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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hola's picture
Replies 6
Last reply 9/27/2012 - 7:02pm

My dad was diagnosed in July 2011 (Stage 4), 18 years after the first outbreak !

Metastases in the liver and lung. (4 on the lung and something between 13 and 18 mets on the liver)

After researching, we found out, that zelboraf was approved by the FDA, in Europe it was still only available through clinical trials, doc did not really want to make a second biopsie, which would have been necessary to get into the trial.

I started to fly once every 6 weeks to the US to get Zelboraf there until it got approved in spring 2012 here.

Last CT did not show any liver mets reamining, regarding to the result it is unclear if there are still any mets on the liver at all.

On the lung are 3 left which are greatly reduced up to 70% and way less solid, only one met kept its size (reduced by 10% in the past year)

Condition of my dad is quite good, only sideeffect he has is the sensitive skin (no sun) and sometimes problems with the feet. Age 69 

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laheasley's picture
Replies 1
Last reply 9/27/2012 - 1:20pm
Replies by: hbecker

I found a spot on my side near my left breast/bra line that looked like a blood blister.  This was about a year ago.  I picked at it with tweezers and a lance thinking it would drain and was no big deal.  By the time I was done, I had basically removed the "blood blister" (which by then I knew was not a blood blister, obviously).  Some time went by before I realized that it had grown back - this time larger.  It was 3/4 the size of a pencil eraser.  I wasn't immediately concerned and let it sit on the back burner for a while as life took over.  About a month ago, I finally got around to scheduling an appointment with my dermatologist.  Her first available appointment was last Tuesday, September 18.  On Friday, September 24, I got the results.  Melanoma - 0.42 depth - not the best news, but certainly could have been worse!  I am scheduled to have it removed next Monday, October 1, unless they have a cancellation this week.  I have so many questions and very little information.  First and foremost - how can they know that the depth is 0.42 when the dr. took a shave biopsy.  I have observed two spots (my husband calls them "roots") in the remaining tissue/scab area that are dark/black and coincide with the location of the original "blood blister" and the first area where it reappeared.  If there is still melanoma remaining, is there any way to find out the actual true depth of the original melanoma?  Does it matter?  Does that make a difference in treatment?  Next question:  My dermatologist told me that she would excise a 1 cm area around the melanoma.  Is that 1 cm radius from the central point or from the edge or 1 cm total width?  I'm wondering how big the incision will be and what to expect as far as recovery/scarring.  Third question:  What are the chances that they will find more melanoma under the surface that was not removed by the initial shave biopsy.  I spoke with the nurse today and she said that the normal shave/scraping removes the tumor and the excision is just to be sure that there is no further growth.  This seems questionable to me though because I can still see those two dark spots I mentioned already - the "roots".  Fourth question:  How likely is it that a second (or third or fourth) surgery will be performed to remove additional tissue.  Both my brother and a friend had to return for additional/second surgeries.  When I spoke to the nurse, she seemed to believe that a second procedure would be very unlikely.  Now I'm uncertain what to expect.  Question five:  Will the first surgery involve removal and testing of lymph nodes based upon the 0.42 reported depth or is that unlikely?  Six:  How is the pain?  Is ibuprofen/acetominophen effective at managing it or would it be a good idea to ask for something stronger than OTC?  Seventh and final question:  I bruise terribly and make really unattractive scars.  Would that have anything to do with the melanoma or are the two unrelated?  I have worried for some time about the bruising especially.  I will wake up with multiple bruises with no idea where they came from.  It just makes me think something more could be going on here.  Well, ladies and gentlemen, thank you so much for reading this long laundry list of questions and for any advice you can share.  I felt confident that everything was fine when she first told me my diagnosis, but over the weekend, I have started to feel very uneasy ... I can't explain it.  I just have a bad feeling about all this.  Any advice for me??

P.S.  My brother has had a serious melanoma removed with no further treatment required.  My uncle died from melanoma.   My mom thinks that my dad has had a few melanomas removed from his ears but she is not certain if they were melanomas or squamous cell carcinoma.  Pretty strong family history ... :(

The child is in me still . . . and sometimes not so still. (The World of Mr. Rogers)

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Hi all,

Sorry I haven't been too good about staying in touch with everyone on this board but think of you and pray for all every day!  I've been living life!  Tomorrow is my 10 year anniversary with NED!  Diagnosed with Stage IIA melanoma in September of 2002.  Had a high mitotic rate and other unfavorable factors, offered a clinical trial, but decided to just go with the "watch" plan.  Well, ten years later and I'm still here!  Wishing all of you well and hoping and praying that some day soon they will find a real cure for this beast.   Blessings to all, Jenner

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bron's picture
Replies 1
Last reply 9/27/2012 - 8:50am
Replies by: AllyNTAus

hello again,

please let me first note.

i have been following everyone on this board and are constantly amazed at your strength, both as individuals and as a group.

