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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davekarrie's picture
Replies 7
Last reply 11/29/2010 - 3:12pm

Just got back from the Mayo clinic in Rochester, and I highly recommend Dr. Brewer (dermatologist) and Dr. Donahue (surgeon) for anyone in this area. I had a melonoma at 1.5mm and Clarks level 4 and just had the WLE and SNLB and intial results came back negative. The Dr. said more testing will be done early this week and hopefully that all comes back negative.  Does anyone know why an initial result could be negative and later tests positive. He had to take 3 lymph nodes under my right and left arms, and it is very painful but getting a bit better each day. hopefully we got it all and the care at the Mayo clinic I highly recommend. thanks and good luck to all.

Live life to the fullest and enjoy each day!

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Sherron's picture
Replies 17
Last reply 11/30/2010 - 9:02am

I can barely type these words...I am in shock.  this went so fast.  He still thinks we will go there and then go home...the ultimiate optomist.  I can't breathe, sleep, or anything.  Pray for me for strength...If you can believe this, he is pain free, only has awful bile that he throws up or they pull out, but no pain, just heart burn.  My heart is aching...43 years for us on Dec 4th....

Take Carem

Sherron, wife to Jim

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Anonymous's picture
Anonymous
Replies 9
Last reply 11/28/2010 - 9:35pm
Replies by: LynnLuc, Anonymous, Janner, dian in spokane, Lori C

I had a melanoma on my left shoulder over 1 1/2 yrs ago. It was 2A, ulcerated with a high mitosis. I had all of the suspicious moles removed then stopped going to the doctor. I figured at my age it isn't going to happen again when I only had one really large and irregular mole. So here's why I am asking today: I see nothing visible and no lumps I can find on the arm but 6 or so weeks ago it started swelling in the hand and about 8 inches above the wrist. I first noticed because I couldn't wear a watch then later had to remove my wedding ring. Now today I cannot bend the fingers.

So please tell me its something else and if it were melanoma I would see something visible.

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Melanoma Mom's picture
Replies 13
Last reply 11/29/2010 - 6:24am

Is doing genomic hybridization and analysis "standard" practice these days for melanoma patients?

If so, are there locations that are more skilled at performing the tests? From my understanding, Boris Bastian is a pioneer in this field, but because of his recent move from UCSF to Sloan Kettering, his lab is not yet prepared to do the testing. He suggested that we seek advice from his prior colleagues at UCSF.

Josiah's pathology report specifically suggests that we seek testing from Sloan Kettering, but when I questioned our Oncologist, he said the testing was already being done "in-house" at Dana-Farber. But why then would the pathologist suggest we go elsewhere for the testing?? I need to pursue that particular question to get answers.

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Anonymous's picture
Replies 8
Last reply 12/20/2010 - 8:56pm

Hello All,

I am new to MPIP & need your help. I have advanced to stage 3 with multiple, inoperable sub q's. My doctor suggests PLX.4032.

 

Any input from experienced warriors would be helpful. Particularly the side effects and how you manged them. Also interested in success stories as well as no success stories. I want to go into this trial with my eyes open.

 

Thanks you for taking the time to reply to my post. I am scared... please help me make an informed decision.

 

Janice

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tri_girl's picture
Replies 8
Last reply 2/3/2014 - 3:37pm
Replies by: gaby, debbieVA, King, Anonymous, tri_girl, Fen

I had a CT scan after almost 3 years of clean scans and there is a spot on my liver.  I had a PET scan done last week  and waiting for the results...and very worried.  Any one had liver surgery?

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tri_girl's picture
Replies 4
Last reply 12/12/2010 - 11:47am

I had a CT scan after almost 3 years of clean scans and there is a spot on my liver.  I had a PET scan done last week  and waiting for the results...and very worried.  Any one had liver surgery?

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I had a CT scan after almost 3 years of clean scans and there is a spot on my liver.  I had a PET scan done last week  and waiting for the results...and very worried.  Any one had liver surgery?

