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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Cielo's picture
Replies 6
Last reply 3/10/2013 - 11:00pm
Replies by: Cielo, kylez, POW, Janner

Can anyone who had these kinds of treatments please tell us about it? My husband has brain mets and we would like to be informed ahead of time before we see doctors next week.  These were suggested by our Oncologist for possible treatments.  We have sleepless nights, trying to decide what's best. We haven't lost hope and my husband wants to keep fighting but can he endure the treatments.  He is 66 years old and very weak.  He has been on Zelboraf for eleven months.  MRI lately showed metastases to the brain.  Scans on chest, pelvis and abdomen showed healing and stabilizing.  Thank you.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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Anonymous's picture
Anonymous
Replies 12
Last reply 3/10/2013 - 9:59am

I've had melanoma a long time. When I advanced to stage 3 ten years ago, I started contemplating death. I'm not a big believer in these "gifts' they say cancer brings you. I don't feel a bit lucky to have it. But it occured to me long ago, that death takes most people by surprise, and that knowing that your time is short gives you the opportunity to ..make your friendships deeper, bring meaning to your life, and prepare for death.

By that I mean.. spiritually and emotionally coming to grips with something we all face, not just all cancer patients, but every single person. The most common event to human beings..as common as birth. Nothing else is so universal. It's also the source of a lot of fear, fear of the unknown mostly.  So you'd think we would ALL be ready for it when it comes. Instead we often spend most of our lives avoiding even considering death.

During times of good health, remissions, I've tried to discuss death with my husband. It took a long while to even get him to go with me and make legal arrangements, wills and such, which really, we should have taken care of when we got married 25 yrs ago. But if I even bring up the idea of say..what kind of funeral or memorial I might want, he gets crazy. I even tried to talk him into making arrangements ahead of time for funerals for both of us, telling him it would make me feel better to just know it was dealt with.So our children don't have to deal with it. He won't hear of it. God forbid I do anything like trying to clean out all the decades of junk I have around this place so he won't have to deal with it later...I have to do that in small doses, while he's working, so he won't notice.

But it's the spiritual and emotional aspects of dying I want to look at most of all, and it seems there is not a single person in my life I can discuss death with, without them breaking into tears. Maybe I need to see a counselor, since I am not a religious person, nor even a believer, I can't see a clergyman.

Still, I feel like I've made progress on my own contemplations of death. I feel much less fear of it now than I did 10 yrs ago. And I'm even comfortable with the fact that melanoma will probably take me one of these days. I don't feel much fear about death itself, since it IS so common after all.

But now I am facing this huge treatment ordeal. I know I need to get courageous, and be strong, but.. I'm feeling weak, and a little resigned. Like, all this time, I've always thought I would win, but now I'm feeling like I am just forestalling the inevitable. I think this is a bad attitude to take into treatment.

Now, I'm also not one of those people who believe a 'positive attitude' will save me. I've been around here a long time, and I've seen very positive people die. And I've seen very spiritual people die. People often talk to me about my positive attitude, and I mostly have one...but I don't believe cancer has a clue or a care whether it's host is positive or despondant.  So I don't think that just thinking about death is going to cause me to die!

Nevertheless...I'd like to set aside these thoughts of death and try to build my courage for treatment. I know that going into it believing it will work will help me face the discomfort of the treatment.

I am not sure how to find a balance. Somehow, I'd like to be able to be accepting of the inevitablity of my own death, while at the same time, visualizing myself making it through treatment and into remission again.

I've seen people here face treatment AND death with such courage, and I'd like that for myself. To face it all with grace and courage. I'd like to find my way to it.

I post this anonymously because sometimes my loved ones read here, and because I believe that these thoughts are in many of us here. 

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ruby's picture
Replies 7
Last reply 3/10/2013 - 3:45am
Replies by: ruby, Prd10, Tina D, Hstevens0072

Hi all

I would welcome anyones advice here please

I first had a 0.9mm melanoma remove from my skin in 2008 31/12/2012 I was diagnosed with a 3 mm local recurrent in the scar line this has been removed and I have been lucky enough to be told negative node after SLNB.

 

I have now bee told to take interferon for 4 weeks high dose and then 12 months delf administered... I have a 8 month old baby to look after a 13 year old daughter and am scared I will not cope whilst on the course I also live in ireland away from all my family I am put off my the bad side effects but also dont want to regret not taking this chance to see off the monster your thoughts advice anythink welcomed as this is the hardest of decisions..

