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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FYI..  It looks like it will be an interesting day... Jerry from Cape Cod

Call to Action Conference, Saturday, March 19, 10-2, MIT Endicott House, Dedham, MA

Did you know that 750,000 people are living with melanoma in this country and another 4 million first degree relatives are touched by this disease? Can you just imagine the impact of patients, survivors and relatives moving out into their communities, sharing their stories and delivering life saving messages about the importance of prevention and early detection? How empowering to those whose lives are forever changed with melanoma and how life changing is the message when someone is diagnosed early and cured of melanoma.

MFNE is having their first "Call to Action Conference on Saturday, March 19 from 10 - 2 at the MIT Endicott House in Dedham. 

Hosted by MFNE Executive Director Deb Girard, and Alan Geller, chair of the Foundation’s Medical Advisory Board, the conference will cover the following:

▪    If you are a melanoma survivor at any stage, a family member or have lost a loved one from melanoma, you can make a difference by sharing your story and delivering the important message about early detection and prevention to your community

▪    You can become part of our legislative initiative to ban indoor tanning

▪    Strategies and hands-on learning will be provided to help you create powerful presentations that communicate your passion about the importance of reducing the risk of melanoma

This is an opportunity to find out how to make your voice heard and network with others who share your passion.
 

Pre-registration is required.  You can register by emailing Deb Girard at dgirard@mfne.org

Feel free to contact Deb with any questions or concerns at 800.557.6352 or dgirard@mfne.org.

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/4/2011 - 2:03pm
Replies by: Anonymous, KatyWI, Laurie from maine, DebbieH, lhaley

Hi Everyone,

 

I am new here so this is my first post. I am stage 3 & have had a few surgeries to remove recurrence oin my leg.

I am now facing another surgery on my thigh (3rd sugery at same area). The suregeon tells me the tumor has grown down into the muscle & he will have  cut muscle out to try to get clear margins.

I would appreciate any feedback from others who have had surgery that cut out muscle. What is the recovery period ?, any long term side effects of cutting muscle out.? Pain? etc.

Thank you for your time & any comments are sincerely appreciated.

Thanks,

Amy

 

 

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Anonymous's picture
Replies 4
Last reply 3/4/2011 - 1:27pm

 

Scroll to the end for some tanning industry reaction.

 

http://open.nysenate.gov/legislation/bill/S2917-2011

 

S2917-2011: Provides that a tanning facility shall not permit the use of an ultraviolet radiation device by persons under eighteen years of age

Same as: A1074 / Versions: S2917-2011

Provides that a tanning facility shall not permit the use of an ultraviolet radiation device by persons under eighteen years of age.Sponsor: FUSCHILLO / Co-sponsor(s): ADAMS, HANNON, JOHNSON, KRUEGER, OPPENHEIMER / Committee: HEALTH / Law Section: Public Health Law

S2917-2011 Actions

  • Feb 15, 2011: 2ND REPORT CAL.
  • Feb 14, 2011: 1ST REPORT CAL.85
  • Feb 3, 2011: REFERRED TO HEALTH

S2917-2011 Meetings

Health (Feb 14, 2011 11:30:00 AM)

S2917-2011 Calendars

CALENDAR:9-2011

S2917-2011 Votes

VOTE: COMMITTEE VOTE: - Health - Feb 14, 2011
Ayes (14): Hannon, Ball, Farley, Fuschillo, Larkin, McDonald, Seward, Young, Adams, Gianaris, Montgomery, Rivera, Smith, Stewart-Cousins
Ayes W/R (2): Golden, Kruger
Excused (1): Duane

S2917-2011 Memo

BILL NUMBER:S2917

TITLE OF BILL:
An act
to amend the public health law, in relation to the use of ultraviolet
radiation devices by persons under eighteen years of age

PURPOSE:
To prohibit children under eighteen years of age from using
an ultraviolet radiation device

SUMMARY OF PROVISIONS:
This bill amends Subdivision 4
of section 3555
of the public health law, as added by chapter 573 of the laws of
2006, to prohibit a person under the age of eighteen from using an
ultraviolet radiation device.

JUSTIFICATION:
Skin cancer is the most common form of cancer in the
United States. According to the American Cancer Society, the number
of melanomas diagnosed in the U.S has doubled since 1973, and more
than one million cases of non-melanoma cell cancers were expected in
2009. Because the harmful effects of UV exposure accumulate over time,
indoor tanning devices pose a greater risk for children and teens by
boosting overall lifetime exposure. Current law allows children
between the ages of fourteen and eighteen to use indoor tanning
facilities, with the written permission of a parent or guardian. This
legislation does not adequately protect the youth from the
potentially deadly health risk associated with indoor tanning. In
order to provide effective enforcement, this bill seeks to prohibit
the use of indoor tanning devices by anyone under the age of eighteen.

