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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Anonymous's picture
Replies 2
Last reply 2/21/2013 - 12:57pm
Replies by: rdd, Janner

A 20 year old loved one very recently got a dark mole and a tiny one the size of a pin right next to it removed from his finger.  The Pathologist Comments are as follows:

There are nested melanocytes at the junction with focal bridging between rete.  Scattered single cells are at the junction and in the mid-epidermis.  Rare melanocytes are in the granular layer.  Junctional melanocytes have enlarged epithelioid nuclei and coarsely pigmented cytoplasm.  One mitosis seen.  Melanophages surround the dermal vessels.  These features are in keeping with a junctional nevus with atypical features on acral skin.  It extends to a peripheral biopsy edge.  Complete excision is recommended.

The specimen was an irregular portion of tan skin measuring 0.7 x 0.4 x 0.1 cm, margins painted blue.  

Can someone please tell me what all this means.  We are very worried.  The nurse (not the doctor) called us and told us it was just an atypical mole they want to remove fully.  When we had gone to see the dermatologist he didn't want to remove it but we asked for it to be removed as it just didn't look right to us and now we have this pathology report.  

Does this type of diagnosis mean this person is more susceptible to melanoma?  Should we get his other moles checked.  We are a moley family.  How are we going to ensure they get all of it when they excise it.   Please help us understand.  I have been trying to research as much as I can for the last 2 days since we got the report.  Thank you and god bless everyone.  

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DeniseK's picture
Replies 5
Last reply 2/21/2013 - 5:22pm
Replies by: JakeinNY, Owl, Brendan, POW, bikerwife

Hello Everyone,

I got the report back from my Brain MRI that I had done last Friday.  

It says it's decreased from 2.3cm to 8mm, decreased associated T2 hyperintensity and no new mass or abnormal enhancement.

So the MRI looks good.  Not sure if it's from the WBR or Zelboraf, I'm meeting with the Radiologist Onc tomorrow so I supposed he'll be able to tell me.

The PET Scan results aren't in yet but I'm getting pretty good at seeing the spots that light up.  As I suspected I'm lighting up on my right side either my stomache or gallbladder.  I've been having pain under my right ribs so I suspected something was going on.  The previous tumors have shrunk significantly but not sure how much until the report comes back.  I'm not having any bad side effects except my ears hurt from the WBR and they still haven't popped.  I'm also having severe nausea.  Having trouble eating and keeping it down.  Seems like I"m constantly nauseated, I'm wondering if it's from the WBR or the Z or the gallbladder/stomache tumor??  

Has anyone else had gallbladder tumor and what were your symptoms?  Did you have surgery?  

Thanks

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Carole K's picture
Replies 2
Last reply 2/21/2013 - 6:26pm
Replies by: Carole K, BarbieGirl

HI Everyone,

I will be in chat and hopeftully others as well,.  Come join us.

Love and lIght

Carole

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thrashter's picture
Replies 2
Last reply 2/20/2013 - 7:33pm
Replies by: thrashter, jag

Have to decide tonight on 4th round. Have (2) un resectable tumors near clavicle and vein. Tumors have not shrunk but have not grown. PET activity has lowered but not gone away. No direct evidence of 4th round extending overall life expectancy. Struggling with decision. Talked to surgeon he is debating doing exploratory surgery to look at where tumors are to see if he can get to them without nicking vein or nerve. Looking to see if any one has had similar experiance and what they did. Thanks

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Anonymous's picture
Replies 8
Last reply 2/25/2013 - 10:55am
Replies by: Anonymous, Janner

http://www.ncbi.nlm.nih.gov/pubmed/7272967

 

Level II--19%, 0.5 mm--18%

 

Wow, I thought it was way less than that.  Scary.

