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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angtom's picture
Replies 6
Last reply 7/29/2014 - 5:45am

My husband has stage 4 melanoma and has been accepted to the TIL trial at Moffitt he is BRAF negative, my question is what is our back up if this does not work? I am just trying to get all of my options as a precaution. He will be doing the IPI - IL-2 Immunotherapy first IPI is on August 1st. I would appreciate any advice or anyones experience with this trial as I want to try to make him as comfortable as possible during these procedures. He is a healthy 51 year old and still working 6 days a week 10 to 14 hours a day, against my advice but it keeps him sane. I welcome any and all feed back, thank you so much.

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tcell's picture
Replies 5
Last reply 7/28/2014 - 8:00pm

http://cancerdecisions.com/index.php?main_page=product_info&cPath=86&products_id=412&zenid=b2f8ef42bba6e474764c79d58e393cf3

Does anybody know if this is worth almost 300 bucks for the download version? Is it up to date? Is there sufficient information in there about alternative treatments, etc???

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Anonymous's picture
Replies 6
Last reply 7/28/2014 - 7:56pm
Replies by: Anonymous, buffcody, ncdaniel, King
On June 13, 2014 my father was diagnosed with stage IV melanoma of the small intestine.
 
A few days earlier my father told his heart doctor that he was feeling fatigued for a couple months now which then they decided to do blood work. His hemoglobin game back at 6.5.
 
After the blood work came back we immediately went to the ER for a blood transfusion. Due to my fathers heart condition they could only give him so much blood. After the transfusion his hemoglobin was at 8.6. They immediately started him on ferrous sulfate (iron) which naturally raised his hemoglobin to 10.3 and his holding steady. 
 
Once the pet scan and cat scan came back, it showed a couple mets on his lung, heart wall, chest muscle, groin and thigh muscle as well as the three tumors in his small intestine. The doctor at Toledo said we needed to test for BRAF and start treatment right away. Why wouldn't they remove the ones in the small intestine?
 
We immediately knew that we wanted to see the melanoma specialist up at University of Michigan and started the intake process. 
 
Since University of Michigan couldn't get us in till mid July, we pushed the Toledo doctor/oncologist to start my dad on something. Two weeks after he was diagnosed he started Yervoy. We refused to wait any longer. The Toledo oncologist has consulted the U of M specialist with every decision they have made for my dad because she was so nervous what the yervoy could do with his GI problems.
 
Our appointment with U of M was supposed to be July 15th but the specialist called us and cancelled it. Said they didn't feel comfortable transferring his medical care during treatment. Everyone wants us to go up to U of M but I don't know why there is a problem with transferring treatment? 
 
He just had his second treatment and has had no side effects besides fatigue and we pray it stays that way. He says he feels nothing is wrong. Hemoglobin is steady above 10, no pain and his appetite is great.
 
The doctors say they are extremely confident in Yervoy. And that they want my dad to finish the Yervoy treatments at Toledo because it's exactly what they'd be doing at U of M. Also that they've been working together on his treatment. U of M said after the fourth treatment they will do pet scans and cat scans to determine how the Yervoy worked. If it didn't work they would put my dad in the trial coming up at the end of his treatment.
 
Is it common not to transfer during treatment? Should we look for another specialist? It seems as though the Toledo oncologist and the U of M specialist are working side by side. When we speak with them separately they say the same thing.
 
Am I overreacting? I feel as though I need to calm down but this is my dad and i want the best care for him.
 
Kind words of encouragement are appreciated as this is really hurting us.
 
Thank you
Kiley
 

“Nothing is impossible, the word itself says 'I'm possible'!”

― Audrey Hepburn

 

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Rocco's picture
Replies 7
Last reply 7/28/2014 - 5:49pm

Wanted to share some hope for others.

Scans last week revealed I'm still NED!  Now scanned every six months. Continue to be very thankful for all the support and hope I've received off this bulletin board over the years. 

Hang in there!

-Roco

Diagnosed Stage IV  in 2005. NED thanks to MDX-010 (Ipi 10MG/KG) Compassionate Use trial in 2009, all the talented and compassionate doctors and staff at DFCI in Boston., and many, many hours of prayer.

