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
Anonymous
Replies 0

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 0

My fiance was just diagnosed with stage IV melanoma.  He orginally had a large mole on his back removed 6/12 that was malignant.  They did a cential node biopsy for 2 nodes at that time also.  Everything came back cleared, no evidence of any remaining cancer.

Now, 7 months later, he has been told the melanoma has spread to his lungs, liver, kidney, adrenal glands, spleen and testicle.  We are both devastated with this news.  The outlook is grim.  They are waiting for the Braf Mutation test to come back before they proceed with any treatment.  Doctors have told us there is no cure, only so many different treatments to go through until he becomes resistant to everything.

There's got to be a better outcome.  Any advice would be greatly appreciated.

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awillett1991's picture
Replies 3
Last reply 2/1/2013 - 11:04am

Was just wondering how you, Zel, and prednisone are all getting along. I tried to taper from 7.5 mg to 5 mg but it didn't go well at all, so back to 7.5 mg now. I'm so messed up still from Ipi I guess. Anyway, knew you were hurting and was just thinking of you. Hope you are feeling better.

Amy

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lrkg1234's picture
Replies 16
Last reply 2/1/2013 - 10:40am

Wow what a week.  We learned that my husband Scott's IL-2 treatment did not work, he got a stomach tube for feeding because of his esophageal tumor and then learned that he has 7 small (under 2 mm) brain mets and needs to be treated with whole brain radiation.  He had already had one small area treated with stereotactic radiation.  Pretty hellish week. Feels like we have been around the world a few times and it's seriously been about a week.

So, that was obviously depressing news.  The good news might be coming soon hopefully.  I was googling like mad after hearing about the whole brain radiation and read someone's post about undergoing whole brain radation and IPI at the same time.  I had no idea this was possible.  It's supposed to possibly have some type of symbiotic effect and perhaps create a better overall response than IPI may do on it's own.  Thank God for the information from other melanoma patients!  The combined information from patients has been equally informative as any doctor has so far. 

If all goes well this combination therapy  will be the new plan of attack.  The idea came from this board and on the the Ogler Blogspot.  This is what his (Peter Ogler) doctor's had suggested for him. He did it and is still alive.   I hope to be able to connect with him.

The oncologist and radiation oncologist have agreed to go forward with the plan as long as the insurance works out and the blood tests come back OK.  Scott had his first radiation treatment today, there will be 14 total.  He may begin the IPI as soon as this Wednesday (2 days from now!)

We know this won't be an easy road, but it's a relief to be able to begin treatment sooner than later. I thought it would be necessary to treat the brain first before trying anything else.  It's awesome to possibly have the chance at trying something new.  Whole brain radiation and IPI both have their risks, but what is the alternative??  The brain issue has to be addressed. 

The radiation oncologist researched the idea for us after we suggested it.  He called some researchers doing a trial in Pennsylvania using IPI and radiation together.  They were combining the WBR with IPI.  They have not had any overwhelmingly negative side effects from combining the two and thought it's a combo worth investigating.

My prayers are with all who are going through this.  It's a relief to have other people that know what is going on.  It's too much information for the average, uninvolved person to digest.  The education and support from this website is a true gift.

Lisa (Scott's wife)

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shep's picture
Replies 5
Last reply 2/1/2013 - 1:33am
Replies by: JerryfromFauq, shep, POW, Janner

My daughter's biopsy came back as melanoma 1/22/13.  Her dermatologist told her it was 2mm deep but had her schedule a surgery to remove more with a surgeon. This procedure is to take place 2/7/13 along with a radioactive 'tracer(?)' test, I guess, to find out if it has metastized? Did the dermatologist ask her to see a surgeon because it could be deeper, or is this just a normal practice? Her appointment today with surgeon left us with more questions. He will be taking a 'diamond' tissue removal instead of 'circular'. This has no meaning to us, and she has not been 'up' to asking questions yet... thanks for any help!!

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Greg.R's picture
Replies 9
Last reply 1/31/2013 - 10:27pm

Hello ,

I am a Stage 4 pallative melanoma patient , I was intially diagnosed with the disease back in 2006.

My host site is behind my left knee which required extraction surgery.

I subsequently relapsed in 2007 ( left groin ) , 2009 ( right temple ) & 2010 ( right temple again ) these relapses all required extraction surgeries.

In August 2012 I discovered a new growth in my abdomen , after Ultrasound & CT scans I was informed that this was indeed a relapse.

Further investigation led to the dignosis that the metastasis had spread to the heart , lungs , back , brain and chestinal lymph nodes.

I was informed in September that my life expectancy is less than 12 months.I had extraction surgery on the abdomen in November.

Test results showed that I was positive for the BRAF mutation.

