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
yensidw's picture
Replies 3
Last reply 12/22/2010 - 7:24pm

This will be a tough one for me since losing Ron in August.  I thank God that He has blessed me with wonderful family and friends who have been my angels on earth.

For everyone battling the beast I wish for you all to be NED.  For all of us who have lost someone this year or in the past, I pray that you will find peace and strength.

Merry Christmas, all, and a happy and healthy new year.

 

Janis

Login or register to post replies.

Linda J's picture
Replies 9
Last reply 12/22/2010 - 1:31pm

Hi survivor family

I'm six weeks out of surgery that removed 10 lymph nodes (5 positive) and a larger tumor around my hip/bum.  I have had local reoccurances since the surgery and I am freaking out.  I have a CT scan and a brain MRI this week but I am in a complete funk while I'm in the "in between". 

I have all kinds of weird feelings and pains and twinges that I'm now thinking is the cancer spreading all over - my body is a stranger to me. 

I will likely start a some kind of clinical trial in the new year but I am feeling like I'm finding a new subq like every 4 days and what if my body doesn't make it until the new year?! 

I'm BRaf positive and my PET scan in September was clear (minus the tumors in my groin/butt they already knew about). 

I'm trying to hold it together for my son (2 years old) and family over the holidays but I really really just need some positive stories to know that it is possible for me to make it to treatment and then beat this devil disease once I'm in treatment. 

If there is hopeful stories out there, please send them my way!

Thanks!

Login or register to post replies.

akls's picture
Replies 6
Last reply 12/22/2010 - 6:38am
Replies by: MariaH, King, NancyGM, Phil S, Fen

Yesterday was the two year anniversary of the day I got my phone call from the dermatologist that I did have a 2.1 deep melanoma.  Since then I've had two surgeries and a year of interferon.  I'm doing well so far.  Clear PET in July.  Keeping my fingers crossed that I'm done with melanoma.  Wishing everyone a happy holiday season.  Enjoying my first Christmas in two years.  Praying we find a cure for this soon.

Peace and Love

Amy S. in Michigan

Stage IIIA 5 1/2  years NED Completed 1 year interferon 2009.  God is Good.

Login or register to post replies.

Here is a paper that may help patients with BRAF positive tumors.

http://www.box.net/shared/static/a130itmxvb.pdf

http://www.box.net/shared/a130itmxvb

Best regards

 

Jimmy B

http://melanomamissionary.blogspot.com/

 

Login or register to post replies.

Just wondering how your treatment is going?  When will you be getting out of there?  Thoughts and prayers sent your way...

Luke 1:37

Login or register to post replies.

LynnLuc's picture
Replies 5
Last reply 12/20/2010 - 6:20pm

I am blue today...which really is nothing new at this time of year. Yes, I should be happy and dancing ajug being NED  but....but during the season from Thanksgiving to mid Jaunary I go through a funk...

It was Thanksgiving in 1978 my mom went to the hospital for the last time with cervical cancer and died Dec 18...they buried her on the 23rd...She was 45.

It was Thanksgiving in 1998 my son went to the hospital for the last time with Desmoplastic  Small Round Cell Sarcoma and died on January 16th..He was 16. My son said he was going to come home the first day it snowed..when.they took his body from the hospital to the funeral home we had our first snow...

Aw this sucks...I think its nap time again

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.

KellieSue's picture
Replies 5
Last reply 12/19/2010 - 7:25am
Replies by: triciad, King, JuleFL, Becky, Terra

I got my last dose of ALT yesterday. Yippeee!!!!

This round has been much easier than the 1st time I did the trial. Cisplatin kicked my butt but the ALT hardly bothered me. Odd.

I did have one day of stupor and agitation after I came home. Apparentley I was very mad about a snow suit and some gloves but don't rmember that! ha

Dr. did say those were common side effects.

Scans on the 27th, hoping for shrinkage and possibly NED status. Would be a great present!

Hope everyone has a wonderful holiday!

Kellie(from Iowa) Stage IV    

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

Login or register to post replies.

nicoli's picture
Replies 9
Last reply 12/20/2010 - 10:12am

Hi, looking for anyone using biochemo now or in the past. I am most likely going to start Interferon, IL-2, DTIC and a few other wonderful sounding chemos in the next month or so (University of Colorado recipe).  I'm stage 3 and hoping to stay here.

