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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jmmm's picture
Replies 4
Last reply 12/2/2011 - 4:56pm
Replies by: lhaley, HelperDaughter

My husband had a craniotomy yesterday. All went well. The surgeon had to leave a little bit of the tumor, so as to not cause any motor damage. Before he was even out of surgery, the neurosurgeon was telling me that he would need WBR. The oncologist is recommending gamma knife. We're so confused. What are pros and cons to each? How soon after a craniotomy can they safely do radiation. He's just begun recovery from the craniotomy and we're already overwhelmed with the next step. Any advice would be appreciated.

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Anonymous's picture
Replies 5
Last reply 12/2/2011 - 3:20am

Could anyone on this forum tell me is Mek trial is effective after zelboraf?

I have read that braf/mek combos are effective treatments.

Can people still participate in Braf/Mek trials after taking zelboraf?

don't back up, don't back down

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mom3girlsFL's picture
Replies 14
Last reply 12/1/2011 - 8:34pm

Good Morning,

Had 3mth onc appt yesterday.  Expecting to sched PET scan as we discussed doing every 6mths, last PET was Nov 2010 (clear).  Onc says insurance will not pay for PET unless disease evident (?) and had clear CT of chest, abdomen and pelvis in april 2011.  Long story short - positive node removed last year.  PET showed more. More nodes removed, several w/mel.  Went on interferon after additional node removal.  PET after showed new node.  Had "radical" node removal, several nodes again w/mel.  Off interferon, PET in November 2010 clear, CT chest, abdomen, pelvis clear in April 2011.

Come home and discuss w/hubby.  All is well...until this morning.  Hub wakes me up at 6am says he's been up since 11pm thinking about all this. " Is insurance the only reason not doing PET?  Let's see if we can get one ourselves...Don't you understand what the PET does? I know you had CT, but what about your brain?..." and on, and on, and on...

Please, please don't be mad at hubby.  After I settled with his bombardment I truly understand he is coming from a place of love (although he had an odd way of showing it sometimes).  I told him to call the onc.  Don't know what else to say.  We all deal w/our battles each morning when we decide to think about it all day or go on with the beautiful gift of another day we have.

I hope I am not being ignorant and just assuming if the onc is okay, then I am okay.  On a side bar - this is not my original onc it is a 2nd opinion onc after the 1st onc didn't know what to do after my very first node "lit up" on a PET - at the persistence of my hubby we went to the 2nd onc for our treatment plan.  Basically, my hubby "saved my life" so I do value his opinion.

Thanks for your input.  Hope I didn't get too confusing for you.


Do not fear tomorrow, God is already there.

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Lisa13's picture
Replies 10
Last reply 12/1/2011 - 8:13pm

My 12 week scan was good news and now the 16th week scan after ipi is still good. Had my scan today and was told I have no new mets anywhere.  The mets in my lungs are still shrinking (slowly) and the rest are remaining stable.  My Dr. was very happy and said he'd see me in 2 months.  I also asked about getting a brain MRI since I had 2 brain mets gamma knifed, but he said he's not concerned, unless I have symptoms.  If the ipi is working on my current  cancer in the lungs, then maybe it will keep the brain mets from coming for awhile.

2 other things I learned today that is also great news.  My hospital in Toronto, Canada starts Anti-PD1 trials and is open to people who've done ipi.  He said if I progressed, I could either do ipi or Anit PD-1.  He also told me that he's had a great few weeks seeing some patients with bad scans at Week 12 and now good responses at week 16 and 20. 

I know there's no cure for this cancer, but at least I can feel happy about things now.  It's also great to hear some Dr's had patients on this drug who are still kickin' it 4 years and some 8 years later!!

One other thing I wanted to mention.  For those of you who may respond to ipi, don't ever think that you now have a couple of months extra to live (which is what these stupid stats talk about). Believe that you could be someone lucky enough to last much longer. A positive mind is half the battle and you can't give up.


Many impossible things have been accomplished for those who refuse to quit

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alicia's picture
Replies 6
Last reply 12/1/2011 - 7:51pm
Replies by: alicia, Anonymous, FormerCaregiver, Lisa13, deardad

Hello friends,

A very close friend of mine was diagnosed 2 yrs ago with stage 3a melanoma.  just 6 months ago it spread to his right lung with a single metastasis.  He had the rt upper lobe removed and did no treatment after.  He just had CT chest abd/pelvis 7 weeks ago with NED.  Just a week ago he began having back pain and dark colored urine.  Did MRI of abdomen and found out today he has widespread metastatic disease to the liver and spleen.  What treatment options are there for this type of disease and are any of you having good results with your treatments for liver/spleen mets.  thanks so much!!!!  you all have been such a great support to me through my battle as well.  much love to you all!!!!


Alicia stage 3 w/ mult primary tumors and lymph node involvement ( 1 yr of interferon currently NED)

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Tracey's picture
Replies 3
Last reply 12/1/2011 - 9:43am
Replies by: Tracey, FormerCaregiver

Hi all!
Looking for a bit of guidance to offer the doctors caring for my husband, Steve.

Steve was diagnosed in June with Leptomeningial Melanoma, that had also metastised in a lymph node and also has a little something posterior spine at about T4. Biopsy of his lymph node tested positive for the BRAF gene mutation and he began treatment with Vemurafenib and has responded really well. Last LP showed scant cells in fluid, lymph node had shrunk over 70%, as had spot on spine. (there is something questionable regarding his spleen, but oncologist is not too worried about it). He had experienced side effects which cleared when his dose was reduced to 720 mg twice a day.

