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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Anonymous's picture
Replies 1
Last reply 3/18/2015 - 11:07am
Replies by: CHD


The Claire Marie Foundation was established in 2014 following the death of Claire Marie Wagonhurst, a sparkling 17 year old who lost a long battle with adolescent melanoma as a result of changes her body went through during puberty.

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Anonymous's picture
Replies 15
Last reply 3/20/2015 - 9:52am

So I was supposed to fly to Oahu tomorrow to see my medical oncologist.  Last visit 1 year ago had a discussion regarding my concerns about my cumulative radiation exposure (at least 9 PET/CT, 5 or more chest CTs, multiple chest x-rays - lost count etc.).  At what point do we drop scans?

In my case I had indolent disease.  8 years after stage IIA became stage IV with a small lung met and even smaller muscle met.  Removed lung tumor and underwent IL-2.  Complete responder with a durable remission.......  Based on recent follow ups of past IL-2 complete responders both my surgical & medical onc. have finally accepted I will probably continue with my durable remission.

Only now what to do.....

I called yesterday and since no scans were ordered asked what was the point of taking an entire day, flying to Oahu, spending over $300 on airfare, another $100 or so to catch a cab, to basically say I am still doing well.....  

I just had several blood tests & chest x-ray as part of my pre-op stuff for ACL surgery, all good.

With my Dr.'s blessing, he agreed I could be followed by my surgical oncologist who flies to the Big Island 2-4 times a year to see patients.  My surgical oncologist said I should still be seen by someone, but as to what testing, lab work and for how long, neither of them had an answer.  They are going to talk to each other about it.

The funny part is both feel I will never hear from mel again, but neither wants to discharge me forever - LOL.  I am at peace not doing any more scans at this point.  Perhaps it is worth it just to give those guys hope that some of us set the curve rather than live by it......

It feels good to have graduated from seeing them.  I think now it will only be annual visits +/- blood work with my surgical onc.  I can stay at home to get that done which also helps a great deal.

Just updating for whoever was interested.  Glad the day finally came :)

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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One Doctor’s Quest to Save People by Injecting Them With Scorpion Venom

One Doctor’s Quest to Save People by Injecting Them With Scorpion Venom

A pediatric cancer nurse out in Seattle and has been working on this project. She tells this lady it is currently being used in Australia in adult melanoma patients and seeing positive results.

Brendan I. Koerner Magazine

  • 06.24.14

One Doctor’s Quest to Save People by Injecting Them With Scorpion Venom

A decade-long quest to solve one of the most vexing problems in oncology: the fact that a tumor’s precise boundaries are nearly impossible to define during surgery.

A preoperative MRI provides only a rough guide to a tumor’s fuzzy edges; the scans often miss slivers of cancer that seamlessly blend into the surrounding tissue. Surgeons often face a brutal catch-22: Either cut out any suspicious tissue, an approach that can lead to debilitating side effects, or risk leaving behind malignant cells that will eventually kill the patient.

Olson tells the students that he finally has a solution. His laboratory at the renowned Fred Hutchinson Cancer Research Center, located just down the road by Seattle’s Lake Union, has developed a compound that appears to pinpoint all of the malignant cells in a patient’s body. It gives those cells a bright fluorescent sheen, so that surgeons can easily spot them in the operating room. Olson calls the product Tumor Paint, and it comes with a surprising twist: The compound’s main ingredient is a molecule that is found in the stinger of Leiurus quinquestriatus, a potent little animal more popularly known as the deathstalker scorpion.

Olson thought he could accomplish this feat by modifying a molecule known to bind specifically to cancer cells. If he could attach a fluorescent dye to such a molecule, maybe he could make the tumors glow a brilliant blue or green when viewed through a near-­infrared camera positioned next to the operating table. Surgeons would then have no problem seeing exactly where a tumor began and ended.

Ullrich hypothesized that the tumors could be held in check if there were a drug capable of blocking their ability to “sweat” chloride. Chlorotoxin promised to do just that.

When she injected chlorotoxin into the brains of mice with gliomas, Ullrich found that the peptide would bind only to the cancer cells; the molecule wanted nothing to do with the normal cells adjacent to the tumors.

the chlorotoxin didn’t attach just to brain tumors—it grabbed onto all sorts of cancers, from those that affect the skin to those that destroy the lungs. They also learned that the peptide could cross the barrier that protects the brain from toxins and other chemicals—a rare attribute for a molecule of its size.

In one instance, the chlorotoxin illuminated a clump of just 200 malignant cells that were burrowed deep within a wad of fat. “That was the point we learned that the technology was far more sensitive than an MRI,”

Blaze launched the first human clinical trial of Tumor Paint in December 2013; a second Phase I trial is slated to begin later this year.

Olson’s tattoo is a tribute to not only chlorotoxin but also a range of similar peptides that he’s now investigating as possible weapons against cancer and other diseases. Using a custom-written Python program that can troll through decades’ worth of genomic databases on venoms, his lab has identified hundreds of thousands of mol­ecules that share chloro­toxin’s central knot of disulfide bonds and thus may form the basis for new cancer-­fighting drugs.

