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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Pink's picture
Replies 4
Last reply 1/9/2014 - 9:10pm
Replies by: Pink, Bubbles, UrsulaZ, POW

Went to Moffitt yesterday met the neuro and radiologist new MRI shows 4small lesions all on the right side.of my brain   I got fitted for the lovely plastic mask and start treatment on ties, we'd, Thursday and Friday. The following week start Ipi, here is hoping they all work. The trek of 1 45 min each way is tiring but I feel I am getting the best care there.

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Yvonne.D's picture
Replies 4
Last reply 1/10/2014 - 12:32am
Replies by: Yvonne.D, Janner

I have just been diagnosed with Melanoma and looking for some help with my report. I need to stay positive, strong and informed for my 5 month old, 6 1\2 year old and my husband and hoping someone can help. If anyone can help me explain my report for me. Also if anyone has been through what is close to my diagnosis I would greatly appreciate your comments or experiences and what treatments you have had. Everyones cases seem to be different in some way so even any thoughts would be wonderful.

Here goes. Biopsy Report.

Surgicial incision with 1 cm MA of skin. Left thigh. Superficial Spreading Malignant Melanoma. Level 2 invasion, vertical height 0.47- No ulceration. Mitotic index is one mitosis per 1 mm squared.

On November 18th I had an appointment with the Dermatologist who looked at my mole. She then made an appointment on the 27th to have a biopsy. On the 27th she did a shave biopsy. Apparently she was ruling out 3 possibilities. She said make an appointment to come back in for the results which was going to be for tomorrow however my family doctor called to tell me last thursday to tell me that it was Melanoma. I called my dermatologist right after that tryin to get in earlier to see them for the results which was now really just for the specifics on how bad it was as my family doctor was only able to tell me it was superficial. So I was a mess that day thinking my children and husband were going to be without me very soon as I have only ever heard that melanoma is a death sentence and was not educated at all about melanoma. I don't think I have read as much as I did over the past 5 days about other peoples stories and information about it. Thank you to everyone who posts. I did get in yesterday for the results because they had a cancellation. I have an appointment on December 31st to have a surgery. I have to call the nurse back tomorrow just to discuss a few more details about the report as I was just listening as she went over specifics and didn't know the right questions to ask or more so couldn't. Now I have a grip of myself enough to talk and be the best informed and educated patient I can be hopefully with a little help for you guys.

I do suspect that I have more on my body as well. The one they diagnosed was brushed aside saying it looked fine by my family doctor as well as by my OB after I asked what they thought about it. I cannot say enough to other people to go with your gut and get that referral if you suspect it is not normal. They are both wonderful doctors and could not say a bad thing about them, after all they are not a dermatologist.
I have an appointment in the New Year to do a full body with my dermatologist.

I am in Southern Ontario and have a few cancer hospitals from a 30 min drive as far as a 1hr 30min drive so I am feeling positive that if need be I can get the care I need very close.

I was going through web pages trying to figure out my diagnosis and think I may be a T2A as of right now please correct me if wrong. Once I have my surgery that may change as the nurse said they didnt get it all when hey shaved it and could be bigger.

Your thoughts, suggestions, anything would be greatly appreciated.

Yvonne.

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SaveMySister's picture
Replies 13
Last reply 1/10/2014 - 8:15am

Hi all,

I haven't posted since shortly after my sister passed away less than one month after being diagnosed with stage 4 melanoma last July. Being that she had no skin abnormalities, I am wondering if we all missed any other warning signs.  If you get a melanoma lesion on your lung, would it cause breathing difficulty? She had a small 'mass' on her lung that they called a cyst, which was detected about 1-1/2 months before her diagnosis. She had had breathing problems which were assumed to be allergy related back in 2011, which never really got under control completely.  (They removed polyps from her sinuses but kept putting her on steroids.)  She was tired a lot and became a caffeine drinker.

Her melanoma was discovered when a large tumor was removed from her lymph node. An MRI of her brain shortly thereafter revealed 11 lesions. I guess what I am trying to figure out, is that are there any warning signs that I can look for to try to catch this very scary form of melanoma that shows up internally? I don't want to spend my 50's and 60's being paranoid that I will be dealt the same fate as my sister. I am getting my skin checked every 6 months, but in my case that may not be enough.

