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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Michelem's picture
Replies 8
Last reply 11/18/2013 - 5:06pm
Replies by: kpcollins31, Janner, Michelem, Anonymous, SABKLYN, noisy77

My husband is stage three, currently recovering from surgery to remove a melanoma on his foot and eight lymph glands. Six of the glands had been completely taken over by cancerous tissue. We are told chance of recurrence is 50%. Iam thinking this may be low, given the level of involvement.

We are waiting to learn if he has BRAF gene and could be eligible for that trial.

otherwise, our doctor has told us we are eligible for a randomized interferon/ipi trial. We have read that interferon is not effective, and has many side effects, some know my husband is considering watch and wait, vs a randomized trial.

it is a difficult time,mdifficult decision. I am interested I hearing decision factors and experiences of others.

i also see there are other trials, something called IL2? I will ask our doctor about these.

thank you for thoughts and sharing!


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MattF's picture
Replies 6
Last reply 11/17/2013 - 9:00pm
Replies by: Tina D, 94z28joe, Anonymous, MattF, noisy77

So i got the scans and tests done for the Ipi v Interferon clinical Trial at UCLA for my head melanoma....


PET Scan verbal report came back with 2 hot directly under the dissection site and the other behind my clavacle. 

I am only 5 weeks out of surgery....this of course put me on hold for that trial and we await the complete PET-CT report.

5 weeks after they remove my parotid gland and 60 lymph nodes....I get two things that prelim reports show as hot perfectly round this normal wierd etc?

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Anonymous's picture
Replies 3
Last reply 11/15/2013 - 8:22pm
Replies by: POW, Anonymous
Mutation Landscape in Melanoma Patients: Clinical Implications of Heterogeneity of BRAF Mutations
Br. J. Cancer 2013 Nov 05;[EPub Ahead of Print], L Heinzerling, M Baiter, S Kühnapfel, G Schuler, P Keikavoussi, A Agaimy, F Kiesewetter, A Hartmann, R Schneider-Stock
Research · November 14, 2013


  • BRAF analysis from the primary tumor and multiple metastases showed a high degree of heterogeneity among patients with melanoma, with almost 20% having discordant BRAF-mutation results among different metastases.
  • This heterogeneity may have far-reaching clinical implications for treatment planning using molecularly targeted therapy. A single biopsy may be insufficient to determine BRAF-mutation status.

- Richard Bambury, MD


Background: The detection of V600E BRAF mutations has fundamental clinical consequences as the treatment option with BRAF inhibitors such as vemurafenib or dabrafenib yields response rates of ∼48%. Heterogeneity with respect to BRAF mutation in different metastases has been described in single cases. As this has important implications for the determination of BRAF status and treatment of patients, it is essential to acquire more data.

Methods: A total of 300 tumour samples from 187 melanoma patients were analysed for BRAF mutations by pyrosequencing. Equivocal results were confirmed by capillary sequencing. Clinical data with respect to melanoma type, tumour site and survival were summarised for 53 patients with multiple analysed tumour samples (2-13 per patient).

Results: BRAF mutations were found in 84 patients (44.9%) and 144 tumour samples (48%) with BRAF mutations in 45.5% of primary tumours and 51.3% of metastases, respectively. In 10 out of 53 patients (18.9%) where multiple samples were analysed results were discordant with respect to mutation findings with wild-type and mutated tumours in the same patient. Mutations did not appear more frequently over the course of disease nor was its occurrence associated with a specific localisation of metastases.

Conclusion: As heterogeneity with respect to BRAF mutation status is detected in melanoma patients, subsequent testing of initially wild-type patients can yield different results and thus make BRAF inhibitor therapy accessible. The role of heterogeneity in testing and for clinical response to therapy with a BRAF inhibitor needs to be further investigated.

British Journal of Cancer
Mutation Landscape in Melanoma Patients: Clinical Implications of Heterogeneity of BRAF Mutations
Br. J. Cancer 2013 Nov 05;[EPub Ahead of Print], L Heinzerling, M Baiter, S Kühnapfel, G Schuler, P Keikavoussi, A Agaimy, F Kiesewetter, A Hartmann, R Schneider-Stock

This abstract is available on the publisher's site.

