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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Julie in SoCal's picture
Replies 9
Last reply 9/12/2014 - 4:57pm

Hi Friends!

Do the happy dance with me!  I had scans this week and just wanted to post and say that I am still NED (or NERD- no evidence of recurring disease)!

Late last year had 5 rice grain to marble sized in transit mets pop up on my upper arm after 5 years of being NED. I had all 4 doses of Ipi with a predictable combination of side effects (headache, pituitary problems, flu like symptoms and arthritis like symptoms), but I watched each met melt away.  Ipi has been a homerun for me!

I know this isn't true for everyone here, but I wanted to post this as encouragement to others.  




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Anonymous's picture
Replies 8
Last reply 9/14/2014 - 5:15pm
Replies by: Ginger8888, Anonymous, grandtulba, fortiz, arthurjedi007

Hi All, 

Ipi price is very high for me, is there any way can i  get it  cheaper ? im from Cairo - Egypt 

Please Advice 

Thanks  Again 

Ahmed Mukhtar

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scragfinch's picture
Replies 20
Last reply 9/28/2014 - 1:23pm

Hello everyone. I'm new and would like some advice. I live in the uk. I was diagnosed with melanoma on my knee at the beginning of September. When I received the diagnosis from my dermatologist I was in shock. He said he would do a wle. I didn't know what to ask and just wanted to get out of there. The dermatologist said it was thin and that 95 percent of people he sees are ok. I went home and did some research.

When I went back for the wle I found out breslow depth was 1.38 with mitotic rate 1. I asked about sentinel node biopsy and he said it would give no advantage and he felt nothing in my lymph nodes. I get the results of the wle in 3 weeks. Both my parents had cancer. My dad died of lung cancer which spread to his brain in 2012 so I have seen what a terrible disease it is. Back then I had to fight for his diagnosis (they wouldn't do a scan) and aggressive treatment. Do you think I should get a second opinion now and push for scans and blood tests? I want to do everything I can. I'm 34.

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DZnDef's picture
Replies 9
Last reply 9/20/2014 - 12:42am
I had a fresh set of CT scans done yesterday and reviewed them with the oncologist in the afternoon.
Dr. O'Day walks in and says "Good news.  You've had barely measurable growth on two nodes no growth on the others and no new metastases".  He then turned to his colleague and said "her immune system is keeping her cancer in check".   He doesn't want to see me for another 4 months.
I see my Naturopath next week.  We'll see what tweaks she suggests to my approach.  My next review, I want Dr. O'Day to say none of them grew (dare I hope for shrinkage?)
I'm very happy with these results.  As far as I'm concerned, the existing cancer is welcome to stay right where it is and serve as a physical reminder for me to keep my new healthy habits.  As long as it stays put.
If it does continue to grow (he said it could easily double in size before it would cause me any problems) I will at that time begin whatever is the best available medical treatment (Ipi, Anti-PD1, Anti-PD1L, BRAF combo, etc).
I would like to point out that I discovered my disease accidentally via chest x-ray, not because I was having symptoms.  And although it is Stage IV unknown primary (it is in my lungs) it is an "early" stage IV.  Which begs the question:  Is the slow rate of growth due to the lifestyle changes I have made or is it merely the normal rate of the disease when it is this early?  There is no way to know for certain.  I choose to believe my lifestyle changes are playing an important role but even if I am wrong, it has allowed me to enjoy a quality of life far superior to what I was living before and the drugs will still be there for me should I need them.
I am counting my blessings.  I hope this post finds you all feeling well.

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Debra Cannon's picture
Replies 2
Last reply 9/10/2014 - 10:09pm
Replies by: BrianP, Bubbles

Anyone with Stage II b getting immunotherapies or other types of adjuvant therapeis after tumor removal and sentinel lymph node biopsy?

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Bristol-Myers Sues Merck of Patent Infringement on Keytruda - 1 day ago Merck said the lawsuit was without merit and that the company was confident it wouldn't be prevented from marketing pembrolizumab. Similar patent litigation among the companies is under way in Europe.