Here's the mystery. He is suffering from nausea and vomit, migraines and sixth nerve palsy over the last week. He had become quite dehydated over the weekend and a bit out of sorts. There is inflammation creating pressure and indicating poor drainage of spinal fluid. Why might that be?

We are living in Kelowna, BC and receiving treatment out of Vancouver. Steve is in hospital where we live and doctors here seem to be at a lose, and they are working really hard and feel he is well enough to continue his treatment. Our team in Vancouver is not offering any guidance except steriods. No one here or in Vancouver has much experience with leptomeningial melanoma except for Steve's case. We certainly don't want him off the drug as we are afraid this is the only option. I think we need any suggestions as to what else to look for quickly. I certainly would be so very grateful for input.

With all my heart, thank you!

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piii's picture
Replies 8
Last reply 12/1/2011 - 7:06am

Just an update, I finished my radiation treatments and they went very well. The Interferon has been a tougher go. The chills are the worst but I will make it through. I did have another mole taken off and came back a-typical they are sending the slides to Brighan and Womens for futher study but to be honest I am not too worried about it. I will worry when they tell me it is something to worry about.



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fenny's picture
Replies 10
Last reply 12/1/2011 - 12:48am

Anyone can tell me which cancer center in the States is the best for musocal vaginal melanoma?  Is Moffitt Cancer Center in Tampa, Florida is good choice? I tried to contact Dr. Hodi at Dana Farber Cancer Institute in Boston, but no response.  My sister had a major operation in Beijing Cancer Center on Nov 16. She had her uterus, vagina and part of her vulva removed and she's now recovering from the surgery while waiting for the new chemo thrapy. I really wanna take my sister to the best melanoma hospital in the USA and we cannot affort to waste money, so pls offer your valuable info about the best one in the States. Thx.  

Make Each Second Count!

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scots's picture
Replies 11
Last reply 12/1/2011 - 12:39am

just completed 11 months of ld interferon. it was not easy but I glad to be done.

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DonnaK's picture
Replies 3
Last reply 11/30/2011 - 10:27pm

Hi.  I have no bad news to report, but I'm just curious if people could share their stories of how they knew their Melanoma had recurred?  What are the warning signs we should be looking for, in addiiton to regular scans and derm checks?  What kinds of headache, cough, shortness of breath are signs of concern, vs. trivial issues?

Thanks in advance for the information! I understand the importance of early detection and want to be as vigilant as possible!


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Kim41's picture
Replies 2
Last reply 11/30/2011 - 11:43am
Replies by: Kim41

Newly diagnosed september 2011 with 1,3 breslow, clarks IV nodular spitzoid type melanoma on left thigh. Started as red ugly bump and had it for about 2yrs. Had Wide excision of left leg and SNB that came back positive for 1 node. Just received call today from nurse that node was positve but on friday she told me nodes were negative. So we told family and friends that things looked good. What questions should I ask. I live in lewistown PA and had surgery at Danville GMC. Not sure if of closest melanoma specialists. I did see that they have a melanoma center at Penn state Hershey Mecical center. Just wandering if thats a good place to go. Any info would be greatly appreciated.

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dearfoam's picture
Replies 4
Last reply 11/30/2011 - 8:35am

Boy have things changed.

Dad has been so very weak, hardly eating and drinking, and sleeping 20+ hours a day. We made it through the weekend with him very peaceful and calm and "glad to be home." No more agitation or signs of distress. He has been in bed most of the time since Friday evening, but managed to get up to the sofa for a little while today (Tuesday). Monday he slept over 22 hours.

His doctors discontinued his Zelboraf treatment and gave a home hospice order. It is a huge relief emotionally. We will see how it goes from here and wether or not we can handle the physical part or have to take up some other options.


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Jerry from Cape Cod's picture
Replies 13
Last reply 11/30/2011 - 6:44am

hello friends,

just a real quick update from rehab.  After 25 days inpatient I was moved to rehab on Thanksgiving.  What a beautiful day!

I want to thank you all for your thoughts and prayers.  Special thanks to Charlie and keeping everybody updated.  Looks like he will have a few weeks here while I regain strength and hopefully the ability to walk.

Special thanks to software program Dragon speaking naturally which allows me to communicate so easily without the use of the keyboard.

I'll keep you all posted as time allows.

Jerry from Cape Cod.




It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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My mother has stage IV melanoma. She has 5 small lesions in her brain and a few other small ones in her lungs. She was diagnosed 8 months ago and did not really respond negatively or positively to chemo. Doctors have recommended WBR but she dies not want to do it. She was also told by docs that they cant perform gamma knife if there's more than 3 tumors. What are the options then?

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dearfoam's picture
Replies 6
Last reply 11/29/2011 - 7:01pm

Dad (stage IV, mets through chest/ lungs/ brain) went to stay out of town with my sister for a week and some days prior to Thanksgiving so hubby and I could get away for a bit. He had started Zelboraf the week before and was on Temodar for several months prior to that. Still on Dechadron 2mg since he's had ongoing brain swelling issues. I sent all the scenarios, drs info just in case, med lists, everything, and all this on top of making sure he couldn't run away like he thought he would try to do!

Anyway, she found him on the floor yesterday morning, aseep under a bedside table. Confused, unable to stand or walk at all. His doctors up here referred him to ER down there, and he is in NICU now with no talk of when he will be discharged. Only semi-alert today, still confused, etc. Had some kind of seizure in the night, apparently. Waiting on that EEG report. Has some sort of infection showing up in urine as well.

We are heading down in the morning to visit.

This is the worst shape he has been in in the 8 months we've known about the Melanoma. Not sure what to expect; none of us do, I guess.


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