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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mrsaxde's picture
Replies 4
Last reply 9/11/2015 - 1:21pm

I started to post this as a reply on another thread, but I decided that I would rather share it on its own post.

"Not today."

That is my mantra. I believe in it so much that I had it tattooed on my forearm after recovering from my third surgery last fall.

Back in 2008, we had a beautiful blue point Siamese cat who developed some sort of stomach or intestinal cancer. As I watched her go downhill, I would sometimes get upset, and start to cry. But I buoyed my spirits by reminding myself that yes, she was going to die, but not today.

A few years ago I got hooked on the show "Game Of Thrones." In season one, Arya Stark, one of the main characters, is taking sword fighting lessons from her teacher, known as "The Dancing Master." He asks her, "What gods do you worship?"

"The old gods....and the new," Arya replies.

"There is only one god, and his name is death," The Dancing Master says. "And the one thing we say to death, is 'not today.'"

After my melanoma recurred last year, I made a pledge to never let myself get down, or feel sorry for myself, or expect others to feel sorry for me. Yes, some day I will die, from melanoma, or from something else.

Not today.

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Anonymous's picture
Replies 4
Last reply 9/15/2015 - 7:14pm

Short hx: 2003 stage 1, 2007-2010 stage 3c inguinal nodes recurrence, iliac nodes recurrence,obturator nodes recurrence. failed interferon. Radical node dissection resolved issues. Numerous nodes containing mel. (Several surgeries). 


Since 2010 have had clean scans every 6 mths then annual till now. Latest ct abdomen/pelvis: New enlarged retroperitoneal lymph nodes in the abd and pelvis compatible with metastatic disease. Also noted was multiple enlarged para aortic nodes, largest measuring up to 2.5x2.6 cm. Also enlarged iliac nodes 2.5x1.5 cm. Retrocaval node at level of kidneys 1.7x1 cm. Portacaval node 2.4x2 cm. In lung, a nodule went from prior scan 3mm to 9x8 mm.




So, i am sort of freaking out! How much trouble do you think im in? PET scan tomorrow (just got news tuesday).






Do not fear tomorrow, God is already there.

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Scooby123's picture
Replies 3
Last reply 9/11/2015 - 7:10am
Replies by: Scooby123, Patina, mrsaxde

Hi  all,

just been for my scan results a month after last ippi scans my consultant wanted to see if due to response from ippi on all my mel that it was not a short response bit confusing to me . Anyway due to not got full report he said nothing looked different from last scan if anything could be a bit better. He will contact me if any more reduction otherwise 2 months rest from hospital unless I feel I'll scans in 6 months he said . I thought you get scanned every 3 months after scooby

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_Paul_'s picture
Replies 21
Last reply 9/22/2015 - 12:21am

What an odd thing to celebrate - my one year anniversary of stage 4'ness. When my oncologist told me I was stage 4 on 9/10/14 he said the "conventional" survival was less than a year. Googling revealed several sources citing that 7 months was the median survival.

But here I am and not dead yet!

I am truly (as are all late stage survivors) on bonus time. Without all the help from my team at SCCA, and the considerable melanoma research that has been and continues to be undertaken all over the world I am pretty sure I would not be able to type these words in. Also, I have learned so much from all the contributors to this site that has allowed me to make intelligent decisions about the path I am on.

I have absolutely no idea if this will just be a respite from the disease or a long term durable response, but I do know enough not to waste my bonus days!

I am just so humbled and so incredibly grateful.

- Paul

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jaco's picture
Replies 9
Last reply 9/14/2015 - 8:29am

I'm Stage IV, my Doctor has prescribed I start the combo drugs- Tafinlar + Trametinib.  We are waiting for insurance to approve. Little nervous on starting this drug, I was told by the nurse that the side affects can go away after two weeks.  Any insight on what I can expect, I have an office job and just wondering if I will need to take time off?

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KimW's picture
Replies 12
Last reply 9/13/2015 - 1:38pm


Hope this finds all having a good day. I'm looking for information or any positive news regarding scalp melanoma and in-transit recurrences.

My husband (age 66) was diagnosed with melanoma last November and had a 1.25 mm lesion on the top of his head. He had a WLE and SNB in December and the pathology report showed the sentinel nodes on both sides of his neck to be clear. At the surgery follow-up in January, the doctor noticed a new spot about 2 inches from the scar, which came back as an in-transit recurrence after a punch biopsy. (Clean edges). He has had two more of the same spots on both sides of his head, and they too were both in-transits with clean edges. All were very small but I've learned by reading that it doesn't matter. 

I'm scared to death now and everything I read on the Internet is full of such grim outcomes. I was wondering if any of you have had recurrences or scalp melanoma and have had any positive experiences? My husband's PET scans and neck ultrasounds have been clean so far, but we go next Tuesday once again for scans and I'm really nervous since he's had 4 recurrences. 

Thank you, 


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jamieth29's picture
Replies 1
Last reply 9/9/2015 - 8:52pm
Replies by: jamieth29

Just read a article he's going to NYU. I went to Florida 2 months ago to see him for a trial...glad i didn't put more effort into it.