 

My daughter is still waiting on the large hospital here to give her an appointment , however, bless her local GP who has decided to

give my daughter a very thorough check up (no scans yet). Ironically the only health issue that has come out of this is a seriously low vitamin D issue.

Obviously she cannot "sunbake" (in australia you would fry or get another melanoma before you would get enough vit D from our sun) so she is on supplements

and upped her natural intake through food.

We have contacted the Poche centre in sydney (we are in Brisbane) and they say they will look at her path results both initial and from her

surgery (we didn't get any from the surgeon so that is another delay while we request them).

I have become very determined to have some of these australian sites to give more information and feedback... i keep referring them to this site as a model to copy. It must be terrifying to people here in Australia to be diagnosed and not have anywhere to get basic information. It was for us before i found this site.

Something as basic as testing for vit D (needed for the immune system) was not even mentioned by the surgeon...

It seems in Australia that if you don't do your own leg work you remain afraid and in the dark. My daughters surgeon made the comment,

(when i complained about lack of information) that ""most people don't want to know so i don't tell them anything"".

My comment on this.... give them the choice...

very kind regards from bron

 

 

 

 

 

 

 

 

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NSA's picture
Replies 5
Last reply 9/27/2012 - 8:28am

Hello,

My dad found out last week that he has melanoma in his stomach.  He had been having stomach cramping and issues going to the bathroom since the end of July.  He was going in for his 5 year colonoscopy and told the gastrologist about his symptoms so they did an upper endoscopy.  During the endoscopy they found three spots on his stomach.  They took a sample of one of the spots and called a week later to tell him the results showed it was melanoma.  He went to see a dermatologist (which he had never done before) and they removed a suspicious looking mole, but told him it didn't matter what the test results were on that, he need to see a specialist.  We live in the Richmond, VA area and he has an appointment scheduled for next week at UVA.  That's all we really know at this point so now i'm just trying to research as much as I can for him.  I've been a little overwhelmed with all of the info I have found and would just like to know what we can expect going forward.  What will they most likely do at his first appointment?  What questions should he ask?  Should he get a second opinion?  I've read enough to know that once melanoma is discovered in intermal organs it is stage 4 and it looks like clinical trials are the most common treatment. . . is that right?  Any advice or information would be greatly appreciated.  My dad has always been there for me and I want to do everything in my power to help him fight this. 

Thank you,

Nick

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Maereard's picture
Replies 11
Last reply 9/27/2012 - 7:05am
Replies by: Lori C, Anonymous, DebbieH, Janner

Hi All!

I have ANOTHER question;)  Will life insurance companies still insure someone who has been diagnosed with melanoma?  I applied with Metlife a week before I was diagnosed, only because my father-in had just passed away from lung cancer and it occurred to me that I did not have a life insurance policy.  I did inform them that I had recently had basil cell removed and that the doctor had removed a spot for possible melanoma but the chances were very unlikely.  There is no cancer history in my family.  Well a week later I am hit with the news that I am the first in our family and I have melanoma.  The policy with MetLife is still pending because of a lab mix up with my blood and urine, strange yes but nothing surprises me much anymore.  Anyhow my question is, is there anyone out there who has applied for life insurance after an actual diagnosis has been made and were they able to recieve it?  Who did you go with?  Just a google search made it look a little impossible for a few years until I can convience the insurance companies (and maybe myself) that I am out of the woods.  As always thank you all for your replies:)

Beth

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laheasley's picture
Replies 11
Last reply 9/26/2012 - 10:38pm
Replies by: laheasley, Janner, Anonymous, DonW