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Vermont_Donna's picture
Replies 22
Last reply 12/1/2010 - 9:58pm

Hi everyone,

I am quitting work so do the IPI trial and for my leg wound(s) to recover (yes one more incision has opened up after the stitches were removed and it is the siza of a dime, the other hole is a tad bigger than a quarter...unhealed wider excisions). BUT, in checking y leg which I do everyday, I have found THREE more melanoma tumors, in addition to the three that I discovered a month ago. This is the ones I can see. I am scared about what I cant see. I am just plain scared, and discouraged. YES I am starting IPI this week (Wednesday), so I will have 6 tumors to mark the effects of the drug. Just wanted to vent to people I know who will understand.

Vermont_Donna

stage 3a

Diagnosed 9/06

SNB October '06

LND December '06

11 months low dose Interferon (after failing high dose due to infected PICC line) 2007

7 months Leukine 2008

Isolated Limb perfusion September 2009

5.5 weeks radiation to part of my leg March '09 to April '09

6 weeks radiation to another part of my leg July  '10 to August  '10

lots of wider excisions for melanoma and suspected melanoma

lymphadema big time and lots of treatment and wear compression garment daily and night-time garment nightly

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EricNJill's picture
Replies 8
Last reply 11/27/2010 - 9:12pm

Well we got the determination from Social Security Disability and they would not back date Eric's onset of disability because he made more then $1,000/month for the first 10 months.  So our 5 month waiting period will begin November 1st.  I have $3,000 in savings and I make around $800/month myself because I'm hourly and I'm taking off work to take him to appointments and to care for him.  His insurance is going to cost us $600/month and my house payment is $1,100/month so as you can see I'm going to be in trouble fast!

We had a friend offer to do a fundraiser for us.  I thought about setting up an account at a bank.  Does anyone have experience with this?  Do I have to start a charity?  I can't really start a non-profit charity because it's for profit right?  I'm confused about this and have no experience so I'm looking for help.  It's also been suggested that I put a "donate" button on Eric's Facebook Page so I'm looking into that, but first I want to make sure I set up everything correctly.  I would have to claim everything on my taxes as income right?

Also Eric said that he wants to set up a fund for us in the event of him passing.  He is so worried about us because he has no life insurance.  How do we go about doing that?

Sorry for so many questions, thank you for any advice.

JillNEric In OH

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Melanoma Mom's picture
Replies 37
Last reply 12/7/2010 - 2:45pm

We had another visit to Dana-Farber on Tuesday. It was supposed to be an easy follow-up on our 14 year old son's two SNB surgical sites ..... never assume anything will be easy!  Josiah's body is trying to reject the dissolvable stitches and he had signs of a slight infection in both spots. So the surgeon cleaned, poked, prodded and packed the wounds with gauze - no pain meds or anything. Josiah was stoic as the blood ran, literally. What we had hoped might be a nice family day in Boston afterwards was not to be (we had brought his two younger sisters (ages 8 and 12) with us this time - a first to the hospital). Josiah was SO upset/mad/devastated after the appt. and he cried and raged inside the car. SO hard to witness and the girls were upset too. We finally got everyone calmed down enough to go out to dinner. Soon the kids were all laughing, but my husband and I felt like we had been run over by a mac truck - once again. I felt such pain in my heart for my son, as well as my daughters, who now have a very different life too.

The Oncologists and surgeons are strongly suggesting that we have Josiah try Interferon. I have been the hesitant one ... knowing the limited success and the possible side effects. But Josiah is adamant about trying it. I am fearful that if I put my foot down and tell him "no", he would blame me subconsciously if the cancer comes back. My husband also thinks he should do it. So that is the plan ....

We are able to do the treatments in Maine where we live and I have set up the start date of December 13th so that 2.5 weeks of the first treatment month will fall during his school break. I am looking forward to some time off from driving to our stressful visits in Boston .... 7 trips in 7 weeks, two surgeries, one devastating diagnosis, hours of scans - enough! Hopefully we can take December off from going there and can enjoy some of the holiday season here in Maine, especially the few weeks before he starts treatment. 

Please hold Josiah in your prayers .... children shouldn't have to fight cancer, but no one said life was fair.

stage IIc

NED - 8 days and counting .....

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MaryMary73's picture
Replies 1
Last reply 11/25/2010 - 9:01pm
Replies by: MaryMary73

28 days after being diagnosed with a Breslow depth of 0.39mm and 26 days after surgery and 11 days after learning that my margins are clear, I will be returning to work on Nov 29th. I am excited and yet extremely nervous at the same time. Life, as I knew it, will never be the same again.