I already know the common side effects and how difficult this will but am pretty sure I want to do this anyway. So I am looking for POSITIVE, HOPE -INSPIRING responses. Anyone with good experiences? (Funny stories about your biochemo experience especially appreciated!)

Nicki, stage 3b, diagnosed 12/2009, remission 7 months, local recurrance 10/2010

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

Login or register to post replies.

Rocklove's picture
Replies 14
Last reply 4/13/2011 - 4:09pm

Hi all, I started the Ipilimumab last Friday and within a few days the tumors that are noticable on my right leg have swelled up alot including the leg, the tumors are warm and tender to the touch. 

The tumors in my liver have not bothered me any more than normal.

Is this a side effect that I should not worry about?

I would appreciate any knowledge to cope with this as it has started to keep me awake the last few nights with the pain.

Thanks,

Rocky  (Stage IV Liver Mets)

Login or register to post replies.

nicoli's picture
Replies 4
Last reply 12/17/2010 - 1:42pm

I have a 2 local recurrances after 7 months of remission. My onc spoke with a doctor at the University of Denver Melanoma Clinic who strongly suggests a 12 week course of DTIC plus Cyspblastin plus vinblastine plus IL2 plus Interferon. In the hospital 7 days, 2 weeks at home, repeat 4 times. Maybe radiation after that.  (I may have misspelled some of the chemo)

The plan is to prevent Stage 4 by killing cells before they become tumors.

I have read the posts regarding IL2 but wonder if anyone has done this combination. 

 

Nicki, Stage3b

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

Login or register to post replies.

Noramott's picture
Replies 4
Last reply 12/17/2010 - 10:13am

Hi.  I haven't been here in a long time.  My first husband passed away with Melanoma 7 1/2 years ago.  I have just found out that a friend has to go to a surgeon to have one removed.  Needless to say, he is very upset.  I remembered this site and knew you all could help him.  He hasn't gotten a lot of info.  He knows it has to come off.  What are the questions that he has to ask the dr when they call him to tell him the results.  The derm told him it was suspicious.  The surgeon that read the same report told him it sounded like it is Stage 2.  It has been a long time since my husband went through it and even then, I didn't know what to ask at the beginning.  I didn't find this site till much later.  So please help him. Thank you.

Login or register to post replies.

Phil S's picture
Replies 4
Last reply 12/18/2010 - 12:50pm
Replies by: JakeinNY, jag, Becky

I just wanted to post and tell everyone that my husband had his head MRI and PET/CAT scans yesterday and the results were very positive, as no cancer is appearing on any of these tests.  Just a quick background, my husband was diagnosed with anal melanoma in January 2010, and has completed eight months of interferon.  Since this form of melanoma is rare and often times aggressive, we have been so worried about these scans.  He has recently had a cold and cough that wouldn't resolve and the doctors told us yesterday that he has pneumonia, and I was so happy that it wasn't the cancer.  He is now doing well (on antibiotics) and ready for four more months of interferon.  He has already lost 35 pounds, and our doctors told us that the average weight loss for a man on interferon is 25 lbs, so we need to fatten him up to tackled the next four months. 

Anyway, I am mainly posting to tell everyone that we are always thinking and praying for all of you, our melanoma family. Also, I want to encourage all those who are undergoing interferon to know that so far we are holding those melanoma cells back, something that we didn't think we could do one year ago, when they gave us our grim prognosis.  So Keep Fighting!!  Wishing everyone a Happy Holiday season.  We are so excited to be able to spend this special time of the year with our young children with renewed spirit.    Valerie (Phil's Wife)

Login or register to post replies.

Linda J's picture
Replies 3
Last reply 12/16/2010 - 8:50pm
Replies by: nicoli, Carmon in NM, jag

I'm just wondering if people here have done any natural or homeopathic treatments along with, or instead of conventional therapies.
I'm trying to decide if I should do any vit C infusions. I think I might also get a juicer and try any alkaline diet...any thoughts?
Does anyone have success stories connected to natural or homeopathic treatments?
Thanks

Login or register to post replies.

Sherron's picture
Replies 2
Last reply 12/17/2010 - 12:13am
Replies by: JenC

How are you and your husband doing.  I have not seen a post from you recently...Just thinking about you both.

Take Care,

Sherron,wife to Jim FOREVER

Login or register to post replies.

Pages