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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Nancy's picture
Replies 5
Last reply 11/15/2010 - 11:49am

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James from Sydney's picture
Replies 11
Last reply 11/14/2010 - 9:37pm

It seems like yesterday, Michael fought for just over 2 years and its been that long since his passing he was only 20. He made us proud the way he faced this disease, the way he saw life and death, how he spoke about his funeral, how he was more concerned about others than himself.

He was an extraordinary human being having achieved Distinctions at Sydney University in Science whilst doing Interferon for 12 months. He amazed us when he enrolled for year 2 just after his 2nd Craniotomy and whilst on Temador only 3 months before he passed.. My boy you are a Legend.

For all of you in the trenches i wish you to the  fight the fight of your life, don't accept everything the Doctors say to you no matter how qualified they are be pro actve and seek other opinions. To Caregivers especially Parents of young ones affected by Melanoma, listen to your children's opinion and needs it is their fight ask them what they would like you to do. I made some mistakes and acknowledged that, we talked and we parted arm in arm best of friends.

I know that its the Doctors and researchers that will find a Cure one day but it would never be possible without the incredible people both past and present that form this Community at MPIP. 

best wishes

James

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Anonymous's picture
Anonymous
Replies 11
Last reply 11/15/2010 - 12:04pm

I've never been known as shy, but since I am in the hospital and benefiting from the virtues of morphine, I jujust wanted to breech the subject of sex and cancer patients.

'm sure this is taboo, but I could care less..  Part of all of  us wants to be intimate with another, but cancer can get in the way....................but only if you let it..

Even though most posts wil be anon, I think others need the support.

So, is your level of intimacy more or less as a result of melanoma?

Talk about it if you want........................or not,.

 

I think this is an aspect of cancer that needs to be discussed, because I do think it is a deep dark secret of cancer people that is shrouded in darkness.

 

Then again, this post is morphine fueled.

 

CCharlie S.

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AndyD's picture
Replies 5
Last reply 11/16/2010 - 7:09pm

I've been stage 4 for a year or two and started an ipi compassionate-use trial in June that finished in Aug. I'm happy to report that my body responded to the ipi - Yay! cheeky and my last PET scan showed tumor shrinkage in both my lungs and leg. I get scanned every 6 months and the trial will be repeated as necessary if the tumors begin to grow again.

If you've had the ipi trial before, I was wondering how you feel physically and mentally? I felt tired, cranky, and somewhat confused for at least two months after my last influsion. Then I started to feel great (like my old self), but that only lasted a few weeks and now I seem to be regressing again...super tired and crummy feeling angry. I've had my blood work done and my gland levels are all normal (like thyroid). Do you think it takes a long time to get past ipi side-effects? Or is this simply how cancer progression feels? Will I ever feel like this again? smiley

Hope to hear your thoughts.

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MichaelFL's picture
Replies 4
Last reply 11/13/2010 - 9:27pm
Replies by: King, Becky, DebbieH, ValinMtl

Hello James.

I know it is already Sunday morning there in Australia, and I do not know if you will be able to come to the board today, so I just wanted to say that I will say a special toast for you and your son Michael.

As a parent, I also wanted to thank you for all you have done here both during and after, as yours was an event that no parent should have to endure, and for finding the strength to still stay on the board. I can't even begin to imagine how I would respond if it were to happen to me and my family.

"A toast to you" from the other side of the blue marble.

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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Sharon in Reno's picture
Replies 31
Last reply 11/30/2010 - 6:21pm

I'm not sure if I'm doing this right but I promised my sister that I would tell you what happened to her.I'm trying to keep that promise the best that I can..She signed on as Sharon in Reno.She told me that it was your love and support that kept her fighting.I went to stay w/her Aug.28th and she died Sept. 25th.I'm afraid to tell you how it went because there are many of you still fighting and many loved ones still hoping for NED.I will just say she was able to stay at home until 4 days before her death.I'm so thankful for hospice they kept me going and held me up when I thought I couldn't bare another moment.Sharon was 53 years old at her death and I'll be 55 this month.It was because of what we went through together that I now have made many changes in my life.She is at peace now.She left many people behind who are griefing but we are grateful not to watch her suffering any longer that was worse than the pain of not having her to hold anymore.She mostly wanted you to know how important she felt this web site was and thank you for the many times that you comforted her and advised her and gave her a safe,caring place to be when she just needed to "talk" with someone who understood what she was going through.I want to thank you also.Sincerely,Nina