 

thank you

 

rachel

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mark d's picture
Replies 5
Last reply 3/9/2013 - 8:44pm

I was diagnosed with nodular mel. on Feb 1. I had surgery on the 27th to remove my earlobe and SNB in my neck. Well one node came back positive and I have to get my neck completely cleaned out now. The only treatment I am authorized is interferon because the Army only approves that right now. I just want to know how others have reacted with this treatment. How sick were you. How successful were you. How many treatments were given. Since my Mel was on my ear it is kinda difficult to treat with conventional methods. Thanks for the info and this site for support.

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Hello everyone. I was diagnosed with Melanoma in-situ last June. I had my wide local excision on my calf and everything has been fine since.

I just had my checkup and had two moles biopsied. One came back as squamous cell carcinoma which they say they will freeze the remaining borders.

The other came back as an atypical/precancerous mole (that was the words the nurse used). She said I will need to have an exicision for the atypical mole. I was kind of stunned at the time so I didn't really question it but the more I look into things this seems to be a very agressive treatment, even with my history of melanoma.

I left a message for the derm to call my back. The lesion in on the back of my shoulder- kind of where my bra strap sits. I also have concern about there being enough skin for an excision. I am pretty thin and it sits right on top of a bone.

Anyway, I am curious to see what everyone thinks of this treatment plan. I can't find much information at all about WLE's for atypical moles.

Thank you in advance.

Amanda

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sharmon's picture
Replies 9
Last reply 3/8/2013 - 11:04pm

Hi,  a lot has happened in the last month.  First he failed the anti pd 1 trial.  The happened end of January.  Pain was uncontrollable due to crushed vertebra and bone mets. Surgery, pain pump followed by radiation is behind him.  Last week we flew to MD Anderson. This is where it gets confusing.  Brent is C-Kit negative. but  they want him to try a trial which is ippi and gleevec.  His original melanoma was under his toenail.

I questioned the fact that he was a Mek responder and Braf negative. I was told he was on a few of the people who were braf negative and a responder to MEk.  DR. agreed that is a good point but insurance will not pay for braf drug.  Mek is downstream from Braf. 

Brents done very well on radiation.  He was able to fly to Houston and back without much trouble.  His blood work is good considering he has had two weeks of radiation recently.

Dr. Weber doesn't want to see him anymore since he failed the anti pd 1 trial.  Says there is nothing at moffit for him.

Do I need a new local oncoligist to help me?

We have been to Karmanos in Michagan ,  Sarah Cannon in Nashville. and OHIO state.  Should I call them?

Md Anderson will put him on the IPPi Trial with Gleevac but WHY if he not C kit?

I don't write as well as some and am trying to make my point quickly.  IT is I need input and help in this maze.  I am so confused. 

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tjndnd's picture
Replies 5
Last reply 3/8/2013 - 4:09pm
Replies by: tjndnd, lou2, Anonymous, POW

Hi,

Just wanted to share this since I've seen a lot of questions regarding the topic, and because of how much of a hassle it was to find insurance for my wife.

My wife and I are in our early 30's - so we weren't thinking too much about life insurance - until my wife's diagnosis.  She was diagnosed with spitzoid melanoma, no-ulcerated, 1.1mm, no mitotic rate, clarks level 4.  Her SNB came back negative.

After we got the SNB results, I called various life insurance company's - most of which told me that there was a "seasoning" period, or that the annual premiums would be $1500-1700. 

I finally called a "broker" type company - who found multiple carriers who would insure my wife.  One was a MAJOR company - highly rated - and she was quoted at 30 bucks a month for a 30 year term policy of $250,000.  I didn't believe this, and asked if melanoma was excluded.  She said no - there were no exclusions. 

Just got the policy yesterday, and it was indeed 33 and change a month.  I'm not here to "advertise" - but just letting you know with a little determination you can indeed find life insurance after a recent diagnosis.  It probably will obviously depend on how serious the invasion is however, and if it's spread the lymph nodes or not.

 

Thanks!

