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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adgesoph's picture
Replies 10
Last reply 5/6/2011 - 8:49pm

 

I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

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I just wanted to share that after a year of battling melanoma my dad has gone to be with the Lord.  Things went down hill quickly after not responding to IL-2, and braf and then b-raf for brain mets. We were hoping to give ipi a try but there just wasn't time. He fought to the very end and so badly wanted to beat this horrible disease.  His father and sister also battled melanoma and passed away.  

I wanted to say thank you for this forum and the knowledge and information you all share.  I admire all those that are fighting melanoma and hope and pray that a cure can be found.  Continue to fight and never lose hope.

My dad will be missed tremendously by many but we know that melanoma know longer has a hold of him.  

Here is my blog where I pay a little tribute to him if you're interested:

http://wwwourunexpectedjourney.blogspot.com/2011/05/forever-in-our-heart...

Thanks again for all you do and stay strong!!!

 

Adrienne

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Shelby - MRF's picture
Replies 1
Last reply 5/11/2011 - 6:02pm
Replies by: Gene_S

The MRF has partnered with the Melanoma International Foundation to offer a free webinar to patients on Thursday, May 12, 2011 from 7-8:30pm EDT.  Please join Dr. Antoni Ribas to learn about The Changing Landscape of Melanoma Therapies.  Dr. Ribas, from UCLA, is a two-time MRF research grant awardee, once in 2006 and again in 2011.  To register for the webinar, please use the following link:

 https://www1.gotomeeting.com/register/269280121 

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Carmon in NM's picture
Replies 2
Last reply 5/5/2011 - 3:08pm

It's been a long time since I had any fear or anxiety about seeing doctors so I was very surprised when I had a full blown anxiety attack yesterday about today's appts to see a neurologist and radiology oncologist to discuss whole brain radiation and radiation therapy at the adrenal tumor site. I ended up taking xanax for the first time in nearly two years.

I think what set me off was that I never expected to be NED again. I figured the best I could hope for was stable disease and that treatment decisions would be as easy as just continuing to move forward. Now here I am adjusting to having no measurable disease after a year of brain surgery, gamma knife surgery and chemo in a clinical drug trial so suddenly I have a whole lot to lose again. I'm just sharing this so that newer folks to this disease will know that all of us have our ups and downs, even after you've gotten the incredible news of being NED!

After my onc suggested WBR and radiation therapy as a prophylactic treatment, I dove back into the information stream and my husband and I have agreed to hold WBR as a last resort only. I have had no met activity in my brain for a year now so it makes no sense to us to take the risks of WBR as a preventative when there may be nothing to prevent. Plus, if I have active cells somewhere else in my body that later on migrate to my brain and throw a party again, then I would have lost that WBR option. So we are sticking to regular scans and hoping that if anything turns up, we can use gamma knife again to treat it.

I'm on the fence about radiation therapy to the adrenal tumor site though. It makes sense to me to do a prophylacic treatment there to make sure no stray cells are still living after chemo but I'm concerned about the affects to my body since the radiation would be happening in an organ intense area. So hopefully after today I'll have enough information to make that decision as well.

And just so you know, today I woke up happy, confident and with my sense of humor back intact again!

Carmon in NM - Stage IIIb 9/2008, Stage IV 5/2010 with brain and adrenal mets (craniotomy, gamma knife, clinical trial with carboplatin, paclitaxel, temodar) NED since 4/13/2011

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Nebr78's picture
Replies 1
Last reply 5/5/2011 - 7:47am
Replies by: Vermont_Donna

i had strong doses of radiation on the side of my face and a lump on my chest.  Both lums are almost gone.  That has been 3-4 months ago.

I am now almost an invalid. I am weak all the time. 24/7.And I mean really weak.  At times my whole body will tingle and feel like it is numb.  My ankles tingle all the time.  I walk with a cane.  If the whole body isn't tingling, the weakness is from waist down.  I can't do anything.

 

Has anyone had this sort of side effect from radiation.  The Dr. said the 17-18 treatments were very strong.. I had golf ball size lumps.

Of course I am stage iv melanoma.

Doctors seem baffled.

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My wife was diagnosed with a 4mm melanoma on her neck in October 2010. She was misdiagnosed in 2005.  Can anyone tell me about the long term side effects of Intron A?

 

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thebunches's picture
Replies 2
Last reply 5/4/2011 - 9:07pm
Replies by: Janner, thebunches

My husband's initial biopsy path report is below... how can his Clark Level be VI but also have a Path Stage of T1a? What does this mean? (We have our first appt with the surg onco doc on Monday, and getting through this weekend is not going to be easy.)

______________________________________________________________

Malignant Melanoma

Thickness: 1.0 mm

Clark's Level: IV

Growth Phase: Vertical

Ulceration: Not Identified

Mitotic Rate: <1/mm2

Angiolymphatic Invasion: Not Identified

Features of Regression: Not Identified

Lymphocytic Host Response: Non-Brisk

Pathologic Stage: T1a

Microscopic:

Atypical Melanocytes are present within the epidermis and the papillary and reticular dermis. There is confluent melanocytic proliferation at the dejunction. Atypical spindle melanocytic proliferation is seen within deep dermis along with fibroplasia. Speail immunohistochemical stains melan A and S-100 helps to identify melanocytes and outline their distribution. Melana stain demonstrates pagetoid proliferation of melanocytes. Multiple levels are examined.