Thanks!

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Anonymous's picture
Replies 4
Last reply 1/10/2014 - 8:26am
Replies by: Tina D, Anonymous, JerryfromFauq, Janner

I am new to this site. I have had what felt like an itchy dry patch on my back for what seems like years. The other day I asked my husband to look at it and he said I should get it checked out. He took a picture of it and it looks very much like the spreading melanoma on this site. It is about a pencil eraser size wide and very slightly thick. There is also another one next to it that looks similar.

I have an appointment on Wednesday to get it checked out. My question is, because it is on my back I have no idea how long it has been there. Can a melanoma stay in situ for months or years before getting more advanced? I am concerned.

 

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Richard_K's picture
Replies 8
Last reply 1/10/2014 - 10:51am

For those of you familiar with me, you know I have been on Zelboraf for quite some time and that over the past fifteen months or so, I have had issues with my bilirubin being high.  At my six week NYU check-up this week, the bilirubin count came back quite low.

When I came home from NYU the mailman had delivered the news from my recent colonoscopy  – no problem, repeat in five years.

Today I met with my urologist about last week’s prostate biopsy (third biopsy since diagnosis) – prostate cancer – NED!

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bodrum's picture
Replies 19
Last reply 1/10/2014 - 11:18am

In september of 2013 I noticed a change in the color of a birthmark/mole. I sent a picture of it to an oncologist family member who told me that it was probably nothing since it was a birthmark. 

In December, I jokingly showed the color change to my dad who is an orthopedic surgeon... He immediately took me to the hospital and had the birthmark removed.

The surgeon who was removing the mole looked at it and said that it's probably nothing but will check it just to be sure.

Two weeks later the test results came back. They said that it was malignant melanoma. A few days later they did the wide excision and sentinal lymph node removal. One of the lymph nodes came back positive...

Two days later they did the pet scan which was clear.

At first I refused the full lymph node removal since I really don't understand why I should be living with lymphedema when I was just fine before all of this. But I will have the surgery this tuesday...

On new years eve my brother told me that I will probably die within 5 years. (he is an oncologist) He also told me to stop taking vitamins... ( I don't get why)

My dad says there were few cancer cells in the mole but that it had only spread to the lymph node only because the cancer cells were at the hair follicle. He also stated that the lymp node only had micro metastases. 

All these terms seem so foreign to me.  I look at statistics and they all mean nothing at this point. I don't understand what it all means. 

I am 33, I just started my own business this year. I was planning to get married and have kids within a year...  All that is gone now. 

It's time to make new plans... I just wished someone told me the truth about what is awaiting me...

 

 

 

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Anonymous's picture
Anonymous
Replies 15
Last reply 1/10/2014 - 1:18pm
Replies by: jahendry12, Anonymous, JoshF

Kaufman is leaving Chicago? Where is he going?   Does Rush have another melanoma specialist?

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Anonymous's picture
Anonymous
Replies 10
Last reply 1/10/2014 - 4:39pm

Hi Everyone,

Has anyone been able to work full time while on PD1? I have had one infusion so far (two weeks ago).  I was up all night Monday with chills and Tuesday I felt like I was recovering from the flu (flu hangover).  Just curious if I will be able to work full time with more infusions coming (hopefully 11 more).

Thanks.  Good luck to youi.

Brendan

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Hey Friends,

An update on my husband Scott's status:
Scott received 6 doses of Nivolumab, but only 2 of 4 scheduled doses of
Ipilimumab while on the BMS Nivo/Ipi trial at UVA. (The last dose
administered on October 30th, 2013). He was unable to receive the final
two, as his liver AST and ALT levels were vascillating between Grade
2-Grade 4 adverse effect reaction. Corticosteroids (prednisone) were
begun in mid-November 2013 (after a very odd 4-day
hospital-stay-requiring and as-yet-still-undetermined high fever
episode in Los Angeles). We saw results and began tapering (with the
hopes of rejoining the trial protocol as soon as levels equalized).

Scott's scans of December 27th revealed yet another 50% reduction in
his lung tumor size in the two more formidable locations...the largest
of which is now a mere 4.5mm, the smaller 2.5mm! One has resolved
nearly completely...and a few others seem "dead in the water,"
unchanged in nearly a year!