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Amanda's picture
Replies 13
Last reply 4/21/2014 - 9:04am
Replies by: jjw2014, Anonymous, Amanda, G-Samsa, gabsound, Gene_S, Erinmay22

Hello all, i wanted to start a post for patients going through Anti-Pd1 trials, so we can let each other know as well as everyone else, how treatments are working, how you are feeling, and what side effects, (if any) you have experienced.  Also, if you are a responder, how quickly did it work for you to see tumors shrinking (if measurable by eye)

My boyfriend Randy started the merk Anti-pd1 trial at UCLA with Dr. Ribas, and had his first infusion February 1st.  He is in the arm that had ippi previously, and gets the 10mg dose.  He goes for his second infusion monday.  So far, i have noticed, as well as he, that his energy has gone up a lot.  Before, he would take multiple small naps a day, and get fatigued after being up and about for an hour.  Now, he is more active around the house, and doesn't need to stop for naps as he did before.  He still isn't back to normal as he lost about 30 pounds from a partial bowel obstruction cause by a tumor in his small intestine a few months ago, and hasn't gained muscle back.  Besides from that he has had some joint pain, although im not sure it's from the drug as he was having some knee joint pain before starting.  Also, some slight muscle ache in his arm.  He also said he had a minor headache for a little while, and his eye was sore, but it went away.  (he never gets headaches).  His tumors we can measure from sight seem to have stopped growing, as far as we think, but i don't think it's smaller yet.  Hoping the next infusions will give his immune system that extra boost it needs to kick Melanomas butt!  

I hope all of you melanoma warriors are feeling well today, and i hope all of you have success in your treatments!  

-Amanda (girlfriend of patient Randy Stout stage IV, no primary)

"Give thanks in all circumstances"

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NatashaBishop's picture
Replies 6
Last reply 2/23/2013 - 12:59am

Hi Everyone, I've been looking for a support forum for a few weeks now. I'm glad I found you guys!

Around the first of the year my Dad's scans came back dirty after 4 years of NED. We're talking brain mets, adrenal glands, lung, muscle, perhaps spleen as well. My Dad completed WBR towards the end of January and we have an apointment at MD Anderson on Thrusday (Feb 21st) to see if they can help us out with any form of treatment. My Mom was an oncology nurse for several years and went through all of his scans on Sunday night. She told me that it is stage IV and we're looking at a very serious situation in which treatment will hopefully buy us some more time together but remission is highly unlikely and there is no cure. That's a lot of information to take in all at once. My Dad is 67 years old and my hero. I have three older half-sisters but we aren't in eachother's lives and I was basically raised an only child. I'm also in Los Angeles and my parents are in Florida so the distance is killing me right now. Needless to say, this is my worst nightmare and I don't really have too many friends/family members to lean on. I'm curious how everyone manages the stress, fear, anxiety, and everything else that comes up throughout this journey. I'm having panic attacks, crying at the drop of the hat, fuzzy brain, the whole 9 yards. Of course, when I talk to my parents I mask this because they have so much on their plates as well. Any advice or stories of hope would be much appreciated!

Thanks :-)

Natasha

We can do this!

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MegsEggs's picture
Replies 2
Last reply 2/22/2013 - 2:13am
Replies by: Cynthia C, Janner

Hi. My name is Megan and my father was diagnosed with melanoma. I do not think my mother is being honest with me. My dad was diagnosed early February. A little history...my dad is 84 years old and a stroke survivor. The first stroke happened 15 years ago and left him with out speech and very limited use of his right side. About 4 months ago he had a growth on his arm that his caregiver and my mom thought was a bed sore. The tried to treat it with compresses but it didn't work. Over 4 months it grew, almost tripled in size. It also started to puss and bleed heavily and regularly. The doctor removed it and sent it for biopsy. It came back as melanoma. Here's the thing. All my mom keeps telling me is that melanoma is the slowest growing cancer that there is and she has known people with melanoma and it's no big deal. That's after she tried to tell me that melanoma is non-malignant. So you can understand my doubt in what she says. So all I really know is how fast it grew before it was removed and what I have read on the Internet which is very different from what my mom is telling me. I feel very in the dark. I guess I am looking for a little insight into whether or not it could be as simple as removing the melanoma and it being gone. Any thoughts would be very appreciated.

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Carole K's picture
Replies 1
Last reply 2/19/2013 - 8:22pm
Replies by: POW

What happened to the post I did earlier about being in chat tonight at 7 PM EST and Dian from spokane and Lucklu couldn't sing in and I was booted. There is no sign of my original post.  What is going on?

Love and Light

Carole K

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Hi Everyone,

I posted I would be in chat tonight starting 7PM EST.  I signed in without problem. Two others tried to sign in and were not able. I was booted  and can't sign on again.  This is very strange.  MRF What is going on ? 