Comment:

The lesion extends to the base of the specimen. Reexcision for clear margins is recommended. 

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CLPrice31's picture
Replies 7
Last reply 5/5/2011 - 5:41pm

I am not sure if you all have seen this. It was brought to my attention on Facebook from another melanoma warrior. I posted it on my blog, on facebook, and thought you all would love to see it as well. One of the beautiful ladies in the video emailed me today and thanked me for sharing the video with others. I believe I can speak for all Melanoma Warriors in thanking her for making this. It is EXACTLY what we need to promote melanoma awareness!

http://www.youtube.com/watch?v=_4jgUcxMezM&feature=share

 

Share it. :-)

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/4/2011 - 7:34pm
Replies by: Anonymous, Rocco

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2011 - 9:46pm
Replies by: Vermont_Donna

I just came back from attending the Stowe (VT) Weekend of Hope - now in its 11th year.  This was my first time attending. What a great event!  Held the first weekend in May each year, the weekend offers the chance for cancer survivors and their families to convene in the beautiful and welcoming town of Stowe, Vermont for 3 days of activities - or just relaxation.  As a first time attendee I was eligible for and received free accomodations in Stowe  - and the actual conference was free.  Organizers noted that the Inns and Hotels around Stowe donated some $90K in accomodations to this year's event for first time attendees!  The online registration process and follow up phone call to register for the accomodations was painless.

There were over 410 survivors registered this year representing over 16 types of cancer.  While the color pink was out in force, I never found it overpowering.   Survivors were able to find common ground pretty easy regardless of their diagnosis. (Say 'steroids', 'chemo', or 'health insurance' to anyone and there was an instance bond/discussion).  The conference like atmosphere offered a number of sessions regarding specific cancers with discussions by doctors,  to more broad topics of interest to many - relaxation/self-hypnosis,  what's next after cancer, etc  offered by patient survivors turned advocates or other types of specialists.  I chose to attend many of the sessions and still had some time for R&R.   While most attendees were from New England, NY, PA, there were some from across the US.  There were many returning attendees who mark their calendars each year to come and bond with other survivors and/or reconnect with their families in Stowe.   I will be one of them for the 2012 event!

For info on this year's event:  http://stowehope.org/ 

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boot2aboot's picture
Replies 13
Last reply 5/5/2011 - 12:41pm

I am curious to find out if anyone else got an initial diagnosis of IIIC? what treatments did you start? how were the results?

don't back up, don't back down

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/3/2011 - 9:19pm
Replies by: Jackie W, Anonymous

I have been reading profiles and was wondering why so many people have different stages between diagnosis and current stage? Is it that you are incorrectly diagnosed at the beginning or is it that your disease advance?

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dawn dion's picture
Replies 5
Last reply 5/5/2011 - 4:26am

Okay I know I asked this earlier in a reply to msmarilyn but I thought I would post this question out right because I am really curious.   I get a lot of joint pain and muscle fatigue, mostly  if I do a lot of walking .  I will feel if for days afterwards all through the bottom of my hips, thighs and calves.   This is not something that would have happened before so obviously it is from the drugs but I was curious if anyone else was having these issues and if so what has been done about them.   I  don't intend to slow down because I have two kids and I will continue to do all I can with them so I need a game plan,  Sunday I got to the point of being so sore I had a hard time walking. (really pissed me off)  My DR. asked me if it was interfering with my life when I was there last week and at that point I really kind of blew it off, because I am far from a whiner and will put up with a lot, but I am beginning to think that it could.

Anybody out there got any suggestions - I am open to any and all.

Thanks for the insight

Hugs and Smiles

Dawn

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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beatricefromPARIS's picture
Replies 3
Last reply 5/4/2011 - 6:15am

Hi all,

Had 4th ipi injection a week ago

so far, it's a walk!

no adverse reaction apart from fatigue and occasionnal mumbling of the tummy

can't tell yet if response because tumors are all inside, not visible

last blood count indicates depleted red cells but that was due to previous treatments and new one :higher than normal eosinophil count. No idea what that means...Any info ?

 

Beatrice stage IV

 

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My husband got the phone call from the dermatologist this morning... the area that was biopsied from his abdomen is melanoma. "Leaning more toward Stage IV", the dermatologist said.

My husband is a hypochondriac. He blows things way out of proportion. So I called the derm office myself to find out exactly what they said. They've referred us to a surgical oncologist (best one in the area, they said). SurgOnc will be calling us in 1-2 days to schedule consult.

I am NOT a hypochondriac. I typically down-play things, ESPECIALLY because he gets so worked up about EVERYTHING. But this has me quite concerned.

My husband's melanoma is just (so far) in the one spot... from what we understand. I have so many questions... is he going to die? He's only 38 years old. I thought melanoma deaths were mostly related to older people, like in their 70's and 80's? My grandfather had multiple melanomas, but he also had other severe health problems, including dementia, Parkinson's, etc. I thought he died of ALL those things combined. Even so, if he did die of the melanoma, he lived until he was 75.

Am I going crazy here!?!?! We just had a little girl. She's not even 2 years old yet. I'm only 29 and my husband could be DYING?!?! We have two teenage daughters as well...whom we haven't told yet (we're still reeling from the news this morning). I don't know what to do! I'm just praying & trying to entrust all of this to God. We have no answers until we meet with the SurgOnc.

Any help anyone can provide would be MUCH appreciated. Thank you.

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