MPIP: Melanoma Patients Information Page

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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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Love_Monkey's picture
Replies 2
Last reply 9/3/2010 - 8:55am
Replies by: Love_Monkey

Hi all!  I'm hoping for some ideas and thought this would be a good place to turn.  I am starting a new project to help other parent's who have children that have been diagnosed with melanoma.  We found out Rachael has stage III when she was 5.  She's doing great now and is 11 month NED.  Yay!

There is SO MUCH information for adults but a virtual void of info for children.  I'm going to try to bring what little info we have to one place (I'll have a link to here of course!), answer some FAQ's along the way and most importantly CONNECT people to other parents.  Very exciting!

Please follow the link to my blog to help me come up with a name for my new project.  I'm going to be giving out a cool prize to the winner!  (Hint:  Coolibar)

http://iloveyoumorethanmost.blogspot.com/2010/08/next-step.html

Thanks for your help!!

Danielle

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Linda J's picture
Replies 4
Last reply 9/2/2010 - 11:13pm
Replies by: BethA in VA, JenM, ValinMtl

I'm really nervous.  So far all I know is that I have a lump under the skin and in the lymph nodes.  I'm also starting radiation tomorrow to take care of the large lump before they remove it - they want to "sterilize" the surrounding tissue so the surgery won't have to be as extensive. 

I'm ready to fight this stupid cancer - I've spent the last two weeks in mental hell waiting for the fight to begin. 

It is mostly the success that others have experienced in their battle that helps me keep going. 

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Jackie W's picture
Replies 1
Last reply 9/2/2010 - 10:01pm
Replies by: dian in spokane

The September issue of MD Anderson's Cancerwise magazine is on pediatric melanoma.  It can be accessed on line.

 

Jackie W

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vickirs's picture
Replies 3
Last reply 9/2/2010 - 9:40pm
Replies by: Rocklove, vickirs

I am on this trial now.  Have had 4 treatments.  Has anybody else been on this trial.  How has it worked for you

melanoma is a word...not a sentence

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tricialeigh44's picture
Replies 2
Last reply 9/2/2010 - 8:04pm
Replies by: SandraDee, lhaley

So today my mom and I were waiting to see her oncologist to tell if she was approved for the Interleuken 2 therapy. There was quite a few people in the waiting room, but one couple overheard us talking about going to Buffalo. Bob and Karen were their names. We found out that Bob was diagnosed with melanoma 2.5 years ago and last September it had spread to his lungs. He has since gone through 2 cycles of interleuken and we were informed by our oncologist (with their permission) that he is NED!!!!

We are now waiting for the call to go to Roswell Park and are praying for the same results. It was really helpful for my mom to meet someone who has the same disease and who has gone through the same therapy that she will be having. She has a very positive outlook and so do I. For the first time, we got good news...no tumors in her brain, no trace of tumors anywhere except her lungs, passed the stress test and pulmonary function tests, so off to Roswell Park we go!

I told Karen and Bob about this website, so if they are on here....congratulations and thank you for sharing your story with us.

Tricia

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lizyli2000's picture
Replies 2
Last reply 9/2/2010 - 7:31pm
Replies by: Janner, patobs01

Hi there,

I haven't posted on the site for a couple of months now...just to give a quick run down... I was diagnosed in March 2010, with Stage 1 melanoma, 0.32mm, 0 mitosis, on my left forearm. I had my WLE done about two weeks after dianosis and all has been well so far. I have had my slides read by two different pathologists just to be on the safe side and they have both verified the Breslow Depth as well as the clear margins on my WLE. I recently moved to Boston and just went for my 3 month check up at Mass General in the Pigment Leson Center...this is where this question arised for the first time...

The dr. that I saw was very suprised my the margins on my wle inison...he said the margins looked small and didn't fit the guidelines. He stated that all the reports came back as clear margins (again, they were read by 3 different pathologist) however he doesn't feel like the margins are big enough and is suggesting that I get my WLE redone. He stated that it was completely up to me...he would be shocked if there melnoma residue however, it could always happen. He requested to take a look at my post op report to see exactly how much skin was really excised because skin shrinks once it's removed. Well, guess what....it doesn't state the amount taken, just whatever is on the pathology report is what we have to go by, which are 3 x 1 x 0.7cm.

I was finally starting to feel okay and starting to move on from thinking about melanoma all day. I really appreciate any feedback. Thanks so much.

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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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