LEGISLATIVE HISTORY:
2010: A.9110A - Referred to Rules S.3461A - Codes

FISCAL IMPLICATIONS:
None.

EFFECTIVE DATE:
30 days after it shall have become a law.

S2917-2011 Text

S T A T E O F N E W Y O R K

2917
2011-2012 Regular Sessions
I N SENATE
February 3, 2011

Introduced by Sens. FUSCHILLO, JOHNSON, KRUEGER -- read twice and
ordered printed, and when printed to be committed to the Committee on
Health
AN ACT to amend the public health law, in relation to the use of ultra
violet radiation devices by persons under eighteen years of age
THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM
BLY, DO ENACT AS FOLLOWS:

Section 1.

Section 3555 of the public health law, as added by chapter
of the laws of 2006, is amended to read as follows:

S 3555. Restrictions on the use of ultraviolet radiation devices. 1.
No owner, operator, or employee of a tanning facility shall permit the
use of the tanning facility by a person eighteen years of age or older
until such person provides a driver's license or other photographic
identification card issued by a government entity or educational insti
tution indicating that the individual is at least eighteen years of age
and the facility has on file a signed written statement, in a form
prescribed by the commissioner, acknowledging that such person has read
the warnings required under subdivision two of section thirty-five
hundred fifty-four of this article and agrees to wear safety goggles
before using an ultraviolet radiation device. Such signed statement of
acknowledgment may be retained by the tanning facility off premises
provided that an electronic image or facsimile of the original signed
statement of acknowledgment is readily available by the owner or employ
ee responsible for the operation of the ultraviolet radiation device of
such facility.
2. [No owner, operator, or employee of a tanning facility shall permit
the use of an ultraviolet radiation device by a person fourteen to eigh
teen years of age until such person provides the tanning facility with
the written consent, in a form prescribed by the commissioner, of a
parent or legal guardian to use such tanning facility. The parent or
legal guardian shall sign such consent form in the presence of the owner
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD04206-01-1
S. 2917 2
of the tanning facility or an employee responsible for the operation of
the ultraviolet radiation device of such facility indicating that such
parent or guardian has read the warnings required under subdivision two
of section thirty-five hundred fifty-four of this article and that the
person fourteen to eighteen years of age agrees to wear safety goggles
before using an ultraviolet radiation device. Such original written
consent shall be retained by the tanning facility for a period of twelve
months and may be retained off premises provided that an electronic
image or facsimile of the original signed consent form is readily avail
able by the owner or employee responsible for the operation of the
ultraviolet radiation device of such facility.
3. A written consent form signed by a parent or legal guardian pursu-
ant to subdivision two of this section shall expire twelve months from
the date it is signed by the parent or legal guardian. Upon the expira
tion of a written consent form, a new written consent shall be provided
in the manner prescribed in subdivision two of this section prior to the
use of an ultraviolet radiation device by any person fourteen to eigh
teen years of age.
4.] No owner, operator, or employee of a tanning facility shall permit
the use of an ultraviolet radiation device by persons under [fourteen]
EIGHTEEN years of age.
[5.] 3. This section shall be exclusive and shall preempt any contrary
local law or ordinance, except that this section shall not preempt or
supersede local laws or ordinances imposing additional stricter
restrictions on the use and operation of ultraviolet radiation devices
at tanning facilities which are in effect prior to the effective date of
this section.
S 2. This act shall take effect on the thirtieth day after it shall
have become a law.

---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

 

http://tantalk.com/general-tanning-industry-discussions/2385688-new-york-state-under-18-ban.html

NEW YORK STATE UNDER 18 BAN

On February 15 the New York State Senate Health Committee adopted Senate bill S2917 that BANS UNDER 18 TANNING EVEN WITH PARENTAL CONSENT This law, if passed in March, will take effect before the prom season starts. This proposed Legislation ban will put 85% of salons out of business!!! EVERY SALON IN NEW YORK STATE NEEDS TO CONTACT THEIR STATE SENATOR ASAP AND SPEAK YOUR PEACE ON HOW THIS LAW WILL EFFECT YOUR BUSINESS. CALL YOUR COMPETITORS AND BAN TOGETHER TO MEET YOUR SENATORS. IF THIS BAN GOES THROUGH EVERYONE WILL SUFFER. PRESENTLY, THERE IS NO UNDER 18 BAN IN ANY OTHER STATE!!! IF YOU NEED HELP, I HAVE A FACT SHEET FROM THE ITA OR TO ASK ANY QUESTIONS EMAIL ME valleytanz.com
WE HAVE TO ACT QUICK!!! KAREN

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Jan in OC's picture
Replies 24
Last reply 3/4/2011 - 1:24pm

Just got back from UCLA with my husband.  Results of his latest CT were not good.  Some of his mets in his liver/lungs have doubled in size and small ones that were not even measured before are a lot bigger.   Doc immediately pulled him from BRAF.  We had almost a year on this drug, but it's time to move on!  Doc gave us some future options, but seemed to be pushing for option 1 over the others and I would like some advice. 

