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 2
Last reply 1/23/2014 - 2:15pm
Replies by: JerryfromFauq, POW

When I was at Moffitt yesterday getting my first infusion I met a man who was on his 4th. He has multiple nodules through out his body but he had a small one on his shin. He pulled up his pant leg and it's now the size of an egg and is red/purple looking but does not hurt. This seems unusual to me, has anyone else heard of one getting that big. He also said that he has had no reactions to Ipi.

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BrianP's picture
Replies 11
Last reply 1/25/2014 - 9:22pm

I was so hoping to be able to post great news after my scans on the 22nd because I know how much my spirits are lifted when I hear the great reports.  Unfortunately I received some disappointing news.  I don't like posting this kind of news but as someone said on Tina D's recent update it's important to share the good and the bad experiences so we can all learn from the good and bad. 

As some of you know I did the 6 infusions of Nivo and scans after that showed slight to moderate reduction and no new mets.  Moved on to the IPI and received 3 of 4 infusions.  4th infusion was canceled due to headaches from pituitary inflamation.  Scans on the 22nd showed stable to slight reduction in my current disease but numerous small mets have popped up in my lung.  Wasn't sure if I was going to be able to continue on the trial due to the new disease but I found out last night that I will be continuing on trial and getting my next Nivo infusion on Monday.  I'm still optimistic about my chances with Nivo.  It was working before and I think it can work again and who knows the extra boost of ipi might make it even more effective.  Just another bump in the road I hope.  Next scan report I plan on lifting spirits!

Brian

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shanemcdonald99's picture
Replies 11
Last reply 1/25/2014 - 4:08pm

Hi

 

Cand anyone direct me to the latest statistics on stage 4 melanoma ?

Things like life expectancy or survival rates ?

I am not quite sure what I am in for with this.

It has metastisized to spine and a spot on pancreas. Original spot on abdpmen 1 year ago which was an ulcersted mole the size of 2 thumbnails. The sentinel node biopsy was clean back then.

Only one spot in bone.

I would like to see what I am up against.

Thanks

 

shane

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Socks's picture
Replies 14
Last reply 1/27/2014 - 9:43am
Replies by: Anonymous, JerryfromFauq, hbecker, Socks, dodgedh2, POW, Owl

Hi, all! Just joined and just diagnosed. Normally I'd lurk a bit more before making a new topic (I have read through quite a few threads though), but I'm in sort of an odd place.

I've been diagnosed with nodular melanoma, and I have an appointment at the University of Michigan Melanoma Clinic on Feb 5th (to get a full-body search for melanoma done and to talk with the surgeon for the SNB). But my dermatologist was kind of cagey about my staging; he says we won't know for sure until after the SNB, which is fine. But...well, I'm kind of anxious as I look over my pathology report.

PROCEDURE: Excision

TUMOR SITE: Left scalp

HISTOLOGIC TYPE: Malignant melanoma, nodular type

MAXIMUM TUMOR THICKNESS (BRESLOW THICKNESS): At least 8.5 mm

CLARK'S LEVEL: 4/5

ULCERATION: Absent

PERIPHERAL MARGINS: 1.5 mm

DEEP MARGIN: Extensively involved by melanoma

MITOTIC RATE: <1 /mm2

MICROSATELLITOSIS: Cannot be assessed.

LYMPHOVASCULAR INVASION: Absent

PERINEURAL INVASION: Present

REGRESSION: Absent

PRE-EXISTING NEVUS: Absent

PATHOLOGIC STAGING (pTNM): pT4a pNx pM (not applicable)

If my internet research is correct, pT4a would normally be Stage II, and Dr. Rinek (the dermatologist) said that the mitotic rate was very low, and it's good that there's no ulceration. But this thing was "at least 8.5 mm" when he cut it off my scalp, and in only a couple of months (I first noticed it in November and made the appointment shortly before Christmas, but due to the holidays and some other family obligations, the actual appointment was the 15th of this month; he put a rush on the lab results and I was formally diagnosed on the 16th). So I have this really large, really fast-growing mass on the back of my head where there wasn't anything before...but it doesn't look to be spreading much yet?

Then tonight I found a few very very small moles on my neck. I've had a mole on the back of my neck forever - hasn't changed shape/size/color, so I'm not worried about it - but now there's these three juuuuuust slightly raised dark spots (well, darker than the rest of my skin) that weren't there before, and I'd normally just write them off but I'm really scared about them now.