 

Luke 1:37

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/28/2014 - 5:36pm
Replies by: natasha

Hi,

I had a mole removed a month ago and was diagnosed with invasive superficial spreading malignant melanoma.  I went back a couple of week later for a wide local excision and I had the stiches out 2 weeks ago.  I have just managed to get a copy of my first pathology report and it says the following:

Ellipse of skin measuring 16x7mm with 4mm of underlying tissue.  On surface there is a slightly raised roughened pigmented area measuring 5x5mm

HISTOLOGY

The sections show skin with underlying adipose tissue and containing invasive/vertical growth phase superficial spreading malignant melanoma.

It is predominantly in situ but there is focal regression.  The small amount of invasive melanoma has a Breslow thickness of 0.4mm and infiltrates the dermis the Clark's level II.

No vascular invasion is seen.

There is a moderate tumour associated lymphoid infiltrate.

Dermal mitotic figures are not seen.

There is no surface ucleration and satellite lesions are not present.

The lesion appears completly excised with the nearest transverse margin at 2mm and the deep margin at 4.5mm from the invasive component.

I have a couple of questions and would appreciate it if anybody could help me:

1. Does Invasive and Vertical Growth Phase mean the same thing?

2. If it has had regression, does that mean it could have been deeper before my immune system attacked it and therefore could have already gone elsewhere?

3. It says the deep margins is clear by 4.5mm but it says only 4mm of underlying tissue was removed and if bresolow thickness 0.4mm  then that doest add up exactly.

4. Should I have had my glands checked as I havent and I will be getting them checked in 3 months time?

I may be looking in to this all too much but ive felt so unwell with asthma and stomach pains, it makes my imagination run away with me and I start wondering if its maybe something worse.

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Beth_A's picture
Replies 10
Last reply 7/28/2014 - 9:29am
Replies by: mary1233, Beth_A, Anonymous, Kim K, RJoeyB, hbecker

I just received a phone call this past Tuesday letting me know I had melanoma. I got a copy of the pathology report that was obtained from Mayo Clinic - apparently my local lab sent it to them due to coming back "atypical."  The patho report is pretty frightening, especially when paired with excessive web searching. I was going to wait for my family practice NP to refer me to a dermatologist, but instead I called the Melvin & Bren Simon Cancer Center in Indianapolis, IN  to try and get an appointment. They were super nice and helpful, after getting a copy of my patho report they set up an appointment for next Tuesday with a Dr. Swartzentruber. I looked him up and he has a great reputation, so I feel good about that. I'm really anxious though and hope my appointment will help resolve some of the incredible anxiety. Nice to land somewhere that has people familiar with this problem :)

Beth A.

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KatB's picture
Replies 5
Last reply 7/27/2014 - 2:43pm

My husband and I will be moving to the Greenville/Spartanburg, SC area in the next few weeks and I am in urgent need of recommendations for hospitals and specific doctors names that we can transfer my husbands case to.   It seems like Gibbs Cancer Center may be our best bet as they are a comprehensive center and are affiliated with MD Anderson, but I'm not finding a melanoma specialist there.

Charlotte, NC would be a possibility as well.

2008: Dx Stage 2 - 1.24mm, ulcerated, right arm. WLE, SNLB.

2014: Dx brain met - 3.1cm resected 2/28/14.  TrueBeam 4/14. Start Ipi 6/14.

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 7/27/2014 - 9:42am

Just been diagnosed with stage 4 melanoma in liver spleen and brain.therefore would love to here stories from other stage 4 people about how long they been surviving it for and where they have it. Thanks

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arthurjedi007's picture
Replies 7
Last reply 7/27/2014 - 4:51am

Just thought I would share some good news for those who have struggled through failed medicines and have landed in Merck's EAP PD1.

I confirmed with my Mayo doc the visible lump on my head that was bigger than my thumb is almost all gone with only 3 doses of this stuff. He was suprised to see a response so soon. He doesn't expect to see responses until after the 6th dose but everyone is different. The other 2 visible tumors are staying the same size according to his tape measure. Of course we have no idea about the internal ones but I am feeling better. My back spasm twinges are far less frequent. Blood work is ok with the ldh finally starting to go down a little from 423 to 399.