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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washoegal's picture
Replies 8
Last reply 11/17/2010 - 12:51am

First the good news!  I am now 8 months NED!  Yahoo!  Quick review:  Diag Jan. 2010  3.1mm tumor RT , March 2010 SNB 2 nodes microscopic amounts of cancer, complete Lymph Node Dissection.  No other treatment.

My original Onc, who was in Santa Monica California, is now at Yale.  I followed up with the Dept head who is a brilliant man and has written tons of paper on melanoma.  However, he is not the doctor for me.  The nurse came in with the good news, the doctor follows up with  " if you survive melanoma" and starts giving statistics about recurrence rates, etc.  Boy, how to ruin a happy day! 

So...to make a long story short, I don't think this is the guy for me.  If I need someone fighting for me, I'd like someone a little more positive.  Would like some recommendations:  San Francisco, Santa Monica, UCLA area, all OK.  Unfortunately, Nevada has no Melanoma specialists.

Thanks,

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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churchwelldana's picture
Replies 9
Last reply 9/19/2011 - 9:18pm

 

I was recently diagnosed with stage 3 melanoma. I've had a SNB and one of the lymph nodes was positve for cancer. Now they will 
remove all the remaining lymph nodes from my groin. The nurse said the typical recovery time would be 4 weeks. Is that accurate? I'm a fourth grade school teacher and I was wondering when I might feel like returning to work.

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ChristineL's picture
Replies 2
Last reply 11/15/2010 - 5:46pm
Replies by: Jerry from Cape Cod, Anonymous

I've heard about AHCC here and there (mostly there!) and was wondering if anyone would put in their 2 cents as to whether it may be worth it?  Stage IIIb, I figure I may give it a try.  My mel. onc. is skeptical, because she hasn't heard of it.  Thanks for sharing!

ChristineL

Fight like hell

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EricNJill's picture
Replies 2
Last reply 11/13/2010 - 12:59pm
Replies by: Carmon in NM, jolainajo

Eric had the emergency Craniotomy on Saturday, November 6th.  He still has balance issues and just wants to sleep all day.  About 4 days before he had the surgery he started with hiccups around the clock and immediately after the surgery the stopped but now they have started again and I'm worried that maybe he has some swelling in the brain.

Is it normal for him to be very fatigued?  What should I expect?  Also he is scheduled to see someone on Monday for Gamma Knife, what should I expect from that as well.

Thank you guys.  I don't know what I would do without all of you.

JillNEric In OH

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davekarrie's picture
Replies 15
Last reply 11/14/2010 - 2:49pm

My name is Dave, I am very healthy at 36, and I was diagnosed with melanoma yesterday after having what I thought was an innocent large mole removed.  The dr. said it was stage 4, but after reading I am hoping he meant thickness 4.  He said there were 5 stages, but he wasn't too confident.  I am going to meet with a surgeon Thursday and sounds like they want to take a larger area around the mole and test lymph nodes. Very scary for sure, and my world is now upside down.  any info would help.  I will call and get my biopsy report so I can look at thickness etc.

Live life to the fullest and enjoy each day!

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naty's picture
Replies 3
Last reply 11/12/2010 - 10:22pm

I've posted a few questions a wk or so ago.  We finally got the insurance to ok a consult, what do I need to ask/demand for treatment at MD Andersson?  My ftr has brain, lung, spleen, and liver mets.  He finished his WBRT on Monday.  I did ask his current oncologist to test for BRAF and he is positive, but I do not believe any other testing has occurred.   Thanks-I want to make the most of this visit!!!  Get him on a trial and get some quality of life.

