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 11
Last reply 8/30/2010 - 10:01pm

I'm leaving in about 15 minutes to start IL-2 for the first time. I'll be gone for about a week. Please send some positive thoughts, prayers, or anything my way, I need all the help I can get. See you all in a week. (fingers crossed) :)

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BGL530830's picture
Replies 8
Last reply 8/31/2010 - 9:28pm

Husband had first dose on june 18, so it has been about 10 and a half weeks since then.  A few days ago he started having uncontrolled bms.  Prior to this he was always constipated, so we were kind of shocked.  His liver enzymes are also elevated.  He does have some disease in the liver.  He had a chest ct a couple weeks back due to fluid in the lungs and that also showed all the disease in his chest was stable, which was great news.  it just seems like in the past week his health has deteriorated quickly...  there are more bumps on his head and i even noticed a lump in his shoulder and side.  is it even possible that this is all from the ipi working or should i prepare myself for sad news?  his full body ct is tomorrow or tues and we get results the next day. 

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ErikaHouston2's picture
Replies 2
Last reply 8/30/2010 - 12:38pm
Replies by: Jim in Denver, PhyllisP

How long does it usually take you to get your results? Had PET CT on Friday @ 1pm .

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Bill G's picture
Replies 5
Last reply 8/30/2010 - 10:18am

At outset given odds 25% for  5year survival, because location on top of head 4mm+ tumor and numerous satellites

Bill G

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lovingwifedeb's picture
Replies 4
Last reply 9/1/2010 - 12:01am

I feel it most strongly after work as I am driving home in traffic when it’s quiet in the car, when I’m alone. This is when I have the most time to think about the last 6 weeks and what it means for my husband and I, and our future together. The tears are falling gently on my face as I drive home as I remember saying the words “for better or worse, for richer for poorer… in sickness and in health, I do”, when we got married 8 years ago. Yes, I realize this disease affects my husband most of all, but my heart is filling with an unknown fear that not one single person wants to talk about. I’m having a melt down, it has taken 6 weeks since I was given the news…

 

By the time I get home it’s time to water my plants, they have spent all day in the hot sun. They are thriving in the summer sun, I lift my face to feel its warmth and so it can lift my spirit. The sun, it gives life to my garden, my beautiful flowers and my red tomatoes. Why is it such a powerful gift and yet at the same time it can turn into such misery for my husband's health and for others? Why is it turning our lives upside down? Why now?

 

The more I learn about melanoma the more I worry about it and the harder it is to control my emotions. Doctor appointments, treatment options, (or lack of for Bob right now at stage 3), information overload (everyone has an opionion), family concerns, and husband’s health recuperation after surgery, work stress, and personal concerns for our future.

 

My heart is aching in unfamiliar places. The bottom line is I’m a control freak and this is definitely out of my control. I can’t walk in my husband’s shoes but I will try my best to walk right there beside him and be there for whatever decisions he makes for his treatments and what ever comes into our future. After that I am going to have to let this all go. (Easier said than done, I know…)

 

So, from this day forward I take each day as it comes, 24 hours at a time… IN HOPE, IN LOVE, IN GRACE. (breath in, breath out, breath in, breath out...)

 

From the perspective of the caregiver,

Deb

 

If you would like to leave Bob a message please send one here:

bob.rogers2010@gmail.com

 

If you would like to follow our family blog:

http://redesign08.blogspot.com/

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newmanmark's picture
Replies 3
Last reply 9/18/2011 - 4:46pm

Hello Everyone,

Its been a long time since I have posted on this website.  To be honest it wasn't easy for me to come on this site and read all of the various stories.  I'm still not sure it helps 100% of the time but I miss everyone I use to correspond with.  I aplogise for not posting more often.  I am now 4 months into my interferon treatment.  Its been tough but tolerable.  Nothing new has been discovered and I'm approaching a year from my diagnosis day!  I couldn't have done this without my friends and family by my side. 

The main reason I am writing is because I have recently been suffering from anxiety and I believe its because of the Interferon.  Did anyone else experience this?  If so I'd love to know how you treated it.  I'm currently on Cipralex but that doesn't seem to be helping.  It helps with the depression but not my anxiety.  Is there something natural that could help?  I'm not opposed to pharmaceuticals but I'd love to try a natural remedy first.

All my love

Mark

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There's an update on Jerry on the otbb.  He is making progress.

