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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baseballmom's picture
Replies 6
Last reply 2/22/2011 - 10:04pm

I have been reading the posts on this site for quite some time now and have gotten much hope and inspiration from them.  I never felt like I needed to post, but now I do.  I was diagnosed with a choroidal melanoma (in the eye) in 1/09.  I opted for enulceation (removal of the eye) in 2/09 and was fitted for a prosthetic in 4/09.  On my first round of rescans in June of 09 a small spot was found on my right temporal lobe.  My neurosurgeon was able to remove the spot by doing a craniotomy and get 2mm clean margins.  In August of 09 I was given the choice of gamma knife for added precaution.  I chose to do it and all was going along well.  I was getting tested every 2 months, mainly MRI's of my head and PET scans.  In March of 10, a very small spot was found on my left temporal lobe which was too small for surgery and we were able to hit it with gamma knife and that took care of it.  My head MRI's have been clean since.  I just had a PET scan because it had been about 10  months since my whole body had been checked.  Well, they found increased uptake in the liver.  Had a CT scan and it confirmed what the PET found.  The doc was ready to lay out a plan for treatment but thought I looked too good for what the scan showed, so he did a liver biopsy and of course they confirmed melanoma. 

I am freaking out.  It has taken 4 weeks up to now for all the tests and results.  I see Dr. Donald Lawrence at Mass General next week and will start clinical trials, but of what, I'm not sure.  I haven't really been this scared since my initial diagnosis.  I even mention the word liver to people and just the look on their faces makes me feel like I have a death sentence.  I have 3 kids, 17,14 and 8 and am just not ready or willing to leave them yet.  I know this will be the hardest part of the fight, but I am ready for it.  At this point, I just want things to get started. 

Does anyone have any advice to offer, I have told the docs I will do anything and everything, any suggestions??

Karen

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EricNJill's picture
Replies 2
Last reply 2/18/2011 - 4:00pm
Yesterday, we were visited by two young men from Australia that are traveling the US on an 18 day tour to spread awareness about Melanoma.  In Dec 2008 when Eric was in the hospital from the surgeries to remove his lymph nodes I did a search to learn more about Melanoma.  I came across a video from Jay Allen of Australia.  His story was identical to Eric's.  I wrote Jay a note and thanked him for posting the video...then the next day I received an email from Jay.  Jay and I kept in touch ever since.  Monday, Jay celebrated 3 years without Melanoma.  Accompaning Jay on this journey is Clinton Heal.  Clint was just named Young Australian of the Year.  He also lives with Melanoma having had 34 tumors removed.

They came to our home and stayed with us.  We have formed such a bond.  Channel 2 came to our home and covered some of our story.  Here is a link to that coverage.  http://www.wdtn.com/dpp/news/local-cancer-patient-gets-help-from-down-under  The interview was actually an hour long but unfortunately a lot got chopped!  I really wish we could have had more information shared about Melanoma and the dangers...

Jay & Clint also interviewed my daughter Sam and my father.  They are posting those videos on their blog at www.melanomaroadtripusa.com

 
 

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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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Redhorse's picture
Replies 3
Last reply 2/18/2011 - 7:28pm
Replies by: LynnLuc, lhaley, TAC

Not sure what to do. Doc wants to cut me Dow the middle to get biopsies from both lungs. I can also just go with him taking one nodule from my left lung, see what it comes up with, and then wait for one of the nodules in right lung get big enough for another cutting session. I also have "numerous" nodules in the bottom of both lungs.
I don'think it is the same cancer. I have been diagnosed with prostate cancer that spread to my bladder, and had melanoma removed from chest in2007,
Anyone had this type of surgery, and if you had them go down the middle, please let me know how that turned out.

Thank you,

Miley

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Shelby - MRF's picture
Replies 10
Last reply 2/22/2011 - 9:36pm

I was informed today that the memorials from http://www.mpip.org/memorial.html  did not transfer over to our new site.  We aren't sure why this transfer didn't happen, but we are very sorry.  They have now been added.  However, I am missing last names for the following individuals, so if anyone can provide me with this information, I will make sure their memorials are added ASAP.  Thanks in advance for any information you may have.

Shelby - MRF

Page 1:  Sophie

Page 2:  Steve, Ronnie, Lynda, Dann, John, and Nate

Page 3:  Brenda, Irene, Randy, and Shayna

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Carmon in NM's picture
Replies 5
Last reply 3/5/2011 - 10:45pm

The clinical drug trial I'm on that is working so well for me is INST 0903: Phase II of Carboplatin,Paclitaxel, and Temozolomide

I was so happy when the protocol nurse told me that everyone at UNM on this trial has responded as well as I have. It was wonderful to post some good news on here, especially with so many newly diagnosed folks signing on. Except for those people with a known gene mutation, no one ever seems to know just why one person responds to a drug combo and the next one doesn't . Having 100% of the people here in this trial responding is pretty exciting! This combo is too new to have any idea about recurrance rates but I did find some info on the Phase I trial that set the dosage and one woman has remained NED for four years now.

