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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Lori C's picture
Replies 4
Last reply 10/14/2010 - 11:40am
Replies by: Sherron, rj, Fen, Pat from Ohio

I want to thank the remarkable people - patients, caregivers, and everyone else - from this board for their unending support during the time Will was fighting this disease and now, for your overwhelming kindness to me. 

Having lived in Israel & Australia, where melanoma is epidemic, I long had a fear of this disease.  3 years ago, I lost one of my dearest friends to it, after a courageous 9 month battle during which the cancer responded to absolutely nothing.  As she was guardian to her brother's 3 children - he and his wife had been killed in a car accident a year before - this disease seemed to me a vicious, relentless thief.

Will, and his fight, became a part of me in a way that I guess only caregivers can quite understand.  No matter where I was or what I was doing, all of my love and attention really belonged to him.   Will's lifelong fight for autonomy and independence astonished me in it's focus, and he brought the same courage to the fight against this disease.  But he could not do the research, find the resources, and weigh the many variables needed to really battle this monster, and that is where you all provided the most invaluable help.  My only regret is that I didn't find this board far earlier, and that is a profound regret. 

Right now I am feeling, as Jung said, "a fatal resistence to life in this world."  I miss him too desperately to imagine getting through this day, let alone those which may come.  For anyone who didn't know Will, but might like to, here are two - very incomplete - pieces I wrote about him

 
 
I will keep checking this board because I care so about all of you and because I need to stay connected to you.   I owe all of you more than I could ever possibly repay.

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Jen07's picture
Replies 3
Last reply 10/13/2010 - 10:36pm
Replies by: Jaime.30, Anonymous, ChrisB

Hi everyone.  Its been so long since I have been on here.  I had to take a break from this site last year after Andy was done with his interferon.  I love all the support you get from everyone on here but its also sad b/c this disease is just so horrible and is so heart breaking.  Andy has recently had a constant headache that goes from dull to really hurting.  I don't want to say severe b/c it hasn't hurt so bad that he's been layed up in the bed all day from pain.  Anyway, he went to see his PCP for his and they did a CT scan which was negative.  They put him on a 10 day regiment of inflammatory and muscle relaxers which he said eased the pain some but never took it completely away.  He does have some days where the headache goes completely away but not for long.  Anyway, the headache has been going on for 7 weeks now and last week when we went for his 6 month follow up with his oncologist, they suggested he have a MRI done since the ct scan was without contrast and pretty much useless.  His Dr. said she didn't think it was melanoma related since he is showing no other signs such as numbness, slurring speech, visual problems, not being able to focus or keep track of thought.  He's just simply had a constant headache.  She seemed to think a constant migraine.  Either way, i am super worried.  We have been told twice now that he's had cancer and are only 2 1/2 years into remission.  He made it to 3 years last time before we found out it had come back. He's stage 3, btw.  What do you guys think?  Does anyone else suffer from this kind of headache? 

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Janet2's picture
Replies 3
Last reply 10/13/2010 - 9:49pm

My first whole brain radiation and my subcutaneous tumour on a different machine is planned for tomorrow morning (stomach) and brain afternoon and my second session is Monday for both. I don't know how I will be after it, but keeping my fingers crossed.

Janet 

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Brandi's picture
Replies 5
Last reply 10/13/2010 - 6:01pm
Replies by: Brandi, EricNJill, Anonymous, washoegal

Hi everyone,

I am new here I just went to a surgeon today who wants to do a WLE and SLN on me for a spitzoid melanoma that I had removed on my calf. I also have an in situ on my rib cage he wants to do a larger excision on this one as well. My patho is as follows: calf: spitzoid melanoma 1.6cm, margins clear, mitotic rate 0, lymphovascular 0, lymphocytic ifiltrate non brisk, ulceration absent, regression absent. He agreed that the patho results look good and said there is a 10% chance my lymph nodes were affected. Rib cage melanoma in situ original amount taken was .5cm which from what I have read is the recommendation. This doc is supposed to an expert on melanoma he is at UPMC hospital in Pittsburgh. I am just confused as to why he needs to take more on the rib cage. I also want to know if it is standard procedure from what you all know to have the SLN done right off the bat? Thanks for any info you all have.