However, his bi-weekly lab work this week revealed his liver levels (at
our tapered down to 60mg a day dose) ascended DRAMATICALLY to nearly
14x the norm. Our fantastic oncologist, Dr. Grosh at UVA immediately
has bounced us back to a full 200mg daily, and Scott consulted (at Dr.
Grosh's behest) today with liver specialist Dr. Caldwell at UVA. We're
looking forward to seeing a perceptible drop in AST & ALT tomorrow when
we do labs. Our fondest hope is to rejoin the BMS trial with two years
of "maintenance" Nivolumab once his liver is "back to normal," as it
clearly is working so well for Scott and so many others.

We wanted to bring you all up-to-speed---as well as to see if you have
any insight/advice into this profoundly stubborn liver reaction to the
sequential Nivo/Ipi combination.

WIshing us all health and happiness and hope-
Cheryl Lage
Wife of Scott, Stage IV since Feb 2012
(Diagnosed in 2005 at 2a, 4 recurrences---surgeries, radiation, 27 bags of IL-2, two clinical trials and scans beyond counting and he's here and FIGHTING and LIVING!)

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Anonymous's picture
Anonymous
Replies 12
Last reply 1/10/2014 - 7:02pm

Anyone else experienced headaches with ipi? I'm going on about 2 weeks now of pretty constant headaches. Started pretty mild but lately I call them more migraine like. Thankfully MRI on Thursday came back clear. Scheduled for my 4th and final ipi infusion tomorrow. Just hoping this headache doesn't get worse with another infusion. 

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Lisa - Aust's picture
Replies 17
Last reply 1/10/2014 - 11:31pm

Hi Everyone,

Just wanted to share our good news and give others hope. My husband Craig started the Merck PD1 trial in Oct 2013 after prolonged success on the BRAF inhibitor trial. The one lymph node in his abdominal region flared up again, so he had to stop the BRAF trial. He had his first set of scans last week since starting the PD1 trial, and the results today were excellent. He had an 80% reduction in the size of his tumour. Although his tumour wasnt very big to begin with, the results are so encouraging, and it is such a relief that he is responding. This drug seems to be doing wonderful things, I hope everyone can have similar positive results.

We are a couple of relieved Aussies tonight.

Good luck to everyone fighting

Lisa

x

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Replies by: BrianP, kylez

http://www.theaustralian.com.au/news/latest-news/blood-test-to-tackle-me...

A SIMPLE blood test could identify those patients whose melanoma - the most serious form of skin cancer - has started to spread to other parts of the body, according to new research.

The test allows scientists to examine DNA shed from cancer tumour cells into the bloodstream, in particular a gene called TFP12.

The gene usually helps stop healthy skin cells growing out of control, which can potentially lead to cancer.

But in melanoma patients this gene is switched off because of the presence of chemical "tags" known as DNA methylation.

Experts behind the test found that higher levels of DNA methylation suggested the cancer had spread around the body.

Early stage tumours had relatively low levels of DNA methylation, while advanced cancers (those that had spread) had much higher levels, suggesting the gene was more tightly shut down.

Measuring levels of methylated TFP12 in DNA in the blood could help doctors work out whether the disease has spread and what treatments may be needed.

Dr Tim Crook, study author and a consultant medical oncologist based at the University of Dundee, said: "Once melanoma starts to spread it becomes far more difficult to treat. But actually detecting whether or not it has started to spread is also challenging.

"By using a blood test, we have the basis of a simple and accurate way of discovering how advanced the disease is, as well as an early warning sign of whether it has started to spread....

"There's increasing evidence that the latest treatments are more effective in these early stages and, if we can identify patients whose cancer has only just started to spread, this would significantly improve the chances of beating the disease."

The same Dundee researchers have identified another potential biomarker - NT5E.

This gene appears to become methylated and switched off as melanoma first develops. But if NT5E becomes unmethylated again, the gene is reactivated and helps the disease to spread more aggressively.

The researchers suggest that NT5E could be a possible target for the development of new treatments to tackle melanoma, particularly for aggressive cancers that have spread to the brain, lungs and other organs.

Professor Charlotte Proby, a Cancer Research UK dermatologist based at the University of Dundee, said: "Using blood tests to assess the landscape of our DNA is a simple way to learn more about what's going on under the skin. The switching on and off of certain genes seems to affect when, where and why the melanoma spreads.

