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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vicuk's picture
Replies 3
Last reply 7/10/2013 - 3:56pm

Hello everybody.

I've got some very good news to post. My best pal Helen went for her scans Thursday and results came in today. Her lung mets are stable (they were immesurable last time) and her hip tumour has shrunk again. This time last year (almost to the day) she was hit with the news that she had MM stage iv and she had 6 months to live. She has been on the GSK trial since then and has no side effects.

I tell her all the time about the people on here that are fighting the good fight and I endlessly quote CharlieS. My job is to keep her positive at all costs and that I get from you. The community you/we've got here is so knowlegeable, supportive and caring.

Many, many thanks and I think of you warriors every day.

Vic x

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Tim--MRF's picture
Replies 2
Last reply 7/9/2013 - 12:27pm
Replies by: Tim--MRF, POW

GSK just submitted an application to the FDA for their two new melanoma drugs to be used in combination.  This is a BRAF inhibitor, dabrafenib, and a MEK inhibitor, trametinib.  Studies have shown that these drugs work better in combination than either do alone.  I think most people expected they would be prescribed in combination, but getting this approval, if it is approved, will help smooth conversations about off-label usage and reimbursement.

http://www.gsk.com/media/press-releases/2013/GSK-announces-US-submission-for-dabrafenib-trametinib-combination-in-metastatic-melanoma.htmlTim--MRF

Tim--MRF

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flvermonter's picture
Replies 2
Last reply 7/8/2013 - 10:58pm
Replies by: flvermonter, POW

Hello,

We met with a Medical Onc at Florida Cancer Specialists today.  He reviewed my husbands records and suggested he take taxol while getting his radiation.  The radiation is for the lung cancer and the melanoma.  He then said after the radiation is complete start on Yervoy.  That is unless the next petscan shows other spots.  In that case then would suggest he start on the yervoy instead.  His next PETscan is a week from Wednesday. 

Any thoughts or experience with receiving radiation and taking either taxol or yervoy?

Thanks, Mary

Hugs to all, patients and care givers.

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Hi, I've seen others post their pathology reports here so I am hoping to get some help deciphering my own.  I was just diagnosed today with malignant melanoma in one mole.  I met with my dermatologist who *somewhat* explained the details of my diagnosis but was unable to tell me what stage I am in. She did explain that I will have the surgery to remove the entire mole and "that should take care of it."  I asked her if there was any indication that my cancer had spread or if there will be any follow up treatment.  She said there are no guarantees but "the odds are overwhelmingly in your favor."  I'll continue to have full body scans on a regular basis.  I asked what stage I am in and she sort of shrugged her shoulders and said "stage 1, I guess."  She gave me a copy of my report but did not offer to explain it.  Well, I am trying to focus on her positive attitude and her statement that the odds are overwhelmingly in my favor but would also like some feedback from this forum, if possible.  This is what my pathology report says:

 

"Malignant melanoma measuring 0.3 mm in thickness.

Comment:  There is a broad asymmetrical poorly circumscribed melanocyctic neoplasm composed of nests localized at the dermal epidermal junction and superficial dermis.  There is marked variation in the size and shape of the nests and areas of confluence.  There is no evidence of ulceration or vascular invasion.  The lesion extends to the lateral margins and a conservative reexcision of this lesion to ensure that it is completely removed would be judicious."  

 

I've looked at the stages chart on this site, which leads me to believe I am either Stage 0 or Stage 1A.  Can anyone clarify which one it is?  I've looked up the term ulceration but what exactly does vascular invasion mean?  What is the significance of the statement: "marked variation in the size and shape of the nests and areas of confluence?"  I will be in Mexico July 25-Aug 2 and discussed this with the dermatologist in relation to scheduling of the surgical procedure and recovery with stitches.  I don't want to put off a necessary procedure to remove cancer but I also do not want to be out of the country and have to deal with stitches, in case there are complications.  My dermatologist agreed that I would be better off not having stitches while away and said it should be fine to wait until after I return to have the procedure.  Incidentally, I have developed an infection at this same site from the scraping the doctor did last week for the biopsy and I am now on an antibiotic for the next 10 days.  She said the surgeon would not want to remove the mole until I am infection-free.  Is it safe to wait until early August for the mole removal?

Thank you for your time and advice.    

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tasjacques's picture
Replies 6
Last reply 7/14/2013 - 9:24am
Replies by: awillett1991, Anonymous, tasjacques

Hi,
My husband is getting his third infusion MK3475, but blood test came back low albumin and hemoglobin. He had bilateral swelling of legs. Anyone with this symptoms? What you and Onco did? Any help, suggestion are welcome.
Elenise (Jacques wife)

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boomer4676's picture
Replies 7
Last reply 8/26/2013 - 10:25am

Hello, I am trying to find out information about spitz nevi in children. 
In April, my then 5 year old son had what looked like a sticker on his shoulder. Because we live out in the country and he is 100% boy, it wasn't out of the norm for him. We put drawing salve and a bandaid on it and waited for the sticker to come out, only it didn't. 
Over a few short days, the sticker began to look like a wart. We treated it with Compound W. Needless to say, he is way too much boy for a small patch to stay on for the amount of time required. We spoke to our pharamsist, they reccommended freeze away. The "wart" began shrinking only to spring up again. 

