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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POW's picture
Replies 1
Last reply 12/19/2012 - 11:13am
Replies by: POW

My brother has run into a financial SNAFU between the VA, Medicare, Medicaid, and Moffitt. (Talk about David and Goliath!)  I posted about it on the Caregiver forum under the title Help! "Financial 'Catch 22'". I'd appreciate it if you would take a look and see if you can offer any suggestions. 

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_Paul_'s picture
Replies 12
Last reply 12/18/2012 - 7:28pm

I just found out this morning that I have been accepted into the GVAX trial at Johns Hopkins!

I originally tried in Sept. but the MRI found a tiny enhancement on my skull under where the primary was. I don't have the results of the second MRI that was taken just a few days ago, but apparently they are confident enough that it isn't a skull met that I can be in the trial.

Who knows if the trial will help me. What I do know is that it feels damn good to be doing something about it, plus regardless of the outcome these trials help expand our knowledge and get us closer to a cure. Even if something doesn't work its helpful since we know not to pursue that avanue further.

My heart goes out to all the people on this site and you are all in my prayers.

- Paul.

To exist is beyond fantastic.

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Angela C's picture
Replies 5
Last reply 12/18/2012 - 3:03pm
Replies by: TSchulz, aldakota22, POW, Swanee

Hey everyone.

Just wanted to put an update out here that I started on a new trial this week. It's a MEK and PI3K inhibitor trial. The drugs are MEK162 and BMK120. I'm in the trial at Massachusetts General. Yesterday was my first day of the trial. I'm already experiencing some vision side effects, which is a little concerning, but the doctor said that my body will adjust to the medicine as I continue to take it and the vision should get better. I feel like I have some light sensitivity, but they said it's most likely fluid buildup behind my retina. Eye side effects are a well known issue with these drugs and I'm seeing an eye doctor ever one or two weeks.

Does anyone out there have experience with a MEK and PI3K trial? I'm not sure that there have been a whole lot of people on these trials yet for Melanoma.

~Angela

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

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sharmon's picture
Replies 15
Last reply 12/18/2012 - 10:02am

The Merck Anti pd 1 trial is allowing the tumor in his lung and side to enlarge, the pain to increase, and the anxiety to rise. This is less than half way through the trial and no one seems concerned. They are staying the course of the the third infusion on the 26th . They are saying it is too soon toknow for sure if it is growth or inflamation. Please pray this works like it is designed .

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ksg1111@sbcglobal.net's picture
Replies 5
Last reply 12/18/2012 - 9:25am
Replies by: POW, buffcody, Gene_S, Anonymous, Josh

I'm scheduled for my first Yervoy treatment, and I'm nervous. What should i expect form the oncologist? Advance prescriptions for possible side effects? Or?

I think my oncologist knows his field, but isn't communicating the patient side of things. How do I know when another doctor would be better, and how important is having someone in the area I live in versus a hundred miles away  for that process?

Thank you very much.

 

 

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Chicago_Michelle's picture
Replies 16
Last reply 12/18/2012 - 1:20am

Hello! My mother just got diagnosed last week with melanoma. She has recently moved to the Chicago area. We don't know what stage it is yet. The next step is the surgery to remove the larger area. She also has a couple of places on her back -- one of these she was told to get checked out a year ago but she never did. 

We have an appt with Dr. Choi at the University of Chicago and another appt this week with Dr. Bines and Dr. Kaufman at Rush. We have an appt with MD Anderson on Nov 2.

Does anyone have any insight into any of these doctors or any other recommendations? We will go wherever we have to go.

Thanks,

Michelle

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akkcak's picture
Replies 10
Last reply 12/18/2012 - 1:19am

I am stage 3 and currently in my 3rd month of interferon. I was told the new guidelines say no scans unless there is evidence. This concerns me. Wondering if others were told this by their doctor?
Thanks!

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jaredmiller16's picture
Replies 5
Last reply 12/18/2012 - 1:15am
Replies by: tuneseo, clientcommon, jupeter41, Anonymous

I am in Afghanistan right now, otherwise, I would have just asked my doctor, which I intend to when I get back in a few months.

I had a mole on my cheek. Although I have several questionable moles, this one was never in question. Just there.

I noticed it has raised a week ago and sure enough, it looked like there was a pimple in it. 100% sure it was a pimple.

Regretfully, I had a meeting with a General that day and did not want to have this massive pimple type mole thing on my cheek, so I popped it.

However, its been a week, the scab feel off and the mole is not even threre anymore.

How bad did I screw things up?

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NYKaren's picture
Replies 6
Last reply 12/18/2012 - 1:13am
Replies by: tuneseo, clientcommon, jupeter41, NYKaren, Anonymous

Hi all,

As most of you know, I just began a trial at Rockefeller University Hospital.  It is a trial of a topical drug called DPCP; if you Google DPCP + Melanoma + Australia, you will see that the drug has had good results in Australian trials. 

They are looking for about 10-12 more recruits.  The team came highly recommended by my docs at Sloan Kettering.  The trial # for ClinicalTrials.gov is NCT01711684.

I went this morning for "Day 0 Visit".  They took 2 biopsies, one each of a mel met and of healthy skin on my leg.  Also did ultrasound, etc.  They put sensitizing doses of the drug on a few places, now I get to watch and wait and hope for a reaction in 14 days.  Yup, hoping for a rash!

I hope this is of help to someone(s).

All the best,

karen

Don't Stop Believing

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awillett1991's picture
Replies 9
Last reply 12/18/2012 - 1:08am

Literally JUST finishing my 2nd dose of IPI and got scheduled for a brain MRI Thursday and extra labs to check pituitary due to extremely low (.03)!! TSH and very minor headache. Cortisol and Total T4 are completely normal. My doc actually called my labs"wacky". Talking about steroids again although I just got off these for stopping Zel. Can anyone shed any light on this? If you have pituitary problems and need steroids can you continue on Yervoy??