"Our goal is to develop a panel of similar biomarkers that will help us to accurately detect those patients needing extra treatment to fight their melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/11/2014 - 12:35pm
Replies by: Anonymous, aldakota22, Richard_K

May be moving to CT. Does anyone have any input on Yale Cancer Center as a melanoma center.Has anyone any first hand experience there.May it be good or bad would appreciate your input.Any doctors should I seek.Thank you.

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Yvonne.D's picture
Replies 6
Last reply 1/11/2014 - 4:23pm
Replies by: Yvonne.D, BrianP, WendyD., Linny

Good morning.

I have a question for anyone who would like to help.

I was diagnosed back in November with Melanoma. I had my WLE done last week. I did not have the SNB done. My surgeon did check my lymph nodes in my groin area that day as the Melanoma is on the left thigh. She did not feel anything. Yesterday I pressing against my vanity when looking in the mirror and felt discomfort in my groin area. Felt on my left side and there is a pea sized lump there. Of course my mind goes right to the worst place. I have been suffering the last 2 months with a tailbone issue and then did something to my lower back/buttock area left side, like I put my back out(I sound like my mother now!) Or pulled a muscle 3days ago. So that side is in bad shape already.

I am just wondering if anyone had lymph nodes swollen in that area that was not melanoma or experienced anything like that? My WLE was on the 31st of december. Could it happen that fast after her just checking my groin and felt nothing? I know it is unpredictable and anything I am sure can happen, just wondering peoples thoughts.

Monday can't come fast enough to call my Dr. Or should I just go to emergency and get someone to check it there. I don't want to be over paranoid all the time but it's so hard not to be now.

Thoughts anyone?

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WendyD.'s picture
Replies 4
Last reply 1/12/2014 - 12:39am
Replies by: WendyD., Janner, Bubbles

I finally got to see a dermatologists and got my skin checked. Well, once the derm seen all of my path reports she suggested that I might have to have MOHS Surgery because she felt my margins weren't big enough. My melanoma was quite thin and the intial biopsy itself had clear margins. Then I had my WLE done and it came back completely clear as well. Why in the world would I have to have MOHS done? Then while she was checking me she marked two more places on my back and done shave biopsies on them. Why would she do that knowing my history with melanoma? Shave biopsies can alter my results if it comes back as melanoma. Grrr!! Well, on another note I did request for them to get my slides and let a derm path look at my intial biopsy which they are going to do. I definitely wanted a second opinion on that. But from my knowledge unless these other biopsies come back melanoma they only want me to come back at 6 month intervals. Is that normal? Also I did finally convince my doctor to excise the abnormal lesion as well and I believe they said everything came back ok on that. I guess I'm just confused on everything. She don't think I need 3 month follow ups but I need MOHS surgery? Has anyone else had this to happen to them before? Also I know Clark's level isn't used a lot anymore, but I am kind of curious what mine was or do they even check that anymore? I know I read something about if it is level iv that AJJC will put it in their system just not on the actual path report. I don't know everything is so controversial on some of these sites you never know what to believe. I want my life back! I have read other people's stories how melanoma was all they thought about once they got their diagnosis, and I understand completely cause I have done the same. It's almost like I'm afraid to be happy because I feel like it could be short lived by a recurrence or by me finding out it had already spread without me knowing it. Oh and by the way every back pain, headache, or any other pain I have now is melanoma( not really but that's what comes to my mind now). Where before I would count these things as oh well I'm getting older and stiffer. Or wouldn't pay much mind to them. Now I'm thinking should I get an x-ray or something? Or just ignore it cause I couldn't handle the diagnosis anyway? When I first was diagnosed and realized the low risk lesion I had I was relieved and felt very optimistic. I mean 95% or higher survival seemed pretty good. But now my thinking has gone to what if I'm the 2-5% that becomes a statisic? Thanks for letting me vent, because I don't feel like I can do this with my family. I have to put a smile on my face as if this never happened and like I'm going to out live Methuselah (which was the oldest living man in the Bible for those who didn't know). Well, I guess I might need some sleep sometime today. Good Night For Now.

In God I Trustsmiley!

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