Painting Tumors

Brain surgeons can’t easily distinguish a tumor from healthy tissue. Jim Olson’s Tumor Paint solves this problem by giving tumors an eerie and distinct fluorescent glow. —Jason Kehe

Step 1 Olson needed a compound that would locate only tumor cells. The answer: chlorotoxin, a (nontoxic to humans) mol­ecule found in the venom of the deathstalker scorpion.

Step 2 Chemists attach a fluorescent dye—the FDA-­approved indo­cyanine green (a)—to laboratory-­made chlorotoxin (b). The resulting compound glows in near-­infrared light.

Step 3 Before surgery, Tumor Paint—which can cross the blood-brain barrier—is injected into the patient’s bloodstream through an IV and begins circulating within the body.

Step 4 The outsides of tumor cells contain a protein healthy cells don’t: Annexin A2 (a). Research shows chlorotoxin (b) binds to Annexin A2 and from there seeps into tumor cells (c).

Step 5 It can take an hour or two for enough of the compound to accumulate in a tumor to be useful. Even then surgeons still can’t see their targets with the naked eye. Instead, they point a near-­infrared laser at the area—often in the hard-to-operate-on brain—and a special camera captures the light emitted from the Tumor Paint. Tumors appear on a monitor as ghostly-­green blobs.


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

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Anonymous's picture
Replies 1
Last reply 3/21/2015 - 12:42pm
Replies by: _Paul_

I found out weeks ago that I have melanoma.  It was staged a 1B after the first pathology report.  After removing two nodes, one was negative and one showed a trace of infection.  We are currently getting a 2nd opinion and had an appointment delayed because the pathologist is questioning lymph node involvement.  Has anyone experienced this?  Is this common?

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BrianP's picture
Replies 0

Curcumin is often a topic of conversation on here so I thought some might find this article interesting

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Happy_girl's picture
Replies 3
Last reply 3/19/2015 - 9:40pm

Hi everyone! I have a random question. That no one may know the answer to:

when washing my hair- I found a small bump on my scalp.  After checking my dear friend google-it seems to be where there are occipital lymph nodes.  My original melanoma was on my back and drained to the lymph basin under my left arm.  There were micromets in my sln.  All other nodes removed were clear.   Is it likely to have traveled to the occipital lymph nodes on the back of my head, or Am I just panicking because that's what I do best?

I know anything is possible with melanoma- but I'm just looking for some any possible related experience.  Thanks! Hope everyone hAd a wonderful st Patrick's day!

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Annesmith's picture
Replies 5
Last reply 3/19/2015 - 8:04pm

I've got 2 small lumps on my finger. I suspect them to be ganglion cysts. They are small, painless, flesh colored. My primary was almost 10 years ago (leg 1B).  I think it is highly unlikely that it is melanoma but it's in the back of my mind.  Melanoma would be blackened/ opened (etc.)... yes? This looks completely benign.  I have an annual appointment with my derm, but not until June.  Wondering if I should see him earlier?  Thanks for your thoughts all!

Anne Smith

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Anonymous's picture
Replies 2
Last reply 3/19/2015 - 11:20am
Replies by: Anonymous

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Eileensulliv's picture
Replies 3
Last reply 3/19/2015 - 11:36am

I had my first dose of ipi and Nivo at the end of February. I was supposed to have my second treatment this Thursday, but my thyroid levels are not normal, so I cannot get my treatment. This Saturday I'll go for another thyroid blood test and Monday morning my doctor will call with the results, and whether or not I can have my treatment next Thursday. 

In the time from my first treatment, I have experienced fevers (highest was 102.5), fatigue, vomiting, loss of appetite, sweats and chills, racing heart, shaky hands, shortness of breath, and rash and itching. I started to feel MUCH better Sunday and Monday, but today I don't feel as good. My doc put me on a beta blocker to help regulate my thyroid. My T3 and T4 levels are quite high, and my TSH is very low. 

Has anybody else had thyroid issues while on ipi/Nivo? If so, what worked for you? I've been researching foods that will help, but just wondering if anybody has some advice. Thank you very much!


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Replies by: mary1233

Temozolomide Plus Cisplatin as Systemic Adjuvant Therapy for Resected Mucosal Melanoma

I know several people that have recently been started on the above treatmetn.  They have been being asked why they are being given these OLD drugs.  This article is the study that is the basis for this treatment for mucosal melanoma patients.  I have not seen it tied to specific Mutations, but learning what mutations have been involved in these trials will be very interesting.  (Suspect C-kit, NRAS and BRAF to be the 3 main over-expresions/mutations involve)


The endpoints were relapse-free survival (RFS), overall survival (OS), and toxicities.

