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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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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audgator's picture
Replies 6
Last reply 3/6/2013 - 10:12pm

First let me say I know I am talking about very small lesions and some readers will be dealing with much scarier issues, but I also know they will not begrudge me my present apprehension. Two of the things I love about Moffitt are the friendly optimism of my oncologist and the fact she almost always gives me the results of my scans the same day. This time I scheduled my appointments over 2 days with the CT & MRI yesterday afternoon and consultation and infusion today. Due to backups in Radiology my MRI was not finished until 7 PM last night. When I saw the doc this morning she did not have the report yet but had looked at the pix. She was pleased saying that my mets continue to shrink. She also points out that she is looking at the images in B&W on a 15" monitor and the radiologists have bigger & sharper screens. The trial coordinator brought in the report Just before we left but I did not read it until we got home.  So these are the sizes in mm with previous sizes in ( ): 4x1 (3x1);  5x3 (4x1);  5x3 (5x5); 5x4 (4x4).  OK so 2 are down but 2 are up which she did not mention.  We did talk about a splenic lesion that continues to grow and is at 2.1 cm now.  She does not think that will affect my trial eligibility and we will continue to watch it with the possibility of surgery if all goes well with the others.

Comments? 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/5/2013 - 5:27pm
Replies by: Janner

Hi everyone. I am looking for some first hand information and advice about my fathers battle with melanoma. Im an only child and he is divorced so I am the primary care giver and want as much information to help him as possible. If you guys could offer any insight it would be greatly appreciated! Here is his backstory... My father has had several small melanomas removed throughout his life most likely due to being a rancher and oil man and out in the sun way too much. However in September of 2011 a small black and ulcerated melanoma with a thickness between 2 and 4 millimeters that was ulcerated and spread into the top two layers of tissue but not the muscle. He had a PET scan that was suprisngly clear and they did a wide excision with clear margins leaving a large dent and a 5 inch scar. He went for his regular check ups and everything was ok. Then this week March 4 2013 he called me and said his back hurt where his surgery site was and asked me to look at it. Its in a spot you cannot see yourself. What I saw was very alarming. At the site of the wide excision is one lump the size of a ping pong ball and another above it but attached to it the size of a quarter. They both protrude from the skin and are red and the largest one is ulcerated. He says it is very painful and he cannot lay on it or stretch his arms and pull on that area.I made an appt with the dermatologist right away and he will be seen this afternoon. This seems to have happened very quickly yet they are so big. This disease is nasty and quick I guess. Has anyone had a larger reoccurence at the orginal site and does this most likely mean we will find it spread to other places. Another thing to note is his health is not good in the first place and it makes it hard to notice things that could be caused by a spread of the meanoma to an organ. He has severe COPD and developing early memory problems which have been worse the last several months. He does have a family history of alzheimers and is about to turn 69. Any help or insight is appreciated. I know we will not know anything for certain until the dr sees him and we get more tests, but does this sounds pretty bad? It sure looks awful and Im scared but able to face the harsh reality that we could be in for a fight here. Thanks again!

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