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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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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LynnLuc's picture
Replies 4
Last reply 3/5/2011 - 10:36pm

I have blood work at 745- see Dr Weber  around 8 and do the last regular cycle in my trial- tah dah I am now going on to my 12 month of Stage 4 melanoma NED...oh NED is my best buddy!

I get scans and apheresis next week  then I guess every 3 months I will get scans, blood work and booster IV of  Anti PD-1 for 2 years if I remain NED.

wow...I also returned to work and nearing my 3rd week -it is still so exhausting but hoping as I get farther awhile from the trial meds the less tired I will be...

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Jim M.'s picture
Replies 11
Last reply 3/5/2011 - 9:17pm

Hi everyone,

 This has been one of those weird rollercoaster weeks (2 weeks) for medical appts. First something suspicious appeared in the ileum, the end of the small intestine. Then I did the small bowel follow though. I drank the barium contrast and had x-rays of that area. Nothing appeared. It was completely normal and the radiology doc. showed and explained the x-rays to me. I thought maybe this would be satisfactory to Dr. Weber. Wrong! He said sometimes masses hide in the walls of the intestine and also hide due to the folds in the intestine. He mentioned intussuseption is possible. I read that's when one bowel slides into the other. Apparently the small bowel follow through isn't fool proof.

 The next step is a PET Scan which should give a difinitive answer. I'm scheduled for the scan this Wed. early in the morning. I'm glad Dr. Weber is being proactive. I got permission th discontinue Alendronate as the bloating, and abdominal pain are side effects of this drug.

 I 'd appreciate  your prayers. I will post when I know something.

 God Bless to all,

 Jim M.

 Stage 3C

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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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KellieSue's picture
Replies 1
Last reply 3/5/2011 - 8:16pm
Replies by: Fen

Just started B-RAF last week.

I of course will speak to my oncologist next week about this but I was wondering if anyone knows if having elective surgery while on B-RAF would be allowed.  I've read through all the paperwork and it doesn't say anything in there.

I guess it's not really elective, except for the timing. I would be electing to have it done now if I could, but I'm not looking to get butt cheek implants for vanity sake.

I had a unilateral mastecomy due to melanoma in the breast back in 2007, I had one follow up surgery in 2009 to replace the tissue expander with a real implant. I've never finished my reconstruction. I would like to make the reconstructed side look "real" and make the other side match, if you know what I mean!  :D

I imagine it would be a fairly simple surgery(from what I remember my plastic surgeon telling me at the time) and I know it's covered under my insurance as it's part of the reconstruction process I started years ago and fairly simple recovery(at least compared to some of my surgeries).

Any thoughts?

 

Kellie(from Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Doug-Pepper's picture
Replies 3
Last reply 3/5/2011 - 6:51pm

I am praying for so many that are affected by this horrible disease! We are still juicing, eating more natural foods & taking supplements. Started a bible study on "The Seven Pillars of Health" by Don Colbert. Anyone have any suggestions on Alkaline water filters? Thanks, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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emilypen's picture
Replies 6
Last reply 3/5/2011 - 3:38pm
Replies by: KellieSue, P Brown, Anonymous, tennisgirl, mrsmarilyn

Hi All,

My hubby was on a MEK/P13k trial and after having an adverse side effect he was taken off the study. One of the tumours in his back has grown too close to his spine so its surgery on Tuesday, followed by some radiation and then on to PLX-4032. He got the dacarbazine arm of the study last summer so with expanded access he is allowed to get on the Roche B-Raf drug right away.

So what I'm wondering is how many people on this board are on the drug now and for how long? and if you failed off B-RAF how long were you on the drug?

We were hoping for a B-RAF/IPI combo trial but they don't have that set up yet, our onc says he expects it soon.

Thanks,

Emily

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Hello-With 7 tumors including 1 on lung, my brother was put on Braf/GSK 9 months ago.  All have dissapeared except one in pelvic area-which grew and therefore, he failed Braf according to trial standards.  So his Dr. at Sara Cannon put him on GSK Braf/MEK combo.  All PET was clear except the one reamining stubborn tumor and we are hoping this Braf/MEK will knock it out.  No side effects - he feels great, but once again so mysterious why all six were eliminated and yet one still remains.  We are so close!

Best of luck to all and feel free to contact direct.

ThinkSpringSnowbirds!!!