Option 1-Eisai clinical trial of E-7080 (VEGF)  supposed to shrink the blood vessels to the cancer cells???   We cannot do this if we choose any other treatment option before this one. BUT, I have not seen a lot about this on the board and am asking if anyone has experience/info?

Option 2- Compassionate IPI Trial

Option 3- Chemo

Option 4-IL-2

Option 5-MEK / PI3K inhibitor (doc said phase 1 trial, low doses only, may not be effective). 

We are supposed to go back  first week of January with a new plan, so any suggestions/advice would be appreciated.  My husband is pretty bummed right now and my emotions are all over the place!  Getting as much info as I can and having a plan will help.

Thanks

Jan

 

laughter is the best medicine

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BLL in Tampa's picture
Replies 9
Last reply 3/4/2011 - 12:30am

My husband was dx w/Stage IIIC 12/2010.  I'm sitting here looking over the Pathology/Review Consultation Report received from Moffitt and it says:  3/3/06 Left mid back excision (4.8cm): malignant melanoma, Clark level III, 0.50mm in depth arising in association with the pre-existing melanocytic  nevus, completly excised.

11/18/2010 Axillary mass, left needle biopsy:  Metastatic  poorly differentiated malignancy, consistent with metastatic melanoma.(see note)  Note: Histological sections of the needle biopsy from the left axillary mass show tumoral cells with an epithelioid appearance, centrally placed hyperchromatic nuclei, indistinct nucleoli, and variable amounts of dusky cytoplasm.  Immunohistochemical stains were performed, which showed tumoral cells to be positive for S-100, but negative for LCA, cytokeratin, and MART-1

12/1/2010   Lymph Node, Left Axillary, Dissection:  Metastatic Melanoma in 2 of 16 lymph nodes (2/16), largest metastatic focus measures 3.3cm in greatest dimension involving greater than 90% of the lymph node area, subcapslar and intraparenchymal in location, extracapsular extension identified.

Three options given; 1.  Follow with close observation.  2. clinical trial ipi vs. placebo. & 3. interferon.   

My husband has polycystic kidney & liver disease and his insurance does not cover "Clinical Trial"

As of 12/30/2010 Pet/CT scan NED!!! 

What do we do next.......

Lee

One day at a time.....

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KRob's picture
Replies 1
Last reply 3/3/2011 - 11:34pm
Replies by: amberhulin

After reading the report on the study by the Wellcome Trust Sanger Institute on genome sequencing in melanoma, I was wondering if anyone on this board has been part of the study and had their genomes and melanoma mutations sequenced.

I know genome sequencing is expensive, but they article indicated that there is an ongoing effort to establish further studies of genome sequencing.

 

Thanks,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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After 3 months I failed the IPI. Most of my tumors have grown alot and 8 new ones have arrived. For me... The IPI was like feeding melanoma candy that it loved.

Dr Weber told me I have a couple of months to live if I do nothing. He reccommended sending me to get  Carbotaxol this week in Moffit while I am waiting for the processing for an appointment to MD Anderson in 2, 3 or 4 weeks if I am lucky.

Does anyone know if the Carbotaxol treatment would cause a delay in getting any kind of trial 1 treatment. I have heard of so many things that cause delays with trials........I don't want to agree when I should disagree.

Please help.

Rocky (Stage IV LIver Mets)

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Jerry from Cape Cod's picture
Replies 18
Last reply 3/3/2011 - 9:11pm

Hello All,

I've been laying low for awhile, but thought it might be a time for an update.

I've just reached my 108th week of participation in the IPI "Brain" trial.  It's a bit overwhelming with all the knowledge I've gained about Melanoma since my "move up" to Stage IV in January of '09 to still be an active participant.

The MRI was consistent with the last done 3 months ago.  3 small "enhancing" lesions (too small to measure) in the brain. The docs are about ready to call them necrosis.  The remains of the radiated tumor in my C-spine is slowly shrinking away as my body disposes of the dead tissue.

