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

Melanoma Rates May Be Higher for the Rich

Study Shows Link Between Melanoma and Higher Income Levels

 

http://www.webmd.com/melanoma-skin-cancer/news/20110321/melanoma-rates-may-be-higher-for-the-rich?ecd=wnl_can_032911

http://www.MelanomaResources.info

Login or register to post replies.

Jan in OC's picture
Replies 8
Last reply 3/31/2011 - 2:07pm
Replies by: jhoey, Jan in OC, Anonymous

Hi everyone, 

I need some advice. My husband has had the worst itchy rash since his third infusion of IPI.  His skin turned really red all over (like a bad sunburn) and feels all bumpy (he says it's gator skin).  The doctor gave him a small dose of steroids, but had to increase it after a week and a half of no results. The rash has improved somewhat, but he still itches like crazy.  We are supposed to go for his 4th infusion tomorrow, but the doc has said he may not give it to him due to this reaction.  Also, the spots on his side have all increased in size and new ones have appeared.  He is really worried that the IPI is not working due to the steroids.  Has anyone gone thru this?  Has anyone had to stop IPI before all 4 infusions?  We don't have a lot of options if he fails this. He has already tried Interferon/BRAF.  Has brain, liver, lung, kidney mets.  Any input would be appreciated. 

Thanks,

Jan, wife to Dirk

laughter is the best medicine

Login or register to post replies.

Simmy from Oz -Melbourne's picture
Replies 9
Last reply 4/24/2011 - 12:29am

Hi there everyone,

Ive been taking RO5185426 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of RO5185426, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (55kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY?? 

oh, also while im here, has anyone experienced nerve damage in their legs and feet after having them blow up with fluid and then drained very quickly?  its like i have constant cramps in my calfs and an aching kind of pins and needles in my feet.  i cant walk properly and its extremely painful.  this all happened before i started taking R05185426, so it cannot be a side effect. 

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

Login or register to post replies.

claudia-uk's picture
Replies 6
Last reply 3/29/2011 - 10:29am

I read some press release in regards to the FDA approval of Ipilimumab/Yervoy and wonder what the survival times actually mean. I can't find mcuh consolation in a survival time of 6 months ot 10months

The study compared ipilimumab treatment with an experimental tumor vaccine (gp100), gp100 alone, and ipilimumab alone. Median overall survival was 10 months among those who received ipilimumab plus the vaccine, 10.1 months among those who received ipilimumab alone, and 6.4 months among those who received the vaccine alone.

If it is some kind of average, how does it work?

Thanks!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 11
Last reply 6/6/2013 - 12:00am

Please explain the difference. I know a shave is what it says & a punch is what it says but I get the impression that a shave biopsy isn't so great, why?

Login or register to post replies.

theonlydrea's picture
Replies 9
Last reply 3/29/2011 - 10:38am

i was wondering if anyone has or is currently on the Braf particle or food study. My husband will start on the study here soon.

everything i have read posted was just on the doseage or double blind study. the dosage they are saying is now se (i beleive it was 300mg ever 12 hours)t, it is not a double blind study and at this point they are testing if food effects it and if the type of form given effects it. If anyone has any information on what to expect and experiences please let me know. 

Login or register to post replies.

debandmike's picture
Replies 3
Last reply 3/28/2011 - 8:55pm
Replies by: ValinMtl, MichaelFL, KatyWI

Loving the website so far but could use a few guidelines on how to set up a profile. Am I setting it up for my husband who has the cancer? Or both of us?  Looking for guidance and appreciate all your replies to my email. I feel I have found a place to go and share with others who are going though the same thing my husband are going through. Thank you for welcoming us to your family.

Login or register to post replies.

trojansurvivor's picture
Replies 17
Last reply 10/30/2011 - 5:01pm

I am an 8 year Melanoma stage 4 survivor, and have been in the drug trial for Yervoy for the last 6 years, and have had clear scans for 3 years.  I originally was diagnosed with stage 4 in late 2002, with tumors in my lung, spleen, liver and spine.  I had bio-chemo therapy,(dacarbazine, cisplatin, IL-2, and interferon).and went into remission for about a year, including a monthly maintenance program of low dose IL-2. After about a year, I started to have soft tissue tumors appear in my groin and upper thigh area, and had about 5 surgeries for tumor removal.  After 6 more small soft tissue tumors appeared, I began the ipilimumab trial. My only side effect was a skin rash on my stomach and back of my legs that disappeared in a couple of months. My tumors began to decrease in size dramatically, with most disappearing within a year.I had a second infusion treatment 2 years after the first treatment.  One tumor, however, began to grow larger and about 3 years ago was surgically removed.  For the last 6 years, no new tumors have appeared, and I have had clear scans for the last 3 years.  