Merck said in an August filing to the U.S. Securities and Exchange Commission that the Ono patent was invalid.

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

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Anonymous's picture
Replies 6
Last reply 9/11/2014 - 12:39am
Replies by: kylez, Anonymous

Hi can anyone tell me what treatment they Are on for their brain mets? Already been told that vem and wbr have failed. Also srs wont work cos location of mets. Therefore do I have any other options to use? Heard it will take to Long for ipi to work

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newmanmark's picture
Replies 6
Last reply 9/14/2014 - 9:20pm
Replies by: Squash, newmanmark, DZnDef, kylez

Hello All,

I was diagnosed with stage 3C melanoma in Octoboer 2009.  I did all of the conventional treatment at that time.  In October of 2012 it returned to my pancreas.  It started at 2cm in size and is now 6cm.  It is at the head of the pancreas which makes surgery difficult.  They would have to do a whipple procedure.  I'm not sure that's where I want to go.

Since the original treatment I chose to go the alternative path and have done many therapies.  The melanoma hasn't spread any further but the tumour on the pancreas continues to grow.

I now have to make some decisions on how I will proceed.  I will likely have to try a BRAF inhibitor (I am BRAF positive) or do a clinical trial that involves a combination of BRAF inhibitors.  Anti-PD1 is only offered on compassionate use in Canada and I have to fail a BRAF inhibitor before they would give it to me.

I feel completely lost and am not sure what to do.  I'm looking for a little guidance.  I am 35 years old with 2 young daughters.  I have to continue fighting.



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Exhausted's picture
Replies 1
Last reply 9/11/2014 - 2:43pm
Replies by: CHD

Sorry this is alot less severe than the norm around here, but I had a mole that my dermatologist wasn't worried about but had him remove it anyway and it came back moderately atypical.

Of course this isn't the worst thing in the world, but I am looking for information on how much this increases my risk for melanoma and how worried I should be about some of my other moles that seem slightly off.  I don't want to be so aggressive that I look like swiss cheese, but I do want to make the best choices and nip any potential major problems in the bud.


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Replies by: arthurjedi007, kylez, RJoeyB

I was wondering if 2 days after my last radiation treatment is too soon for an MRI and PET/CT scans?

Basically my long distance doc on 8/13 did a PET/CT and wanted radiation done by 9/3 and wanted to do a brain MRI and another PET/CT on 9/24. But he wanted me to do radiation locally since I've had radiation there before. If the scans are ok then I can continue with the PD1. If the scan shows anything in the brain then I'm off the PD1.

So in reality locally they did a brain MRI on 8/21 in preperation for the radiation. They also did a lower spine MRI on 8/21 and I got confirmation from my long distance doc we needed to radiate 2 spots in my spine. Basically there is 1 tumor in my skull that has grown out to my scalp and inward towards my brain pressing on the dura. Nothing is in my brain at that scan though. The 2 in my spine I'm not sure how much soft tissue involvement there is but they want to prevent the occurance last winter where another spot in the spine almost paralyzed me so hit them now instead of later.

So finally I got my first zap to the spine today 9/9. Insurance was complaining because like the nurse said my local radiation doc wants to do it the more precise right way. They still haven't approved the head yet but they think they should be able to start it on 9/12. Basically I get 30 gray in 5 fractions to each spot of the spine and head. So basically each spot gets 6 gray per zap every other day. I say per zap but really it's several different zaps from various angles. I think I counted at least 6 zaps to the one spine spot today. So probably enough to get them to shrink I hope and hopefully the PD1 will then take care of them like it's shrinking over a dozen other tumors. They alternate which spot in the spine every other day. The head they will also do every other day but in combination with (or actually after) whatever spine spot for that day.

So I'm wondering whether I should just stay home and recover from the radiation and get the newly FDA approved PD1 from my local onc doc on 9/24 who I still see for my xgeva shot. Last time I saw him he said I needed to stay on the PD1 so it should be no problem as long as I give them enough of a heads up so they can take care of the insurance. Then after the radiation and some rest and recovery I can go to my long distance doc for these re-scans.

