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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ruby's picture
Replies 1
Last reply 3/15/2013 - 1:10am
Replies by: democat

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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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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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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cwu's picture
Replies 3
Last reply 3/7/2013 - 12:24pm
Replies by: Erinmay22, cwu

Hi everyone,

It has been some time since I last posted although I have been reading the posts to keep up with everyone.  My dad's last treatment with Yervoy was in November 2011 and he had a bad reaction after his last dose.  He was hospitalized for about a week for low sodium and he lost control of his speech and movements.  The oncologist said it was a reaction from Yervoy that caused swelling in his brain and he was treated with steriods.  In April/May 2012 he also had radiation on an area of his leg to control the bleeding from the lesions and it did stop the bleeding.  His oncologist think he had a partial response to Yervoy in slowing down the cancer and some (not all) of his lesions flattened although they didn't go away. A couple of months ago, he noticed two hard golf-ball sized lumps in his groin area.  His oncologist wants to do a pet scan and said we can either do a second round of Yervoy, chemo, or do nothing.  He doesnt have any symptoms of the disease progressing and his bloodwork seems to be normal.  Do the lumps means that his cancer has spread the lymph nodes in that area?

I know some of you have done Yervoy reinduction and was wondering whether it worked for you. Also were the side effects the same,  different or worse than the first time you did Yervoy.  I can't remember reading anything on how effective a reinduction of Yervoy is, especially for partial responders.  Also, I am concerned that dad may not be able to tolerate it since he had such bad reaction last time.  Please let me know any suggestions or advice.

Thank you everyone,

Chau

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bkinman's picture
Replies 7
Last reply 4/11/2013 - 5:17pm

I see on here where many people are dealing with joint pain from the Zelboraf.  I just started it 2/21/13 and started 3 pills twice a day on 2/28/13. Within 3 days of the increased dose I had a terible rash all over and terrible joint pain.  I could hardly walk. I am still working and need to as long as I can.  Are you guys living with severe joint pain that keeps you from walking, grasping a pen, pouring a glass drinkg from a bottle/pitcher? THe onc. took me off z yesterday for a few days.  He said if I was better enough Friday (3 days off) I could start back on the z otherwise come to see him Monday and we will asses and start back on the low dose. I can put up with the itching even though it is terrible, but I cant function with the severtiy of joint pain I had the last 2 days.  It is getting better today and is tolerable.  I am back at work. Any input would be greatly appreciated.

 

Becky

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I see on here where many people are dealing with joint pain from the Zelboraf.  I just started it 2/21/13 and started 3 pills twice a day on 2/28/13. Within 3 days of the increased dose I had a terible rash all over and terrible joint pain.  I could hardly walk. I am still working and need to as long as I can.  Are you guys living with severe joint pain that keeps you from walking, grasping a pen, pouring a glass drinkg from a bottle/pitcher? THe onc. took me off z yesterday for a few days.  He said if I was better enough Friday (3 days off) I could start back on the z otherwise come to see him Monday and we will asses and start back on the low dose. I can put up with the itching even though it is terrible, but I cant function with the severtiy of joint pain I had the last 2 days.  It is getting better today and is tolerable.  I am back at work. Any input would be greatly appreciated.

 

Becky

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Gene_S's picture
Replies 1
Last reply 3/6/2013 - 1:58pm
Replies by: susanr

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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pd1gal's picture
Replies 3
Last reply 3/7/2013 - 11:09am

Any progress or status on when the Chat Room will be functional? Still having same problem of Chat Room loading then going to a blank screen.

 

Holly

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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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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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Karin L's picture
Replies 8
Last reply 3/7/2013 - 10:39am

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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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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I met with the surgeon today. (WLE = clean, SLN = 0.1mm micromets, Stage 3a). Two oncologists recommend CALND. 

Surgeon says CALND is NOT "curative", but rather a tool for staging purposes. He said the ONLY reason for this surgery is to determine if my other nodes have mets. If not, it means little because the melanoma could have slipped through the lymph and is waiting to colonize somewhere in my body. If I do have more affected lymph nodes, it would increase my stage and I could consider a clinical trial--and I'd probably have metastatic disease waiting to happen. 

He told me that either way (surgery or no), my chances of survival are exactly the same. I'm not sure how this could be. While the treatments for melanoma aren't many, we do have SOME weapons in the arsenal. 

I feel really down at this news and am unsure how to proceed. 

Any advice or insight is greatly appreciated. 

 

 

 

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