Access this abstract now


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Anonymous's picture
Replies 3
Last reply 11/17/2013 - 9:01pm
Replies by: Tina D, Linny, washoegal


Has anyone ever had a bump that looks like a white head or a pimple on the scar where the sentinal lymph nodes were removed? I have what looks like a pimple and a bump underneath. It's white and shiny. Can Melanoma ever be these colors?

Thank you

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SteveH230's picture
Replies 18
Last reply 12/3/2013 - 2:14pm

I am a long-time 'lurker' here and have posted a few times.  I wanted to let you all know how much I appreciate the knowledge, encouragement, and advice shared on this board.  

My sweet Heather passed away on Saturday, Nov. 9 at the young age of 33.  She was a beautiful redhead, we were married in July 2012, and she was given the stage IV diagnosis 6 weeks later.  She was most recently on the Merck PD-1 trial and scheduled to go in for her 12-week scans yesterday at Vanderbilt.  Obviously the treatment didn't work on her, and I just think she was too far along for it to help her very much.  Though she had met the inclusion criteria to get in, her little body was weak and just slowly gave out.  We didn't expect to lose her anytime soon, but I am comforted that I was holding her, at home, and she was not in pain.  

She had been in treatment since October 2012 and had mets in the abdomen, liver, spleen, bone, and brain.  The abdominal/pelvic tumors were causing a lot of pain and digestive problems, but we got the pain under control for her last couple of days with stronger meds.  I am so proud of her, she never complained or got angry with her situation, even while doing IL-2, IPI, SRS, carbo-taxol, whole brain radiation, and finally anti-PD-1.  She loved the Lord, and I'm comforted knowing that she has a new body in heaven and no longer suffering.  

A month before she passed, she helped raise over $22,000 for melanoma research and awareness.  She wanted to be healed so badly so she could devote her life to helping and encouraging others facing a grim diagnosis.  I think she had 600 people at her memorial service this week and equally as many at the visitation.  My heart goes out to all who are fighting this awful disease and their family & caregivers.  

Bless you all,




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POW's picture
Replies 7
Last reply 11/20/2013 - 9:31am
Replies by: POW, casagrayson, GAngel, Swanee, Maureen038, SBeattie, Anonymous

Well, here we are 2 1/2 months after the roll out of the "new and improved" MPIP web site. While it is new, I can't say that it is much improved, although all of the glitches we reported during the first month have been fixed. Which is a good thing.

Unfortunately, one of the most valuable features of the old web site-- the threaded archive of old posts-- is gone. Many of us here have repeatedly requested that this feature be revived but no one from MPIP has even acknowledged our requests. Total silence. So I conclude that we are never going to see that feature again.

Such a shame! Such a loss of valuable experience and advice! It makes me wonder if MPIP hired the same web development company that Obamacare hired. 

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mclaus23's picture
Replies 1
Last reply 11/15/2013 - 8:11am
Replies by: POW

Hello well down to last treatment before chemo (which my dad won't do)is Mekinist. We cannot combine with the equivalent of zelboraf because his kidneys failed from that and he almost died from pd-1.

yeh, doesn't sound good. Had anyone been on just Mekinist and if so what were Side effects?

thanks much!!!!

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noisy77's picture
Replies 2
Last reply 11/15/2013 - 9:17pm
Replies by: noisy77, awillett1991

Hello -

My mom is on the ipi / anti-pd1 trial (given sequentially).

After 3 months of anti-pd1 my moms tumor (in her thigh) grew 29percent .  She is now on IPI.  Has anyone been on Pd-1 and had an increase in tumor size followed by a decrease?

Thank you!

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Sunday - Nov. 17th - Jonathan Landsman and Nicholas Gonzalez, M.D. talk about natural ways to stop skin cancer.  Join us anytime from 9am to 9pm EST.

Discover the real cause of skin cancer + much more.  Details below:


Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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bethwkiss's picture
Replies 10
Last reply 11/15/2013 - 9:44pm

 Wait and see was what my doctor said I have a 60% chance it will come back and at stage 2b its really all we do so just wait humm I am new to melanoma had my surgery October 2 nothing in the limp nodes and got clear margins it was the thickness of the cancer that put me at stage 2b 8 mil I guess I am at a loss of what I should be doing other then going to the doctor and where he sends me to go I feel like I do not have the knowledge as of yet on how or what I do other then making sure I  keep a eye out for new things on my body or the old moles looking strange I will say I am concerned because the we just wait to see was told to my brother and when it came back it took him with in 2 years he past in 2005 I would like to not follow him at this time not that I wont love to see him when my time comes I'm just not ready for that for a long while some days I just go around like it was nothing and others Its there big as a bus I know my body and I feel tired all the time and my bones hurt and I just feel like crap all the time but still I work and keep going I just don't want melanoma to take someone els in my family and need more research that don't confuses me even more feeling overwhelmed 

Lisa Newcomb  

Never give up !!!!!!

