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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Replies by: audgator, LynnLuc, Theresa123, Anonymous, Tim--MRF, Linny

My oncologist told me to "look up" anti PD 1.  I was wondering if someone could explain it to me so I could understand it.   Like to a 2 year old or something;)   I need the information to make a decision about my care.




Stage 4

Every day is a miracle.

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ed kv's picture
Replies 2
Last reply 8/18/2012 - 8:51am
Replies by: Cate

My wife was diagnosed today with stage 4B melanoma.  Primary location in mid back but heavy in right armpit lymph and several spots in R lung.

We live in Michigan but are moving to Houston next week so we can go to MD Anderson.  I'm hoping there are trials there that might give us a chance.  So many details to work through with the move AND the medical stuff!!!! 

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bikerwife's picture
Replies 2
Last reply 8/17/2012 - 7:21pm
Replies by: gabsound, Fen

Monday was an awful day. Went in at 715 for a 4 hour procedure for 2 mets turned into a 9 hour procedure for 6 mets. Dr said they got them and they were barley visible. Still I'm thinking its spreading everywhere mon was rough by tuesday we both were emotionally exhausted.

Wed morning we go in for kidney scan and chest cavity scan. We walk in dr office and dr high 5s Lynn. I'm still wondering so he shows me the scan from 3 months ago it was 9.8 cent and its glowing then he shows me new one it not glowingi say and dr says that's cause its gone. What's in chest cavity is almost gone also we shared lots of tears and hugs with our dr. This drug is awesome.

Gamma knife can be used again and they will continue to monitor brain closely but for know we smile. Lynn says he's slowly crawling back. He says keep fighting keep praying and keep beleiving.

Lots of love
Lynn husband to bikerwife

What God leads u to he will. Lead you through

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CarolA's picture
Replies 2
Last reply 8/17/2012 - 9:54am
Replies by: christie

I can only think of Bonnie Lea who goes to Princess Margaret hospital, I believe.

But I know there are other warriors who might be able to direct Christie in the

right direction to find some alternative care for her husband.   I am sorry that my

mind does not recollect specifics of where to go in Canada, what IS where, in which

province, nor can I remember a specific name of someone on the board.

Hope this spurs something.     We are on the Canadian border and I do know that

Canadians come to Roswell Park Cancer Institute in Buffalo----but at what expen$e,

I am not certain.



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Phil S's picture
Replies 20
Last reply 8/17/2012 - 9:10am

Okay, all these trials are getting so confusing! I am pretty well read on melanoma, but I am a liberal arts kind of person NOT a scientist, so any help would be welcome. My understanding is that BMS has an anti PD1 trial called MDX 1106, which shows on the clinical website with one of the sites at Dana Farber in Boston. Yet, when I inquired about this trial at Dana Farber, they told me this trial wasn't open, and the clinical trial website is not up to date, frequently months behind, well that's a problem! Still, I don't understand why this BMS trial is closed. We are meeting with staff at Dana Farber next week as they said there is an opening in their Genentech trial with anti PDL1 drug, but even after reading about this drug not sure I understand the differences between drugs. I know that Cure Tech, Merck, and Glaxo Smith Kline all have anti pd1 trials and we are willing to travel if necessary. We want to make the right decision for Phil's treatment, but I am on a huge learning curve, as now I heard that tumors that express certain proteins respond better to anti Pd1, yet I don't think his tumors have been tested for these proteins. I need a Jimmy B to just tell me what to do, help! Anyway, Phil has completed six rounds of biochemo at MD Anderson, and has cells frozen for adoptive cell transfer, we are just not sure when we will get a slot, and I want plan B ( it's really plan C, D, or E, but who is counting), in place. Thanks for all the support, I love the mpip bulletin, dealing with stage 4 melanoma is hard enough, it's nice to have a place to go to where people truly understand! Valerie (Phil's wife)

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lrkg1234's picture
Replies 1
Last reply 8/16/2012 - 10:53pm
Replies by: washoegal

I'm so happy that Scott finally got a doctor's appointment.  I called quite a bit and nagged, but it's done now!  At least we can get the information that he needs in order to make a decision on how he wants to approach the treatment. 

First we are going to Dana Farber and then we are driving the next day to Johns Hopkins. It's such a relief. 

Thanks to all that responded to my frustrated post.  It was good to know I was not the only one dealing with setbacks and constant delays.  Horrible that it has to be that way.  Experiencing a crisis while being patient does not really work.

I didn't know it was going to be this hard/slow to get answers.  It's a long road ahead, but it least we are moving forward.  Hopefully we can sleep tonight.



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mama1960's picture
Replies 8
Last reply 8/16/2012 - 4:51pm
Replies by: mama1960, TSchulz, Anonymous, sharmon, aldakota22

Hi everyone.

This forum was a life saver for me when I started this journey. I was diagnosed in August 2008. Had tumor removed from sole of right foot. Did the year of Interferon. Scans have been clear.....until now. Had a yearly scan a couple of weeks ago, and it came back abnormal. Two spots lit up, one in a lymph node in my right groin and one in my colon. Sent the scan over last week to a radiologist to see if he thinks we can do a needle biopsy, or if it will have to be surgery. No word yet. Apparently he was out of town for week and might look at it today. Of course everyone is telling me it might be nothing but and infection or something, but in my mind I think it will be the big M. Will posting here, and look forward to the wonderful support that has always been here.

It is what it is.