I'm also very happy that I only have one more infusion to go on March 14th! I'll have a consultation with the oncology surgeon then to talk about how she'll go about removing my adrenal gland and to set a date for that surgery. My husband commented this morning on the phone that I'm getting quite a collection of surgical scars. I told him it was a good thing that there is at least one man out there who 'digs women with scars'!

Wishing you all out there equally happy results in whatever treatments you are in progress with! Carmon in NM

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Lisa - Aust's picture
Replies 1
Last reply 2/17/2011 - 7:19pm
Replies by: EricNJill

Hi Jill,

I saw you guys on the video blog with Jay and Clint! It popped up on my facebook! Great to see you guys are doing well, hope you are having fun with the boys.

All the best

Lisa - Aust

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Emrina's picture
Replies 4
Last reply 2/18/2011 - 9:05pm
Replies by: SusanE, Hawaii Bob

Good Day to you all from South Africa.  My husband was diagnosed with Stage IV MM on 22 December 2010.  The Melanoma has spread to 2 occipital lymphnodes, right cervical lymph node and additional smaller (sub-cm) nodes as well as a single  node present in the posperior mediastinum and both lungs (muliple bilateral pulmonary metastases).  He was given 3 options.  No treatment, DTIC or the Clinical Trail.  We went for a 2nd opinion and the diagnoses was the same.  He was approved to take part in the OncoVex Clinical Trail.  Luckily he got the OncoVex GM-SCF arm of the trail.  He had his first injection on 18 January 2011 and the 2nd on 8 February 2011.  His next injection will be 22 February 2011.  He had side effects like headaches, vomiting, nausea, body aches and pains, tiredness and overall just not feeling well.  With the 2nd injection he had with the mentions side effects diaree also.  I have found only 1 guy in America that was on OncoVex for a year and he a "partial responder".  Is there anybody out there that is willing to share their experience with OncoVex with us. 

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JenC's picture
Replies 15
Last reply 5/12/2011 - 1:49pm

My husband has been in this horrible fight for 17 months. Each step of the way has been met with disappointment and loss of hope. He has done the standard treatments of surgery, adjuvant radiation and interferon, tried to get on the braf trial only to get the control, IL-2 and more radiation and now ipi. However it seems that there is no getting ahead of this cancer. He hasn't been able to eat mostly due to pain and nausea but also due to the fact that he has tumors on both sides of his throat which causes difficult swallowing. His oncologist has always been positive, but was not able to offer much hope during this week's visit. My husband is down 60 pounds and looks like a cancer patient. He is on week 7 of the ipi trial and we're holding on to some hope that his tumors could still shrink, however his body cannot heal small wounds, let alone massive tumors. We have a home health and hospice nurse but are not ready to give up completely. I have read this board quite often in the past year and a half and have found hope and insight. I have read many of your stories and have been inspired. I don't want to just complain about our struggles, but maybe someone out there could provide words of hope. My hope has caused me to go on with my day life almost to the point of not facing the graveness of his situation. Life has been full and busy with two young children and a full time job. I am at a point where I may need to let go of some of my hope and just be with my husband. I hope I don't make my decision when it's too late.
Thanks for listening
JenC

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I need advice---and maybe for someone to tell me to stop overreacting--but it has been exactly 3 weeks today since my sugery, I was healing well, handling the pain of the 5 incision, etc, until today. Although I have been taking it super easy, the pain tonight has been intense. It feels like my nerves are waking up in my shoulders, neck, arms. The numbness isn't really numbness anymore. It is more of a tingling pain. None of this is unusual...I have had these problems since the surgery. But it is becoming a little worse. For example, someone touched my chest bone to remove a piece of lint today and it HURT. not like a cry out in pain hurt, more of a "please don't touch me" type of hurt. Another example, my boyfriend ran his hand down the back of my arm and I cringed. I have had all of these pains before...but it seems intensified today. I don't know if I did too much yesterday/today?

What IS really unusual is the fact that my lymph nodes in my neck are swollen.

I was checking out my neck incisions tonight because of the pain level...started feeling around...it feels like there are two small rocks placed above the incision sites. Asked the boyfriend to feel and he said it definitely feels harder than he imagined it would...All other sites (both armpits, back incision) look fine...Still overly numb.