Tomorrow, I have an appointment with my family doctor who has complete reports from the dermatopathologist and the plastic surgeon. I will finally be able to get a good look at what was written and he will also help if there is something I don't understand.

I want to thank all of you who prayed with me and for me. For your cheers and kind words. My heart is with each and every one of you yesterday, today and always.

Maria

P.S. You can find me on my personal Facebook profile at http://www.facebook.com/MariaAerikos

The only real wisdom is knowing you know nothing -Socrates

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Lori C's picture
Replies 3
Last reply 11/28/2010 - 11:08pm
"You never gave up/and you never gave in/and you never said, "No, I can't take anymore of this...."
 
To all of you on this board:  whatever stage you are, whatever your current health situation, please know that you are indeed a survivor and a warrior.  Will proudly described himself as a cancer survivor even though he knew - we all did - that it was extraordinarily likely he would die from the melanoma eventually.  But until his last breath, he was a cancer indeed a cancer survivor and now is - as Jenna's mother described her NED. 
 
There have been a lot of losses & difficult times on this board.  Those of us who are or have been immersed in this fight know well the fear, the pain, the uncertainty, the depression, the terror and the pain of this disease.  Those are very real.  But just as real is the courage, the love, the devotion, the support, the hope - of everyone, patients, caregivers, loved ones - on this journey.  You are all survivors.  You are all possessors of that beautiful definition of courage - grace under pressure. 
 
I wish all of you a good Thanksgiving, and I cannot tell you how thankful I have been, through the most painful year of my life, for all of your help & support.

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Tim--MRF's picture
Replies 2
Last reply 11/28/2010 - 9:58pm
Replies by: LynnLuc, debbieVA

On this Thanksgiving Day (for those of us in the US) we try to pause and give thanks.  In that spirit, I want to say a heartfelt "thank you" to everyone on this board.  This has been a challenging year in many ways--we have lost far too many wonderful warriors.  But we are all richer for having known them, even those we only met through the magic of electronics.  And I know that they, and countless thousands of others, lived longer and better because of the information and support they received through this community. 

Many, many of you spend hours every week replying to posts.  You offer your home email address and home number so complete strangers can reach you for more one-on-one support.  You reach out through the internet to inquire about people when they don't post in a while.

The care and compassion of people on this site are astounding, as is the wealth of knowledge and insight you offer.

I have been thinking a lot the past couple of days about Jenna, and Knute, and so many others.  Though these are sad thoughts--to know that they were taken by this nasty cancer--I cannot help but be greatful for the lessons of courage, faith, and hope we all learned from them along the journey. 

I know that holidays can be challenging, particularly for families who recently lost a loved one.  But I hope, too, that on this Thanksgiving Day we can all find reasons for gratitude in the relationships, memories, and stories we have gathered along the way.

Tim--MRF

 

 

 

 

 

 

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Dynasysman's picture
Replies 3
Last reply 11/25/2010 - 7:20pm
Replies by: Brandi, Dynasysman, Pekoe

I am MUP, originally classified N1b M0, awaiting left posterior neck dissection.  In preparation for surgery, we conducted a PET-CT scan (clear) and a brain MRI (see below).  Surgery is scheduled for December 7.

When my surgeon left a message saying he needed to discuss my MRI with me, I immediately started thinking, "brain mets, oh my G-d."  When we spoke, though, he said that the MRI had revealed an aneurysm at my M1 terminus.

I have been having a funny feeling for month -- less balance, losing words, etc. -- but never thought of an aneurysm.  However, symptoms have been getting worse...it could have blown at any time.  And the impact of a ruptured aneurysm really stink -- 10-15% death on the way to the hospital, up to 50% at 30 days.  Most survivors lose a bunch of brain function.

So now we will (hopefully) patch the aneurysm while doing the neck dissection.  I still don't know that my status will not get worse during surgery (the same MRI a second possible positive lymph node in another part of the left posterior triangle.)  But whatever comes, I will probably live longer and better because we found the aneurysm now.

You never know when life gives you blessings, and some come in the most bizarre ways...

Happy Thanksgiving, all.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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