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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chalknpens's picture
Replies 4
Last reply 3/1/2013 - 12:50pm

Hi - I'm doing fine myself, having had no new melanoma sites discovered at my three month and six month follow up visits. But I have a relative who has had melanoma for several years, beginniing about a decade ago. She now has lymphoma. And in our family, we have what is called a cancer gene, BRCA 2. That gene is linked to many types of cancer, and it raises the likelihood of developing cancer tremendously.

Is anyone else familiar with this gene? And have other people with melanoma later been diagnosed with lymphoma, and are the two cancers related? I've alerted my doctor to the family link to BRCA 2, and we are looking into genetic testing.

I am not perfect, but I am enough.

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Maereard's picture
Replies 4
Last reply 2/21/2013 - 3:28pm
Replies by: Maereard, Janner

Hello again everyone!
I have more questions as always:-) I had a crazy spot removed in August that was melanoma. My scar looks great and I have not had any bumps or things they told me to look for. That's my good news! I noticed a few nights ago that I have a spot that looks just as ugly and discolored as the first spot growing about four inches above my scar line. I am scheduled to see my dermatologist tomorrow. My questions is if it is melanoma then it would be a second primary, right? If I understand right then that is not as bad as it would be if it was the first one coming back??? So then would it change my stage? I am currently a stage 1 because my first one was only .25mm but if in fact this is another one does that increase my chances that it would be in my lymph nodes:-(? I did not have them biopsied in August since my primary was so small. As always any information you can give me I thank you for in advance;-)!
Beth

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Hello again everyone!
I have more questions as always:-) I had a crazy spot removed in August that was melanoma. My scar looks great and I have not had any bumps or things they told me to look for. That's my good news! I noticed a few nights ago that I have a spot that looks just as ugly and discolored as the first spot growing about four inches above my scar line. I am scheduled to see my dermatologist tomorrow. My questions is if it is melanoma then it would be a second primary, right? If I understand right then that is not as bad as it would be if it was the first one coming back??? So then would it change my stage? I am currently a stage 1 because my first one was only .25mm but if in fact this is another one does that increase my chances that it would be in my lymph nodes:-(? I did not have them biopsied in August since my primary was so small. As always any information you can give me I thank you for in advance;-)!
Beth

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POW's picture
Replies 7
Last reply 2/26/2013 - 9:13am

As I just posted on the Off-Topic Forum, I am about to travel from Atlanta to Tampa for what I expect to be a last visit with my brother. I would appreciate any advice or insight any of you may have about how to make the visit as pleasant and satisfying for him as possible. I don't mean to bum anybody out, but sometimes there are just no more treatment options. I would like to continue to do my very best by my brother as I have done since his original diagnosis-- including this stage of our journey. I would appreciate your help. 

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randallgford's picture
Replies 20
Last reply 3/28/2013 - 7:09am

We had our first onc appt since diagnosis of malignant lung mass. I really liked the Doctor

efficient, informative and great manner. I had a list of questions based on my research here on

the board and he addressed them all before I asked. Game Plan: Brain MRI and PET scan

Friday to see extent of disease. Will do BRAF analysis on tissue from lung biopsy. He is

planning: Zelboraf if BRAF positive; IPI if negative. Will assess response then consider potential

clinical trials at Sylvester Miami. Based on CT scan, he doubts 3.8,m lungmass is isolated so

isnt talking surgery as yet. He also trained with and knows the Dr. at Sylvester Center

Miami we used with first 2001 diagnosis (2b WLE with negative SNB). My husand is a very

calm person (I've always jokingly called him my Dalia Lama (sp?)) and has a positive attitude so

the oncologist said these people seem to respond well. When I asked best/worse case scenario, he

said "I can see you've done your homework so you know the stats- but forget them because he is

an individual and the only stat I need to think of is his - and it is unknown. I really liked that answer.

I now have hope and a more positive attitude. 

Vicki, his wife

Never give up!

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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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