I began the BRAF clinical trial on January the 14th.

Since I began the BRAF  I have been enduring extreme symptoms that my oncologist does not feel are being caused by this treatment.

Symptoms have been as follows :
- Internal chest and back pain.
- Pressure from the brain feeling like it is pressing against my skull.
- Blackouts. Without warning ranging from 15 - 90 minutes.

- Uncontrollable vomiting.
- Hand Shaking / Tremors
- Nausea and Dizziness.
- Constipation.
- Fatigue.

The pain level have consistently been in the 7-8 pain scale range , decreasing to 4 - 6 though never disappearing completely. Pain is present 24/7. I have recently had my med's reassessed and have been been prescribed : Morphine 4 times per day ( 3 oral & 1 injection ) , Fentanyl 50gm slow release patch ; Metoclopramide 1 x 3 per day ; Maxolon injection 1 per day ; Dexmethsone 4 per day , plus 2 other medications to assist with the constipation.The constipation has increased dramatically in the last 5 days to the point where I am getting no relief from the medications that are supposed to assist  with this.

As you can well imagine I am at a loss as to what to do. This new drug program has been of some assistance , yet , the continual pain drowsiness   fatigue and now the high level of constipation related to taking so many medications is proving to be an enormous barrier in attempting to lead a "normal" life.

Before beginning the BRAF I had researched and found that the most participants only experienced sore joints , fatigue , skin irratations , rashes etc

i.e. none of the type of reactions I am getting.

Can anyone assist with any advice as to which direction I should take from here or any alternative therapies that may be of assistance ?

Thank you for taking the time to read my post and I look forward to your feedback.

Greg

FIGHT LIKE HELL !!

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/31/2013 - 10:23pm
Replies by: POW, MeNDave, Anonymous

I know lots of folks didn't know they had brain mets until a scan showed them.  

For other folks - just curious as to what type of symptoms they had before they showed up on a scan.  

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Carole K's picture
Replies 4
Last reply 1/31/2013 - 9:37pm

Hi Everyone,

For all intents I am concisdered to be an OLD TIMER on the board eventough I rarely post anymore.  I am still NED after a brain met for which I had surgery 12 years ago today at NYU Medical Center in NYC.  I am still amazed and every day I wake up and say IT'S A BEAUTIFUL DAY, I OPENED MY EYES TODAY. NO matter the storm, the rain in my life or with the weather I still find many blessings.

We all know the diagnosis of Brain Met is considered a death sentemce.  I was petrified until my oncoldogst said.. Carole, noone can tell you where the statistics come from , nor nos they wre arrived at or how old they are. YOU ARE AN INDIVIDUAL AND YOU ARE DIFGFERENT FROM EVERYONE ELSE.  Those words stuc with me and still do to this day, 

I have been blessed to see both of my daughters married and three incredible grandchildren brought into the world and a fourth one on the way and a hopefully a fith one by the end of the year. What more could I ask for.  I spend so much time with my grandchidlren who make me smile and at times make me cry wiht a big kiss or a cry as I leave and say goodbye.  Wow.. I wouldn't  trade it for anything in the world.  No amoung of money could buy this happiness. 

To each and everyone of you on this journey, take a deep breath, try to find the gifts, there are many and yet at times I know how difficult it is to find them. the past 12 years have not been easy in many ways,.  I have lost far too  many loved ones, far too many Melanoma Patients I have connected with, a huge financial loss and at the same time I have witnessed two daughers being married, three grandhcidren being born, I have built a new house, I have traveled far and wide to meet so many of you , WE have shared laughter, tears and joy and I am so eternally gratefull to each and everyone who havr crossed my ;path.  You have brought me smiles, joys and laughtert at the times I have needed it most. You have brought me sanity in those times of insanity. You have brought me hope in times of Fear,Laughter in times of sorrw and most of all Love and Light I will teasure forever.

ONE NIGHT AT A PARTY MY DAUGHTERS HAD THE SONG   YOU ARE SIMPLY THE BEST, BETTER THAN ALL THE REST playerd for me. I  dediacate this song to all of you.  HANG TOUGH.. NEVER EVER EVER GIVE UP HOPE.  and To each and everyone of you I dedicate my song to my daughters.  Celine Dion  BECAUSE YOU LOVED ME.  Many years ago I also dedicated that song to two people I met on MPIP who are a huge part of my life to this day... Chip and Bonnie whose strngth and courage helped me through the most difficult time of my life. Despite the fact they were in the mdst of a very diffcult time of their own they were ther then and continue to be with me today.. 12 years later. Thang you All.