So not only am I concerned about not really being strong enough to travel the 500 miles to the long distance onc doc although I feel pretty good now. I'm wondering if scanning so soon after radiation should even be done. I remember reading one person's story who was on immunotherapy, did radiation and the doctor visibly saw the tumors shrank. So that person's doc did not want to scan yet because he saw an immune response and did not want to mess up that delicate little understood balance of the immune system if I remember that person's story right.

I'm very thankful to Joe so I was able to question my radiation doc so he changed his initial idea and is doing my head the better way. You folks are the best.

Any thoughts or suggestions are appreciated. I'm just not sure what to do.



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Resilient4Life's picture
Replies 5
Last reply 9/12/2014 - 2:53pm


Hello everyone,

This forum has been a sanity saver for me, and I thank you all for your input. My surgical consult is Friday and am illierate about the "justification" or rationale for sentinal node biopsies. I've looked at other sites and come away with an ambiguous result.

One 7mm area staged 1A by this forum, Clarks level II, shallow thickness 0.25mm. The location is near the shoulder area upper left arm, approximately 1-2 inches from a prior surgical scar (impingement) and 3-4 inches away from the apparent location of lymph node(s) in the underarm area.

Questions: what are the top determing factors for a SNL? Location and depth or something else? Would it be unrealistic or unwise to push for a needle biopsy? Should I be concerned at all? Thanks again.




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dirks7171's picture
Replies 7
Last reply 9/11/2014 - 5:40am

I recently underwent WLE surgery for malignant mucosal melanoma of the anal canal.  I had a large tumor (3.8 cm) that had grown into the submucosal tissue by the time it was surgerically removed in the beginning of August.  I live in Maryland where my surgery was performed and am in the process of considering adjuvant therapy now -- and am at a crossroads.  My last PET scan in July showed no metastisas but I know this is an aggressive type of melanoma cancer that can spread quickly.  My biopsy surgery pathology clearly identified the cancer as malignant melanoma.

My surgery pathology slides are being examined at Memorial Sloan Kettering.  My  doctor there is Richard Carvajal - Director of Developmental Therapeutics.  When I met with he and his team in July before my surgery (after receiving a diagnosis of malignant melanoma of the anus) and prior to examination of the slides (now underway) he suggested I might be a candidate for a chemotherapy combination therapy consisting of two drugs that have been around for a while - cisplatin (given interveniously) and temador (temazolomide) - given in pill form.  The IV and pills are given for a week - followed by a three week lapse.  This process is repeated six times.  The therapy is based on a clinical study done in China of individuals diagnosed with muscosal melanoma.  The outcome of the study suggested that the therapy prolonged the lives, on average, of the individuals who were given the chemo combo. 

Just wondering if anyone in the network has undergone the chemo combo at Sloan or any other medical facility -- or has any insights into how effective it might be?  Also wondering about experiences working with the mucosal melanoma team at Sloan.  Any suggestions on how to maximize patient-doctor communications and treatment outcomes. 

Finally, I don't know if I am C-Kit or BRAF mutation positive yet -- or much about the overall pathology biology.  Does anyone have suggestions on what type of immunotherapy might be available to me given specific mutations or other aspects of the malignant mucosal melanoma (anal) that I was diagnosed with (e.g. Gleevec)?

As you can tell I'm a newbie at this and will try and give as good as I get from anyone who can shed any light on my questions.  Thanks in advance for any information and interest.  I am frightened but hopeful.

Chesapeake Guy!







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missourimom2008's picture
Replies 7
Last reply 9/29/2014 - 9:16am
Replies by: oldblue, Anonymous, missourimom2008, malika, Tim--MRF

My husband was diagnosed a few short months ago with Malignant Melanoma, right before his 25th birthday. He has undergone 1 surgery and his pet scan just came back negative for which we are feeling very blessed. We have however been referred to a specialist at Barnes-Jewish Hospital in St. Louis due to the fact that he has a mitotic rate of 15....I know his Oncologist said ideally it should be 0, does anyone have any answers, advice, experience or information about having such a high mitotic rate? I have done some research but just am not finding much. Thank you!!

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