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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Anonymous's picture
Replies 10
Last reply 1/20/2015 - 9:03am
Replies by: Gene_S, Jacqueh27, rick1981, JustMeInCA, Anonymous

My Daughters levels have gone from 8000 to 592 before her third infusion. She has liver tumor. She finished her fourth infusion last week and will have scans in four weeks. Any YERVOY responders have the same type of indicators it was working?

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Nurka's picture
Replies 1
Last reply 1/11/2015 - 8:35am
Replies by: Teochasse

Hello,

 

My mother is IV Stage metastatic melanoma.

For the moment is takinf Zelboraf,

But we are afreid that it can stop.

Therefore we are looking how we can buy Dabrafenib and Trametinib. We are from Ukraine and for the moment this medicine is not registered in our country.

Please help us to buy it abroad and how it can be done? Where to go, whom to call? Any information will be much appreciated.

 

Thank you in advance!

 

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_Paul_'s picture
Replies 11
Last reply 1/18/2015 - 11:10am

Here is an update for anyone considering TIL. I just met with Dr. Lee at the Seattle Cancer Care Alliance about enrolling in the "Tumor-Infiltrating Lymphocytes (TIL) for Metastatic Melanoma (2643)" trial (http://www.seattlecca.org/clinical-trials/melanoma-NCT01807182.cfm)

I specifically asked about mortality rates, since some people on this board have expressed concern about the treatment itself killing people. Dr. Lee assured me that none of the patients she has seen in Seattle have died as a result of the treatment. As many of you know the treatment itself involves traditional chemotherapy to destroy the bodies ineffective TIL cells, followed by an infusion of lab grown TIL cells, followed immediately by a series of IL-2 administrations to “feed” the new TIL cells. The entire process is done in the hospital and the patient is transferred to the ICU for the IL-2 part of it. Testing is done in advance to ensure the patient is healthy enough to undergo treatment.

The great thing about Seattle is that the lab grown TIL cells are cryogenically preserved until the patient needs them. So in my case, where Yervoy appears to have halted the progression of my disease (except for one tumor which is growing, but which will also be harvested to extract the initial TIL cells from), they will wait until there is progression before moving to Step 2, which is the actual treatment I outlined above.

My original plan was to try Yervoy, and move to Opdivo or Keytruda if it didn’t work. But my new plan is to wait and see if I get a durable response from the Yervoy, then try TIL if that fails, and then try anti-PD-1 if that fails. The reason is that you have to be fairly healthy for the TIL. If I left TIL for last, I might not be healthy enough by then to endure the treatment.

I gotta tell you though, that it is pretty awesome to have any choices at all! I am a skeptic at heart, and when I first heard people saying stuff like “this is the best time to have melanoma” but had already seen the (now outdated) survival statistics, I thought, yeah right, this is just stuff people say to keep our hopes up but the reality is that I am doomed, plain and simple. Well that skepticism is not justified. The stuff people are saying is true. I’ve been converted. I’m a believer. Woohoo!

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Anonymous's picture
Replies 4
Last reply 1/11/2015 - 12:10pm

I was first diagnosed with melanoma Stage 1b in 2004 (Breslow 0.44 mm, but had few mitoses, so was restaged from 1a to 1b when the new classification came in) treated with WLE. About a month ago, I started to have upper/middle back pain, which I thought was due to a poor posture. It was sort of migrating from between the shoulders to the sides, upper part of the back etc. It is tolerable, and I don't take any pain killers. I don't have a pain at night and hot shower provided some relief.

Because of my melanoma history, I am always hypersensitive to any pain and I saw the PCP for the piece of mind. She sent me for PT and upon my request/insistance to get an X-rays of thoracisc spine, which showed a compression fracture at T8 level. She now wants me to test for osteoporosis, but I am scared to death about a possibility of metastatic spread. I am 43 years old woman and how likely it could be osteoporotic fracture??? Well, I have certain risk factors: use of Mirena, low weight, lack of excersise, perodic use of high doses of proton pump inhibitors  (due to acidic reflux), maybe low Vit D... I pray that this is osteoporosis, but I am trying to understand what I have to do in a worse case scenario. I don't have an oncologist (I live in Boston) because I only saw a dermatologist all these years. How do you get strenght to go through Stage 4 treatment? I have 2 kids age 8 and 10 and I afraid that I will never see them grow up. Having Stage 4 diagnosis is like a death sentence to me. I'll appreciate any support and help. Thank you for listening.