 

We took him to our local doctor to have it removed. He told us it was not a wart and cut out 1mm on all sides and 1/2 cm down to remove the "wart" and sent it to pathology. After waiting almost an entire month and three pathology reports, we were told it was melanoma. Finally we were sent to Denver Children's. 

 

We had to wait almost 3 weeks for Children's get obtain the slides. They were hoping to find the lesion itself but did NOT ever find it...how nice. Our local doctor's office was SLOW getting anything sent to Denver even though they promised my son's information would be there for the appointment. Once the doctor obtained the slides and reviewed them, we were told it was a spitz nevus. 

The Denver doctors would like to cut it open again. I am simply confused as to of WHY. His surgery is set for Friday and should last an hour and a half. I am not feeling very comfortable with the opperation. Has anyone else dealt with this? 
I have read some posts about spitz nevi in children but no one has ever had them removed and then removed again! How will they know where to even opperate?!?! 

 

Thank you! 

Seriously frusterated mommy. 

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Replies by: Janner, Scott88
Hello all,
 
     I  am not formally diagnosed with melanoma yet. Have my first dermatologist appointment coming up on July 18. Put off some odd spots for several months in denial and ignorance. Now that I know better, many spots look dysplatic, many larger than the width of an eraser. Worst I feel a lump near my groin around where the lymph nodes should be.
 
I only technically have health insurance. A cheap kind which covers basically nothing beyond visits with a GP. 24, and living with mother and sister. Live in Massachusetts which has a public health program that gets a lot of praise, but from what I see is unavailable if you work and your employer offers insurance (which they're all required to now).
 
Extremely disoriented. What can/should I do at the moment?
 
My Head feels like it's in several places right now. Part's still adrift in disbelief. Another part's telling me I should rush to get some plans into place so at least some options are available.
 
Another is trying to rationalize feelings of guilt. I actually used tanning beds. Heard murmurs of the risks instead payed attention to people downplaying them. I ignored some signs for several months in denial and in doing so just incubated the problem. Feel if I suffer it's justifiable. But this is going to place a burden on my already vulnerable family they did nothing to deserve. Haven't told anyone anything yet.

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worriedmom5254's picture
Replies 9
Last reply 7/8/2013 - 4:16pm
Replies by: Thandster, Anonymous, Janner, worriedmom5254

My son is 16 yrs. Old. After having a mole removed it was sent to a hospital for tests. That hospitals pathology report said superficial malignant melanoma. They then sent the biopsy to the university of Michigan pathology dept. U of M pathology report says severe atypia.my son is being sent to the UofM melanoma clinic to have more skin and tissue removed and to have every mole looked at. How can the pathology reports differ so greatly? Please dont tell me not to worry because of the odds of a child having melanoma are so small. My niece was 9 yrs old when diagnosed with ovarian cancer...i dont believe in odds!

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chris p's picture
Replies 6
Last reply 7/17/2013 - 3:16pm
Replies by: chris p, kylez, Charlie S

A very good friend of mine has had some new developements and I am looking for some direction to help her.  She was diagnosed 16 years ago and had lymph node resection.   about 6 years ago there was recurrance and she went through interfuron treatment.  this brought her to last year when they found spots on her lung and abdomen.  With Dr Kirkwood in PA she completed the full trial of interlukin 2 with some shrinkage and no progression. 

 

As of last week (1 month after finishing trial), scans found lungs and groin had grown and new spot on breast.  So I am here to ask what is next.  She has been presented with several options but I was hoping to find out from someone who has been there what the best next step is.

 

Thank you in advance for all your help

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Anonymous's picture
Replies 8
Last reply 7/8/2013 - 3:16pm
Replies by: Anonymous, Janner

To make a long story short, I have a lesion on my ear....They did a biopsy, a full excision, and a wide excision, however margins were NOT clean, so I am due back at the end of the month for another excision.... (All these surgeries will have happened between April 1st and July 26th of this year, so about 4 months)

The lesion is a .8mm level II stage 1A, however they call it 'borderline' as severe atypia is the differential diagnosis.... So far I have been treated as if it were the latter of the 2, with everyone telling me surgery is the way to go, nothing else to worry about, treatment would be the same either way.....

I even went back to my primary doc, because I wanted to talk about my path eports and other symptoms I have been having (severe headaches every day, sometimes dizzy spells) and still, he assures me nothing is related to the melanoma where it was so thin and borderline, to go ahead and have the surgery and everything will be OK....He even offered to prescribe me some pills for anxiety, I must have came across as a loony..

That was last week...well, since that day, one of my lymph nodes on my neck have been getting slightly bigger each day.....I have read about the possibility of surgically induced spreading, (since the remaining cells have easier access to the blood stream and lymph system with all the bleeding, swelling, stitches, and so-on)

My questions are:

1) Has anyone else found that the possibility of spreading due to surgeries and unclear margins is probable?

