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.

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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.

-Kevin

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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.

 

Janis

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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!

Thanks!

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

.http://www.eventbrite.com/event/1085814701/?invite=&err=29&referrer=&discount=&affiliate=&eventpassword=

Insert Generic Inspirational Motto Here

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

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molly's picture
Replies 9
Last reply 12/21/2010 - 1:54pm

Thinking of both of you and hoping Eric is comfortable and you have been able to work through  some of the challenges you have been facing.

molly

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mimi0201's picture
Replies 6
Last reply 12/21/2010 - 10:22am

My husband has returned home from 7 days in the hospital after receiving 8 bags of IL-2.  We could use some reassurance that the numerous side effects will ease.  He's experienced most of the anticipated effects, with some extras.     He's pretty unresponsive, so it's had to judge what might be his biggest complication.  Kidney function is impaired, but lasix is helping with that.  I'm feeling kind of cast adrift, and could use some encouragement from IL-2 veterans.  Thanks.

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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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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

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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.

Thanks.
Rea

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

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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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dian in spokane's picture
Replies 12
Last reply 12/19/2010 - 10:56pm

hey.. I would normally think of this as an OFF TOPIC topic, but..the chat room is on topic for some and off for others.

It doesn't get much use anymore, but that's just because of the changes that have gone on with the boards.

But, I see there are hundreds of visitors right now and '10 members' . If I am right, only members can log into the chat room these days, but still, those who are logged in as members can pop in at any time.

Usually, people don't use the chat room here because the see no one listed. There's a spot on the left side of the board that says something like "who's chatting?" that shows a list of people in the chat room, and if no one is in there, then no one comes in. why bother? BUT.. after many years here (I've been coming since 2003) I know that if one goes into the chat room and hangs out there, then new people see your name and come on in (well.. if they are LOGGED IN!)

It is a little used resource with the new boards. But that's a shame, because over the years, the chat room has been a WONDERFUL resource for many people. I've spent many hours there, hours when I was stressed out worrying about scan results, or during treatment. I've chatted with people who were on their computers in their hospital rooms! And I have talked to others from my hospital bed.

It can be very rewarding, being there to talk to someone who is new and scared, and it can be very comforting to chat with others who know how you feel on those nights when you are just ...obsessing and worrying.

I'd like to see people using it more, so that's why I am bringing it up on the main board.

Over the years, there have been different people who just..stuck with it, and hung out in that room, even if they were all alone, for hours at a time. When I first came it was Lynn from Oz..and Charlie and Barth. But many people have done it over the years. Sometimes, there are many of us in there horsing around, and sometimes it's just jokes and celebrity gossip, and sometimes it's someone who is having to figure out how to say goodbye to their kids. But..there's always been someone who did it for weeks at a time. JerryFromFauq was our last guy to hang out there for hours at a time, before his horrible horse accident. And a year, it was Mykka, and before that Barth. Lots of times, these guys just forgot to log off! and you'd go in to talk and they wouldn't even be 'present', but their ghosts would bring people in, and others would come.

I used to do it. Just hang out there for hours while I watched tv or did other things in the evening, but now I travel too much. So hey..you regulars..come chat. Just, log in, go to the chat room, then, if you are alone, minimize that window and open another to read the board. Stay logged on while you read the boards. If no one comes in by the time you finish, then just..check on out. It helps for newcomers to see someone's name in that chat window.

My public service topic of the day.

 

dian

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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/

 

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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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