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Gene_S's picture
Replies 5
Last reply 8/16/2012 - 11:36am
Replies by: Linny, Gene_S, Anonymous

"melanoma and skin cancer – 96 per cent of people with melanoma did not have enough vitamin D in their bodies indicating they hadn’t had enough sunshine; and half of the melanomas were in places the sun don’t shine on, according to US research".

This is why all melanoma patients need to be tested for a vitamin D-3 deficiency!


Best wishes, Gene

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Anonymous's picture
Replies 4
Last reply 8/16/2012 - 10:08am
Replies by: Oncologyreport, Charlie S, Anonymous

I've done a search of the board and did not see this listed. My apologies if it's been posted before. Seems like it's a very accurate method of detecting Melanoma on the skin. Approved in Canada, soon to be Europe and 2013 for US? Not certain of the time line...I was looking at an older video clip on YouTube.


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Gene_S's picture
Replies 25
Last reply 8/16/2012 - 9:29am
Replies by: jag, Charlie S, Randy437, Gene_S, Anonymous, Linny, Fen, MikeWI, audgator, cloudbrows

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ramannjr's picture
Replies 11
Last reply 8/15/2012 - 11:04pm

In April 2006, I found a black mole on my right ankle.   After having it punch biopsied by my dermatologist and looked at by pathologist, it
was determined it was 1.4 mm melanoma.   I had WLE done and no chemo/immunotherapy.    I remained fine with no new moles or anything
unusual until April this year.    I had a marble sized raised bump on my upper right thigh.    After months of testing, I found out last
week that it is a melanoma from the original melanoma.   They had to send it to the Mayo clinic to confirm with an expert.   Last Thursday,
I met with a surgical oncologist and oncologist.   I had surgery on Friday, another WLE and SLN dissection.    It turns out that there
were no traces of melanoma in the WLE site, but there are a couple of microscopic traces of melanoma (I believe 2 and they are less than 0.4
mm).   The oncologist on Thursday, said best case scenario (no melanoma in lymph nodes, all WLE site is clear and PET scan is clear),
I would have to do weekly Interferon shots once a week for a year and be PET scanned every 3 months.   My PET scan is scheduled for this
Tuesday.   I'm hoping and praying it has not spread beyond the lymph nodes in my right groin.    The surgeon already is recommending a
lymphendectomy of the right groin area, but is awaiting the PET scan to determine if surgery is required anywhere else.    I meet with the
oncologist to go over everything next Thursday and come up with a plan.   Do you have any idea what I might expect to be done?   I'm
very scared right now.  I'm 38 yrs old, married happily with an 8 month old son.   I'm hoping I can get through this.   Is there a
chance for a cure in my situation you think?   The surgeon told me 24% 5-yr survival rate, which has really scared me.   That was a general stage IV number? 

I feel okay now and I'm healthy, do you think I have many years left?

Does anyone know of a good oncologist in the St. Louis area that specializes in

melanomas?   I'm currently working with Dr. Ryan Neff on the surgical side and

Dr. Hsiao O. Hu on the treatment side.    I'm mainly going with them based on insurance tiering. 



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Gene_S's picture
Replies 2
Last reply 8/15/2012 - 10:59pm
Replies by: Anonymous
Vitamin D can improve your health - in so many ways.
Vitamin D expert, John Cannell, M.D. will talk about this
on our next show ---> post your questions - here:
This Thursday @ 9pm est
(2) ways to hear our show - LIVE!
By phone - call:  760-569-7676
And, enter your access code:  815676#
or, listen to the show by computer with the link below:

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

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Randy437's picture
Replies 5
Last reply 8/15/2012 - 10:56pm
Replies by: Anonymous, Randy437, jag, Nell

The news was all good on Monday.  NED in both brain and body.  My CTs will now be every 4 months instead of 3 months.  Brain MRI remain a 6 months.  I do not have the BRAF mutation, but qualify for Yervoy if I have another met (I've had one surgically removed from each lung, brain and small intestine).  Also, Siteman Cancer Center in St. Louis is participating in a trial of a drug for those without the BRAF mutation).  Of course I'm thrilled to be NED, but it's helpful to know there are options.  Those of you who have been there know this - but having the interval between scans lengthened is like a snow day in grade school.  Blessings to all who fight this beast and may your news be hopeful as well.

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Charla's picture
Replies 2
Last reply 8/15/2012 - 10:28pm
Replies by: awillett1991, Erinmay22

My mother (90) has been on Zelboraf for 8 months with great results.  The only problem we are having now is severe joint pain in the leg with the melanoma.  This is keeping her from moving around and staying active.  We have been trying to handle the pain with over the counters but will be starting narcotics today.  Any other suggestions and has this pain come and go for anyone on Zelboraf?




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Angela C's picture
Replies 1
Last reply 8/15/2012 - 9:16pm
Replies by: melissa ann

Hi everyone.

Yesterday I got the results of my scans four months out from IL-12 TIL at NIH. Scans have been stable the last three months. This time there was a small amount of growth, about .7cm. They said they have seen tumors grow one month and shrink the next, so they haven't written this treatment off as a failure for me yet.

However, they want me to start doing my research into the possible next step, should September's scans still show growth. I am BRAF negative and have pretty much done every treatment that is available. They suggested looking into a MEK inhibitor trial, but for someone without the BRAF mutation. We are told that there are some places doing this. I'm not familiar at all with MEK. Does anyone have any experience or insight into this treatment for someone without the BRAF mutation?



Be kind, for everyone is fighting a great battle. -Plato

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