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.

Expand/ Collapse Topic
 
Replies By
View Topic
nicoli's picture
Replies 4
Last reply 12/29/2010 - 10:42pm
Replies by: nicoli, truwill, bestday

Hi. I left this forum joyfully over the summer due to NED status and hoped to never return. But here I am again because we found 3 small lesions on my scalp. One turned out to be a cyst common to graft sites, one biopsied melanoma, and one is to be biopsied tomorrow. I freaked at first but I am okay now.  Still stage 3B as the lesions are very close to the original tumor site.

QUESTION: My onc is talking radiation to my scalp to try to kill cells. Of course, radiation most likely will not kill all the cells in that area and more surgery may be needed in the future if a recurrence occures again (that sounds funny LOL). My surgeon says if the scalp is radiated he can never again do surgery as the thin scalp skin will be too fried.  Anyone here ever run into this issue?

BTW, I really appreciated the Stage 4 Roll Call of the UnDead. It encouraged me so much.

Nicki, Stage 3B, Dx 12/29/2009,  Almost one year survivor!!

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

Login or register to post replies.

2atlascedars's picture
Replies 6
Last reply 11/30/2010 - 6:32am

Great news...my SNB results were negative (4 lymph nodes...all NED).

I still have to following up with my doctor for the formal staging decision, but I believe this puts me at Stage IIA...which was my greatest hope ever since my initial diagnosis on October 26th.

From the bottom of my heart, I want to thank everyone in the MRF Community that stepped in with their advice, support, encouragement, and prayers. I don't know how I could have gotten through this last month without every single one of you. I know I am not out of the woods yet, and I still need to have my heel reconstructive survery (delayed until 12/3), but this is as good a fighting start as I could have possibly hoped for...givien my initial ominous diagnosis ( Breslow's Depth 3.7mm, Clark's Level IV).

To everyone battling this beast...I wish for each and every one of you that you may awaken every morning with the strength and perseverence to give this fight your very best, and that you may find comfort and compassion when you need it most.

God bless,
Mark (Stage IIA) from California

Login or register to post replies.

Melanoma Mom's picture
Replies 4
Last reply 11/30/2010 - 9:25am

Not sure if this is an "off topic" thing to post .... if so, sorry!

Got the great news this morning that Josiah has been chosen for a wish from Make A Wish! The wish hasn't been decided upon yet - he will soon meet with wish-makers that help the kids narrow down ideas. He is thinking about meeting President Obama! We are all so happy for him. cheeky

Login or register to post replies.

NeilG's picture
Replies 4
Last reply 11/30/2010 - 9:04pm
Replies by: dian in spokane, Anonymous, makedoandmend

Recently had a recurrence on my back after being NED for 2+years. I was initially stage 3a and went through the year of interferon. Now I had an intransit metastasis under left shoulder blade. I had the surgery and am currently looking for adjuvant treatment. I am having problems finding clinical trials and debating on doing one. Has anyone w/ a intransit melanoma gone through a clinical trial and what are some good resources to find one. Thanks so much for the help, it is much needed.

God bless.

Login or register to post replies.

We are putting together an educational piece for caregivers of melanoma patients and would like your feedback.  Whether you are a patient with some words of wisdom for caregivers, or a caregiver yourself, we'd like to hear from you.  What are some of the most important pieces of advice that you could give a caregiver?  What helped you?  What didn't help you?  Are there resources you know about or wish you had known about?  Etc...we really just want anything that you think could help another caregiver.

We will use this information in combination with a caregiver survey that was done by an outside company called Navigating Cancer.  They have been willing to share their results with us but we thought getting your opinion would be even more beneficial.  Thank you all in advance for your intuitive thoughts and opinions.  They are truly appreciated!   

Sincerely,

Shelby - MRF

Login or register to post replies.

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.

Login or register to post replies.

Doug-Pepper's picture
Replies 3
Last reply 11/29/2010 - 7:10pm

Thanks to everyone who takes the time to post their journey! I found this site several weeks ago. My husband (Doug) had a WLE on his back with clear margins. SNB came back with melanoma in one node. They removed the rest under his right arm. All clear. His Dr. suggested interfuron. He is sending us to Vanderbilt for a second opinion.  His pet scan & mri came back normal. We have heard that the side effects of the drug are horrible. We have started juicing in the mornings & have added several supplements, along with a much healthier diet. We are cutting out preservatives & trying to go more natural. Any advice on further treatments/ interfuron?  Thanks so much, Pepper

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

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

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?

Login or register to post replies.

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?

Login or register to post replies.

Pages