The mets on the left adrenal and the small bowel disappeared along with the majority of lung mets over a year ago.

One pesky met in the left lower lobe obstructed a bronchial tube and caused the formation of a couple of small semi permanent pneumonias.  In the last month two bronchoscopes were done on the lobe.  The first, a flexible clearly showed the lesion in a very accessible location.  A week later a rigid tube scope was performed to attempt to remove the entire met.  Unfortunately there were some unforeseen difficulties and only about 2/3rds of the met could be harvested.  In addition the bronchial tube and lower lobe were "compromised" so the decision was made to remover the lower left lobe with a VATS procedure to be done in two weeks..

The bottom line is once the lung procedure is complete I should have no active disease.  HOLY S*iT BATMAN!!!!

The other good news is that I will remain in the IPI trial and continue on maintenance.

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Ohdearjessica's picture
Replies 9
Last reply 3/3/2011 - 8:42pm

I can breathe again until the next scan!

 

I got a prescription for soma for my shoulder/neck pains. Has anyone tried this before? I am uninsured so I have to figure out how much it will cost me

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Ohdearjessica's picture
Replies 5
Last reply 3/3/2011 - 8:39pm

I guess I'm just looking for support.

I don't know my original path report by heart, but I was dx in may 2009. I was pregnant at the time so I had to wait 4 weeks to find out what stage I was. 12 days after I had my son I had the WLE and SNB. They found cancer in a node in my neck. Had 2nd surgery a month and a half later where they removed the rest of the nodes came back clear. After all was said and done I was stage 3.

I have had a scan since then and it was clear, but I've been in constant pain at the surgery site (left neck and shoulder). I've been taking ultram for it but the pain is making me paranoid. I guess it's just Pre-scan anxiety, but I'm really freaked out that they are going to find something on Thursday.
I have been very positive until this last week.

Any encouraging words, support, or your experiences are welcome and appreciated

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/3/2011 - 4:32pm
Replies by: Jenjen, Sherron, ShariC

Has anyone on this board thought or their dermatologist thought you had a blood blister when after a biopsy it turns it was actually nodular melanoma?

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Hi folks,

I didn't go, but I thought I would post the link the the Melanoma Conference that was held at UNC on 2/24/2011.  The first link is just photographs -- not much information:

http://unclineberger.org/news/2011/release02241/

The second link is to a powerpoint presentation on staging, which might be of use to some of you.

http://www.med.unc.edu/cme/events/third-annual-unc-conference-on-melanoma

Best wishes to everyone!

ellen

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RMcLegal's picture
Replies 2
Last reply 3/3/2011 - 10:11am
Replies by: RMcLegal, mom3girlsFL

I'm a very lucky seven-plus year survivor, healthy and NED, after a diagnosis of Stage IIIc melanoma in 2003.  I read the posts of much younger patients, so often with young kids, who are struggling with my diagnosis, or worse, and it just pisses me off that they have to face this trial.  (Excuse my language, please.)  My heart goes out to everyone who is struggling with this beastly disease.  I don't have a clue why I've been so fortunate and so many others have not.  So, all I can do is blog about the lighter side of my journey at www.hotelmelanoma.blogspot.com and hope it provides a few smiles and a bit of encouragement.  Best wishes to you all.

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ValJaneMB's picture
Replies 15
Last reply 3/3/2011 - 8:21am

Hi everyone, i am in Pittsburgh and just finished round 1 of IL-2 at UPMC. I am being treated by Dr. Kirkwood. Right now i look like the Michelin Tire man - with really bad acne. Day 3 into the treatment I developed all these white pustules (gross I know) all over my face, neck chest and shoulders. They then broke and began to bleed. Has any one experienced this? We are staying in town for two weeks before round 2 starts and I need to know if there is any way I can prepare my skin for the next round? All the staff at the hospital were great giving me benedryl, lotions, etc but not able to help me further. After the 2nd round is complete we will be flying back to Winnipeg Manitoba and I am not looking forward to flying in this condition. The fact that I gained 40 lbs of water weight that is slowly coming off doesn't help either. I am thinking of cabin pressure on the plane.

Are the symptoms during the rounds always the same? Hopefully not worse. By the way the IL-2 tip sheet posted by another of our forum members (sorry can't remember her name) was INVALUABLE. I would have been lost without it!

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carol b's picture
Replies 5
Last reply 3/2/2011 - 11:01am

well ill be back at vandy in the morning at 8:20 for round 2. im so dreading it. i still havent gotten rid of the itchies yet from round 1.any ways, im mostly out of it while im there so im sending u all a bunch of prayers at one time tonite. Take care all.

carol bellinger

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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