2) How long should I wait for the node to go down before I get it checked out?

 

Out of all of this, I have not seen an oncologist, (no one deems it necessary) and I have not had any blood work, scans, or node biopsies (again, not necessary)

When should I start to ponder the idea of it NOT being all in my head, that this could be a realistic problem that no one wants to take care of????

 

help?!?!?

 

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chalknpens's picture
Replies 2
Last reply 7/10/2013 - 10:55pm
Replies by: chalknpens, Anonymous

I am here to vent some frustration, self-doubt, and fear. I have so little to complain about in comparison to most here. I offer my apologies.

I've only been dealing with skin cancer for a little more than a year - treatments, that is. I've no doubt had it for years and years.
The cancer sitings have been now on my right shoulder (basal), left back(melanoma), left forearm(melanoma), right shin(basal), left calf (squamous)

It took 8 surgeries and about a hundred sutures to clear those away. I have what some of you may recall my naming "The Mark of Zorro" on my back ... seven inches long and three inches wide at the top and bottom. That's the largest of the set of five.

... I saw the dermatologist last week, had another biopsy, and he prescribed an expensive cream rather than more cryosurgery on my forehead (his suggestion.) The biopsy came back positive:  on the left side of my chin, another squamous.

If I have the first surgery on my face, I worry that I will face more to come in another three to six months. Will the next one be the spot on my nose, or among the brown 'liver spots' on my cheeks? Will I have this 'one only,' or perhaps 'just two,' and then, reasonably, 'one more?'

Or will I say, now, 'Enough?' Where do I draw the line  ... this is on top of Multiple Sclerosis ... the cognitive effects of which took me out of my career as a public school teacher. How much is too much?
 

I am not perfect, but I am enough.

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Moodypoodle's picture
Replies 4
Last reply 7/8/2013 - 8:46pm
Replies by: Charlie S, Janet Lee, Linny

Someone mentioned in a recent post about using Firefox instead of IE to post to this board.  Chrome works for me but it took ages to stumble on that fix. It occurs to me that others might be having issues too and could use this simple hint. 
 

Every Second Counts!

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DeniseK's picture
Replies 9
Last reply 7/7/2013 - 8:51am

Hello Everyone,

I had my first infusion of ipi yesterday on the 4th of July.  I'm thinking that's a sign.  Freedom from Melanoma!

So I have a few questions that if you could share your stories with me.

My main goal in taking ipi is to help me become stable for Anti PD 1 trial.  It didn't cross my mind that Ipi could work on me.  Now I might just be wishful thinking but I swear the sub q on my arm is smaller.  Since it's only been 1 day I"m wondering if anyone has ever seen immediate response?  

If I'm a responder, how long does it last?  If I'm reading things right it could be years.  Does it have a tendency to stop like Z?

Thanks for your help

Denise

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

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Tim--MRF's picture
Replies 9
Last reply 7/7/2013 - 7:08pm

I spoke with Janet a short while ago and she is having problems posting.  She has a question that needs some responses this weekend, so I offered to post on her behalf.  Please reply to this post and Janet will read online, though she may not be able to respond:

It’s been quite some time since I’ve posted here, as life with melanoma continues its roller-coaster ride with our lives. My husband was diagnosed with Stage IV Melanoma on January 17, 2013 with unknown primary – a sucker punch from out of nowhere.

Don had CyberKnife radiation to a single brain met in mid-February. We were fighting with BC/BS to cover Zelboraf, so he started on Ipi shortly after the cyberknife. Something went wrong, and the brain met was swelling and Don became paralyzed on one side. He had a craniotomy on March 5, and then spent 5 weeks in rehab. On March 15, he started Zelboraf and it was like a miracle. After rehab, we spent 5 weeks in Florida and had a wonderful respite.

However, after 2 months on Zelboraf, followup scans showed two tiny mets in the brain and “mixed response” to various other tumors in other locations. He was taken off the Z and began Ipi treatments on May 20. He had cyberknife for the two brain mets on May 30. He has now had 3 Ipi treatments, and the 4th is scheduled for July 17.

He has not felt well since the middle of May, lots of nausea and indigestion (stomach mets), lack of appetite, and general weakness. A brain MRI following up on the May 30 cyberknife shows several new brain lesions. It may be too early to tell if the two treated a month ago were taken care of, but there are certainly more. The doctors at Dana Farber are suggesting Whole Brain Radiation so that any other lesions will also be taken care of, and they feel this should be done as soon as possible.

My husband Don has a lot of disease, and we do not know if the Ipi is working for him. We plan to finish with the 4th treatment in a couple of weeks. Depending on whether or not the Ipi seems to be working, our next plan was to hopefully get him into a PD-1 trial, which as we all know will demand a “stable” brain.

I’ve seen posts from people on this forum who have SRS-type radiation treatments to many, many more brain mets than Don is showing now. When and why do melanoma patients with brain mets opt for the WBR? And how likely is it that WBR will work (we don’t seem to have had much luck with the SRS)?

We are looking to make a decision early next week, and, as always, your experiences and opinions will be most appreciated! Thank you all.

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