 

Jackie W

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MonicaD's picture
Replies 49
Last reply 8/25/2012 - 2:43pm

Hi.  My name is Monica.  I'm 33 and was diagnosed on July 13th of this year with malignant melanoma from a mole that was removed from my lower leg.  Last week I had a sentinel node biopsy and am now awaiting results from that to see where we go from here.  The waiting since the initial diagnosis to now has been unbearable and I have another 3-4 weeks to wait for results.  I just need a game plan.  So far I have found this disease much more scary and tiring from a psychological perspective than a physical one.  I feel fine.  My blood work came back fine.  My lung x-ray came back clear.  I read a copy of my histology report and comparing it to what I've read online, I think at best I'll be Stage IIb since my mole was ulcerated but I have to wait for my node biopsy results to know if it's even a worse stage than that.  What I've found hard in my online searches is that there's really not much out there as testimonials of people who have gone through this journey with melanoma and survived.  I find myself yearning to hear people's stories but I'm having a hard time finding any which I find scary.  So, my question is, have you gone through this and how are you now?  I just want to hear that this can be beaten, even if only beaten a little at a time each time it's beaten.  I know if I survive that this disease is about being diligent and watching your moles, etc., and I know recurrences can and likely will happen, but still... can I beat it?  Have you beaten it?  I just want to hear something positive.  Nobody will tell me anything positive and I'm finding that that is just feeding into the fear that already exists inside of me.  I'm trying to stay positive and mostly I think I'm doing a good job of it but I admit I need help with it sometimes.  I don't need someone to tell me it's all going to be ok because I know there's a chance it won't be but I just want some positive stories I can store in my mind so that when I do feel scared I will have a tool to beat down the negative thoughts and keep hope alive within me.  Thanks. 

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Lori C's picture
Replies 9
Last reply 8/31/2010 - 9:40pm

Tomorrow I take  Will to Rush to have scans - the first since he started this treatment.  He's had two rounds of chemo.  I know all of you know exactly how I feel, so I won't bother going into the gruesome descriptions : (   We are staying overnight near the hospital, at Will's request, and then going back Tuesday to have the scans read, and God willing, more chemo.

I've gone through such a gamut of feelings, most of which amounted to trying to read tea leaves or entrails to figure out what might be going on inside him as a result of the chemo, and finally gave up.  It is out of my hands.  I am just trying to stay hopeful and pray, and ask that anyone so inclined would do the same for Will.   I need to stay strong for him but am finding it extremely hard right now.  I have to get to work tomorrow at 2 a.m. in order to be done in time to get him to the city, and it is going to be a very very long two days.

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esposir2's picture
Replies 0

Hello Has anyone tried this new trial drug

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/31/2010 - 2:15am

You haven't posted in a week which seems untypical of you.

Are you alright?

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himynameiskevin's picture
Replies 19
Last reply 9/29/2010 - 7:18pm

Hello everyone. I had stereotactic radiation done yesterday, hopefully took care of the met in my brain. As for the ones in my lungs, liver, chest and back, I will be starting IL-2 on monday. I'm a little scared, a little nervous, with all the possible side effects, but have got my hopes up for the possible help it may bring. Has anyone here had a positive experience with IL-2? Any recommendations or tips I might benefit from? How about nutrition while on it? I've seen the operationsunshield website, but would appreciate any other opinions or stories. Thank you. Oh and on a lighter note, I got married 2 days ago, she looked beautiful, and we're moving into our own place this weekend. It will be nice to arrive to a new home after the hospital stay. :)

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himynameiskevin's picture
Replies 1
Last reply 8/28/2010 - 10:49am
Replies by: dian in spokane

Hello everyone. Just an update. I had stereotactic radiation done yesterday, hopefully took care of the met in my brain. As for the ones in my lungs, liver, chest and back, I will be starting IL-2 on monday. Scared? Yes, I'm kind of nervous, with all the possible side effects, but have got my hopes up for the possible help it may bring. Has anyone here had a positive experience with IL-2? Any recommendations or tips I might benefit from? How about nutrition while on it? I've seen the operationsunshield website, but would appreciate any other opinions or stories. Thank you. Oh and on a lighter note, I got married 2 days ago, she looked beautiful, and we're moving into our own place this weekend. It will be nice to arrive to a new home after the hospital stay. :)

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I wondered if anybody might know how many treatments of chemotherapy one might require before finding out if it is reducing the size of subcutaneous Mets. I have only had one infusion so far and obviously won't know what effect it is having on the tumours in my organs etc until I've had a scan after my second infusion. However, obviously one can one can see subcutaneous mets and I thought others may have seen some signs of them reducing in size after treatment, but didn't know how long this usually takes. Any information would be appreciated.

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/28/2010 - 8:29am
Replies by: Fen, Janet2

Just wondering if anyone else has encountered these same type of feelings.  Before being diagnosed with Stage 3 Melanoma I moved across the country away from all of my family and friends with my new husband.  Being in a new environment, not feeling quite myself, I have found it so difficult to make friends my age (I'm 29).  I find that many women my age are dealing with such different things like starting their families, etc.  Although I've been NED for a little over a year now, and am finished with my interferon treatments (I did 4 and 1/2 months,) I'm definitely still reeling from everything that I've been through.  Although I believe that I'm quite positive most of the time, I've had a few breakdowns with new friends, and find them running the other way.  Maybe my situation reminds others how fragile life is?  Maybe others don't realize how serious melanoma is and think I'm being a drama queen?  I've never had difficulty making friends before, and now is when I need them the most.  Anyone else experienced anything like this? 

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