Wish I had a better background to understand the details even better.

The article sections are:

Materials and Methods
c-KIT Expression in FDC-P1 Cells
c-KIT Kinase Inhibitory Drugs
Immunofluorescence Assay
Cell Proliferation Assay
Immunoprecipitation and Western Blot Analysis
Structural Analysis
Expression Levels of c-KIT in FDC-P1 Cells
Preliminary Studies with V654A Mutant c-KIT
Effect of the V654A Substitution in Combination with V560G, an Activating Mutation Characteristic of GIST, on Drug Sensitivity
Effect of Kinase Inhibitors on c-KIT Phosphorylation

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

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petie540's picture
Replies 3
Last reply 8/29/2011 - 9:51pm
Replies by: petie540, acyr, Lisa13

Discontinued Temodar in June due to slight increase in size of lung mets. Still subcentimeter. Began a clinical trial with ipi 10mg/kg and GSM-250 fourteen days after each infusion. Nothing dramatic until four days after the third infusion when I developed quite a nasty rash-quite uncomfortable. Started on prednisone 40mg/day and after two days feel much better. One more infusion, then cat/mri on 9/30.Keep you all posted!

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Donna M.'s picture
Replies 1
Last reply 8/29/2011 - 9:45pm
Replies by: BethA

So after a solid week of dressing changes because my picc got wet, I found the DryPro Waterproof PICC Protector by DryCorp.  It's a rubber sleeve that you slip over your arm, and it has a pump that creates a vacuum seal around your PICC.  You can also use it for swimming.  I just tried mine, and it works!  Check it out at

Hope everyone is having a good day!

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Wilfred's picture
Replies 11
Last reply 8/29/2011 - 10:36am

One hundred seven days from the last positive diagnosis, 99 days from the last surgery, and now I have a new melanoma, This is the sixth melanoma on the same ear, five of them in the past 4 years. My friends all tell me that I am an unusual person,  but I don't think this is what they were refering to. How common is this? Should this be happening? Every time the pathologists say that the margins are clear. Pretty soon I won't have anything to hang my hearing aid on.

If you fight, you may lose, If you don’t fight, you will lose.

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JerryfromFauq's picture
Replies 2
Last reply 8/28/2011 - 11:17am
Replies by: Phil S, mombase

KIT as a Therapeutic Target in Metastatic Melanoma
JAMA. 2011 Jun 8;305(22):2327-2334, RD Carvajal, CR Antonescu, JD Wolchok, PB Chapman, R-A Roman, J Teitcher, KS Panageas, KJ Busam, B Chmielowski, J Lutzky, AC Pavlick, A Fusco, L Cane, N Takebe, S Vemula, N Bouvier, BC Bastian, GK Schwartz


In this open-label phase II trial, significant clinical response to imatinib was observed in a subset of patients with metastatic melanoma harboring KIT gene alterations.


OncologySTAT Editorial Team

Melanoma is a disease of biologically distinct subtypes and generally poor prognosis once advanced. A key goal is to identify therapeutic targets that may allow improved treatment and survival. One target of interest is the KIT tyrosine kinase receptor gene. Melanomas arising from acral, mucosal, and chronically sun-damaged (CSD) sites often harbor KIT-activating mutations or amplifications. Tyrosine kinase inhibitors have proved beneficial in other cancers that harbor KIT mutations (gastrointestinal stromal tumors), and there have been reports of response to imatinib (a KIT inhibitor) in patients with KIT-mutant melanoma. In this open-label phase II trial of imatinib in patients with KIT-mutant melanoma, Carvajal et al hypothesized that KIT inhibition would result in an objective clinical response and disease control and that specific KIT alterations would correlate with clinical response.

Adult patients with metastatic melanoma arising from acral, mucosal, or CSD sites were enrolled between April 2007 and April 2010 from six cancer centers in the United States and were eligible if they had an Eastern Cooperative Oncology Group (ECOG) performance status of 0 to 2, life expectancy of ≥ 3 months, and measurable disease according to RECIST criteria. Tumor samples from study patients were evaluated for KIT mutations and amplification as well as coexisting BRAF, NRAS, and GNAQ mutations. Patients with tumors harboring KIT alterations were eligible for 6-week cycles of imatinib, which was continued until unacceptable toxicity or disease progression. Imatinib was started at 400 mg twice daily, with the dose reduced to 400 mg daily and then 300 mg daily in the event of toxicity; study treatment was discontinued if toxicity persisted. Tumor assessments consisted of radiographic tumor measurements and occurred within 4 weeks of the first dose of imatinib, then every 6 weeks for 18 weeks, and every 12 weeks thereafter. The primary endpoint was durable partial or complete response according to RECIST criteria. Secondary endpoints were overall survival (OS), time to progression, and association of molecular alterations with clinical response.

