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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KellieSue's picture
Replies 5
Last reply 9/1/2010 - 10:18pm

I continue to have success with shrinkage after completing 8 week trial of ALT-801.

My latest scans show 2 lymph nodes in the neck and the thyroid still have melanoma but they are significantly smaller and other 2 lymph nodes are gone! :)

They also show advanced necrosis of the tumor in the remaining lymph nodes. As my dr. said this is GOOD NEWS!!!

He has rewritten the protocol and has asked and received permission from NCI to redose me.  Now just waiting on the drug company!

As much as I don't want to go thru 8 more weeks I have to look at the big picture. This wasn't as toxic as IL-2 can be, I had a relatively easy time compared to what that coud be.

8 more weeks of feeling like crap for possibly more years? Totally worth it! Just have to gear up for the rash and headaches and vomiting to come! Yippee!!!!!!!!!!!!!

 

Kellie, Stage IV, stable disease after one round of ALT-801, gearing up for my 2nd

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

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Angela C's picture
Replies 4
Last reply 9/1/2010 - 9:37pm

Hi everyone.

I haven't posted on here in quite some time. No news is good news, right? =)

My primary melanoma was on my forehead. I have had three wide excision surgeries on my forehead since 2007 because it has recurred twice in the same area. My last surgery was September of 2009. I have had a couple of bumps on the edge of the scar line for as long as I can remember since the last surgery. Over the last couple of months, I noticed that every day they seemed different in size. Some days they seemed more swollen than others and they have also had some slight coloration under the skin. They sort of looked blue. The surgeon that performed the surgery has seen them several times but not been worried about them. My oncologist does not like that they seem to be changing, so he orderd a biopsy.

The biopsy was performed today at my plastic surgeon's office. He said that the tissue was grissly, which typically means scar tissue. He said it was a little darker in color though. He said it was a little bluish grey. With all of my biopsies in the past, grey has been melanoma. Pink tissue has been benign. Have any of you had an experience where scar tissue looked colored under the skin? My oncologist thought it was possible that I had stitches that had never dissolved from the prior surgery causing these bumps.

Now I begin the oh so fun waiting game. It's always hurry up and wait isn't it!? Drives me crazy sometimes.  Since there was some color to it, I'm preparing myself for the worst. Sometimes it is easier to expect the worst so that I'm prepared for it. I'm just looking for other people's experiences, thoughts, encouragement. =)

Thanks!!

Be kind, for everyone is fighting a great battle. -Plato

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gpayne68's picture
Replies 2
Last reply 9/1/2010 - 8:53pm
Replies by: melanomafighter, Jim M.

Have not contributed to this board before, but I am a Stage III (7mm, nodal) melanoma survivor diagnosed in January 2010 with WLE, SNB, and LND surgeries shortly thereafter.  Took INF for a month plus three weeks sub-Q but off now for quality-of-life reasons.  All scans are clear but working to get my career put back together (aka unemployed) after this unforseeable disruption to my life.

The reason for this message is to plug an old book called "Man's Search for Meaning" by Victor Frankl.  It is a best-selling book from 50+ years ago that has sold nearly 100 million copies in English.  The book first came to me in my early 20's.  I knew it had important messages for me but, with little context in my own life, the impact was muted.  Cancer has changed all of that.  I re-read Frankl's text recently and it is filled with psychological help for anyone going through a potentially life-ending disease.

So, if you are struggling with the brutle psychological effects of Melanoma, please pick up this easy-to-read book.  You can find a lot of information on Wikipedia regarding Frankl's life.

Geoff - Indiana

Romans 5:2b-5 - …And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us...

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JenM's picture
Replies 6
Last reply 9/1/2010 - 5:34pm

Hi all,

Just wanted to give an update on my status.  So, first a little history:  I was Stage 3b but in April I noticed a tiny black nodule on my left breast and then found another one on the opposite side of the breast.  Went for surgery to remove the second lesion and another black nodule was found underneath.  Everything came back positive for melanoma.  As I was waiting for the results to come back my left breast became very swollen and lumpy.  Went for a breast ultrasound and mammography which picked up at least 4 internal lesions. 

I was deciding btwn. a clinical trial at Sloan Kettering vs. the NIH.  Both required a brain MRI.  I had 2 episodes (a week apart)of a terrible headache and vomiting so my surgeon onc. pushed up my brain MRI and surprise, surprise 3 small lesions were found (4mm, 4mm and 8mm).  My surgeon thinks the headaches and vominting were a coincidence b/c the lesions were to small to be causing symptoms.  Neuro onc told me brain mets in melanoma gave a median survival rate of less then a year but felt with my age and performance status I should surpass this---I better surpass this--have two small children and a whole lot of living to do!!! 

Had Gamma knife on July 8th.  Started chemo June 31st (Cisplantium, Vinblastine, Temodar), started Nexavar/Sorafenib daily July30.  First 2 cycles were not so bad, but as I approached the 3rd cycle I had bad vomiting and dry heaving that would not go away.  I lost at least 10 pounds in 2 weeks.  It was awful.  I went to a very dark place...when you feel that sick you really don't feel like fighting anymore.  I never want to feel like that again.  My doc was a  little perplexed as to why I was vominting because it started during my "good" week.  But I do take the sorafenib everyday so I think it's that.  Got a PET/CT about a week ago and had a nice response to the chemo.  Not exactly a partial response but almost.  The SUV in the left breast was about an 8 before treatment and now it is down to a 3.  Also had a brain MRI in the beginning of August and that was stable...nothing new.  But I was told the next MRI in October will be most indicative of prognosis.

