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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ET-SF's picture
Replies 8
Last reply 9/16/2015 - 12:52pm
Replies by: ET-SF, Never Gonna Stop, tschmith, Anonymous, mrsaxde

Hi everyone,

ET and I have been discussing the future treatments she may need to undergo, now that she has been formally staged at IIIb.  We understand she is at about a 50% risk of recurrence, and we know that systemic treatments can be insanely expensive.  Our discussion quickly turned to our inate distrust of insurance companies, with memories of how they have screwed us in the past.  Of course that was then, and this is now.  I believe the Affordable Care Act gives us a lot of protections we didn't have.

My question to all of you is this:  What sorts of insurance snags might we expect when the insurance company receives a six-figure bill for some treatment?  (I bet someone has written a cancer patients' guide to dealing with insurance.)  Do insurance companies dictate which treatments you may and may not receive (or at least get reimbursed for)?  Do they have policies we should look out for, such as the maximum number of rounds of some immunotherapy you can take (or be reimbursed for)?  Or are they truly on the hook to pay for whatever we need, over and above our maximum out-of-pocket expense?

And what happens when an insurance company breaks the law to avoid paying?  (We've experienced this with life insurance:  Someone dies, and they're supposed to pay... but they refuse... for no reason they can cite....  so we have to take legal action to collect.)


ET and SF

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BuzzBrown's picture
Replies 4
Last reply 9/16/2015 - 5:10pm

I recently had melanoma surgery on my forehead. They did a wide excision and removed a few lymph nodes. My surgeon thought we would get results within a day or two. I am now nine days post surgery and still awaiting results. Is this a normal time frame for results?

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JimsWife's picture
Replies 10
Last reply 9/14/2015 - 3:47pm
Replies by: marta010, Anonymous, Bubbles, casagrayson, JimsWife, ET-SF, khubes

Hello all,

It has been sometime since I've posted but am in a time crunch to make treatment decisions. I am hoping to get some feedback on any experience or thoughts from this very educated group.

Backstory: My husband Jim, 35, primary diagnosis 2007 mole on head, nothing until December 2014 where he presented with headaches and subsequently found innumberable brain tumors, a couple on his lungs and spine; Stage 4 M1c, BRAF and PTEN positive. Did SRS on on largest brian, then WBR alongside Temodar in January/Feburary '15. Started Tafinlar/Mekinist combo with Temodar in March with steroids on and off, and have been on this until present. He had 2 convulsion type seziures, one in April and another in July, put on Keppra. He has a terrible left leg limp due to largest brain tumor on his right side.

He displayed stroke like symptoms Tuesday morning and was admitted to the hospital for tests. Found new brain lesions and determined he had focal seziure. He was getting ready to be discharged and then had a terrible episode where he did not make sense, could not understand commands or answer questions, or knew his family. It took almost 12 hours to get over this and still was not 100% in speech. It was determined he had another focal seziure and has another terrible one where had convulsions and speech/communcation issue again on Thursday evening. He is completely weak, unable to walk, can barely feed himself, is alert but memory is shot, not even knowing the age of his 9 week old daugther or what happened on 9/11 although he is a combat veteran, having served in Iraq and Afghanistan.

His Dr. at MD Anderson communcates with his oncologist here in Louisville, KY and they've determined they want to possibly do SRS on largest brain lesions, wait a little time, then do Keytruda along with Tafinlar/Mek combo, but said if no improvement after 2 doses, that is all they can do for him. Drs believe there is a little to no hope on Keytruda working because of the steriods he is on. However, he is not in a place to stop steriods but possibly wean down.

I am nervous to pursue SRS,as his brain is already completely taxed and inflammed. I am so concerned for his quality of life, what I should do, if he will make it to see Christmas, etc. Thoughts anyone?


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Anonymous's picture
Replies 4
Last reply 9/15/2015 - 2:51pm

I am wondering what is the hospital stay duration and recovery time (e.g., able to do a household activities) after these two procedures. Thanks. 

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phr's picture
Replies 2
Last reply 9/11/2015 - 7:19pm
Replies by: phr, CHD

Hi all, I was diagnosed with melanoma from a mole I spotted in the middle of my back last month. I had had a complete check (all clear) last October by my dermatologist. So it must not have been there in October. SHe removed it , stitched it up and sent it off for a biopsy. Here are the details:      

It is 1mm deep, but only on part of it.  They call this an “Intermediate” depth. It had an in situ component on the remainder. There were no ulcerations present. THere was no mitosis identified. Histology showed superficial spreading (i.e. spreading more on surface than internally).

All of the above are my notes from the followup visit to the derm. The derm referred me to a plastic surgeon at Yale New Haven who specializes in cancer surgery. They want him to cut more out, to make sure there werent any stray cells outside of the area (get a bigger "margin"). Not recommending adjuvant therapy now. The dermatologist is deferring to the surgeon on whether to do a sentinel node biopsy; they seem to think it is on the margin. 

I guess one question from those who've been through it is, if I am on the margin of whether to do a sentinel node biopsy, should I push for it? The derm says no, trust the surgeon, he'e the best and  if he thought i didnt need one, I don't need one. I have read many stories of recurrence, and so it seems to me that with a node biopsy, I could rest a little more compftably going forward. I have great insurance so cost wont be an issue.

I am surprised I am not more freaked out. I am a pretty calm person, and I realize that while this is cancer, it sounds like i got it early and (subject to what the surgeon says ) I am fortunate relative to many others. I feel grateful. And I'd like to hear any thoughts, particularly opinions on whether to push for a SLNB.



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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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