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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Suzan AB's picture
Replies 3
Last reply 11/16/2010 - 8:12am
Replies by: Suzan AB, Dynasysman, Fen

Waiting sure does suck the big one.  I believe it is one of the major stressors for me, the not knowing...Here's the deal.  Waiting for confirmation that the nodes or I should say tumors in my right lung have doubled in size and  had uptake are melanoma (please tell me it was a mistake).  Seeing Dr. Daud next tuesday for options.  I was hoping to hear from someone yesterday, but alas the PET scan disc was sitting on someone's desk.  UGH!  I was hoping to get whatever out before Dec. 1 when my deductible goes up to the astronomical amount of $10,000.00.  yes, you read that right. 

Going though loads of emotions at the moment...

Suzan AB

Stage IV

Presently...One Day At A Time.

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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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Wendi Lynn's picture
Replies 10
Last reply 11/15/2010 - 6:23pm
Replies by: Anonymous, LBN, Napa K, Wendi Lynn, Jan in OC, Kim K, Fen

Hi All!

I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me.  The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski.  Has anyone worked with any of these doctors?  I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything.   Just wondering if anyone has experience with these doctors....

Thanks in advance!

Wendi

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

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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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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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Charlie S's picture
Replies 11
Last reply 11/14/2010 - 6:18pm

Almost to this minute, four years ago is when my ear on your chest  heard your last and final physical heartbeat ..

Wherever you are, the beat goes on.

Smooch.

Charlie S

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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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Tim--MRF's picture
Replies 14
Last reply 11/14/2010 - 2:21pm
Replies by: Jan in OC, Anonymous, Suzan AB, glewis923, sharmon, King

This drug has had a lot of press over the past several months, based on strong results from a small, early trial.  Today the data for larger trial were released, and here are the key points: 

--this drug is used only for melanoma patients who have mutated BRAF, about half of all melanoma patients

--about 53% of people who receive this drug have a response to the drug (vs. 14% for IL-2, for example)

--average duration of response is between 6 and 7 months

I learned today that the company is moving forward with an expanded access, or compassionate use program.  And here is the news:  they anticipate having this program open by the end of 2011.

This is much faster than I thought would happen, and is good news for people interested in having access to this drug.

I will know more as this develops, and will try to keep everyone updated.

 

Tim--MRF

 

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BarbieGirl's picture
Replies 12
Last reply 11/14/2010 - 9:43am

Glenda.  A dear friend.  A fun person.  A true warrior.  One helluva classy lady.   I've missed her every single day, since she left us 4 years ago.  She's been joined by so many others in the last 4 years, I can't even count them all.  I know she's keeping them amused and up-to-date on the goings-on in Heaven! 

I love you my sweet, sweet Glenda.  I know I'll see you again someday....

~Lisa~

 

The first 4 pictures are how I want to remember Glenda.  Please STOP there, unless you want to see the harsh and ugly reality of melasuckanoma.  I took and posted the last pictures at her request..   I didn't identify her in the pictures, but SHE did.   She helped sooo many people here for many years, and even when she was dying, she wanted to help those who were always asking what Sub-Q's were.  Sub-Q's come in all forms, shapes, sizes, and colors.  Glenda's were the worst I've ever seen, and it makes me cry to even post them now.  But I know Glenda wanted people to see and understand how this horrible beast can kill in the form of Sub-Q's.  When I last spoke with Glenda, she told me her organs were clear---it was the Sub-Q's that were killing her---choking off her organs.  Very brave; God bless her soul for sharing with us.  Again, WARNING---these pictures are NOT for the feint of heart.

 

Glenda and "Grumpy" (Dave)...her hubby who joined the angels not too long before Glenda, at the Biltmore in Asheville:

 

Glenda grabbing DT's bootay at the Asheville MPIP Bash:

 

The 'smoking area' at the Michigan MPIP Bash---Glenda, my MamaG, Tim (King's hubby), me and Cigar Bob (Dian in Spokane's hubby):

 

Lady in Red----the last time I saw Glenda, just a couple of months before she passed.  She went to the restroom and came out looking like this..haha!  Still made people laugh even when she knew she didn't have long:

 

WARNING:  VERY GRAPHIC PICTURES BELOW!!!!

 

 

 

 

 

 

 

 

 

 

Sub-Q's on her arms: (NO, that is not her breast.)

 

And on her shoulder, neck, ears.....

 

 

These were HUGE on her stomach... football-sized and just hundreds all together:

 

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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Justme's picture
Replies 7
Last reply 11/13/2010 - 10:26pm

Hi,

Background information, brother dx with melanoma from area on finger that was left untreated and undiagnosed for 9 months.  Had PET scan in June which lit up lymph nodes under same arm as finger and.  Finger was amputated, lymph nodes removed, one of 22 found positive, size 4.5 cm.  Very few of the nodes had normal color.

 CT scan  May 2010 showed few pulmonary nodules two in right lung one being 6mm and the other 5mm. maybe one in left lung.  Third nodule in pelvic area 6mm soft tissue.              

 

PET Scan lit up nodes in axillary area and the finger area. No nodes lit up in lungs in pet scan but saw nodules....may 2010

In July 2010 nothing lit up on Pet scan or any nodules seen. 

September of 2010 Began treatment of intefuron instead of interluekin as lungs were negative.  Is now on the self injections.

Last week had another CT scan which showed significant growth of lung nodules and increase in amounts.  One physician has told them that the PET Scan is more accurate, the physician they spoke with said today that the CT scan is more accurate than the PET when it comes to the lungs. 

Ideas, suggestions, questions,  Help Please?

Just me

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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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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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