 

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Jsneathen21's picture
Replies 6
Last reply 1/10/2015 - 3:53pm
Replies by: Anonymous, _Paul_, Jsneathen21, Treadlightly, Gene_S

Has anyone had to have a skin graft where there melanoma was?!! I have to have one mine is located in my left shin!! Please tell me were you in a special cast ? How long did it take for you to heal?

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jpfletchjr's picture
Replies 3
Last reply 1/9/2015 - 8:52pm
Replies by: Prd10, Lil0909

Last year, to celebrate our 40th aniversary, we purchased tickets for a trip to New Zealand and Austrailia that is scheduled for this February. In April my wife was diagnosed with melanoma in her neck, abdomen and in the lung.  We have gone through IPI and it worked well enough to eliminate the spot in her neck and her abdomen, but the mass in her lung persisted.  She started the regimen of Mekinist and Tafinlar in December. I am not sure she will have the energy to complete the trip, as the meds are wrecking havoc with her body, but I promised her we would go if at all possible.  

I have not asked her doctor yet, but does anyone know if the xrays at the airport would do harm to the meds?  I anticipate walking them through and having TSA inspect them manually, but if they did go through the machine, would that be a problem?

More importantly, can anyone suggest a good insulation pack that would be good for the mekinist?  I have looked at several insulated packs and travel bags on line, but am not sure which would be our best option.  The flights from the US east coast to New Zealand are going to last a looooooong time!

I also believe we can get clearance at the airport for frozen ice packs that are larger than 3.4 oz.  does anyone have experience with that issue?

Thanks for your input.

John

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tsykes1's picture
Replies 2
Last reply 1/9/2015 - 7:37pm
Replies by: tsykes1, Janner

Sorry guys to bother you a All , but I found. Hard scab on upper thigh last night and I picked it off .  It was blood . See I just had my 3 month check up and NED , so my mind is thinking more Melanoma. It is not bleeding  but it is a little bump size of pin head .... Any advise 

Terri Sykes

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DZnDef's picture
Replies 1
Last reply 1/10/2015 - 10:33am
Replies by: Anonymous

This is a fascinating one-hour discussion on cannabis oil for those curious about it.  The talk is free at this website for the rest of the day (you don't even have to provide an email address) but I believe they're taking it down after today (in other words, you'd have to be a subscriber to listen to it after today).

http://thecuretocancersummit.com/spotlight-constance/?inf_contact_key=7c...

 

Maggie - Stave IV (lung mets unknown primary) since July 2012

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milerstar1's picture
Replies 6
Last reply 1/12/2015 - 1:42pm

After 8 mos of being NED just had scan come back with multiple lesions on liver and lymph nodes in area also affected.  Was originally diagnosed in Aug 2011, did a year of interferon after left side ALND. In May 2014 it showed up in right side axillary node, so had complete ALND on that side as well.  Am pending MRI of brain to rule that out and PET scan next week to determine total presence.  Consulted with my own doc, a doc at KU med and Mayo and all 3 say combo therapy BRAF inhibitor and MEK inhibitor.  Was not given good prognosis if this doesn't work.  PLEASE, would like any input, suggestions possible from similar cases.  I have 3 kids and a wife at home.

"Do not fear or be dismayed for the Lord your God is with you always." - Jos 1:9

"To Give Anything Less Than Your Best is to Sacrifice the Gift" - Steve Prefontaine

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susan-scalp MM 2014's picture
Replies 2
Last reply 1/9/2015 - 9:30pm

Good day to all of you and your loved ones fighting the battle! I have a question I hope someone may know an answer to.  Does having a tattoo increase risk of getting Melanoma? Curious because both my cousin and I got tattooed the same day. She died from Melanoma and I am now battling Melanoma. To be fair, we also both grew up sunburning on the beautiful beaches of Southern California which I know is most likely the contributing factor or even a genetic possiblitly. Thank you ahead for any replies or knowlege about this.