Brandi

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killmel's picture
Replies 2
Last reply 10/13/2010 - 3:22pm
Replies by: Sherron, Amy Busby

Hi Amy,

 

I have been away from awhile and just saw your post to Jamie.

You are always in my thoughts....I hope you are doing well. Please post an update. We all love you!

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sarahandkawika's picture
Replies 2
Last reply 10/13/2010 - 9:54am

Okay, I blew it and let the stupid Derm do a scrape biopsy on my arm. I won't bore you with details. But this spot is a dyspastic nevus. and of course there are leftover cells in my skin. So, this derm says let him remove all the cells (nope!). MY derm specialist says it is all up to me whether I do or don't, everyone has varied opinion...So I would have the surgeon who did my graft remove the rest if I do...but the question is do I ?

Any Opinions?

Thanks

Sarah, stage 3A NED 3 months

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Misty Dobson Duanes sister's picture
Replies 6
Last reply 10/13/2010 - 12:45am

Hi friends,

This bulletin board is all too familiar to me....I just lost my brother January 30,2010 after he fought Melanoma for almost 8 years. I found this bulletin board years ago and after my brother passed and I posted the news I did not return to the bulletin board because for many reasons related to grief and coping.I miss my brohter desperately and I was with him until after his last breath, I told him I would continue fighting Melanoma in his name and that I would tell people how amazing he was.....this is my Mission in life until the day I die I will fight Melanoma.

Now I need your help. I am putting together a presentation so that I can talk to school aged kids about Melanoma and hopefully prevent a Melanoma diagnosis. I need to put some stories together ..I especially need to accompany the stories with a picture of the person who has had Melanoma whether they are a survivor or since passed from this horrible cancer. I need these young people  to relate and the best way to do that is to put together something that will keep their attention....in particular younger people and people that as a young person did something they feel may have led to a Melanoma diagnosis.

Please contact me at mistydobson@gmail.com. I would love to share yours or your loved ones story with others so that we can make a positive impact and save lives with awareness..... Please help. I look forward to hearing from you.

Sincerely,

Misty Dobson

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emilypen's picture
Replies 4
Last reply 10/12/2010 - 8:31pm
Replies by: King, Brandi, lhaley, Fen

HI all,

My husband had a PET scan this morning as it's day 28 of the study he is participating in.

http://clinicaltrials.gov/ct2/show/NCT01155453

We just heard that all the previously existing lesions and tumours have up to 50% SUV reduction. The doctors are thrilled and so are we.

CT scan on Nov. 3rd will hopefully show shrinkage, but we know it's working. He's reduced his pain meds and is in no pain.

woohoo!

Finally something is going in the right direction. :-)

em

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Lori C's picture
Replies 44
Last reply 10/12/2010 - 2:32am

William Thanet French, my beloeved Will, left me early Wednesday morning.   I was alone with him at the end.

I don't know if there was more I could do.  I tried - I am so sorry I could not give him what I so desperately wanted for him.  Right now all I can feel is a tearing pain.  The only comfort I have in any of this is that the pain, for Will, is over. 

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Mark_Catskill's picture
Replies 16
Last reply 10/11/2010 - 11:04pm

Hi Everyone.  I haven't logged in in a long time.  I am here to reassure everyone that it can be done.  Four years after developing both lung and brain metastasis, I uave noevidence of active disease.  A few old, asymptomatoc  tumors still show up on scans but they have not changed in over a year.  I am "stable" and the prognosis that I will remain stable is very, very good.

 

If you wanr to read about all the treatments I have had I just updated my medical history on my profile.  Just search for Mark_Catskill.

 

I will try to visit more frequently to share my experience and knowledge with the MPIP community.

 

Mark from Catskill
 

I have cancer but cancer does not have me.

