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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Bobman's picture
Replies 5
Last reply 3/25/2013 - 10:03pm
Replies by: CLPrice31, Janner, Bobman, Anonymous

Its been about two years since I first posted about my first primary on my neck. Since Januarary of this year I have had four more located on my back, with depths from .4mm-.7mm. So this makes five in two years. All treated with wle, and I am still a little sore from my last two wle's last week. I have the dysplastic nevi syndrome, and have north of 500 on my body. My derm told me I have tied his patient record for multiple primaries, and the surgeon told me it was a bit unusual.

So, my questions are, how unusual is this to get so many primaries so fast? With the atypical syndrome, is this what I can continue to expect? Am I now getting into a different risk factor for progression? With so many changes happening on my body so fast, I am not sure what to make of it. I did in fact find the last three, as I am being vigilant about watching for changes, but it is a challenge with so many to look at.

Any suggestions and or advice are much appreciated.

Also looking forward to chat getting up and running so I can come in and vent a little and talk with some of you i have met on there before.

Thanks,

Bob

We are one.

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tony9511's picture
Replies 6
Last reply 3/25/2013 - 8:31pm

Hi I was first dxed with Melanoma stage 2 clark IV last march and had the WLE surgery in May 2012.  My lymph node that was discected was near the neck area.  In Feb 2013 the Melanoma returned.  I just had the surgery.  The Pet scan was negative, although the Melanoma showed that it was draining to another lymph node near my armpit as well as the neck (same node as before).  I still have not got the pathology reports back from the lymph nodes from this recent surgery.  My question is 1. is it bad to have melanoma recurrance, and 2.  is draining to a second lymph node bad as well.  God bless all that are affected by this disease and I would appreciate any feedback.  The melanoma was on my arm.

 

Tony

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Tina D's picture
Replies 17
Last reply 3/25/2013 - 3:15pm

I went to St Louis today for my first post-ipi PET/CT. Scans show the main tumor shrunk from 3.6cm to 2.1cm. Dr L is very pleased with this response. We will rescan in 2 months. Meanwhile, my endocrine issues are steadying out a little. Prednisone decreased to 20/day.

It is amazing to still be alive, it truly is. I am so thankful. We are rejoicing this fine evening and first day of spring ( even though it is below freezing here in St Louis!). 

Tina

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MarieM's picture
Replies 6
Last reply 3/25/2013 - 7:58am
Replies by: mike_nj, dian in spokane, Anonymous, King, Hstevens0072, vivian

I just got a call from Dian!

It was soooo good to hear her voice. She sounds GREAT!!!! She is having some computer problems but finished 13 of 14 bags of IL2. She is having some side effects...but managing them like the trooper she is! Her Bob and friends have been by her side.

 

She is hoping to be discharged either tomorrow or Sunday.

 

She is truly, AMAZING!

 

Hugs, Marie

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MaryD's picture
Replies 6
Last reply 3/25/2013 - 12:37am

I want to share some news that I hope will encourage all of you who are battling this difficult disease.   I was diagnosed 12 years ago with melanoma, had 5 recurrences including a lung metastatis in 2007, did 1 yr INF, peptide vaccine trial, radiation, Ipi trial, and 6 mos of pulsed IL-2 treatements.

Last Wednesday I had my 6 month scan which revealed all is clear - 4 1/2 years since the last recurrence!    I am now on the countdown to strive for that 5 year milestone in September.

I thank God every day for this gift and will never take it for granted.      This is a difficult journey to be sure, but know that there is hope, and there are many of us stage IV survivors out there thanks to those who devote their lives to research and finding better treatments.

I also have to thank the MPIP for playing a huge part in helping me learn so much about this disease and bringing amazing, courageous people into my life.

Wishing all of you strength .  .and hope . .in your battle

Mary

 

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Jewel's picture
Replies 7
Last reply 3/24/2013 - 9:54pm

Hello,

 

When my husband was diagnosed back in 2010 things looked and felt so final. My husband goes for his

scans this Monday, if they are NED we have been blessed with 18 months clear from last recurrance.

With all the advances they have made in the last couple of years it seems now that the normal protocal seems

to be Zelboraf, Yervoy and then Anti-Pd1 in that order. With all the advances would you still try to push for a

clinincal trial? Just trying to get a plan A, B + C. My husband is stage 3C. I know this question is asked endlessly

but I also know that there are alot of people who do ALOT of research.

