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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lovingwifedeb's picture
Replies 20
Last reply 8/28/2010 - 10:17am

My husband, Bob thought the song from The Gambler, from Kenny Rogers was appropriate after his doctor's visit on Friday so I will work with him on this one hard as it might be. Betting is all about percentages, so if you are a betting man/woman and the stakes are high it just might be an all or nothing bet for you if your life is involved. This is how it went down for Bob with the melanoma specialist in the Portland area on Friday.

 

Facts:

• Bob has melanoma stage 3, it's been 30 days after surgery

• For most people with stage 3, this gives you odds of 50/50 of getting melanoma again of a more life threatening development within 5 years which turns into stage 4.

• Because of the size of Bob's tumor which was 2-3 inches, which was taken during surgery, his odds have now become 70-30 of getting melanoma again within 5 years and will threaten his life, stage 4.

• Treatment available for Bob:

1. Interferon: treatment for 1 year, makes you sick like flu, 5% works

2. Vaccine: made with protein from Bob's tumor, builds up his immunity so his body recognizes melanoma as an enemy and kills it. Clinical Trial, 2 people on, 1 person off, – NO GUARANTEE

3. Do nothing and wait

 

Reality Check:

The mean probability of death by car accident for United States residents is 1.49%. Source(s) 2005

 

Choices...

So, it was an emotional charged Friday when we met after work, talking about his doctor's appointment. It was hard seeing Bob realize his future in numbers for the first time in these many weeks. As much as I wanted to be there for that doctor's appointment when Bob told me that he had broken down for the first hearing about his uncertain future I knew reality had set in . Still trying to grasp the facts of this disease, the way it works against you fighting to take your life away and everything you have worked for this became no longer impersonal.

It was the first time I didn't know what to say to Bob. So far I have tried to be there for him and try to feel what he must be thinking and feeling but I guess there comes a time when a person has to walk that walk alone. It's a head on collision and I certainly was not ready for it so I know Bob was not either. So, is the glass half empty or is it half full? Which side of the door are we standing in? 70/30 Is this an all or nothing bet?

If you believe in religion you get a free pass and turn it over to a God to share your burden and let it be taken from your shoulders so you can forget about it.

But... in my heart and in my mind it's not that simple. This earth is powerful in its clutches and for those who remain here and we can't help but feel forsaken. Love I feel is a powerful gift and my only hope is that whatever time Bob and I have together our marriage stays strong and true during this trial and that our love brings a brighter light into who are for each other.

Here's my promise to you, Bob. I will try to not take you for granted after today, and to take time out and enjoy our lives in whatever way possible within our means. I am behind you100% and that you can count on. If you had to bet on anything in your life it would be that I love you with all my heart and soul. I will support you in whatever decision you make when it comes to your health care. It is your life we are talking about but it is your "Quality of Life" I am reminding you about too. Selfish as I might get at times I do want you with me but I also want you to be happy here.

Follow our family blog site:

http://redesign08.blogspot.com/

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Jenjen's picture
Replies 5
Last reply 8/23/2010 - 1:53pm

Hi all,

 

Just wanted to let you know I had my 3rd PET/CT last week and it went well. Still shows NED after a little over one year. I was diagnosed last July at age 26 with stage 3a melanoma on my foot. Currently in my 9 month of interferon injections and although it sucks..i am almost done ! Sending myself to Europe for a couple weeks come November to celebrate. I know one year NED is not much but i am trying to live my life like it will never come back ..even if i know there is a huge possiblility it will.

 

This entire experience actually made me want to change careers and now I am back in school to try and get into nursing school and I love it!!!!!  Praying for continued NED for myself and everyone on this board. And for those who are not at NED yet...praying you reach it with whatever treatment you are doing.

 

Jenjen 3a (san diego) 27 :)

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Terra's picture
Replies 6
Last reply 8/25/2010 - 7:59pm

hi - derek has a metastasis in a right hilar node - it showed up on a pet scan 2 years ago and is now growing (although slowly) surgeon at our hospital says it is unresectable - would love a second opinion anyone ever have this done and who was your surgeon?

 

we are likely starting Il-21 vs DTIC in a couple of weeks but if this is removable we want that option - derek is 37 and in otherwise good health

 

thank-you

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/24/2010 - 4:51am
Replies by: Anonymous, Pat-Wife of Carl, Linda J, KatyWI

Posting for a friend who is concerned with bruising under the arm and chest that won't go away. Person is already dx with mel (in the neck area) and has recently found additional nodes that appear to be involved....neck and chest area.  Has anyone had experience with bruising and melanoma?

Thanks for your thoughts.

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It has been awhile since Lauren has posted. I am worried. Anyone heard from Lauren?

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Gordon LG's picture
Replies 1
Last reply 8/25/2010 - 10:03am
Replies by: Carver

About three weeks ago I stopped the self injections after nine months of treatment. Two days after my first missed dose, I started getting severe tendonites, and muscle aches, which gradually spread to pretty much every muscle in my body. Feels like arthritis. Anyone ever heard of this happening? My Onc. doesn't think it's related, but how could it not be? Symptoms diminishing somewhat, but still very much present.

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John T's picture
Replies 7
Last reply 8/26/2010 - 4:34pm
Replies by: jag, Julie in SoCal, John T

Hi all

Just though I would check in with a postive update. Since my diagnosis (Stage 3B - Lymph node in leg)  and LND operation back in Feb 2008 , some 5 PET Scans and numerous blood test later - no sign of disease. I went for surgery only option (no interferon or other treatment), and am feeling fit and healthy. Running "mini-iron-man" (running,cycling,swimming) events and enjoying life.  