Someone said on here that no matter how many medicines fail you only have to stay strong and find that one that works for you. That has kept me going so much and I finally believe this is the one for me.

Unfortunately Mayo has an institutional policy that I have to have a scan before my 5th dose which is august 13th. My doc does not agree but his hands are tied. I really hope they keep me on this stuff because it works for me. He did say they evaluate immunotherapy results different than other results.

Good luck to everyone. Keep the faith no matter how dark things seem. There is hope.

 

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ymellin's picture
Replies 2
Last reply 7/26/2014 - 6:10pm
Replies by: ymellin, Janner

Hi, I just had surgery this past week for melanoma in situ. The area was the front of my right shoulder and I have a 3 inch incision. Am waiting for biospy reports to return to make sure that all is clear. Can anyone tell me what happens after this? 

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hchemotti's picture
Replies 8
Last reply 7/25/2014 - 10:35pm
Replies by: hchemotti, ltalley, Anonymous, hbecker, Janner

Hello, I just this week got diagnosed with Melanoma, on my collar bone. Have not gotten the specifics, but have been sceduled for a wide ensicion next week, thier first available appointment. I am very nervous, I am open to any information that would help in this situation.  I am also oddly expeirencing pain in my left underarm, starting around the time of the biopsy.  I am also worried because it is so close to my neck that it may be easier to spread? I wish they would tell me more over the phone. Any help would be great.

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Anonymous's picture
Anonymous
Replies 9
Last reply 7/25/2014 - 5:58pm
Replies by: RJoeyB, OzzieK, Anonymous, Bubbles, Ed Williams, shanemcdonald99

My mom is starting MK-3475 on Tuesday after no success with Yervoy.

Matted nodes removed mid-February 2014. They had to leave a small piece on her vein so as no to compromise the vein/leg.

Lymphodema of her leg and extreme swelling of her abdomen. Fatigue, sleep deprived, can't get comfy, swollen stomach causing loss of appetite and nausea. Scan Last Friday shows cancer moved to nodes in stomach, hence the fluid in her belly. Brain scan negative.

Starting MK-3475 on Tuesday. I'm not sure what to expect.

Doctor stated that if she waited and gave the Yervoy more time to work that she could find herself bed ridden with organ failure in a couple short weeks. This seems to be her only chance.

I can't seem to find anything definitive on what her chances are with this trial drug. It's now an expanded access protocol, so we do know that she won't get the placebo.

Does anyone know where I can find anything that outlines the effectiveness of MK-3475? I know there is no black-and-white here, but I just need something, anything, at this point.

We are all a mess. Worst nightmare. There is no other way to say it. Watching the most important person in your life go through something like this is beyond heartbreaking. Watching my parents cope with it, together, is beautiful and also so incredibly sad. My mom is such an amazingly strong and profound life force to SO many people. I am still in denial and coping - if you can call it that - poorly. I don't even know where to begin.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/25/2014 - 3:57pm
Replies by: LindaR
After meeting with my dr- this test tested the genetic make-up of my specific melanoma tumor to check the likelihood of reoccurrence. It came back that mine is highly likely. Do any of you know of a test that is valid like this? I posted the link in my last post- it is skinmelanoma. do any of you know of a test like his that is valid? Because now I am scared to death. 
 
Thanks for all your insight.

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Polymath's picture
Replies 5
Last reply 7/25/2014 - 3:23pm

After going Stage 4, I went on Zel (Dabrafenib) being BRAF positive.  Horrendedous side effects, but very effective in dissolving tumors.  But after only 3 months I progressed.  I took a 2-week break off all meds and immediaily began to recover from the Zel side-effects.  Then started the TAF/MEK combo, which has had virtually no side-effects but has been much less effective.  Stable for a couple of months, but by 3rd month progressing again.  So I am again going to do a washout, this time for 3-weeks or more before beginning Yervoy.  My question is have others had what they feel as better experirinces and results with the cleansing period between drug therapies, or do I run a serious a serious risk of rapid tumor grouth with no inhibitors at work?

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Just wondering if anyone heard from melfighter? I know her husband is going through a lot and was supposed to see his UCLA doc last Monday. Am hoping everything turns out good.

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