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 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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Mandi0280's picture
Replies 7
Last reply 2/20/2013 - 3:23pm
Replies by: Gene_S, Mandi0280, Anonymous, washoegal

Hello,

 

 Wanting to know what everyone here knows about scan intervals. Since my husband was diagnosed with melanoma in October 2011 I have done a fair amount of research and thought that I knew when scans would be due. Long story kinda short...after diagnosis he done ipi until he couldn't take it anymore. One month of interferon and scans every 3 months. He was 1 year NED as of October 2012. We just had a followup with his oncologist who said we will see you back in August  and did not schedule any scans. This was very shocking to me. I do know in October he told us it was getting harder and harder for him to get scans done for people due to insurance reasons but i'm still a little worried about this. Has anyone else waited this long in between scans after just 1 year NED? This will put my husband at 10 months in between scans

 

Thanks

Mandi

Mandi

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Newmom's picture
Replies 2
Last reply 2/19/2013 - 11:31am
Replies by: Newmom, Becky

Is it normal to have moles on the gum?  I realized that a mole appeared on the gum of my 6 year old daughter.  It is small but I read it is better to have it removed giving its location.  I am taking her to have it checked this Friday but just want to see if anyone here has any thoughts or experience with this.  Thanks.

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Calynda's picture
Replies 13
Last reply 7/13/2013 - 3:39am

I recently saw a dermatologist about a spot on my skin that I've had forever.  I had a previous doctor tell me that it wasn't anything to worry about unless it started changing.  Last year I stopped taking birth control and got pregnant fairly quickly.  Sometime in that time frame, the spot in question started to change.  It was going to be a priority, but then my baby stopped growing and I had to take care of the miscarriage since my body did not recognize a problem.  Shortly after that, I was pregnant again.  We found everything to be good with the baby at the end of November/beginning of December.  I was a month away from changing insurance, so I figured it would be easier to wait and see the new doctor than to try to find one under my previous insurance just to change anyway.

 

So basically the spot has been changing for a little less than a year at the time it was biopsied.  The determination was Melanoma.  I'm currently 25 weeks 3 days pregnant.  I was informed of the Melanoma a week ago.  Today, in addition to my 3 hour glucose tolerance test for the pregnancy, I had a consult with an oncologist as well as with the general surgery department.  I should be scheduled for a WLE and a SLNB (without the blue dye since I'm pregnant) within about 2 weeks.  Once that's done, we should know more about how bad, or not bad this is.

 

I'm terrified that it will be bad.  Right now it's classifed as stage IIc.  The oncologist has informed me that I will probably have 1 year of treatment after the baby is born.  The baby is currently due May 31st, but I have a consult with Perinatal on Wednesday.  I have had no complications with the pregnancy so far, but they want me to meet with Perinatal incase they have to have me deliver the baby early so that I can start treatment.  The oncologist is worried about post partum emotions mixed with the cancer treatment (I'm pretty sure it was interferon she had mentioned).  She's also mentioned that there is a clinical study she'd like to try to get me into.  She had mentioned this particular study was one that would add to the other treatment.

 

I'm working very hard to not let this adversly effect my day to day life.  Right now my husband and I don't know anything other than the spot was a thick melanoma.  I can't wait to get some more answers so we know how to plan for this.  My husband is really scared about the prospect of having to care for a newborn and a sick wife.  The waiting is just really hard.

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Gene_S's picture
Replies 7
Last reply 2/19/2013 - 6:25pm
Replies by: Anonymous, LynnLuc, Gene_S

Richard Weller: Could the sun be good for your heart?

Our bodies get Vitamin D from the sun, but as dermatologist Richard Weller suggests, sunlight may confer another surprising benefit too. New research by his team shows that nitric oxide, a chemical transmitter stored in huge reserves in the skin, can be released by UV light, to great benefit for blood pressure and the cardiovascular system. What does it mean? Well, it might begin to explain why Scots get sick more than Australians ...

more info at:   http://www.ted.com/talks/richard_weller_could_the_sun_be_good_for_your_heart.html

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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