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
Lisa13's picture
Replies 1
Last reply 5/8/2012 - 9:07pm
Replies by: lhaley

Hi. Linda,

it looks like I have to the steroids, but i'm really try to not take the. The most problem I have is a weak hand and a small amount of forgetting words. I had a gamma knife 2 weeks ago and told me the huge one I have hasn't moved for 13 days. If it continues to stop moving or it can shrink, can be amazing!

Do you know when blood disappears so that they know if there is tumour? Is it 2 weeks or months that the blood would disappears. Do you think I should be taking the steroid? They told me to start at 4mg.

Thanks Linda. I hope you're doing okay.

Lisa

Many impossible things have been accomplished for those who refuse to quit

Login or register to post replies.

cldeters's picture
Replies 9
Last reply 5/8/2012 - 7:57pm

I had a wide excision of a tumor on my right leg, a wide excision of a tumor on my left leg and all the lymph nodes in my right groin removed in December 2011. I met with Dr. Lao at U of M this past week and was told I don't qualify for the typical Stage IV treatment because there are no tumors to measure. He suggested I do surveillance which includes getting scans every 3 months. His second choice was the trial of IPI vs. Interferon. With the low response rates of both of those drugs and the severe side effects, I am wondering if the "wait and see" option isn't the best. I would love to get other opinions from people who were in my situation. This is very scary and hard for me to decide.

Login or register to post replies.

AlanM's picture
Replies 3
Last reply 5/8/2012 - 5:38pm
Replies by: triciad, aldakota22, Karin L

I was diagnosed Stage 4 (brain met)  in  April 2011. Just had my 1 year scan and it was all clear! I treated the brain met with the gamma knife in May, 2011. And then ipi in the fall. So far the brain met has not disappeared, but has shrunk and swelling has subsided. Anybody have experience with how long it can take for the met to disappear completely? Anyway, just thankful to hear the good news today. And thank you to all those that post and respond on this site. The information I have gathered here has been very helpful.  Regards, Alan

Login or register to post replies.

yoopergirl's picture
Replies 4
Last reply 5/8/2012 - 5:35pm

My tumor on my arm is just getting bigger and I have to wait until June 3rd for my cscan, just had 3 treatments of yervoy and then the side effects were too bad to have the last one and that is a big concern of mine that only 3 does would not shrink these tumors. So has anyone had a response without the full course of treatment?  Thanks in advance, I know so little about my cancer and everyone here seems to know so much I do know that I am stage 4 with mets in my lungs, arm, lymph node and possib le stomach.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 5/8/2012 - 5:35pm
Replies by: natasha

I have been a lurker here.  I am newly diagnosed with a stage 0 melanoma.  Is this considered a cancer?  I was given a information packet from National Cancer Institute today after my wider excising.  It says that, and I quote:: In stage 0 abnormal melanocytes are found in the epidermis.  These abnormal melanocytes may become cancer and spread into nearby normal tissue.  

DOES THIS MEAN THAT IT IS NOT CANCER?  WHY DOES IT SAY MAY BECOME CANCER?  I WAS TOLD IT WAS CANCER. 

Is this a big deal, something I should be telling my parents, or not worthy of the worry it may cause?

Login or register to post replies.

This is very interesting because the Immunotherapy (Anti-PD-1) has caused me to have some white splotches called Vitiligo...my onc says its a great sign the treatment is working for me...this article also states

"Genetically, in some ways vitiligo and melanoma are polar opposites. Some of the same genetic variations that make one more likely to have vitiligo make one less likely to have melanoma, and vice-versa," said Spritz. "Vitiligo is an autoimmune disease, in which a person's immune system attacks their normal pigment cells. We think that vitiligo represents over-activity of a normal process by which one's immune system searches out and destroys early cancerous melanoma cells."

http://www.medicalnewstoday.com/releases/245073.php

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"

Login or register to post replies.

Replies by: montana girl, Janner

Hi, I was wondering about a bluish spot that showed up 1/2 inch away from my scar on a melanoma that was removed 9 mo ago, is this somthing i should wory about?  I have severl moles the dock sed he would watch.  I also just 1 week ago found  a lump in my rite breast and a very tiney light red mole over the top of the lump .  to meney doc bills  , and no INS... and im afraid to go back to dock  i just cant aford it  . has eney one had this befor ?

Login or register to post replies.

teri0915's picture
Replies 3
Last reply 5/8/2012 - 11:18am
Replies by: teri0915, KRob

Hi everyone!! My name is Teri, im new to this site and i am so glad I've found it! There doesn't seem to be many sites for melanoma and im glad that ive found it to hopefully connect with other fighters of this disease and to hopefully share some words of wisdom, experience, advice and support. I do have a question though. I have been told to watch for unusual bruising/bleeding while on temodar but what really consists of unusal? I am very fair skinned and ive always bruised easily, or at least they show easier, but lately ive noticed a ton of bruises of my legs and i dont remember running into anything lately. Has anyone else had this problem? Im wondering if its just a mix of all of my medication together.

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

Login or register to post replies.

deardad's picture
Replies 1
Last reply 5/7/2012 - 11:51pm
Replies by: Phil S

Hi there just wanting to know if anyone has done well on Temodar with brain mets? Any survivors who combined Temodar with WBR?

I'm loosing hope.

Nahmi

Login or register to post replies.

Anonymous's picture
Replies 13
Last reply 5/7/2012 - 9:47pm
Replies by: Bob B., CLPrice31, Janner, Linny, natasha, Anonymous

We will be vacationing in Mexico, a beach vacation, for 14 days.  We are spending two days on a boat so will be very exposed to sun.  Would it be a good idea to get 10 minutes of sun a day before I go, so that my skin has a little natural protection?  I won't burn in 10 minutes, I will simply develop some protective color.  I had melanoma years ago, earliest stage.  I tried to find information on google but everything was conflicting. 

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 5/7/2012 - 8:48pm
Replies by: H555

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

natasha's picture
Replies 11
Last reply 5/7/2012 - 7:09pm

Hi!

    I am sorry about silly question, but..

    Is it safe to use fake spray tan ( airbrush)?

   It is spring and I want to look healthy glow , like any normal person:(

Thank you

Login or register to post replies.

Webbie73's picture
Replies 5
Last reply 5/7/2012 - 6:36pm

I need some help with sunscreen. I am allergic to chemical sunscreen but they did work. Now I am using physical sunscreens and I don't think they are working. Just running errands in and out of stores and the car results in a pink chest. I was using SPF 30. Any suggestions? And yes I was wearing a hat but my upper chest still gets exposed...not interested in wearing a turtle neck in warm weather. ;-)

Login or register to post replies.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Pages