Love and Ligth

Carole K

IF I CAN BE OF ANY HELP EM AIL ME ATmm MMPatientSupport@aol.com  

LOVE AND LIGHT

CAROLE

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tim duduit's picture
Replies 3
Last reply 1/31/2013 - 3:52pm
Replies by: Anonymous, aldakota22, Tim--MRF

After 8 weeks on the CDK 4/6 Dual Inhibitor Trial medication (a protein uptake inhibitor), my tumor has not grown!  It's still the size of a quarter and I'm continuing on the medication since I'm deriving a benifit from it.  Thanks to the great folks at the START Center for Cancer Care here in San Antonio for this great opportunity.

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Allen C's picture
Replies 10
Last reply 1/31/2013 - 3:46pm

Hello to all the old timers. Allen Carr from here in MIami FL Checking in. IT has been over three years since I visited the MPIP. I have been doing fine. Last three or Four PET/CAT scans have been negative. Shaking hands with NED again. For you that don't know me I have been dealing with Melanoma since 1996 when a spot on my back started bleeding and biopsy showed it to be Melanoma.  IN 1999 it went into both lungs. Surgery for both a week apart. In 2002 it went inot my Pulmonary artery even after a year of interferon and 32 months of GM-CSF. God has been good to me and through of holistic medicine I am no longer a Stage IV  person but now NED. Just thought I would check in and thank again all the people that have helped me in the last 17+ years of deealing with this Insidious disease. I talked to Jeff Patterson the other day for a short talk. Keep in touch with Martie Wrock another loing time survivor. I miss the old BB people but not the agrevation that sometimes went on. 5 years ago I was diagnosed with prostate cancer but it is under control with the hormone therapy "Lupron" last PSA was 0.3

Some of you people met my wife Carol in get togethers but I lost her to Brain Cancer last May. She is in a better place no Pain no more Chemo or surgery. I have her up in Lake Worth at the south FL National Cememtery and visit her often.

 

My Pat Net is under Allen C and I believe my home phone number is listed. MY email is redneck_77@att.net if any one wants to get in touch with me. I turned 79 this month and feeling fine and willing to help anyone that wants to hear about my road to NED.

 

May GOD Bless each and every one of you dealing with this disease and if there is anything I can do please email me and we can talk.

 

Allen Carr

Have a great day and a better tomorrow

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Managing Melanoma in a Quickly Changing Landscape: Understanding the Latest Treatment Options

February 11, 2013 - 11 a.m. - 12 p.m. EST

REGISTER TODAY for this free educational webinar for people with melanoma, caregivers and medical professionals

After receiving a melanoma diagnosis, what's the first step in getting the best treatment? Do you know all your treatment options?

Melanoma researchers have made great strides in treating melanoma in recent years and many promising drugs are just around the corner. These advances, while exciting, highlight the importance of staying on top of the recent developments.

The MRF is proud to host this live webinar to discuss the latest in treatment options, what you should know about accessing care, and why clinical trials are especially relevant to people with melanoma. We urge you to join us. People who are educated and informed about their care options tend to live longer and better lives.

This free webinar will be led by top melanoma experts including:

Lynn M. Schuchter, M.D., Chief, Hematology Oncology, University of Pennsylvania Department of Medicine

Michael B. Atkins, M.D., Deputy Director, Georgetown-Lombardi Comprehensive Cancer Center

Anna C. Pavlick, D.O., Co-Director, New York University Langone Medical Center Melanoma Program

Join us at 11 a.m. - 12 p.m. EST, February 11, 2013 

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DeniseK's picture
Replies 12
Last reply 1/31/2013 - 12:03am

Hi Everyone,
Well it's been a week since I saw Dr. Minor in San Fran. What a great visit.
One of my first questions was would he have done wbr on one brain lesion, his answer was no. Well I was disappointed that was the case but it's over and done so the positive is that if there were cells cruising around up there they most likely would be stopped.
I had been on z for about 9 days when I saw Dr. Minor, I had a horrible red, itchy, rash/burn all over my head, this concerned him so he took me off z fora week and iI've been applying a cortaid creme 4xs a day for the last week. My head is getting better.
I've finished the meds for thrush and food is tasting better, but I've been off z too so not sure if that will come back. I've been sleeping a lot!! Like all day for days. Probably from the wbr.
He's sending me to see a great dermatologist Dr. Kashani. Every mole on my body is surrounded with a red ring. I have basal cell diagnosed under my right eye that noone has addressed.
What I found concerning is noone has tested my LDH levels until now. I don't know the results yet but at least I've been tested now. He's got what I feel a pretty good treatment plan that makes total sense. I'm going to stay on z for 3-4 months to reduce or eliminate my tumor load, depending on what happens with my brain I will then do ipi or bio chemo.
He did say that the mek was due to be fda approved along with dabrafentib (spelling) the othe braf inhibitor was due out in the 2nd quarter this year, possibly anti pd 1 this year as well. Very good news!!
He said no to the ketogenic diet because it can mess with your liver enzymes which isn't good while on z and preparing for ipi or bio chemo.
After 9 days of z and off for 3days I got some pretty debilitating knee pain and bottom of feet pain, it went away 2days later but man oh man that wasn't fun, if it happens in both knees I'm gonna need a little rascal to get around.
I've been meaning to post earlier but sleeping became priority. Overall I'm doing good very mild headaches, a bit emotional, and a positive outlook for the future with a treatment plan in action. The top priority is brain stability, this could open more doors for treatment in trials. But for now it's day to day's. Brain mri on February 15 then I go back. I got a lot of hope for all of us in this fight that this can be beat and with more and more drugs coming its a matter of time till a cure comes.
All my best to you all,
Denise :)