Of 295 patients whose tumor samples underwent molecular screening, 51 had tumors harboring KIT alterations; 26 tumors (51%) had only KIT mutations, 9 (18%) had only KIT amplification, and 16 (31%) had both mutations and amplification. Of the patients with KIT-mutant tumors, 28 were treated with imatinib and included 13 patients (46%) with mucosal melanoma, 10 (36%) with acral melanoma, and 5 (18%) with melanoma arising from CSD sites; none of the patients who received imatinib had BRAF, NRAS, or GNAQ mutations. Reasons the remaining 23 patients did not receive imatinib included absence of active disease, death, ineligibility due to other treatment or medical condition, and contraindications to imatinib.

Of the 28 patients who received imatinib, 25 were evaluable for clinical response. Of these, 2 patients achieved durable complete responses (94 [ongoing] and 95 weeks, respectively), and 2 achieved durable partial responses (53 and 89 [ongoing] weeks, respectively); the predetermined endpoint of five responses of 25 evaluable patients was not met. The overall durable response rate was 16% (95% CI, 2%–30%), median time to progression was 12 weeks (interquartile range [IQR], 6–18 weeks; 95% CI, 11–18 weeks), and median OS was 46.3 weeks (IQR, 28 weeks–not achieved; 95% CI, 28 weeks–not achieved). A total of 10 patients (40%) were alive at the time of analysis.

KIT mutations were widely distributed over the coding region, but all responses occurred in tumors with L576P and K642E mutations. Subgroup analysis revealed a higher response rate in cases with a mutant to wild-type KIT allelic ratio > 1 (71% vs 6%; P =.002).

In conclusion, significant clinical response to imatinib was observed in a subset of patients with metastatic melanoma harboring KIT alterations. Further studies are needed to confirm KIT alterations of functional relevance in order to better predict response to KIT inhibition.


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

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Another study relatiing diet and cancer.
Abstract The Mediterranean diet and more specifically certain meats, fruits, vegetables, and olive oil found in certain parts of the Mediterranean region have been associated with a decreased cardiovascular and diabetes risk. More recently, several population based studies have observed with these lifestyle choices have reported an overall reduced risk for several cancers. One study in particular observed an inverse relationship between consumption of Mediterranean herbs such as rosemary, sage, parsley, and oregano with lung cancer. In light of these findings there is a need to explore and identify the anti-cancer properties of these medicinal herbs and to identify the phytochemicals therein. One agent in particular, carnosol, has been evaluated for anti-cancer property in prostate, breast, skin, leukemia, and colon cancer with promising results. These studies have provided evidence that carnosol targets multiple deregulated pathways associated with inflammation and cancer that include nuclear factor kappa B (NFκB), apoptotic related proteins, phosphatidylinositol-3-kinase (PI3 K)/Akt, androgen and estrogen receptors, as well as molecular targets. In addition, carnosol appears to be well tolerated in that it has a selective toxicity towards cancer cells versus non-tumorigenic cells and is well tolerated when administered to animals. This mini-review reports on the pre-clinical studies that have been performed to date with carnosol describing mechanistic, efficacy, and safety/tolerability studies as a cancer chemoprevention and anti-cancer agent. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

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kris herrington's picture
Replies 15
Last reply 8/27/2011 - 11:31pm



I am stage 4 and was told to go to the NCI for thier treatment with Steven Rosenberg. Has anyone been thru this? What was it like and did you have sucess?




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shellebrownies's picture
Replies 8
Last reply 8/27/2011 - 1:28pm

By the grace of God, Roche has given Don approval to join the expanded access vemurafenib trial based on his earlier positive BRAF result. (The test conducted by Roche on the tissue sample we provided came back negative, even though it was from the same sample that had tested postive on GSK's test in May).