So holding steady for now.  I think my next treatment option will be at the NIH.  But then again, that all depends on what happens.  My doc gave me a paper the NIH recently published which showed some success with their TIL  therapy and brain mets which is encouraging. 

Does anybody know what your chances of brain mets returning once you have had them?  I keep forgetting to ask my docs this question.

Well, that is what is going on with me.  Take care all.

Best wishes,

Jen

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jag's picture
Replies 12
Last reply 9/1/2010 - 3:51pm

Next step, escape from MSKCC.

Insert Generic Inspirational Motto Here

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Lori C's picture
Replies 10
Last reply 9/1/2010 - 2:13pm

Good news.  The cancer, while still significant, is smaller.  There are still too many lesions in the liver to count but the report gave examples of size reduction in many of them, and sclerotic (healing) evidence in his bones.  So the chemo is working.  They gave him another round yesterday, as well as Zometa to strenghten the bones.  Today I have to take him for transfusions (his hemoglobin was low).  I'm exhausted but very pleased.  Given the extent of the liver mets I really wasn't sure that anything would work.  He's continuing on the same chemo for the time being; hopefully it will continue to reduce the lesions and we'll be able to have some other options.

Thank you all for your encouragement and support.  It has been an exhausting few days. 

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Nancy's picture
Replies 1
Last reply 9/1/2010 - 12:39pm
Replies by: Kevin from Atlanta

Buddy has been on Decadron 4 mg QID po (3 x day) for 9 days.  They will not allow him to have his 3rd treatment of IPPI until he is on low dose Decadron, or weined completely.

What is the low dose for Dacadron, and what is the daily amounts usually taken daily to get to low dose form one being on 4mg 3xday?

He actually needs the steroids to help in brain swelling, but he needs to get the IPPI treatment ASAP as Dr. sharfman has stated that IPPI would be his only chance...

Thanks for any replys,

Nancy

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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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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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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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Tim--MRF's picture
Replies 2
Last reply 8/31/2010 - 4:16pm

Her name is Estela Medrano, and she was a scientist at Baylor who focused on melanoma.  I have pasted a synopsis of her work below for those who are interested, but must confess that I have trouble finding it.

There exists a network of dedicated, brilliant scientists who work long hours for not a lot of pay, trying to gain further understanding into what causes melanoma.  These researchers lay the groundwork for all the clinical development that takes place, and every clinical trial had its origin in their work.  Their names will not be on the news, and they will not be interviewed for their view on melanoma.  But without them drugs that are all the rage now--ipi, PLX, etc.--wouldn't exist. 

I have been impressed with the collegiality and cooperation that is evident among this group.  We heard this evening about Estela's untimely death and my inbox is full of people expressing sympathy and a sense of loss.

She did not have melanoma, but she was a melanoma warrior, and the fight is a bit poorer for her passing.

 

Tim--MRF

 

Estela's work at Baylor:

The second project is focused on the role of the protein SKI in melanoma tumor progression. Ski encodes a nuclear protein that binds DNA in association with other proteins and can act as either an activator or repressor of transcription. Using the yeast two-hybrid system, we have demonstrated that SKI physically associates with Smad2 and Smad3, two transcriptional activators that mediate the TGF-beta response. SKI suppresses TGF-beta signaling by binding the MH2 domains of Smad2 and Smad3, and repressing promoters bound by these proteins and the common mediator Smad4. We propose that SKI functions as a potent oncogene in melanoma cells by counteracting the effect of the TGF-beta pathway that usually functions to suppress cellular transformation. We are analyzing additional SKI-protein interactions to determine their contribution to melanoma progression. Also, we have recently cloned the ski promoter to determine, by DNase foot-printing, electrophoretic mobility-band shift assays (EMSA), chromatin immunoprecipitation (ChIP), and reporter analysis, regulatory elements and factors involved in its activation during the malignant transformation of human melanocytes.

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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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I had a mole off at my GP in September and after it came back melanoma I had it a larger excision in November 09. Now I have a small mole in the centre of the scar! EEK!!! Experiences??? Ideas? DO I call my GP, Plastic Surgeon or Dermatologist???

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Linda/Kentucky's picture
Replies 5
Last reply 8/30/2010 - 10:40pm

Just wondering about those of you who have finished the Ipi treatments how has your LDH have been?  My husband is at week 17 and we received his lab work yesterday and it had been going up since taking IL-2 but after his 3rd Ipi infusion his LDH was 1054 and yesterday 5 weeks after final tx.it was 1304 I know this is very high.  Clinical trial nurse said not to worry she has seen this happen before.  Starting to feel really discouraged.  He also found out he was anemic HGB 8.8 so we will try to find out the source of the bleeding could be from taking alot of Ibuprofen but it's the only thing that gives relief from aches.  Again I'm afraid he is not going to be a responder, but......it does take longer sometimes.  His scans showed no new mets but increased size of mets following Ipi treatment. 

P.S. He did get the hair depigmentation and vitiligo after 2nd tx.

 

Linda/Kentucky

husband stage IV

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/30/2010 - 10:08pm
Replies by: Linda/Kentucky, Anonymous, Janner, mkummerle

Hi Everyone,

 

This might be a dumb question but can anyone tell me if bone mets hurt????

I have been having pain along the lower part of my spine. When I touch the bones in my spine in my lower part, the bones do not hurt. However,when I am lying down then get up. I feel pain. Of course, my mind jumps to the worst scenario.

Anyone experince bone mets in the spine or anywhere else, your feedback would be sincerely appreciated.

Thanks you for reading my post & replying.

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