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Hi Everyone,

For all intents I am concisdered to be an OLD TIMER on the board eventough I rarely post anymore.  I am still NED after a brain met for which I had surgery 12 years ago today at NYU Medical Center in NYC.  I am still amazed and every day I wake up and say IT'S A BEAUTIFUL DAY, I OPENED MY EYES TODAY. NO matter the storm, the rain in my life or with the weather I still find many blessings.

We all know the diagnosis of Brain Met is considered a death sentemce.  I was petrified until my oncoldogst said.. Carole, noone can tell you where the statistics come from , nor nos they wre arrived at or how old they are. YOU ARE AN INDIVIDUAL AND YOU ARE DIFGFERENT FROM EVERYONE ELSE.  Those words stuc with me and still do to this day, 

I have been blessed to see both of my daughters married and three incredible grandchildren brought into the world and a fourth one on the way and a hopefully a fith one by the end of the year. What more could I ask for.  I spend so much time with my grandchidlren who make me smile and at times make me cry wiht a big kiss or a cry as I leave and say goodbye.  Wow.. I wouldn't  trade it for anything in the world.  No amoung of money could buy this happiness. 

To each and everyone of you on this journey, take a deep breath, try to find the gifts, there are many and yet at times I know how difficult it is to find them. the past 12 years have not been easy in many ways,.  I have lost far too  many loved ones, far too many Melanoma Patients I have connected with, a huge financial loss and at the same time I have witnessed two daughers being married, three grandhcidren being born, I have built a new house, I have traveled far and wide to meet so many of you , WE have shared laughter, tears and joy and I am so eternally gratefull to each and everyone who havr crossed my ;path.  You have brought me smiles, joys and laughtert at the times I have needed it most. You have brought me sanity in those times of insanity. You have brought me hope in times of Fear,Laughter in times of sorrw and most of all Love and Light I will teasure forever.

ONE NIGHT AT A PARTY MY DAUGHTERS HAD THE SONG   YOU ARE SIMPLY THE BEST, BETTER THAN ALL THE REST playerd for me. I  dediacate this song to all of you.  HANG TOUGH.. NEVER EVER EVER GIVE UP HOPE.  and To each and everyone of you I dedicate my song to my daughters.  Celine Dion  BECAUSE YOU LOVED ME.  Many years ago I also dedicated that song to two people I met on MPIP who are a huge part of my life to this day... Chip and Bonnie whose strngth and courage helped me through the most difficult time of my life. Despite the fact they were in the mdst of a very diffcult time of their own they were ther then and continue to be with me today.. 12 years later. Thang you All.

Love and Ligth

Carole K

IF I CAN BE OF ANY HELP EM AIL ME ATmm MMPatientSupport@aol.com  

LOVE AND LIGHT

CAROLE

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94z28joe's picture
Replies 7
Last reply 1/30/2013 - 8:48pm
Replies by: NYKaren, sgrain, 94z28joe, Ali, POW

So its been alittle over a week since my first infusion of ippi and it seems like I am already having side effects. Started last week with my abdomin area felt like I ate something really spicy(which I didn't). Then on Monday had some stomach issue and diearria took some imoduim and went to see the on call doc he said didnt think it was ippi related. Yesterday I started feeling really fatigued I went to sleep as soon as I got home from work only to wake up at 10 with stomach issues agian took some more imodium so far so good agian contacted the doctors office and they said just keep using imodium. I didnt expect to have the stomach issues and fatigue a week after the first does. Hopefully i gets better and not worse with the other does...yeah right I dont see that happening.

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Judy D's picture
Replies 10
Last reply 1/30/2013 - 7:49pm

I am stage IV and am on Zelboraff. I recently have had two different nodes removed from my right thigh. My dr. Is recommending that I get a consult with a radiation oncologist. My question is has anyone done radiation for their melanoma and what was it like? Thank you for any advice on this subject.
Sincerely, Judy

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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