Best of luck to everyone.

Live Strong

John from Bangkok

 

 

Live strong (Borrowed from my man Lance Armstong!)

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Lauren mom to Jenna's picture
Replies 14
Last reply 8/26/2010 - 9:35am

I am feeling guilty for not posting sooner, but we have been in the heat of it.  Jenna started to get really sick on the ipi trial, and we were thinking that maybe it was a good thing, but her disease continued to grow and spead.  She had bumps coming up everywhere...neck, chest, back, abdomen, even in the muscles of her arms and legs.  We knew we were losing ground quickly.  We had been pursuing MD Anderson for a MEK combo trial (since she responded so well to the MEK) for several months, and finally they were able to get her a spot in the BRAF/MEK trial...and none too soon.  It was difficult just traveling to get there.  We have been here for 2 weeks now and she started treatment one week ago today...Amazing!...her lumps are melting away, and she is feeling much better.  The CT scan that she had last week prior to starting was devastating.  Pretty much the only place she didn't have disease was her spleen.  She will not be scanned again for 2 months, but as we watch her visible disease fade, and she continues to feel better, we are encouraged to believe that internally she is responding well too. 

Thank you to all of you who have been praying for, Jenna.  It has carried us through some real lows to a place where we have hope for healing again. 

We are scheduled to go home tomorrw, and are looking forward to getting some "normalcy". 

Happy in Houston!

Lauren (mom to Jenna)

 

 

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Linda J's picture
Replies 8
Last reply 8/30/2010 - 2:17pm

I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

I am upset because the MRI showed that there are several lymph nodes involved and one of them is "deeper".  The deeper one is about 1cm.  Am I doomed because there are several lymph nodes involved???  Have other people had multiple lymph node involvments and still are doing well today??

They are going to see if the tumor in my side reacts to any of the the inhibitors so that hopefully I can do a clinical trial.

I am just so so so devestated right now.  I feel hopeless and I would really really like to hear that it is possible to survive a large tumor with multiple  and deeper lymph nodes involved. 

Please respond.  Thank you

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Has anyone been on the trial PD-1.  I know mom is the first in Tampa.  Her cancer is spreading and I would love to talk to someone.

She will go for her second vaccine this Friday.

Tracey

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Tracey FL's picture
Replies 1
Last reply 8/25/2010 - 3:24pm
Replies by: Anonymous

I am look for some one that has been in this trial.  I know mom is the first in Tampa.  In would really like to talk to someone.

Tracey

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Knutes Pam's picture
Replies 9
Last reply 8/25/2010 - 10:52pm

Knute's MRI shows the bleed, but no new tumors and no growth in the radiated tumors!  Yesterday new med or combination  gave him relief from the constant headache he's had since admission.  He slept hard for 2 hours and then "performed" in a variety of ways.  Practiced sitting, and the stood with help.  Repeating twice.  He was joking with me and remembered all his visitors while I was at work.

So this is a detour on the road to his next therapy not a dead end.  His mel doctors will push things back a month and we'll see if he is ready!  He has such a fighting spirit, although not a lot of patience so this slow regain of physical control will be challenge enough for both of us.

Pam

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Sherron's picture
Replies 9
Last reply 8/27/2010 - 2:04pm

Hi Everyone,

Well Jim is the one who did not surgery, No WLE, no SNB....he has only done many alternative treatments.  He was diagnosed 07-11-2006 with Nodudlar Melanoma.   He has felt well, actually wonderful, not missed a day of work, and is all about QUALITY OF LIFE, rather than Quanity of Life....2 years ago, he had a local recurrence, and he left it there for 1 year, finally getting it removed once the grandkids started asking questions.  The VA removed it offering scans and wanting to removed the 1 lymph node involved.  He still refused surgery or scans.  Well, the right cervical node is quite large now, is hurting some, with sharp pains and some numbness...could not sleep one night this week.  He appears okay today...He does have a new lump on the right side in the breast area,  Now on the opposite side of the neck I see a lump in the neck....one on his back...and one on the left side appearing some under some bruising area...I am just sick.  Obviously , this is spreading.  He has had 4 years and 1 month wonderful time.  If by some chance I could talk  him into  ANY KIND of systemtic  trreatment that had few side affects, what would it be,??? And I don't even know if anyone would treat him.  We have to go to the VA.  I don't even know if they have any treatments like the other hospitals.  I am grasping....at something , anything, a word from someone.  I don't even know (probably not) if I can talk him into some type of treatment , with few side effects that might buy us a little more time.  I am not asking for him.  He made his decision...I am asking for myself.  I need more time with him.

Thank you,

Take Care,

Sherron, wife to Jim

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MACK under the knife's picture
Replies 8
Last reply 9/18/2010 - 10:51am

Went to the doctor with what I thought was swollen glands and now I have Melanoma and awaiting for them to get me into MD Anderson to get it removed. I don't have the stage but the PET scan says that it has remained in my neck. Anybody got a clue what I am facing the doctor seems to have abandoned me. It is very stressful

 

Mack under the Knife

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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TimG's picture
Replies 7
Last reply 8/26/2010 - 9:45am

I am currently at NIH/ NCI in Bethesda going though TIL.    Friday Aug 27 is the day I get the cells infused and start IL2.  Should complete and be home Sept 9 or so.

 

If anyone will be at NCI let me know maybe we can meet.

 

Tim

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