He started the medication today and it was none too soon; he has had increasing back pain in the last week that we are still in the process of controlling.

We still do not know the outcome of what will happen when he is transitioned off the trial once the drug becomes commercially available, but for now, we are happy to have access to the drug at all.

Thank you, everyone, who has kept us in their thoughts and prayers; I cannot tell you how much that has meant to us!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Anonymous's picture
Replies 3
Last reply 8/27/2011 - 11:29am

I'm 3 yrs Ned from being diagnoses stage IIIa.
Just had an abnormal pap this something I tell my oncologist about?...or just wait 6 months til it's retested?

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nickmac56's picture
Replies 4
Last reply 8/27/2011 - 1:04am

We met with the radiation oncologist who is planning the treatment for my wife's spinal tumors. It's pretty amazing actually. We'd all love to find a systemic cure for melanoma, but in the meantime cut and burn is a way to extend life, often at reasonable quality of life. We were told my wife's spinal tumors we essentially untreatable, and a couple years ago they probably were (which would have led to debilitating pain and loss of lower body function). But now, with this new radiation equipment, they can fry enough without impinging on the spinal cord or other organs to buy her some good time (we hope). She has 12 identifiable tumors in the epidural space from her ribcage to lower vertebra and one in the tailbone. But the radiologists said that the entire area was likely cancerous, like a coat of sugar on the walls of the epidural space. Cyberknife is too precise, it could only hit the identified tumors. But the Tomo therapy radiation can hit the entire length without damaging the cord or organs - it's not precise enough to do a tiny tumor but not so big it causes damaage beyond what is intended. I think it's just incredible the advances they are making in this area. 

She is going to do 15-20 treatments over the course of the next 3-4 weeks. The key question is how much of a dose to the area - he wants enough to do the job (recognizing melanoma's alleged radiation resistance) but not so much it is toxic to area. And you only get one shot at this area - if there is any recurrence it can only be treated by a Cyberknife spot treatment. He's shooting for a total dose of 3,750 Gy. 

Side effects are expected to be pretty minimal, aside from fatigue. Unlike the old external beam radiation the way this works it avoids large doses to the organs so your stomach and intestines don't get all screwed up.

So our attitude has changed from being pretty morose to being somewhat more optimistic - that she can buy some time and good quality of life. It even got her thinking about the holidays  - that she might be around to enjoy them!


Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Lisa13's picture
Replies 1
Last reply 8/26/2011 - 3:49pm
Replies by: emilypen

I've had a hiatal hernia and acid reflux for years. I just started Yervoy 2 weeks ago and both of these conditions have worsened. My acid reflux is so bad today that I'm dizzy, nauseus and have burning in my chest. 2 of these symptoms can be side effects of Yervoy, so I"m not sure which one it's related to.  That being said, does anyone whose been on or is currently being treated with Yervoy experience any of these symptoms? Especially if they had prior stomach issues.

Lisa - Stage 4 lung mets

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

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hoffmana1's picture
Replies 4
Last reply 8/26/2011 - 11:24am

My husband is a stage IV 13 year survivor.  His story is complicated, as he never received adjuvant therapy due to a second diagnosis of sarcoidosis of the lungs. Anyway, all has been well and though he is short of breath lately, I just noticed two very dark red/purple "blood blister" type spots on the underside of his scrotum. Is this something else, or could it be melanoma again? Has anyone else experienced getting mets so far out from the primary diagnosis? Is this even possible?

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glewis923's picture
Replies 9
Last reply 8/26/2011 - 8:02am

After i completed 7 SRS (Novalis TS) and WBR  4 mths. ago, then Yervoy i finished in mid-May;  I'M ALIVE !    still no telling which brain tumors are completely dead or what, but no "meaningful" new ones.  My speech sounds like Donald Duck - Drs. don't really know why except possible brain stem pressure or lung tumors have all shrunk a tad and definately seem to be stable- as brain too.

Next week I start the Roche Vermufumib (now whatever it's called-raf)  still PLX 4032.  I cannot praise my local small-town oncologist enough for helping me weed through things- ie.:  the "big" know-it-all hospitals/ Drs. who know /control all but tell you very little at times, but  control your destiny!   

Anyway, Very HOPEFUL and grateful that I've been given a 3rd or 4th chance (lost count).   Wishing ALL of you the best.

Love from Grady Lewis Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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