Susan

It is well with my soul!

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JoshF's picture
Replies 13
Last reply 1/10/2015 - 11:02am
Replies by: JoshF, Bubbles, arthurjedi007, Ed Williams, Anonymous, Prd10

Saw surgeon for MRI results today. There's a 4.75mm nodule that can't be ruled out for recurrence. So he scheduled surgery for Tuesday to go in and get it. I'm distraught once again as many of you know I've been down this path just over a year ago which eventually led to my Stage 4 diagnosis with metastasis to lungs. He wants to have a pathologist there on Tuesday to test tissue to ensure margins are clear...is this something they can do? I thought special staining is required? Anyway this is where I'm at:

 

Chances of this being something other than recurrence? He said suture granuloma is possible and I asked about scar tissue he said MRI showed nodule was different than surrounding tissue.

With most likely having a recurrence does this mean the ipi and IL-2 I did from Oct 2013-Jan 2014 didn't work...or rather stopped working? I had a scan in Oct that still left me at NED.

Can this be only a local recurrence and immuno drugs are still working? I'm just so confused, everyone was convinced I was on a good path to being NED.

Should I ask for SNLB at same time of surgery on Tuesday? I have a well respected Head & Neck Surgeon who knows melanoma but now I'm questioning going to surgical oncologist. I asked him if he was comfortable doing surgery and he said let's do it. He did the surgery in Sept 2013 and was good.

I'm just not sure what to do or where this leaves me....recurrence a year later. I fight to stay positive but that dark side looms over me....I know many of you have been through the ringer more than I have; I'm just trying to grasp a glimpse of hope here.

Josh

Let's work for better treatments....for a cure!!!!

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powell1's picture
Replies 1
Last reply 1/9/2015 - 10:48am
Replies by: Janner

I had a spot on my left cheek removed by derm in May 2014. Pathology report came back fine. A couple of months ago 3 small spots popped up in same location. Went to derm and she said they need to be removed by plastic surgeon. She also asked pathology to run new slides on original spot removed in May. She told me she would call the second week in January with results and appt. for plastic surgeon. She called out of the blue on 12/22/14 with dx of melanoma. I was in the MOHS clinic for consult the next day and had the surgery on 1/2/15, a week ago. I am 43, female and now have 20 stitches in my face, black eye etc. I see the surgeon today for test results and stitch removal. What questions should I ask? My family is riddled with cancer....my dad had undifferentiated carcinoma on his face resulting in major surgery with lymph node removal, etc. Luckily, he was fine and required no more treatment. Since then he has had prostate cancer but they got that too. My mom had ovarian cancer 5yrs. ago and is o.k. I am freaking out since both of them have positive cancer history but never at my age....they were both in their 60's. I also have an aunt with kidney cancer. So, what questions should I ask the surgeon? Do I need any kind of other tests to make sure I don't have cancer elsewhere? Also having issues with my appearance. Thanks so much!

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Anonymous's picture
Replies 7
Last reply 1/11/2015 - 1:55pm

My husband had great n.e.d. scans after dabra/mek treatment for a recurrence at the surgical site of melanoma. Then a serious side effect caused him to have to stop using it an he switched to IPI.  Now three weeks after first IPI treatment, there is a lump growing again. They said we have to keep using IPI and wait to see if the lump changes.  Cancer sites state things like people with local recurrences like this after surgery have lower survival rates. How the heck is anybody expected to live with this stress? It's driving us nuts.  We don't know if we have hope or not. Thanks for listening. Just venting.

Rose

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/9/2015 - 2:21pm
Replies by: Anonymous, arthurjedi007, Colleen66, Momrn5

Hi out there. I am lookng for anyone that could give me any info on getting on disability. I am stageIV.I have been going to MD ANDERSON for about a year and a half and doing quite well  I have extreme fatigue and lymphadema in my right leg. It is quite painful and very swollen.I would aprreciate any advice or info..

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/9/2015 - 5:21pm
Replies by: Tim--MRF, joelcairo

Can anyone tell me anything about Avastin?  My father's oncologist suggested he be part of a study combining Yervoy with Avastin.  He has stage 4 melanoma.  I've read a lot about Yervoy but nothing on Avastin.  Thank you.

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