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Has anybody heard from Kevin from Atlanta?  He used to be on here quite a bit.  I hope everything is ok.  If you read this Kevin please post and let us know how things are going.  I think you may be finished with the Ipi by now???

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Connie's picture
Replies 4
Last reply 10/11/2010 - 6:58pm

If anyone out there has any information or been thru treatment for radiation burn and an open wound in a melanoma site, I would appreciate any help you could offer.  My Mom had a very large tumor removed in June in her inguinal canal which was a melanoma, probably metastasis from her big toe which was amputated 5 years ago. The surgical site healed very well. She has two other deeper tumors in her pelvis, that they have left alone as they said her quality of life would be affected. She chose not to do chemotherapy as she is 82 and did not want to feel sick with what time she had.  About 4 weeks after her surgery, a lump reappeared in the area of the tumor that had been removed. Since her lymph glands were involved in the surgery, the surgeon did not want to drain that area as he felt she could end up with a permanent drainage. Her oncologist offered radiation as a way to get microscopic cells left behind in the surgical site and "slow things down". Her organs have been clear.  She had 4 weeks of 5000  ???Grays a day. By week 3 she was badly burned ( raw area on inside of left thigh around 5 to 6 inches long by almost 2 inches wide) and the lump was still there.  Prior to radiation I read the radiologist report which said the lump was fat. They continued treatment until completion. She was told she could end up with a bad sunburn. She ended up with her skin turning black.  She had her do rinses 3 times a day to the site and apply a burn cream.  Early this week she got feverish and yesterday ended up in the hospital. Yesterday where the lump was, (and is?), opened up and a bunch of ( my sister said) blood and pus came pouring out.  She lives in Montana and I live in Washington and I have called my sisters as I feel she needs some Doctors who know about wound care.  The site is being packed and she is on IV antibiotic..  Does anyone know about hyperbaric medicine and wound healing?   Has anyone had a similar experience and has gotten good treatment?  Her skin that was healing from the burns has also been impacted by the infection and/or fluid accumulatiion.  Do you know of ointments or dressings that you have used to keep one area dry and healing while another area close by, is draining and packed? Has anyone had lymphedema cause a similar wound and if so how did they treat your wound? I will be going home soon and any help on what to ask and what to do would be greatly appreciated.

Sincerely,

Connie

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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Janet2's picture
Replies 8
Last reply 10/10/2010 - 5:40am
Replies by: Janet2, Anonymous, Sharyn, lhaley, jag, Linda/Kentucky

I was admitted to hospital at the weekend and am home now -- was getting dehydrated from vomiting/sickness and had severe headache/dizziness. CT scan shows carboplatin hasn't worked and all my tumours have grown plus new ones. Also, I now have a tumour on my brain and a subcutaneous one at the back on the right-hand side. I've been told to have a week's quality of life and it is planned I should start whole brain radiation to deal with the symptoms and help with with quality of life the following week. I was wondering if anyone has had the whole brain irradiated and if so what are the side-effects during treatment and more long-term ones afterwards. Also, how long after treatment do the longer-term ones start and how long do they usually last? It is planned that I should have two sessions three -- four days apart. I am having radiation to tumour by right hip as well. They are leaving the rest of my cancer so I don't know how it will behave and don't know if they will recommend any further treatment as they say I may not be well enough. I have already been turned down for  Ipilimumab due to my mobility problems. Any information would be appreciated. By the way I live in the UK.

Janet 

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nj-Mark's picture
Replies 12
Last reply 10/10/2010 - 2:34am

Hi All,

After almost 4 years on my melanoma journey (see profile) I've now gotten to where it's time to wait this out.   I'm set up with Hospice and have been working with them to manage the pain from my abdomen and leg mets.

I'm hoping to continue to lurk on the board for a long time, but I wanted to say now I am so thankful for all of the wonderful support, virtual hugs, emails, and conversations I have had with many of you over the years.   You've been my rock and inspiration many times.

Warmest regards to everyone.   I really feel in my heart that a cure is coming soon.

-Mark

 

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