Basically, I'll be a lot less freaked out when I know exactly how freaked out I should be. Does that make sense? Thanks for any help.

"Be who you are and be that well." - Saint Frances de Sales

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Jewel's picture
Replies 5
Last reply 1/26/2014 - 9:24pm

My husband has been fortunate enough to be NED 2 1/2 years after his last surgery. My question

to all of you who are currently NED is how many are there out there that have achieved long term NED

with JUST surgery alone. Stage3/4..my husband is 3c.

Thank you

Jewel

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OzzieK's picture
Replies 15
Last reply 1/26/2014 - 9:10pm
Replies by: kylez, Zan, Anonymous, dhrahn, kathycmc, OzzieK, MattF, Julie in SoCal

Hello everyone,

Thank you in advance to anyone who can offer some input. My dad was diagnosed last week and it's looking pretty high risk. We are bracing ourselves and preparing for a fight. He is a member of Kaiser in Orange County and we quickly realized that they do not have any melanoma oncologists on their staff anywhere. So, that being said, we are in the process of identifying the best options for specialized care and treatment available in the Southern California area. We received one recommendation for Dr. Michael Wong at USC from a family friend who is an oncologist, but are also looking for other local recommendations so that we have options and ensure he will truly get the best possible care available. I know that there are several centers in the LA area as well as La Jolla.

 

Any input, suggestions, info, etc...is extremely appreciated!! 

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dawn dion's picture
Replies 7
Last reply 1/25/2014 - 9:39pm
Replies by: dhrahn, sgrain, POW, Aussielyn, MattF, Mat

Hello All

It has been a long time since I have been on this site.  WOW!!!! What a lot of changes.  Back in 2010 (seems like a lifetime ago) when I was first learned that I had Melanoma this is where I came to learn about what was in store for my new life.   After a while details of other lives became more than I could handle so I took a break.  Now I am back - Thankfully not with bad news, but to share.  First let me say that while I know not everyone that was here when I departed, sadly did not survive, it is nice to see some familiar names still roaming the pages.

As you probably already know the BRAF/MEK combo is about to become FDA approved.   I have been on this trial  now for 38 months and counting. Which in my mind debunks the origional reports that the drug did not work for long periods of time.  Before everyone jumps down my throat...I know not everyone has had the same success but I am living, breathing proof that it definetly works for some.  And from what I am hearing the numbers are growing.  

Because of my fortunate success with this combo, this coming Tuesday I have been asked to come to Moffitt Cancer Center and speak with the govenor of the State of Florida...Rick Scott...(personal opion aside) about my experience with this drug combo. From what I have been told he will be putting some funding in place for Melanoma (and other cancers I am sure)  at Moffitt.  While I have know idea where all of that will lead by the time it actually comes to pass, it is very exciting and a honor to be asked to speak about my experience. 

I would love to hear from others out there that have been on the trial, to hear about your experiences and just to let everyone know that there is hope on horizion.

Looking forward to hearing from you all. :)

Dawn Dion

 

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/25/2014 - 4:10pm
Replies by: UrsulaZ

Hi everyone here at this fantastic site!

This forum has educated me about melanoma and many posts have been a comfort to me, that there is always hope.

I am now in a study nivolumab/dacarbazin. One arm gets nivolumab and the other arm dacarbazin. I have had two fusions, last time during the fusion I felt a funny feeling in my nose and sinus where I have an inoperable melanom. I also had some pain where I had been operated. The fusion was either nivolumab or placebo, dacarbazin was not an option in that fusion. I am so frustrated not knowing what I get, I have not big trust in dacarbazin. As everyone says, not knowing is the worst. My husband is of course worried too, he got a big heartinfarct yesterday and I think it's for worrying for a long time. Now I worry for him too. We are 64/67 years old and have an awesome life after retired if it was not for this. What I want is an opinion from you that has got nivolumab if you recognise the strange feeling during infusion. Otherwise I don't feel anything, perhaps a little tired. 

  Thanks for any help.  

 

Inger

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Replies by: bj63, sgrain

GSK announces headline results for Phase III study of the combination of Tafinlar® (dabrafenib) and Mekinist® (trametinib) in metastatic melanoma

http://us.gsk.com/html/media-news/pressreleases/2014/gsk-announces-headl...