 

Would love to hear some opinions....Thank-you

 

Jewel

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Moodypoodle's picture
Replies 4
Last reply 3/24/2013 - 9:32pm

 

On Friday I got the results of my first post-Yervoy PET/CT scan (also results of brain MRI done the same day).  By the way I’m happy to say I was able to tolerate all 4 doses with minimum side effects. The good news is that the scans show no evidence of disease in the previously involved areas (liver, lungs and abdomen).  YEA Yervoy!!  Looks like I am a responder—woohoo!

However, the brain MRI shows a teeny spot of disease that wasn’t there in January when I had a problem with my pituitary.  The way I understand it, that teeny spot is what we can see.  There may be others we can’t see at this point.  Doing nothing is not a good option!  Next stop: radiation.  My retinue of docs now includes a radiation oncologist and a neurosurgeon.  All that training yet I’m the one who’s stuck with the decision. Sigh. I can go with whole brain radiation and not leave anything to chance OR do cyberknife and zap what is showing.  I am leaning in the direction of the cyberknife initially and then at the first hint of another spot, doing the whole brain thing. What have others done in similar circumstances?  What would you do??

Ann

Every Second Counts!

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awillett1991's picture
Replies 3
Last reply 3/24/2013 - 2:01pm

Finished Ipi Dec 3rd, thyroid levels high then closer to normal, bouncing around during and since. Dr says he has seen it before and believes it will eventually settle down to a consistent level - hypothyroid- treated with synthroid. I'm so sleepy during the day, have plenty of energy to do what I want, just sleepy when I sit down for something. No med changes. Nurse offered to run thyroid blood work but I passed since they wont treat it yet anyway, why bother? Anyone had Ipi wear out their thyroid? How long did it take to stabilize?

She really doesn't think it's the Zelboraf either though I am suspicious...

Thanks, Amy

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bikerwife's picture
Replies 3
Last reply 3/24/2013 - 1:34pm
Replies by: kylez, susanr, awillett1991

we had some heart problems after gamma knife we ended up staying overnight and in middle of night he had a seizure. Scan showed everything was ok .Dr aid they treated 32 pin sized spots on brain. he came home Thursday is doing well. treatment today. Ldh down to 327 was 800

What God leads u to he will. Lead you through

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2004livestrong's picture
Replies 2
Last reply 3/23/2013 - 3:47pm
Replies by: bluevit, Janner

I have Acral subungual melanoma under the toenail in 2004. After surgery I was NED until last year when it appeared in two lymph nodes. I now have inoperable mets in my lungs. I am not BRAF mutant and now being tested for the C-KIT mutation. What is the more effective... Ipilimumab or imatinib? Thanks. 

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Richard_K's picture
Replies 6
Last reply 3/23/2013 - 11:23am

 

At my last regular check-up on February 27th, my bilirubin was once again elevated and it was decided to retest in three weeks rather than the normal six.  The nurses also suggested that lack of proper hydration could be a contributing factor.  I decided to make a chart for myself where I would be able to keep track of my fluid intake.

Good news yesterday after the three week retest with a telephone call that my bilirubin had returned to normal.  A side benefit was that my creatinine was also greatly reduced.  Proper hydration is now my new best friend.

The day before this call I got another good telephone call, although it was not so good for my wife, she would be losing her night light.  Since I am still in the Zelboraf phase II clinical trial, the protocol called for scans every six weeks.  My doctor was finally able to get permission to get that changed to every twelve weeks; I won’t be glowing as much anymore!

Dick

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randallgford's picture
Replies 2
Last reply 3/23/2013 - 11:16am
Replies by: randallgford, Janet Lee

Randall started Yervoy two weeks ago after lung biopsy, CT and PET scan showed tumors on lungs,

abdomen, two small ones on liver, and spine. Brain MRI was inconclusive, decided to do a double contrast

MRI. Well the result is 5 apparent lesions, we are doing cyberknife by next week if another MRI can be 

scheduled, then a day to plan it (?) I got the impression from reading on this board they mainly do cyberknife

for brain. Why not for lungs/spine etc.? Just curious. I guess its more wait and see, some respond, some don't.

I am having a hard time with what to tell my daughter she is 20, across the state, a junior in college and doing

great with grades, a job, and an internship. Very busy and focused. We went there and told her about the cancer returning,

but at that point we only knew it was in the lung (after the biopsy) and we pretty much assured her he would get

get treatment and beat it. I feel like Im not being truthful, she is coming home next weekend for Easter and I have

to figure out what if anything, else to say. Randall doesnt want to stress her out. He still feels decent and goes to work.