MrsMarilyn from Michigan

sister of Gary (from Florida stage IV)

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Amy K's picture
Replies 8
Last reply 3/5/2011 - 11:16am

Hi Everyone, 

First of all, let me say thank you to you all for the posts and comments on this board!  It has been a wonderful support to me as we've dealt with this awful disease.  It is nice to hear from others going through similar things.  Sorry we all have to meet on this page though.  :)

My husband was stage 3 in 2002 (we found this out a couple weeks after we got engaged), did interferon high dose 6 weeks, low dose 11 months.  We did great for 8 years. We have 3 young, wonderful children. 3 months after our third was born, BOOM this cancer came back and we're now at stage 4.  We were shocked it came back 8 years later.  (We had thought we had made it past 5 years, and thought  there was a low chance it would come back, and we weren't in that low percentile.)  It came back last August and we entered the Roche BRAF inhibitor  BRIM trial.  We were disappointed we got  the chemo instead of the pill, but after 6 months of dacarbazine, the tumors are gone (all 35)!  We are now so happy that we are NED.   

There's one problem my husband is still dealing with.  I wondered if anyone had anything similar or knew of anyone like this.  So, in July of last year he noticed his lymph nodes enlgarged and his eye was bothering him.  The lymph nodes were melanoma and we have done lots of scans of his eye and no cancer is shown in the eye.  However, he's had 2 eye surgeries to fix the glaucoma and then recently to reattach the retina.  His eye is not doing well.  We have heard of auto-immune response to chemo or IL2, but his eye started going bad before we were on any treatments.  Just recently they tested the vitreous (the fluid) of the eye for cancer and came back negative!  Great news.  But, we're still tyring to figure out what is wrong with the eye.  We've gone to several doctors and no one knows the cause and his eye is causing him lots of pain and annonyance.   A couple doctors are suggesting enucleating (removing) the eye.  We're trying to wait and not do that right now.  Any thoughts?

Another question I had.  So, we are so happy the cancer is gone.  Dacarbazine was awful and my tough husband endured that for 6 months even though he kept saying I don't want to do that again after/during each cycle.  We are so glad to be done with chemo.  We know chemo isn't a cure for melanoma.  The doctors expect it to come back but it's just a matter of when.  The doctor said it could be 2 months, and he thought really hard of a case where it didn't come back for 18 months.  We are thrilled chemo has worked so well for us and wondering if any of you have had experiences to how long it can keep the tumors from coming back.  

We are still on the BRIM trial and we can get the BRAF inhibitor drug if (when) it comes back.  We also wonder if IPI would be a better choice.  Although if we did IPI next we couldn't get back on the trial for BRAF inhibitor.  So, I guess BRAF should be first while we can get it and then do IPI.  Let me know if that sounds right to all of you who have dealt with IPI or the Roche drug more than us.  

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steelergirl's picture
Replies 1
Last reply 3/5/2011 - 4:23am
Replies by: Fen

I haven't been on in awhile.  I had two scares last year that made me think my cancer was back and I was no longer NED.  I was fine.  In January, I had a physical and my doctor found a polyp on my cervix.  I saw a GYN Oncologist yesterday and he couldn't remove it while I was in his office.  I will have it surgically removed on April 1, only a 30 minute procedure.  February 1, I had  my 6  month CT scan check up.  I got the results on Monday.  A nodule in my left lung has grown from 3.2 mm to 5 mm.  I have an enlarges lymph node in my left pelvic area, and I have a cyst on my right ovary.  I will be having a PET/CT Scan this coming Monday afternoon.

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RMcLegal's picture
Replies 3
Last reply 3/5/2011 - 4:16am
Replies by: Fen, RMcLegal, Erica A

Has anyone else felt like their brain was hijacked during chemotherapy, taken for a long joyride, and later returned with some dings and dents?   I underwent biochemotherapy treatments (a combo of interferon, interleukin-2, dacarbazine, vinblastin, and cisplatin) in 2003 following a Stage IIIc diagnosis.  I've blogged a bit about my lingering "chemo brain" challenges at www.hotelmelanoma.blogspot.com.   I'd love to hear from others who've experienced similar "challenges" and read your stories about the challenges you've experienced and how you try to manage them.  Thanks, and best wishes.

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This is some new info about how melanomas often develop resistance to the B-RAF kinase inhibitor PLX4032:

http://www.nature.com/nature/journal/v468/n7326/full/nature09626.html

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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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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