Issued: Friday 24 January 2014, London UK – LSE Announcement

 

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

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Nadia's picture
Replies 6
Last reply 1/26/2014 - 12:48pm
Replies by: Nadia, UrsulaZ, POW

Reading forums, blogs, etc.  I realize how many options of treatment are for Stage IV peeps in the US, and I can't really find as many options in Canada.  When my Hubby was diagnosed, he was told he can start Vemurafenib (Zelboraf) right away, but if he waits for a month he may be accepted in the nivo/ ipi phase III three arm trial.  He is currently enrolled in this trial and although we have high hopes and we are keeping positive, we will not know until the scans (Jan 28) what is next.  All we know is if it worked, he will be kept in maintenance (IV every two weeks) for as long as he is stable and he can handle it.

But we asked twice already what options are there if the trial didn't work.  The one answer we got was a mumble about a "compasionate" trial but it was left at that, no miracle drug name was mentioned.  I know Vemurafenib is also another option.  But what else is available?

We are ready to travel in other provinces that offer other options for treatment (and pay for the treatment if it's not covered by the Health Care system) but we really don't know what are the terms we have to comply.  Any Canadian people that had to travel around in other province for treatment?

Also, before we started the trial we contacted MD Anderson, sent them all the scan results, blood work, etc. for second opinion and they said they can treat Dave there but we have to relocate to Huston and pay for everything.  Is anybody from Canada currently treated in the US that can share any light in the matter?

Thank you,

Maria

 

 

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Doubleexposure's picture
Replies 5
Last reply 2/2/2014 - 2:59pm

Hi i am a long time survivour stave 111, 18 years .....i just had a mammogram that came back funny, i am going again....but of course as u all know u jump to is is melanoma.......i am just wondering, if it is, has anyone had it spread there, ....what did you do......etc. etc. thanks so much.....

dianne

DIANNE BONNER

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uhoh's picture
Replies 9
Last reply 7/3/2014 - 10:42pm

Hello,
My new PCP wants me to be seen asap for a suspicious melanoma and not even wait the usual 3-4 months for an appointment. I have had this lesion for years and I can't remember how or when it may have changed. Due to another cancer I have just completed treatment for, this PCP is not ignoring the potential for another cancer. The good news he said is that I've had this 'whatever it is' for years now (ignored several times by another Dr I showed it to), but we know now that I am one who already has had cancer. 

There is a near by plastic surgeon at a community hospital who has multiple openings in his schedule. I like community hospitals and docs. I also want the best diagnosis and treatment. I live a few minutes from an NCCN center where I already see a gyne oncologist.

So far I do not have confidence in the plastic surgeon I have an appointment with. Funny, that I had a choice of appointments for the following day and several other optins for the next few days is somehow not comforting. The plastic surgeon has not published in around 30 yrs and I know that should not indicate his skill and knowledge, but I can't find anything about this Dr except that he is licensed.

How important is it that I see a specialist for an initial consult? How important is it for a specialist to perform a biopsy, or excision? Is the Mohs procedure done on flat upper arm lesions? Would a Dr do a biopsy first and then decide on excision vs Mohs?

What are some questions I might ask during the first consult. I am not even sure if I'll keep the appointment or try to find another Dr. first.

Thanks.

 

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Mat's picture
Replies 8
Last reply 1/27/2014 - 4:52pm

My wonderful wife left a copy of this article out for me.  I haven't seen a better description of my day to day mental state.  Spoiler alert--the Samuel Beckett at the end (while simple) is priceless.

http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-lef...

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sjwilken's picture
Replies 8
Last reply 1/30/2014 - 10:22am

I had a second opinioin this past week.  I've been diagnosed Stage IV 4 M1.  Primary mole removed along with lymph nodes 5 yrs ago, followed by 1 yr interferon.  Found cyst on right calf and it came back as melanoma.  PET scan clear of major organs, but found something on my breast.  Getting that removed on Tuesday.

The new Dr. said, remove the tumor on the breast and you are in remission.  Does that make sense?  And no tx? 

My primary oncologist was confused bc usually metastasis usually go to the liver or lungs first.  Not the breast.  My primary oncologist isn't ruling out breast cancer. 

 

I'm just confused as to why the second opinion I got was NO TX.  I'm stage IV.  He said, just wait and watch me closely.  Is there nothing to do?

Where should I go?  I lIve in Illinois.  Please help me with any suggestions. 

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