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Banders's picture
Replies 2
Last reply 9/9/2015 - 6:42pm
Replies by: Bubbles, khubes

I have been on the Braf combo since March and it was working well but now is not working. PET scan results show lung cancer has spread to the leg and brain. They want to put me on Optivo, do brain radiation and Gamma knife. Any advice or suggestions would be appreciated. 

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As options for cancer patients become increasingly complicated, and expensive, the most influential source for US oncology treatment guidelines will for the first time offer a tool to assess the costs versus benefits of available therapies.The National Comprehensive Cancer Network says its new tool will provide a clearer picture of the relative value of medication options, particularly in cases where a very expensive therapy does little to improve survival.Doctors developing the measures expect them to shift demand away from less effective treatments, influencing the prices drugmakers are able to charge.

 They say they are responding to the needs of patients who are having to pay much more for their own care, with higher health insurance premiums, co-payments and deductibles, and want to know the value of their treatments.The NCCN, an alliance of 26 cancer centers, envisions the new tool as a supplement to its widely followed guidelines for oncology care, which set out protocols for treating a range of cancers based on diagnosis, disease stage and other factors, such as age.Other medical groups are also trying to address the cost issue, but not as directly as the NCCN. The American Society of Clinical Oncology is developing its own tool for valuing treatments, but says that its “net health benefit” scores will not consider costs, although prices will be noted alongside the scores. In June, New York’s Memorial Sloan Kettering Cancer Center launched an interactive calculator, called “DrugAbacus,” that allows users to decide how much one of 54 newer drugs should cost based on factors like side effects and novelty.The NCCN scale, to be launched in mid-October, will employ “evidence blocks” that assign a score of up to five points for each of five measures — price, effectiveness, safety, quality and consistency of clinical data. Initially, it will evaluate drugs used for multiple myeloma and chronic myeloid leukemia. Similar guidelines are expected for most other types of cancer by the end of 2016.“A company that has an effective drug that’s appropriately priced should welcome these blocks,” said Dr Robert Carlson, NCCN’s chief executive. If a drug is overpriced, “that’s very important information for everybody.”Currently, prescribing patterns can be inconsistent, determined by an individual physician’s understanding of published data about a drug, patient preferences and habit. US oncologists also can make a profit on intravenous drugs administered in their offices — calculated as a percentage of a drug’s cost — creating a possible financial incentive for choosing higher-priced therapies.The NCCN says the assessment of each medication will be presented in a simple, tabular form — with each of the five components colored in to represent a score of one to five. Eventually, the comparison tool will be incorporated into healthcare technology systems used by hospitals, including products from IBM Watson and McKesson.Threat to drugmakersThe sort of cost-benefit analysis NCCN has undertaken could threaten drugmakers like Roche Holding AG, Novartis AG and Celgene Corp, which earn billions of dollars annually from cancer therapies that may do little to extend a patient’s life or come with severe side effects. Worldwide spending on cancer medications reached US$100 billion in 2014, up from US$75 billion just five years earlier, according to IMS Health. US spending accounted for 42 percent of the total.Drugmakers are already concerned about the accuracy of the information NCCN plans to present and worried that health insurers will seize on the new guidelines to drop coverage of some drugs, said Randy Burkholder, vice president of policy and research at the Pharmaceutical Research and Manufacturers of America. The trade group does not have full details of the NCCN’s plans, and will comment on the guidelines once they are public, he said.The NCCN website has some 700,000 registered users, and more than 6 million copies of its guidelines were downloaded last year. The two largest US payers of health costs — UnitedHealth Group and the federal government’s Medicare plan for seniors — rely on NCCN guidelines to shape their oncology reimbursement policies.“Many, if not most, of the others use our guidelines either directly or indirectly,” Carlson said.But the current guidelines don’t analyze costs, and top oncologists have questioned whether some treatments are worth the price. For example, Roche’s Avastin offers lung cancer patients an additional 1.5 to 2 months before their disease worsens, “but that changes the cost per month of treatment from something in the hundreds of dollars, to close to US$10,000,” said Dr. Lowell Schnipper, chief of hematology/oncology at Beth Israel Deaconess Medical Center in Boston. He chairs the ASCO task force studying the value of cancer care.A recent study showed Stivarga, sold by Bayer AG, added about two weeks of “quality adjusted” life, at a median price of nearly US$40,000, for previously treated patients with advanced colorectal cancer. The researchers said the drug, which causes side effects including swelling of the hands and feet, has become the standard of care for that indication since entering the US market in 2012.Patient advocates have traditionally warned against treatment decisions that factor in a drug’s price, saying such considerations could lead to “rationed” healthcare. But at the same time, patients worry about costs. A recent poll by the Kaiser Family Foundation found than 87 percent of Americans surveyed want changes to US law that would allow Medicare to negotiate drug discounts.Dr. Derek Raghavan, president of Levine Cancer Institute at Carolinas HealthCare System, says doctors need much more real-world information at their disposal, including a cost-benefit analysis of side effects.“If Drug B costs 70 percent of Drug A, but has a side effect profile that brings every second patient to the hospital for a four-day admission, then it does not have value,” he said.