I found a spot on my side near my left breast/bra line that looked like a blood blister.  This was about a year ago.  I picked at it with tweezers and a lance thinking it would drain and was no big deal.  By the time I was done, I had basically removed the "blood blister" (which by then I knew was not a blood blister, obviously).  Some time went by before I realized that it had grown back - this time larger.  It was 3/4 the size of a pencil eraser.  I wasn't immediately concerned and let it sit on the back burner for a while as life took over.  About a month ago, I finally got around to scheduling an appointment with my dermatologist.  Her first available appointment was last Tuesday, September 18.  On Friday, September 24, I got the results.  Melanoma - 0.42 depth - not the best news, but certainly could have been worse!  I am scheduled to have it removed next Monday, October 1, unless they have a cancellation this week.  I have so many questions and very little information.  First and foremost - how can they know that the depth is 0.42 when the dr. took a shave biopsy.  I have observed two spots (my husband calls them "roots") in the remaining tissue/scab area that are dark/black and coincide with the location of the original "blood blister" and the first area where it reappeared.  If there is still melanoma remaining, is there any way to find out the actual true depth of the original melanoma?  Does it matter?  Does that make a difference in treatment?  Next question:  My dermatologist told me that she would excise a 1 cm area around the melanoma.  Is that 1 cm radius from the central point or from the edge or 1 cm total width?  I'm wondering how big the incision will be and what to expect as far as recovery/scarring.  Third question:  What are the chances that they will find more melanoma under the surface that was not removed by the initial shave biopsy.  I spoke with the nurse today and she said that the normal shave/scraping removes the tumor and the excision is just to be sure that there is no further growth.  This seems questionable to me though because I can still see those two dark spots I mentioned already - the "roots".  Fourth question:  How likely is it that a second (or third or fourth) surgery will be performed to remove additional tissue.  Both my brother and a friend had to return for additional/second surgeries.  When I spoke to the nurse, she seemed to believe that a second procedure would be very unlikely.  Now I'm uncertain what to expect.  Question five:  Will the first surgery involve removal and testing of lymph nodes based upon the 0.42 reported depth or is that unlikely?  Six:  How is the pain?  Is ibuprofen/acetominophen effective at managing it or would it be a good idea to ask for something stronger than OTC?  Seventh and final question:  I bruise terribly and make really unattractive scars.  Would that have anything to do with the melanoma or are the two unrelated?  I have worried for some time about the bruising especially.  I will wake up with multiple bruises with no idea where they came from.  It just makes me think something more could be going on here.  Well, ladies and gentlemen, thank you so much for reading this long laundry list of questions and for any advice you can share.  I felt confident that everything was fine when she first told me my diagnosis, but over the weekend, I have started to feel very uneasy ... I can't explain it.  I just have a bad feeling about all this.  Any advice for me??

P.S.  My brother has had a serious melanoma removed with no further treatment required.  My uncle died from melanoma.   My mom thinks that my dad has had a few melanomas removed from his ears but she is not certain if they were melanomas or squamous cell carcinoma.  Pretty strong family history ... :(

The child is in me still . . . and sometimes not so still. (The World of Mr. Rogers)

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Mickey n Jo's picture
Replies 5
Last reply 9/26/2012 - 10:11pm

Hi, again. Let me begin by saying that we almost feel a little guilty posting a question knowing what Kevin and Brenda are going through right now. All else pales in comparison. My husbands most recent scan came back pretty much the same as the previous one, with a decrease in size of some mets and a slight increase in size of some others ( no new ones though ). I guess this is good, since he was off the Zel for almost two weeks due to the side effects. He's feeling a lot better now and has started on the Zel again, 3 pills morning and night, and so far no side effects. Should he continue with the Zel, since it is working, or should he consider switching to Yervoy? He's leaning towards continuing, especially since he hasn't had a problem with any side effects now.  Any information would be appreciated. Thanks.   

                                                                                                                   Jo

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Angela C's picture
Replies 2
Last reply 9/26/2012 - 9:24pm
Replies by: jag, Charlie S

Hi everyone.

Those of you who have had SRS, can you fly after that procedure? Is there a certain amount of time you are supposed to wait before you hop on a plane? I have SRS scheduled Octioer 1st and then I fly back to NIH for a follow up appointment on October 27th. They know I'm having SRS, so I assume it must be fine. But, just wondered other people's experience?

Thanks!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Lisa - Aust's picture
Replies 1
Last reply 9/26/2012 - 8:35pm
Replies by: Tina D

Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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sjl's picture
Replies 6
Last reply 9/26/2012 - 3:45pm
Replies by: MeNDave, sjl, shellebrownies