Should I be concerned? Should I call my oncologist tomorrow? I have an appointment at Memorial Sloan Kettering on the 25th, I don't know if I should wait until then, or check in with my local oncologist.

I realize I may be overreacting...but I was told to keep an eye open for swollen nodes...so now I am a nervous wreck.

I apologize if I am being dramatic........Advice, anyone? frown

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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dennest's picture
Replies 15
Last reply 3/5/2011 - 8:19pm

Hello,

I was diagnosed back in April with a stage 1 melanoma. My site was .35mm. I had a wide excision and no further treatment. I know that I was incredibly lucky to have caught it so early, but now that some time has gone by, I feel like I should have done more even though further treatment is not recommended.

My husband and I are looking to have another child, and I am finding it extremely hard to decide if we should proceed with our family plan. Of course most doctors say we should wait for at least two years before getting pregnant. Has anyone had a similar experience with this? If so, how long did you wait, did your pregnancy go well, and did you have any recurrances, etc?

Thank you.

 DEnnest

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WalterA's picture
Replies 3
Last reply 2/16/2011 - 11:11pm

On Friday morning I'm going to have radiofrequency ablation to attack the lesion that was picked up on my scans Monday. The PET scan today (Wednesday) didn't pick up anything else, so my surgeon/oncologist and the doctor who actually will do the procedure are confident that we're on the right track.

Yep, Linda, this is Walter who was from Charleston but now is in Lexington. I'm still going to Charleston for my treatment.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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Wetterhorn's picture
Replies 8
Last reply 2/17/2011 - 10:13am

Bright and early. 7 AM early as a matter of fact, up at Sloan Kettering.  5:45 AM arrival time. At least I won't have to wait around (hopefully) as I am first up. This will be my 5th surgery in 3.5 years. This time on my small intestine. Not looking forward to it, but hopefully I can say NED again tomorrow late morning.  Wish me luck.

Wetterhorn

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ErinMcH's picture
Replies 4
Last reply 2/22/2011 - 11:51am
Replies by: ErinMcH, AS123

Hi!   My name is Erin..... short story, have had one Stage 1 and two in situ's over the past 14 yrs.   I'm now a mom of 2 kids, a 4 y/o and a 15 mo old, and living in Arizona.  (Way back yonder when I was very active on mpip, I was living in Seattle).    I went to pick my 4 y/o daughter up from preschool yesterday, and she did not have her pricey Coolio hat on.....realized she was sunburned from scalp to arms.   Her school KNOWS to apply sunscreen after lunch all over her, and to wear her hat.   I was so incredibly ticked off when I came home and recognized her scalp's burn.   I went straight away to her headmaster and her 2 teachers this morning, who gave me the "oh, I couldn't find her hat (bull), and forgot to put on the sunscreen (when there's a note on the door saying to apply sunscreen....WTF.)  "You want her to wear the hat even if it's 60?"  HE-LLO.   

So I know this note is totally random and doesn't have anything to do with me (my last in situ was 5 yrs ago; I still get mole mapped yearly and see my melanoma doc here twice a year.)   I was VERY lucky I knew/know what cancerous moles looked like, and that I had the first one removed when I did.  (That was a freak show....senior in college in Cleveland (hence, Allison Vidimos/CCF as my doc; still consider her my doc), had mono in the spring, was supposed to go to Ireland for spring break.....instead, went home, begged my mom to drag me to the derm to have the mole removed (even though I was in bed basically immobile.)   Voila- stage 1.   

Now that I have my own kids, I'm a freak about sun protection.   My friends (well, some) look @ me that my child(ren) wear long sleeved/legged swimwear everywhere instead of cutsie bikinis.   Grrr. 

Needed a real outlet to vent..... I'm totally type A when it comes to melanoma.  (I sent my dads friend to a derm 7 or 8 yrs ago to look @ a mole.... indeed, he had stage 2 melanoma.  Still alive.) 

Off my random soapbox......

wanted to say Hi....let's see if my daughter will be wearing her hat and has had sunscreen re-applied when I pick her up soon from school.   

-Erin

The butterfly counts not months but moments, and has time enough~ Tagore

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Just a reminder that UNC-Chapel Hill School of Medicine is hosting a Melanoma Patient Day next Wednesday, Feb. 23, 2011.  The event will go from 12:30-4:30pm and will be held in the William and Ida Friday Center for Continuing Education.  Use the following link to see the agenda, brochure, or to register:

http://www.melanoma.org/get-involved/unc-chapel-hill-melanoma-patient-day 

Contact Shelby Moneer at smoneer@melanoma.org or call (800) 673-1290 for additional information or to register. 

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