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Anonymous's picture
Replies 2
Last reply 9/10/2015 - 9:04pm
Replies by: tschmith, casagrayson

Hi everyone,

I've got a dark patch of skin on the heel of my foot, and its definitely not a mole. Its gone from being a pale brown to a darker, almost purply colour. It looks as if its stayed the same size (pea size) over the course of a month, but I can't be too sure.

It looks quite deep beneath the skin and thats what scares me. Could it be melanoma or something worse? I've also got a little lump in my leg develop (and some groin pain that comes and goes) and I'm worried it could have spread to my lymph nodes.

I've got a dermotoloist appointment in a few days but I'm scared... can anyone offer any advice or suggestions about what it could be? Thanks!

(PS: I tried to attach a picture but it wouldnt let me)


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pookerpb's picture
Replies 8
Last reply 9/10/2015 - 8:19am

Asking for prayers as my DH goes through another set of test to try to figure what is going on with this stomach/bowels.

Has been on Keytruda/Interferon trial since January 2015, since progession on Ipi in 2014. His melanoma returned in 2013 to his small intestine and a resection was done due to complete blockage by the time they found it. Had to leave numerous lymph nodes due to location. Thats when he started the IPI trial and progressed with multiple mets after 6 months.

Fast forward to July, had pnuemonitis from Keytruda and had to be on high dose steroids for 6 weeks. On second round of Keytruda since completion of steroids. Now has low iron, hemocratic numbers way down and severe fatigue. Nagging persistent stomach ache that doesnt come and go with or without food....just always there. Bleeding from somewhere so they are testing stool and ordering scope.

Anyone else have stomach pains on keytruda? We are hoping it is either stomach or bowel inflammation form the infusions and not the small intestine lymph nodes enlarging. Prayers needed. I hate to see him this way. It was so hard the first time when hi kept having to have blood transfusions because they didnt diagnosis as stage iv until he was so, so weak.

This has been so hard on him, me, our children and I feel so defenseless and unable to help him. I am OCD control freek when it comes to making sure everying is taken care of, in place and no one has to worry. My anxiety level (like his) is through the roof with this disease. I hate how it controls our lives.....


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courtney2015's picture
Replies 1
Last reply 9/9/2015 - 3:08pm
Replies by: Kim K

Hi Everyone,

I posted previously about a strange new mark growing on the underside of my big toe. Im still waiting to hear back from the specialists in the city.

I have another mole thats concerning me. I actually showed the GP this mole when I first showed her my toe. She said it was benign just by looking at it. It was slighly raised, a mix of dark browns and what looks like abit of red (Its hard for me to get a good look at, its at the top of my arm, sort of towards the back of it) and its about 6mm and abit asymmetrical, A few days later I randomly thought to have a look at it and the entire surface of the mole had crusted over and was like peeling? I pulled the top off and it had spots of pigment from the mole. it was now completely flat. This rang alarm bells with me, as this is exactly how my original melanoma behaved right before diagnosis. I rang the GP straight away and saw her the next day. She still mantained that it looked benign but because it had peeled and melanoma is unpredictable, she wanted to do an excisional biopsy. Unfortunately my appointment has been cancelled a few times, and I may get seen to next week, Today the same mole had slightly risen up again and the surface peeled again! Argh! I cant find much info on the internet but I was wondering:

Has anyone had something simliar? 

Do benign moles peel at all? 

Thankyou so much in advance

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Anonymous's picture
Replies 4
Last reply 9/9/2015 - 5:21pm
Replies by: casagrayson, fgevans, Anonymous

First thing is that i am a worrier in general and always think the worse.

about  1 /12 years ago i noticed on my lower back (just below the waistband a brown round lump on my side) - i was in a mirror changing and had not noticed it before. I showed it to my wife who said thats its been there a long time .


its a very round brown raised circle around 7 mm in diamter and around 1mm raised . it is rough to tough and not smooth.


Since being aware of it i have kept my eye on it and it has remained the same througout the 1  1/2 years.


it does not itch and does not bleed.


I also have another smaller light brown mole on the other side.


basically it does not look like any examples of melanoma i have seen online 


should i be concerned.


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aquamak's picture
Replies 4
Last reply 9/11/2015 - 1:19am

Had a CT scan 2 weeks ago and a follow-up abdominal MRI last week.  All clear!


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evieg's picture
Replies 4
Last reply 9/9/2015 - 8:11am
Replies by: evieg, jbronicki, aquamak

Can anyone please help and interpret what this means form the CT report..."Heterogeneity is suggested within the dome of the liver though no discrete mass is seen with certainty at this time".... So there is possibly something there??  Another place on the report..."the liver demonstrates mild heterogeneity....this is especially true throughout the dome on images distinct lesion elsewhere is noted"


Thank you in advance!!


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