Anyone here have surgery for brain mets?  No option given here currently (just in case no response to radiation).  

Thinking for him (IF he qualifies) the PLX4032 study vs IPI.   Or will they be big advocates and informative?  here his dr knows nothing other then WBRT and temedor.  

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dian in spokane's picture
Replies 9
Last reply 11/13/2010 - 9:34pm

For those following my little clinical trial, I figure it's time for an update. I had my 7th shot on Wednesday. They rotate these shots between my two thighs and my right arm, my left arm is a 'no-stick' arm. So far, my most consistant side effect to my vaccine has been a headache, which I did NOT have this time. My site reactions have consistantly gotten worse with each shot, and the reaction on my arm this time was pretty fast and continued to get worse till about this morning, but is much better tonight.

This month's reaction has given me a new empathy for those who suffer from lymphadema. My arm was swollen from shoulder to below my elbow. Last night was fairly painful, with the swelling around my elbow giving me the most problems, making it very difficult to bend my arm without pain. I'm still swollen tonight, but it's not painful anymore, and I think the itching has stopped.

I still feel like the side effects of this trial are very mild, especially when compared with other treatments and trials.

Hard to believe but I only have ONE shot left. I go back for skin tests and shots next month from the 8th the the 10th and then I am done with all of these trips to California. I feel very confident about making it through the trial without any recurrences.

This month it's been 2 yrs since I advanced to stage IV and, needless to say, I am thrilled to still be NED. I was NED for 11 months before starting the vaccine, so I guess there will never be any way to know if my continued good status is a result of the trial, or just my own good luck

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kellie1979's picture
Replies 10
Last reply 11/16/2010 - 7:06am

I posted earlier this week that I had not got my pathology reports back yet from the doctor and was afraid of the unknown.  Well I got the phone call today at work that I do have Melanoma.  They want to schedule for me to have surgery to remove the area on my back, and to have tests done to assure that it hasn't spread.  I am going to go to a different doctor, I called them today and they said once they recieve the pathology from my current doctor then they will call me next week to schedule my surgery.  I still don't know the depth or anything, my doctors office didn't even know.  The pathologist called them and told them that it is Melanoma so that they could call me and let me know before the weekend.  Any advice on how to get through this from here would be great.  I am trying not to worry and hoping that it hasn't spread but every time I look at other moles that have changed recently I just worry more.  The current doctor said I need to have a chest x-ray is this standard procedure after being diagnosed?

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Carrie's picture
Replies 8
Last reply 11/17/2010 - 9:45am

It's been a while since I have posted on here.  Here is a little background on my family...My mom was diagnosed with MM 3 1/2 years ago with four primary melanomas (deepest one had her staged at IIC).  She moved to Stage IIIB after several intransit mets were removed near the site of one of her primaries.  She has been NED for 2 1/2 years and is doing great!  Six months after my mom's originial MM diagnosis, my sister was diagnosed with MM with two primaries.  Fortunately, she is staged at IA.  She has been NED since her diagnosis.  Doctors have suggested there is a good possibility of our family having the familial atypical multiple mole melanoma syndrome.  We have not done genetic testing.

With that being said, I have been closely monitored by my dermatologist twice a year for skin checks.  I have a number of biopsies done with 3-4 moles being mildly to moderately atypical.  I just recently had a mole removed from my upper chest area.  My derm called me today with the results.  That mole was moderately atypical, however, the mole also had some characteristics that melanomas tend to have.  She started telling me what those characteristics were, but she immediately lost me on that.  On Monday, I'm going to get her to fax me a copy of the path report.  The following week, I'm going for a re-excision. 

I was wondering, is this normal?  She said none of my other moles that were atypical had these characteristics.  Should I request to have another pathologist look at the biopsy?  I have always thought that an atypical mole was atypical and melanoma was melanoma.  She has really confused me!  Any advice would be appreciated!

Thanks,

Carrie

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