This drug was a god sned for me and saved my life !!!

Login or register to post replies.

Charlie S's picture
Replies 7
Last reply 3/29/2011 - 6:34am

Just got off the phone after a nice extended conversation with Amy and she is hanging well.  Between Fentanyl patches and oral meds for breakthrough, she is managing and living.  She was able to go to church yesterday with her family, but tires out after extended outings.

She was quite lucid and just like the Amy I know, but she is tired, tired, tired and still continues working the problem.  

Most of all, she is hanging in there as are her family.

A remarkable woman.

Charlie S

Login or register to post replies.

mimi0201's picture
Replies 2
Last reply 3/28/2011 - 5:00pm
Replies by: Anonymous, Tim--MRF

      Does anyone have any info on obtaining "Yervoy"?  We are in limbo and are unable to get answers on our end.  We're hear at NIH waiting to be tranferrred to Rush Chicago.  Thanks.

Login or register to post replies.

carol b's picture
Replies 10
Last reply 3/29/2011 - 9:58pm

I got a wonderful response from the IL2. The first week I could only do 9 bags of the drug. The 5 days i had to recover were not enough. i went back n got another 6 bags. Its all my body could handle. My heart rate bottomed out both times. But my Doc says i done good. He had only hoped I would get at least half of the 28 bags that ya need to fully get the effect of IL2. I got 15 bags so he was happy. To me it was horrible but totally worth it. My 3 tumors in my neck have disappeared. Well they aren't budging out anymore. The huge one under my arm is about half its size now. Maybe 2 inches wide compared to around 6 inches. We are excited about IL2 working. Doc says im not out of the woods yet but at least it is working. He says my on immune system has kicked in and i should be seeing the tumors shrink even more as the days pass. As far as being back to self after 2 weeks, it didn't happen for me. Im into my fourth week at home and just now feeling some sort of normal. I was extremely weak when i got home and couldn't eat because of nausea, even though i had meds for that. Everything liquid tasted like tinfoil. I realize now i should have listened to you guys on here when you said DRINK water water water.. ..... I took most of every ones advice with me to the hospital.. I Thank God for you all. Even with all the love and support i had with my family and my caregivers{ husband and sister} I would not have gotten thru the IL2 without your words of wisdom and the strength that you all have and for that I Thank You All. Words cant express how much I feel for you. One bit of advice to a caregiver out there, force liquid at all times even if its just a sip. Being dehydrated and the IL2 is not a good combination and no the IV is not enough. And one more thing, if ya see the patient acting weird or saying wired thing or are seeing things notify someone immediately...It can become permanent if not acted upon. Luckily for me my hallucinations were pink fairies and butterflies it could have been the exact oppistie.They continued for about 2 days after i got home and slowly started fading away. I get a PET scan in May and hopefully it hasnt spread anywhere else. I do another round of IL2 the end of May and im scared to death to do it but i will. I have a wonderful team that takes care of me. I can only say good things about Vanderbilt and its employs. Well thats my update. And once again Thank you all. My prayers are with you all that whatever treatment you get or are getting works and gives you back the HOPE that we seem to lose with this terrible disease.

Carol b

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

Login or register to post replies.

barns1's picture
Replies 3
Last reply 3/28/2011 - 1:51pm
Replies by: barns1, Janner, Carmon in NM

Hi, I have had two melanomas, one in 2005 ulcerated and one in 2009 non-ulcerated. I also have been diagnosed with chronic lymphocytic leukemia. What are the chances the melanoma will show somewhere else in the body because of the ulceration? I have never found any stats, thought maybe someone else has. Thank you.

Login or register to post replies.

 

We are looking to speak with patients diagnosed with specific types of melanoma including basil cell carcinoma to participate in a confidential paid phone/online study.

 

If they meet the study criteria and participate

They will be paid $175 for a one-hour teleconference

The discussion will be scheduled at their convenience anytime between April 7th to April 15, 2011.

 

This study is being conducted to help improve treatment and education for people living with specific types of melanoma.

 

To see if you qualify click this link  https://www.surveymonkey.com/s/JGVKBJZ

 

For additional information please contact:

Jane Walker at 888-392-5000

Login or register to post replies.

Simmy from Oz -Melbourne's picture
Replies 1
Last reply 3/28/2011 - 11:35am
Replies by: Anonymous

Hey everyone,

Ive been taking plx4032 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of PLX, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (53kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY??  

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

Login or register to post replies.

Our family is walking in the ACS Relay for Life in May, in honor of my battle with stage 4 thyroid cancer and our 15 year old son's current battle with melanoma. Do any of you have any info/statistics/personal stories on how ACS has aided melanoma research or patients? I would like to have some melanoma-related info to share with friends when asking if they would like to contribute. Thank you in advance!

Login or register to post replies.

Pages