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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EricNJill's picture
Replies 3
Last reply 11/15/2010 - 10:58am
Replies by: KatyWI, King, washoegal

United Health Care only paid $8,000 of Eric's Medical Flight bill leaving us over $15,500 to pay ourselves.  The hospital used a company that was not in-network with our insurance.  I didn't know this could happen.  I thought if you were at an in-network hospital then all services used were in-network.  I even asked if the flight was a covered expense and they said yes because it was an emergency, I never imagined they would be out of network!

Does anyone have experience with this?  Thanks, JillNEric In OH

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NicOz's picture
Replies 9
Last reply 11/19/2010 - 12:24am

Love, love and adore my neurosurgeon. Was in hospital for 24 hours, from peri-op to discharge. That beautiful man removed a tumour (unfortunately it had to be done via a new hole in the head, but it's all good) and managed to stabilise my head without a single pin hole :) yay for me! It was termed a "mini-craniotomy". Sounds insignificant... and I like that :D

Of course, it's the worst haircut I've ever had, but eyebrows remained even, so one can't complain too loudly, eh? They sliced the temporalis muscle to get in there, and I HATE that, but it's ok. Getting less sore every day. Most importantly, it seems I am right to roll for G's dance recital in a couple of weeks :D

I had a mixed bag of results this time around. I have had a couple decrease in size, but have a few (3?) new mets, one of which is close to the thalamus and will be back to have SRS on that fairly soon so I'm told. It's causing a little bit of left sided weakness and numbness, but is surely do-able at the moment. Physio told me it is a little weaker than the right side, but still very strong, so that's ok.

They are still pushing full steam ahead to treat me, and as long as they're doing that, I am one very happy camper!

Life is good

xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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Karen wife of Phil's picture
Replies 5
Last reply 11/17/2010 - 2:18pm

My husband and I have been lurking in this community for quite awhile gleaning much needed information and inspiration. He has actually posted a few times but has had trouble recently with passwords...not very technically savvy I'm afraid. Anyway, we need some input on what is happening with him right now.

In Sept. of 2008 he was diagnosed stage IV with MUP. He had a lemon sized tumor in his right lung which has not changed since then. He has had tumors removed from near his lower spine and several from his intestines. On Nov. 4 he finished his final dose of compassionate trial of Ipi. The next day we ended up back at the cancer center for an emergency CT scan because of pain in his stomach. They found a new intussusception  (folding over of the intestine) which in him usually indicates new tumors. The surgeon who also read the CT saw some things on the other side of the abdomen. As is usual with surgeons he wants to cure with the scalpel. We feel this may be the progression of the tumors before the regression. We are thinking if he can deal with the pain, it might be prudent to take a watch and see attitude. Phil has had so many abdominal surgeries that this is the last thing he wants to do. Has anyone else had a pretty severe progression and then a regression? We really would like some input from anyone who has dealt with this. This board has been such a wealth of info...we so appreciate everyone here!

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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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