Carole K

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Anonymous's picture
Replies 10
Last reply 2/23/2013 - 1:08am
Replies by: JerryfromFauq, Anonymous, deardad, Janner, Carole K

This has bothered me and would like to know if I am the only one.  I just find it so frustrating.....that when I talk to people about melanoma they think the "ABCD's " of melanoma is " Gold Standard " in melanoma detection.  I have become very educated about melanoma..just like many of you on this forum.  I feel this way esp. since I lost my 45 y/o  brother to this cancer just a few months ago.  I myself have been to the doctors for biopsies because I have had basal cell in the past.  I have had some strange moles removed but because of my wishes...not their recommendations.  So many people I speak with don't understand all the places melanoma can" pop up "....mouth, sinuses, eye, rectum, vagina, feet, toes, nails, scalp, and nasal cavity.   Also, melanoma does not have to be a " colored mole", you can have amelanotic melanoma.   Another thing is how people don't take melanoma seriously.  It is an evil, aggressive, devious, and intelligent  cancer, and there is limited treatment options...not like say thyroid cancer.  When they here the stats on chemo and the presentation......I get the deer in the headlight look...and this look comes from some doctors that I know.  I feel that many times we are behind the eight ball on melanoma....I know first hand with my brother.  I guess what I am trying to say is that in my opinion, the true facts about melanoma are not broadcasted enough.  How come I and others had to find out the hard way about melanoma by losing a loved one or currently fighting this demon.  I know the medical professionals cannot detect everything.  Melanoma only needs a few months to mark its destruction in the body.  I know its not everyday that a doctor can see inside the body to detect a tiny spot that could be melanoma.  Also, many medical professionals....doctors, pathologists say " stage I "  " your cured " "don't worry"....HA !!!!!  I see to many stage I friends on this forum who are now stage 4.....Nothing is a 100% in cancer detection but maybe better education can help or I am open to ideas.  I could not save my brother but maybe his 4 small kids, my children, or someone else.................

 

Thanks for Listening

Sam.

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Carole K's picture
Replies 3
Last reply 2/19/2013 - 6:47pm

HI Everyone,

Just wanted to let you know I am sending out an  e-mail to those I have met in chat and others I have known from Chat for many years.  John F, Kyle, Doro, Colleen, Janet, and so many more whose names have escaped me I hope to see you again tonight.  Your stories and your attitudes are amazing,  I just want all of you to find the caring and support I did for many many years.  Let's all try to bring Chat back to what it once was.

I have so many questions for those of you who are on treatment.  There are quite a few new treatments I was not aware of. 

Hope to see you there,

Love and Light

Carole K

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The MRF is looking for two patients with stage IIIB-IV cutaneous melanoma who are willing to review and provide feedback on portions of a protocol as presented at an ad board for Novartis Pharmaceuticals in East Hanover, NJ.  We woiuld also appreciate patients in lower stages as well.  The upcoming advisory board will be held on February 25th.  The meeting start time is 11:00 am and will end at approximately 3:30 pm.  Participants are welcome to come to town the night before and stay at the host hotel which is the Hilton Parsippany.  All travel expenses will be reimbursed.  Please contact Torrey Shallcross at tshallcross@melanoma.orgif you are interested in participating.

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ChrisB's picture
Replies 6
Last reply 2/20/2013 - 2:12pm

 

Ten years ago today I had a CT scan that showed a lesion to my lung advancing me to Stage IV.  My status for the majority of these past ten years has been stable/manageable disease.

While my journey has certainly had its moments of successes and disappointments I have been fortunate in that I am still able to live a somewhat normal life and continue to work full time.  I know that this might not be the average life of a stage IV patient but I’m hoping this post gives at least a glimmer of hopefulness to others.

My heart goes out to all of you, patients and caregivers alike.

Chris

 

Stage IV February 19th, 2003

Manageable Disease since October 1st, 2004

ChrisB~StageIV on MPIP

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dian in spokane's picture
Replies 12
Last reply 3/2/2013 - 9:55pm

Okay, I'm still awaiting my call from the Specialist for my second opinion visit, and have talked to everyone I can about IL 2. Mostly, the people I have spoken to who have had success with IL 2 have told me that they WOULD do it again. Even some of those who did IL 2 and then had to go on to other therapies.

So..what I'd like is to hear from everyone here who has done IL 2, when you did it, if you did it alone or with TIL. If you'd do it again.

 

thanks,

 

dian

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