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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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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Anonymous's picture
Anonymous
Replies 0

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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Anonymous's picture
Anonymous
Replies 0

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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dellriol's picture
Replies 8
Last reply 3/15/2013 - 2:21pm

Just over a year ago I lost the use of the entire right side of my body when a brain met I didn't know I had started bleeding.  After craniotomy, scans showed more tumors: one more brain and 5 or six lung tumors.  I spent a month in rehab learning to walk again, then started on zelboraf for the tumors. I started taking an arthritis class at the YMCA in case the medicine started causing joint pain.  I've been hospitalized twice more, for liver problems from meds, and for a transient ocular ischemia. We are now a year later,and my tumors have shrunk but are still there.  I've stayed out of the hospital for 6 months.  My YMCA class morphed into lap swimming. So for my 1 year anniversary, I swam a full mile.  It was amazing to me to think that in one year I've accomplished that much, from being right side paralyzed to a one mile swim.  LET ME TELL YOU, GOD IS GREAT!

This ain't no hill for a stepper.

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dian in spokane's picture
Replies 4
Last reply 3/6/2013 - 11:04am

I'm sure plenty of you still remember Vern and Nancy Dutton. Nancy was on interferon the same time as AmyB and King and me. And she and Vern drove their motor home to texas for the big MPIP Bash there.

Keep her in your thoughts and prayers.

http://www.caringbridge.org/visit/nancydutton

 

dian in spokane

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sjl's picture
Replies 1
Last reply 3/5/2013 - 10:58am
Replies by: G-Samsa

My husband received his second round of yervoy ten days ago after a new lump popped up under the skin of his neck and another one began to grow agian.  Since then, the two tumors have changed shape, size, gotten harder, softer, etc and I understand that all of this could be because of the yervoy and that it will take some time to know if it is working.  A couple days ago he got up and said his jaw had hurt during the night.  Yesterday I noticed new growth along the jaw line. I could see it acrosss the room.  It's hard as a rock and last night he couldn't sleep because of the jaw pain.  I'm worried sick.  I know it's melanoma growing again and I'm afraid it will take off like it did last summer when it grew everyday until things reached gigantic proportions before beginning treatment.  You can check my profile if you need more information.  We are waiting for a call from his doctor.  He is braf and cKit negatice, NRAS positive but ineligible for clinical trials because of a secondary primary lung cancer that was treated in October.  Carbo/Taxol failed and I don't know what else can be done for him.  He had to go the chemo route initially because things were growing so fast and the only other treatment mentioned at that time was IL2, which the doctor said he couldn't handle.  Maybe he can now, I don't know.  Any ideas on other options and what we should be asking the doctor?  If this takes off like it did last summer we won't have much time to get things taken care of.

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Muru's picture
Replies 7
Last reply 5/12/2013 - 8:03am
Replies by: Muru, Anonymous, Tim--MRF

Hi All,

 

I had mucosal melanoma in Tongue in 2007 and my 2/3 of the tongue has been removed. I was under constant observation. I was cancer free for 5.5 years. Now melanoma has recurred again in my larynx area. As per PET CT it has not spread to any other part of the body. Now my entire Voice Box has been removed on Feb 6th 2013. I got discharged from the hospital on Feb 24th and I am still in recovery mode.

No Molecular studies like (BRAF mutation) are done so far. I am trying to get this done in a couple of weeks. Meanwhile how do I make sure that this won't come again. Please share your views/Ideas.

Do We have any good drugs available to fight against Melanoma.

 

Thanks,

Muru

India 

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I found this while reading throuh Angeles Clinic  (Los Angeles, CA) latest info.  I don't know anything more about it but I am sure if it is something that can help someone you can find out.heart

BRAF/MEK -   BRIM 7: BRAF and MEK Inhibition with Vemurafenib and GDC-0973 in Patients with BRAF V600 Mutated Advanced Melanoma * available for patients progressed on Vemurafeib or Vemurafenib naieve

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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kpcollins31's picture
Replies 35
Last reply 4/29/2013 - 11:16am

Let me start by saying that I am stage 3c, 39 years old, and undergoing no treatment currently. I had surgery in Sep 2012 to remove a single infected lymph node in my upper left arm... they took a few sentinal nodes as well and they were all clear. I am seeing a melanoma specialist (Dr. John Stewart at Wake Forest Baptist Health) who does not really believe in scans, but he did plan to do another PET scan at the 1 year mark.

So my question is, how do you know if you have a problem? I feel great - I have started eating better and lost some weight. I hit the gym hard several times a week and feel stronger than I have in years. Does some physical symptom typically manifest itself if you become stage 4?  How many people cruise along thinking everything is great and then have some kind of routine scan to find out otherwise?   

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