Mostly I try to think positive, but this is serious  especially with the brain involvement.

Never give up!

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Janet Lee's picture
Replies 8
Last reply 3/22/2013 - 9:59pm

I posted the following in a thread started by POW regarding insurance paying for Zelboraf for non-V600E BRAF mutations such as BRAF V600R. I hope it's ok to post it again as its own topic, as I want to make sure people see this update.

First, thank you so much to POW for her help in this nightmare of trying to get Zelboraf covered by our insurance company. And eternal thanks to everyone on this website for their insight, knowledge, help, and understanding.

I can understand the FDA originally approving Zelboraf for the BRAF V600E -- after all, the vast majority of BRAF murtations are V600E and it makes sense to concentrate on that group. However, 19 months after the inital approval, shouldn't there be something more to offer for the BRAF mutations OTHER than V600E? My husband Don is V600R.

We have appealed three times to our insurance company; the last appeal was even supported by our Congressman from central Massachusetts, Jim McGovern. Even that was denied -- as "not being medically necessary." At their request, we are sending more information to the Office of Personnel Management in Washington, DC to prove that Don is BRAF positive and is being treated for metastic melanoma. In all honesty, I do believe we are dealing with idiots.

In the meantime, mainly through the efforts of Dana Farber, Genentech has agreed to provide Zelboraf to my husband, Don, and he took his first dose at 11:55 a.m. yesterday. (YAY!) Interestingly, even Genentech has in essence tied its own hands and is subject to strict overisght by the FDA in what it does with Zelboraf, and they were not "free" to simply give it to a patient that did NOT have the V600E BRAF mutation. Dana Farber supplied an enormous amount of information to Genentech for them to even consdier giving the drug to Don, including the "Australian" paper from December of 2012 citing exciting positive results for V600R patients.

The other side of the story with Genentech is that Don and I had to "prove" that we were beneath a certain income threshhold. It seems that, if your combined household income is above $100,000 per year, you are not worth helping. If your household income is $99,000 or less, it seems that your life is worthy of help. With Don's illness, he has been unable to work since Christmas; I am not working so that I can help take care of him. So I had to provide "proof" that our income would be below $100,000 in 2013. That may sound like a lot of money to many people, but we are two professionals who have worked for over 40 years to reach this level and have planned for a contented retirement together.

We are continuing our fight with the BC/BS Federal Employee Plan. I honestly believe that the mission of insurance companies is to figure out a way to NOT pay your claim. I believe the bureaucrats put on their blinders and see "V600E" and nothing else.

Don's disease is quite advanced, and I know that waiting these past 6 weeks for a systemic treatment has been detrimental to his overall status. We pray that the Zelboraf will give him some relief from his pain and give us some quality time together.

Until Genentech came through this week with the Zelboraf for Don, Tim Turnham of MRF was unbelievable in his help in getting us into the pipeline for a Glaxo Smith Kline compassionate care use of Dabrafenib. According to Tim, GSK actually wants to use the Dabrafenib on rare BRAF mutations. Because of Dons advanced disease, we really had no choice but to start the Zelboraf rather than wait even a few more days or weeks for the Dabraneib.

I know this post is long, but I have not really had the time to post recently. Don had to have his brain met surgically removed (cyberknife was ineffective -- and his brain met brew larger and was affecting him dramatically) and he is now in rehab. We believe tumors are now impinging on his lower spinal column, so the Zelboraf is desperately needed.

Thanks again to you all, who give me hope and support!

Janet Lee 

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_Paul_'s picture
Replies 1
Last reply 3/22/2013 - 7:19pm
Replies by: washoegal

I just got the call from my derm that what presented as a small blue nevus in my excision site is likely a recurrence. Apparently the pathologist could not say for sure that is was melanoma, but there are enough characteristics coupled with my history that his official report is that it is a recurrance. I am waiting to receive a copy of the actual report and a copy is on its way to my melanoma Dr. at SCCA in Seattle.

Will they likely want to do another excision? The tissue at the primary site is to thin I think they would have to graft. But a graft was not an option last time because the skull had been opened for so long that the blood supply died. Anybody been through anything similar?

 

Thanks - Paul.

To exist is beyond fantastic.

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A melanoma group in Canada is hosting a survey to gather data in advance of encouraging coverage of Dabrafenib.  If you have an interest in melanoma and live in Canada you may want to participate in the survey:

http://survey.constantcontact.com/survey/a07e74hy2tphdq1lhit/start

 

Tim--MRF

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