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.

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http://www.environment.nsw.gov.au/radiation/radiationpubs.htm

 

I urge everyone who wants to see changes in their own indoor tanning laws to write in and support this initiative; I know from first hand experience that Australia is referenced when other areas are struggling to make changes. For example, in Canada, the federally funded Canadian Partnership Against Cancer recently commissioned a study titled The Economic Burden of Skin Cancer in Canada.  http://www.partnershipagainstcancer.ca/wp-content/uploads/Economic-Burden-of-Skin-Cancer-in-Canada-Report-Final1.pdf   In it the long established (and aggressive) Australian SunSmart program was used to calculate cost savings. The direct and indirect costs avoided during a twenty eight-year modelling period were estimated to be two point twelve billion dollars, or 7.8 times the cost of prevention.

For more than a decade the Canadian government has spent tax dollars educating school children about the dangers of ultra violet overexposure. When contacted, the Consumer and Clinical Radiation Protection Bureau advised me their Sunsmart program has sent out some eighteen thousand classroom kits and reached approximately five hundred and fifty thousand students over the years. Clearly education is not enough. It alone is not decreasing the health care burden. Nor the human carnage. It certainly didn’t keep my teens out of the salons; it took their mother's melanoma diagnosis to do that.  

This may sound like a rant and I guess it is, but I believe in putting this stuff here so others who come behind me looking to make changes might find a little extra ammo:) 

thanks, linda (our politicians in Victoria BC vote on tanning bylaws Dec 8th!!) 

 

Proposed amendments to the Radiation Control Regulation 2003

The New South Wales Government proposes amendments to the Radiation Control Regulation 2003 to strengthen existing controls on the use of ultraviolet tanning units and mitigate the harmful effects associated with the use of commercial UV tanning units used for cosmetic purposes.

The Regulation currently prohibits the use of commercial cosmetic UV tanning units by persons under the age of 18 years and by persons with Skin Photo Type 1, and contains other rules for persons who carry on solaria businesses and persons who operate tanning units.

The Government proposes to strengthen the Regulation by:

  • increasing the minimum age at which a person may be allowed to use a commercial cosmetic UV tanning unit to 25 (from 1 April 2011)
  • extending the range of persons excluded from using a tanning unit from persons with Skin Photo Type 1 up to Skin Photo Type 2 (from 1 April 2011)
  • increasing the minimum age at which a person may be allowed to use a commercial cosmetic UV tanning unit to 30 years (from 1 August 2011).

Announcement by Minister for Climate Change and the Environment.

DECCW is seeking your comments on the proposal.

Please provide any written comments by 21 January 2011 to:
Manager Hazardous Materials and Radiation
Department of Environment, Climate Change and Water
PO Box A290
SYDNEY SOUTH NSW 1232

or email to: radiation@environment.nsw.gov.au

 

All feedback received will be considered and taken into account in the review process. If you have any enquiries regarding the proposal, please contact the radiation line at DECCW on (02) 9995 5959.

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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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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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EricNJill's picture
Replies 17
Last reply 11/28/2010 - 10:09pm

We called in Hospice to get help with Eric.  They said that they would care for him during the 2 month waiting period before Eric can get into a Clinical Trial for having Brain Mets.  He had a Craniotomy and he's having Gamma Knife on 11/29.  They have been a huge help already, but our problem is...

Eric's Oncologist said that no clinical trial will accept Eric if he has been under Hospice Care.  Hospice said they would step out and come back in when needed but the Oncologist is afraid that the clinical trials won't take him.  How would they even know?

I'd like to keep Hospice because it's a huge help.

JillNEric in OH

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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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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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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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EmilyandMike's picture
Replies 6
Last reply 11/27/2010 - 12:28pm

I just saw this article on my Google alert.  Looks like they are getting closer to figuring out why people build resistance to BRAF inhibitors.

http://www.forexpros.com/news/general-news/studies-show-how-skin-cancer-evades-promising-drug-176820

Also - I have been reading a wonderful new book on the history of cancer called "The Emperor of All Maladies".  Written by an oncologist, it reads like a detective novel and has really opened my eyes.  It is not a book that talks about melanoma, but I still highly recommend it because it is very relevant to any cancer. Read the reviews for a good overview of the book:  http://www.amazon.com/Emperor-All-Maladies-Biography-Cancer/dp/1439107955

All my best to you

Emily - wife of Mike, Stage 3a

www.emandmichael.com

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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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churchwelldana's picture
Replies 4
Last reply 11/26/2010 - 9:52am

I'm currently stage 3a, about to have surgery to remove lymph nodes. After that I will start Interferon. I live in Memphis and there are no clinical trials available here. There is one available at Vanderbilt in Nashville (4 hour drive). It involves using ipilimumab, but it is a double blind study. I'm just wondering if that would even be worth my time. I know most all of this is a wait and see kind of thing, but I'm only 32 and would like to do whatever I can to reduce my chances of it coming back. The good thing is that my PET/CT scans were clear and that I only had one sentinel node with a micrometastases.

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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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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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Melanoma Mom's picture
Replies 2
Last reply 11/25/2010 - 1:11pm
Replies by: Becky, Linda/Kentucky

Today we celebrate one week of NED for our 14 year old son. 

Wishing you all a beautiful day full of love, merriment and pie!

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dian in spokane's picture
Replies 4
Last reply 11/25/2010 - 12:08pm

Hey Kevin,

If you are reading..we'd love an update. I am sure I am not the only one wondering how things are going with you.

 

dian

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Rebecca and Bob's picture
Replies 2
Last reply 11/25/2010 - 9:00am
Replies by: lhaley, King

My husband went through so many tests the past two days. Endoscopy, colonoscopy and additional CTSCAN. This was for his abdominal cramping, stomach pains and gas. Everything came back clear. The only test left that they can do is the camera in a capsule to further look at his small intestine. They could not do that one unless they did the other test first. Something about insurance no covering it and that this is the normal process for investigating stomach issues.   Although after all these test the doctor did say it appeared he had Irritable bowel syndrome and reflux, probably from stress. He did put him on Prilosec and he seems to feel better, so that's good news at least he feels better and relieved. We may still pursue the capsule test, but another thing the doctor said was if my husband had another intussception or any blockage that he would have never been able to drink all the fluid for the colonoscopy that he would have thrown up.

i think we both feel better after all these tests, it's scary when you have stomach problems and you have had mets to your small intestine before. We will probably still do the capsule camera test because at this point what's one more test going to hurt.

Anyway, I hope everyone has a great Thanksgiving and enjoys the day.

Believe

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