Results: One hundred and eighty-nine patients were enrolled and finally analyzed. With a median follow-up of 26.8 months, the median RFS was 5.4, 9.4, and 20.8 months for group A, B, and C, respectively. Estimated median OS for group A, B, and C was 21.2, 40.4, and 48.7 months, respectively. Patients treated with temozolomide plus cisplatin showed significant improvements in RFS (P < 0.001) and OS (P < 0.01) than those treated with either HDI or surgery alone. Toxicities were generally mild to moderate.

Conclusion: Both temozolomide-based chemotherapy and HDI are effective and safe as adjuvant therapies for resected mucosal melanoma as compared with observation alone. However, HDI tends to be less effective than temozolomide-based chemotherapy for patients with resected mucosal melanoma in respect to RFS. The temozolomide plus cisplatin regimen might be a better choice for patients with resected mucosal melanoma. Clin Cancer Res; 19(16); 4488–98. ©2013 AACR.


Translational Relevance

Mucosal melanoma is rare and of extremely poor prognosis. However, standard adjuvant therapy for mucosal melanoma has not been established. The importance of our study is that we provide clinical data showing that high-dose IFN-α2b (HDI) and temozolomide plus cisplatin may be advised to patients with mucosal melanoma in stages II/III and after surgical removal of primary mucosal melanoma. The significance of the study is that temozolomide plus cisplatin regimen, likely better than HDI, may be a choice of adjuvant therapy for patients with mucosal melanoma in respect to relapse-free survival (RFS) and possibly overall survival (OS). Our study shows that both adjuvant regimens are safe and well tolerated for patients with resected mucosal melanoma. Even for patients harboring c-kit or BRAF mutations that are potential targets for targeted therapies, the temozolomide plus cisplatin regimen may be a better choice than HDI. Our trial is unique in that it addresses adjuvant therapy for a specific, uncommon subtype of melanoma.


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

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Lesanne's picture
Replies 4
Last reply 3/18/2015 - 1:10am

My husband started with the Tramitinib and Debrafenib combo trial a month ago.  I noticed there are quite severe side effects.  He was on the treatment for a month and was running a very high temperature and getting chills all day yesterday.  I would like to know from other patients using this combo, whether running such high temperatures  and chills carry on or is it not so frequent?  He lectures and had to miss 2 of his classes as a result.  I have done quite a lot of research on this combo - and am concerned that this could be an ongoing experience for him which could affect his lecturing.  Your comments will be appreciated!

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Last week I mentioned when I saw them to both my med and radiation docs my left foot hurts. When I touch it it is kind of like touching a nerve instead of my foot. Especially my 3 smallest toes and a few places on top and the left side of my foot. Well the med doc was actually his assistant and he didn't say anything about it. My radiation doc's nurse just said that was new. So nether are planning to help so i figured it might heal itself like other stuff has but this has been going on for at least 10 days.

I think it must have started when I was on the fentanyl pain patch and when I came off them I could feel it. So I'm not exactly sure when it started. During that time they had me on 3 types of pain meds at the same time because of the syatic nerve painin my left hip and leg. There was fentanyl patch, morphine and some pill for nerve pain oh and some oxycodone I already had. Once I found a specific cushion provided lots of pain relief I got off everything except the fentanyl. I was on the nerve pain about 5 days. The morphine 2 days. The oxy I had been on a couple months. I was on the fentanyl patch a couple months and quit it ten days ago. They were also radiating the t4 and 5 vertebrae for that nerve. Plus the right femur for painin that hip. Plus the initial spot of the left shoulder and neck. So now I'm just on Keytruda month 10 and xgeva month 13.

Ive tried increasing my walking to 6 ten minute walks a day. Not easy with my left hip pain. But walking is supposed to help nerves. I put the heating pad on it but doesn't reall help. I can't really reach it with my back and shoulder issues so I can't massage it or soak it or apply lotions to it like I would want to. I hate asking my parents cause they do enough taking care of me unless I knew of something that would work good so not to waste their effort. I took Tylenol but that really didn't help either. I haven't tried ibuprofen yet.

Any ideas what I can do to relieve this pain and maybe heal the nerves?


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Anonymous's picture
Replies 7
Last reply 4/10/2015 - 9:58am
Replies by: Indiana82, jogo, Fen, yazziemac, dvd

Recently diagnosed (January 2015).  Tumor in parotid gland (salivary gland) turned out to be metastatic  melanoma. Had surgery to remove parotid gland (partial) and tumor (with clean margins).  No evidence of primary melanoma found (nothing on skin, eyes, throat, nose).  Clean brain MRI and body PET scans. NED. Going to Mayo next week for another opinion about further surgery and any possible adjuvent treatment.  This past week had a consult with a second ENT surgeon who wanted to remove 15-25 lymph nodes from the neck area near the original surgery site, but decided to wait on this after hearing my original ENT surgeon's thoughts on this.

Has anyone else had a melanoma in the parotid gland, and if so what has your treatment been?

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Anonymous's picture
Replies 2
Last reply 3/20/2015 - 6:58am
Replies by: bonusfries, Anonymous

...whoever you are posing as this time:

Get the hell out off this board. Everyone here is dealing with a very serious illness and is not interested in any crap that you happen to be peddling.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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