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Karin L's picture
Replies 1
Last reply 3/8/2013 - 4:02pm
Replies by: Jeff's Mom

Well, as of Friday the team of Drs. Believe with little or no treatments available this is the way to go. ; ( . Hospice is now available. Mel has progresses.. Mainly in my bones....now the buttocks. Failed Oncovex. Tried IL2 which gave me a few months. Tried Zel however I have the K mutation and could never get to full strength due to side affects, I suffered one at the same time. We then tried Yervoy but it kept getting interrupted due to pain and steroid use. I continued the Zel Throughout. Without repeating here I am. I was offered the PD-1 trial just recently but a few things excluded me. Number of treatments (which I BEGGED) the doctor to not do . The fact I cannot walk. What a letdown. If anyone knows of a treatment I could try that my body could handle please let me know. My spirit was broken with the turnarounds via the 2 DrsI haven't been around in a while. Last time here Kevin had passed. Anyone else I might know I can say a prayer for?

Karin

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Hi all. It's been years since I've posted as I've been stage 3 since 1998. Now stage 4, lung nodule removed in right lung last year, now new tumors in right and left lungs. Did 3 months of yervoy and tumors spread in both lungs. Started zelboraf and after 8 days stopped due to severe rash. A week of steroids then half dose of zelboraf for a week. AST (liver functions) test went from 25 to 382 so now half of that dose (1 pill twice a day) and still have the rash. I have a pet scan next week and my question is, if liver function test still high and not much improvement, what is next? Anyone know of good trials going on when both yervoy and zelboraf fail? Getting really scared now.

Much luck to all in beating this thing?

Sandy

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Richard_K's picture
Replies 11
Last reply 3/8/2013 - 10:07am

 

It was three years ago today that I took my first dose of Zelboraf.  I passed my exam and scans last week (bilirubin still a concern) and I’m set to go for another six weeks. 

Dick

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joycedixon's picture
Replies 3
Last reply 3/8/2013 - 9:59am

I will be starting zelboraf  soon. I will have MRI on liver and if  it is not involved

-surgery on lung and mass in thigh  may occur.There is a spot near liver --scan not clear on

whether on or by--I have already read enough about the effects of lung surgery to wonder whether that would work for me.

I am in good health but am 72 and do not want to spend months recuperating.I love helping  toddler grandchildren-carpool,child care

and celebrations. Any sharing of experience or wisdom is appreciated--I know that God will direct me but I know he uses others to

help.

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awillett1991's picture
Replies 1
Last reply 3/8/2013 - 9:08am
Replies by: Tina D

Tina - are you prowling around out here ? How are you doing??

Prayers - Amy

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/8/2013 - 4:03am
Replies by: Anonymous, Janner
In May, 2012, I had a biopsy (one of many since melanoma) that was "Compound Clark's nevus". no evidence of malignancy. . melanocytes extended to the margins. . now I've noticed there is some pigment back in the center. If it was benign to begin with, is there reason to have it excised again/re-excised?

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Colleen66's picture
Replies 5
Last reply 3/7/2013 - 9:43pm

I have lymphedema in my left leg.  I do the self massage and wear a stocking during the day.  Two things I have learned in the last 3 months.  I can only sleep on my right side or back, this leaves the left open to drain during the night.  This was hard for me cuz I always slept on my left side so I piled firm pillows at my back so I wouldn't roll over in my sleep.  Second thing I learned is don't buy a drugstore stocking.  It needs to fit correctly and have the right compression, I use a 30. 

I missed my opportunity to get to the specialist in a timely manner because of my interferon treatments.   I'm probably not alone in that category but I did learn the message technique from a YouTube video and figured the rest out as I went.

Anyone else have any tips?

Colleen 

Live!

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SteveT's picture
Replies 10
Last reply 3/7/2013 - 9:35pm
Replies by: hbecker, SteveT, Josh, POW, doro, Gene_S, Fen

 

Hello,

This is my first post. I was diagnosed 3b in January and will be having surgery at UNC Chapel Hill on March 11. Primary tumor on top of my head, spread to lymph nodes behind my left ear. I'll have a WLE and a modified radical neck dissection.

I'm self employed and do moderately physical work. I love my work and would like to get back as soon as possible. What are recovery times for these procedures? I know everybody is different but I'm curious what others have experienced. I'm assuming neck flexibility is the last thing to return, but what about arm strength and the endurance to spend the day on my feet?

Many thanks, Steve

Make today count

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