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.

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This story came across google alerts today.  I bought a ticket.  Get em while their hot


Insert Generic Inspirational Motto Here

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himynameiskevin's picture
Replies 17
Last reply 12/22/2010 - 9:33pm

Well, I just got back from Maryland two nights ago. The treatment was a bit worse than I had expected... well at times.. It was really rough, but I think I handled it pretty well. Partially from being out there alone and partially because I unfortunately got some sort of stomach bug (somthing I ate) a few hours before I even started the treatment. This is actually what made the treatment tough. If I was feeling well, I bet I would of made it through a lot better and posibbly turned some heads but I was throwing up before they starting dosing me up with the stuff that makes me throw up.... The 2 and 5 days of chemotherapy were pretty unpleasant just because of that. I had no appetite, and was really hard to keep food down, but a nice lady from nutrition came to me as well as my Dr and they had many helpful suggesstions as far as the whole eating thing went. Amazingly I only lost about 6-7 pounds and since about 5 days ago my appetite and been better than ever. Weight's probably close to normal again. Anyway on day 7, I got my cells, a total of 51.7 billion. Then I did 7 bags of IL-2. I was really hoping to do a lot more and thought I'd have no problem like here in San Diego but I started getting a lot of fluid in my lungs. (sounded like bubbling water when I would breathe) It was the only side effect I got from the IL-2. The only one. :/ So they stopped me at the 7. I was a little dissapointed about that. I had my mind set at another 14.

Anyway, at that point I was neutropenic and they spent the rest of the time getting my lungs back to normal, growing bone marrow, keeping fevers down, infections controlled, getting my immune system back and my white blood numbers back to normal. Which they seemed pretty impressed to see came back at an amazingly fast rate. I was actually able to come home 5 days sooner then expected. They actually released me the day Brenda got there.. :/ But because her plane ticket wasn't for 4 days, we had to stay in town for a few days. Then we came home. And here I am now. Sitting in my living room next to Brenda and our first Christmas tree. :) Relaxing. it's weird how laying in a hopsital bed for 2 1/2 weeks can take so much out of you. I did lose some hair, it's kinda thin, everywhere. I buzzed it off and can't really tell if it's coming or going, my eyebrows and eyelashes are pretty snug, if you didn't know me or what was going on you wouldn't even notice. They said my hair will come back soon since the chemo is just a one time thing, but that's the least of more worries at this point. Now just hoping and praying for the best. I go back on Mid-January and once a month for 6 months from what I understand to get scans and see if this stuff is helping me. I hope it does. I feel fine and optimistic and almost every moment of every day I'm in good, happy, normal spirits. On a scale of 1-10, I'm an unabashed 8.9.. But you know, sometimes I'll get a random ache or pain somewhere which is probably nothing, but paranoia will mess with my state of mind and remind me of the seriousness of the situation. :/  But I'm really pretty good. I have this week to relax and get my energy back and on Christmas, Brenda and I are going to drive up to Palm Springs/Indio CA where we'll spend the day with my aunt, uncle, my two cousins and their wife and husband, which will be really nice. They're a group of people who've been the most closely supportive and helpful through all of this and it'll be great to see them. Then next week I'm going to try and pick up some shifts at work and get back into the normal routine of things. And that's it. Just continue to manifest/hope/pray for a positive result...  :)

I hope everyone on here is doing well. It's good to be back. Merry Happy Christmas Holidays to everyone. And here's to happy healthy New Year to all of us. Cheers.


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Carmon in NM's picture
Replies 6
Last reply 12/21/2010 - 10:05am

I'm on a carbplatin/carbotaxil, temodar phase II trial after advancing to stage IV with brain mets and an adrenal tumor last summer. After two infusions 28 days apart the full body CT scan and brain MRI done on the 15th show no new tumors and the adrenal tumor has shrunk by more than 50%! A spot on my left lung that my onc does not think is a met had also shrunk from 9mm to 6mm so whatever it is, it's getting smaller too.

This is so fantastic! I was having a rough time with side effects but I went into today's infusion with a whole new attitude! My blood work was all really stong with no indications I am having problems with the protocol so after this third infusion, I will have three more every 28 days and at the end, surgery to remove the adrenal gland.

I hope everyone else is blessed with good news for Christmas! Carmon

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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Jan in OC's picture
Replies 24
Last reply 3/4/2011 - 1:24pm

Just got back from UCLA with my husband.  Results of his latest CT were not good.  Some of his mets in his liver/lungs have doubled in size and small ones that were not even measured before are a lot bigger.   Doc immediately pulled him from BRAF.  We had almost a year on this drug, but it's time to move on!  Doc gave us some future options, but seemed to be pushing for option 1 over the others and I would like some advice. 

Option 1-Eisai clinical trial of E-7080 (VEGF)  supposed to shrink the blood vessels to the cancer cells???   We cannot do this if we choose any other treatment option before this one. BUT, I have not seen a lot about this on the board and am asking if anyone has experience/info?

Option 2- Compassionate IPI Trial

Option 3- Chemo

Option 4-IL-2

Option 5-MEK / PI3K inhibitor (doc said phase 1 trial, low doses only, may not be effective). 

We are supposed to go back  first week of January with a new plan, so any suggestions/advice would be appreciated.  My husband is pretty bummed right now and my emotions are all over the place!  Getting as much info as I can and having a plan will help.




laughter is the best medicine

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Anonymous's picture
Replies 3
Last reply 12/25/2010 - 9:31am

I would like to know how bone mets are detected???? Is there a special scan??? How are bone mets detected?

Thanks You for your reply, Douglas (wife Julie stage 4)

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Rea's picture
Replies 1
Last reply 12/20/2010 - 8:53pm
Replies by: emilypen

Hi everyone,

My husband has a bone met on near his knee tibia area.  They are suggesting radiation.  Any one have experience with this?

He's Stage IV and has been battling going on 9 years.  It keeps coming back, but within the lasts year it's become more persistent.  Any info you can give will be appreciated.


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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.



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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!


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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 6  years NED Completed 1 year interferon 2009.  God is Good.

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

Best regards


Jimmy B


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

Luke 1:37

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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 "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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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

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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

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