My husband was diagnosed with mucosal melanoma in the nasal cavity in April.  He had two surgeries on the nose (clear margins the second time around)  and lymph nodes,, one of which tested postive, removed.  Because of another developement with a primary lung cancer that they wanted to address first, treatment was delayed.  While waiting for treatment for the lung cancer, his melanoma marched on.  He woke up one morning and, literally, overnight, a large tumor and several pea sized tumors had popped up along the neck near the incision for the lymph node removal.  A biopsy was done and confirmed to be melanoma as suspected.  Meanwhile, everything kept growing every single day while we waited for a phone call telling us when to go back for another scan before they decided what to do.  I won't get in to all the communication problems between the doctors involved but in a matter of days the things were huge and pain developed.  It took some doing on my part but they finally told me to take him to the ER two hours away, and yes, he is being treated by a melanoma specialist at a major cancer center.  The largest tumor was pressing on a nerve, causing pain, pressing on an artery, causing high blood pressure, and close to affecting his breathing and swollowing.  They were going to discharge him after a couple of days and schedule an appointment with the melanoma guy again.  This, after all they had seen!  I got wind that the doctor was leaving the country for a few weeks and insisted that we be seen that day.  He was, and things got started.  My husband is BRAF and CKit negative, not able to tolerate IL2 (at least for now) and because things were moving so fast they decided against Yervoy and went with Carbo/Taxol.  It's working!!  I watched the tumors shrink as fast as they grew!  After one treatment, the main tumor was pretty much gone and they said they don't usually see any kind of response like that.  Has anyone else here seen that kind of a response and if so, how long did it last?  They told us that there was no durable response with the chemo and that they would use it until they could get to something else.  Last week at round 2 of treatment, they said it might just work in him and that they may not do anymore after he's finished the chemo - just keep scanning and watch.  He goes for another treatment next week and will be restaged at that time.  As you can imagine, we are pretty happy right now but I know how fast things can change.  He's not elligible for a clinical trial because of the lung cancer.  I know the options are slim, but what should I be asking the doctors and what should I be looking for?  I've learned a lot from skimming this board.  The PA told me I ask a lot of questions and that most people don't do that.  Really????  With something like this????  I like to be informed - the good, the bad, the ugly.  "I don't know" is an acceptable answer too, but I want to know as much as I can about this, realizing that there are no guarantees, everyone is different, and so on.  I'd love to hear from others who have tried carbo/taxol.

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Mickey n Jo's picture
Replies 5
Last reply 9/26/2012 - 1:24pm
Replies by: Anonymous, Mickey n Jo, awillett1991

Ok, here we are again. My husband just had a short hospital stay during which time they stopped the Zel and gave him fluids to build him up a bit. He's feeling much better now, even gained about a pound and a half, but heres the tough part, should he continue on the Zelboraf at the reduced dosage of 2 pills morning and night, or switch to Yervoy. Right now we're leaning towards continuing the Zel as long as it's working. He goes for his scan on Friday, so we'll see what that shows. How bad are the side effects associated with Yervoy? He had such a rough time on the Zel.

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panda's picture
Replies 5
Last reply 9/26/2012 - 8:37am

Hi everyone... just a quick question... it will sound relatively mild but ive been wondering. My father passed away from stage four melanoma two years ago. i went and had mine checked and i had a melanoma in very early stages on my back.. so i had it removed with a two centimetre margin. Have had a mole map and all other moles look ok, so im told... i have a rather large mole, size of tip of little finger lower abdomen area.... i have been told it does NOT look like a melanoma.. However im curious? it was quite small about ten years ago... a sort off tiny dot size.. it has grown over ten years... and is now almost size of tip of little finger area... but i am still told it does not look like melanoma.... Isnt a growing mole a sign of something not quite right? or is it normal for them to grow in size/???? also, should i just get it removed and checked anyway. The doctor and skin specialist tells me there is not cause to worry?? so should i believe them... or err on the side of caution?? thankyou all replies will be read and appreciated. 

today is a gift and thats why its called the present

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Hey all, I recently found out I had melanoma in situ. I was very lucky to see my dermatologist only a month after I noticed the spot and had it removed. I now know though about sun smarts. I dont go out in the sun with out sunscreen... hat... the usual... My question is that I get very frusturated when going to the beach with friends or hanging out with people who just want to "lay out" and "look healthy". I cried the day I realized I had no tan lines on my body because I was so happy,  to me that was what it meant to be healthy, but other people have different points of view. How do you handle being in situations where other people are laying out in the sun and you are hanging out under your umbrella? I often will hear people  saying things like "Oh why are you hiding under there! Come on out and get some color on your skin!" And I want to crawl even farther under that same umbrella. Any advice would be greatly appreciated! Thank you! :) 

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Lucassi's picture
Replies 6
Last reply 9/25/2012 - 9:59pm
Replies by: Lucassi, kylez, Phil S

My husband Mike has metastatic melanoma in the left lung, brain and adrenal gland.  He developed a brain tumor and the tumor on the adrenal gland after completing Yervoy about two months ago.  He had no side effects from the Yervoy treatments which were supposed to shrink the lung tumor.  In reality, the lung tumor grew slightly larger and the brain tumor and adrenal gland tumor developed.

Mike had a craniotomy two weeks ago and is recovering without any complications.  Unfortunately, his initial tumor was Braf and Ckit negative.  As most of you know, there are not many treatment options for patients without these mutations.  We see his oncologist in two weeks to talk about further treatments. 

I would appreciate your input as what treatments might be available given my husband's history.  I am so scared that the melanoma will spread further and there won't be anything we can do to stop it.  I know that some of you have taken Temador and was wondering if anyone started taking it after a craniotomy, and how soon after the surgery? 

Thank you for any suggestions you may have. 

Sigrid

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