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geminilion's picture
Replies 28
Last reply 11/16/2013 - 6:43am
Replies by: Mat, Anonymous, Janner, POW, geminilion, casagrayson

Hello all! I haven't been on this forum for a few years. Had my melanoma (stage 1) diagnosed in 2002, wide local insicion, satellite nodes removed and benign.


In July I had a chest x-ray as part of my  yearly physical. X-ray showed a 5mm nodule. My doctor ordered a CT scan and nodule showed up again. He decided because of my symptoms and the fact I was a smoker he should have do a PET scan.


Results came back and they weren't good. Showed a 3.5cm soft tissue mass, a 1cm pulmonary nodule and right paratracheal and hilar lymph nodes suspicious for metastases. Both the mass and nodule are suspicious for malignancy.


I went to a thoracic surgeon today and he told me he didn't think it was lung cancer but melanoma as it didn't look like the  mass was the primary. I had a fear that the melanoma would come back but because initially it was stage 1 way back when I didn't obsess over it.


I have to have a series of tests of course to see what's going on. I'm really scared! I got so much encouragment here in the past and hope of course. God bless you all brave warriors! I am praying that all of this will have a positive outcome but if it's spread I'm afraid it wont be.

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nancyg's picture
Replies 3
Last reply 11/13/2013 - 9:51am
Replies by: Anonymous, JerryfromFauq, POW


I know my husband's melanoma does not have the Braf mutation.... So what does that mean for him and his prognosis?? I have read on here that people with Braf can have certain treatments that would not work on non braf melanoma....does the Braf mutation make the Melanoma more  aggressive or does  it really have no bearing on outcomes??  Does having the Braf mutation  cause the melanoma to spread faster??

All of this info is hard to digest.. I would appreciate any input

Thank you very much,



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sofistef's picture
Replies 6
Last reply 11/13/2013 - 5:05pm



We had the appointemnt with Dr Atkins this afternoon. He thinks systemic treatment is the best apporach right now as he fears the surgery will not be a solution because there is a hilar lymph node that is borderline and it might me affected. I have an order for adbominal and pelvis CT and and MRI that I hope will show nothing. Bloodwork was normal. My head is spinning and it's hard to find an epithet to describe the state of fear I experience right now! Unforunatelly the are no more seats on the ippi/ nivolumab I was hoping I can enroll and this upsets me ! I feel like stupid melanoma was ahead of me this time as well, I'm sorry I was not agresive enough to convince my doctor to remove the lung tumor while it was 5 mm , I accepted to wait 2 more months! I did the same thing 3 years ago when the derm told me not to worry about the mole, as it was nothing!!! I hate the odds I'm presented, but I know I must do whatever it takes be among the lucky ones to respond to whatever treatment as my kids need their mom! I hate this even more as I never ever in my life used a tanning bed or was a sun worshiper, but yet this happened to me!

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Anonymous's picture
Replies 6
Last reply 11/13/2013 - 8:26pm
Replies by: Anonymous, ecc26

Any thoughts whether this would work?  My friend is not allowed in any other trial but MDA has offered the TIL for him.  I worry about the toxicity.

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hdelancey23's picture
Replies 13
Last reply 11/15/2013 - 7:18pm

My Mom has been fighting Melanoma for two years now.  She has been so strong and brave through out this struggle.  We just got the news that there is nothing left to do and suggested she go into Hospice this last Sunday.  I am very sad about this news and am not ready to let my Mom go.  She is so young, she will be 48 on November 28th.  It hurts so bad knowing that our time is so limited.  I pray every day that God gives her peace in her heart and takes her pain and hurt.  I feel like I should have done more to be there for her and spent more time with her.  Our family will never be ready to lose my Mom, and I don't see how we are going to make it through this.  I just don't really know what to do.  My heart hurts right now but what keeps me going is that I know that God will take her home and that she will be looking down on us when she does go.  Please if any body has any advice on what to do, how to cope, encouraging words and most importantly what I can do to help my mom right now please comment. 


Thank You.

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