Thanks!!

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NYKaren's picture
Replies 6
Last reply 12/17/2012 - 9:06pm

Hi everyone,

I read on here (I think) that someone was retested for BRAF and came back positive.  So I went to Dr. Wolchok and said that I'd read that someone was re-tested after a recurrence...long story short, he called me tonight and told that I AM BRAF POSITIVE!!!  He was surprised, and so was Dr. Halpern (my onc derm who did the biopsy) and they couldn't wait to give me the news!  Needless to say, I burst out in tears on the phone.  I really love my team at Sloan.

So I am to start Zelboraf.  As many of you know, I'm stage IIIc unresectable--had an immediate recurrence after resection, so I've had mel for 2 years now.  thankfully, unless something shows on next week's PET scan, it's remained cutaneous,  but is goes from my scalp down under my chin and one side of my neck.  It is also in my ear canal and I'm at high risk for losing my hearing and my ear.  It has noticeably traveled further down the canal recently.  

I'm in in a clinical trial for DCPC, I actually have an appointment tomorrow...I am due for a biopsy there, and Dr. Wolchok says it's up to them if they want to keep me.  I can't put my hands on the trial documents, so I don't know if I'm allowed to be on another treatment at the same time.   It's pretty early in the game to see if the DCPC is working, but I'm certainly not going to let an opportunity to be on Z go by.  

Dr. W. confirmed that they are using a new BRAF test, we we really don't know if it's because I'm dealing with recurrence or it's the test.

I'll keep you posted.

Hey Al, maybe it was your good vibes!

hugs to everyone,

Karen 

Don't Stop Believing

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aldakota22's picture
Replies 13
Last reply 12/17/2012 - 7:19pm

  Yesterday Dec.10, was the end of month 15 on "Z".For me this drug is truly a miracle drug.Side affects for me are manageable Always at full dose.Been working full time all those months and have not missed a day of work cause I was to ill. Like I had posted earlier Dr. Anna  Pavalick demanded that I have a complete physical.Feels I am actually healthy to put melanoma on the back burner.Did have a slightly low iron count ( just under borderline).and a slight PSA concern.Will have the thrill of a colonostophy (my first) this Thursday .Also a visit with the urologist on Dec.20.I post so that maybe I can be a positve story for so many on the drug out there.Dick who posts is my inspiration.I thank Mother Mary every day and pray to God for everyone on thsi site.I really beleive that my positive mind set, support by family and this site are very powerful aids in my fight against the beast melanoma.Science & Medicine will find a life saving treatment in our battle.So many sad stories I hope that during this holiday season I can get someone who feels down, out of their funk with  a real uplifting post.I consider myself as the luckiest man in the world right now.Praying that I will have a very large lucky group join me in this celebration .Beat the Beast.    Al

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TSchulz's picture
Replies 8
Last reply 12/17/2012 - 3:00pm

Hi everyone, 

It has been awhile since I've updated my status here but I figured I should share my continued good results from my NIH TIL treatment.  

Just to recap - I completed the randomized TIL trial at NIH in late May of 2012.  I randomized to the non-radiation arm of the study.  I had my 4th follow-up visit last week and all of my tumors have shown remarkable response thus far.  

The scans showed that over 90% of the total tumor volume is gone. All that remains is a smudge of the big tumor in my right lung (maybe just scar) and a spot in my femur that hasn't really changed much in over 1.5yrs of watching it. Two more of the tumors they've been following are no longer seen. Bye-Bye suckers.... 

The other good news is (the physicians have never said this to me before)... They said that they've found if they can get all of the cancer to go away with this treatment - it usually stays away! Of course, no guarantees but I'll take any reassuring words. 

I go back in another 2 months for studies and scans and am looking forward to spreading these trips out even farther. 

 
My family has so much to celebrate this year. When I was first diagnosed as Stage 4 my wife was 7 months pregnant and my little girl turns 3 next week. I am lucky! 
 
 
Happy holidays to you all and may 2013 be one filled with positive results for this community. 
Troy

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Lisa - Aust's picture
Replies 13
Last reply 12/17/2012 - 2:40am

Hi Everyone,

I read everybody's posts regularly, but dont often post myself. Just an update on my hubby Craig who progressed to stage four 2 years ago (1 Dec 2010), after being stage three for about 3 years. Latest set of scans are clear after having been on Z (GSK phase 3) for 96 weeks. Hopefully this provides some hope to those newly diagnosed and starting Z - I know everyone wont have such a response, but I find it so encouraging that some people CAN have this response. It is a nice relief to be able to look forward to chrissy and our upcoming 1 year wedding anniversary :)

Wishing everyone a happy and healthy Christmas, all the way from sunny Perth

Lisa

xx

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Anonymous's picture
Replies 1
Last reply 12/16/2012 - 3:54pm
Replies by: Josh

Do any of you know if being on antibiotics for an infected surgical incision will disqualify you from Merk's Anti-pd1 trial?   My boyfriend is about 5 days through the 10 day cycle of antibiotics, But the incision site is still draining and has pus, although it's not red or inflamed.    He is due to meet with Dr. to assess him for a trial of anti-pd1 for people who progressed after yervoy, and im worried having an active healing infection, and being on antibiotics will disqualify him...even though he only has another 5 days or so of the antibiotic.  I'm also worried that having a prior bowel obstruction surgery will disqualify him.  Any opinions would be greatly appreciated. Thanks in advance

"Give thanks in all circumstances"

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