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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Angela C's picture
Replies 1
Last reply 8/15/2012 - 9:16pm
Replies by: melissa ann

Hi everyone.

Yesterday I got the results of my scans four months out from IL-12 TIL at NIH. Scans have been stable the last three months. This time there was a small amount of growth, about .7cm. They said they have seen tumors grow one month and shrink the next, so they haven't written this treatment off as a failure for me yet.

However, they want me to start doing my research into the possible next step, should September's scans still show growth. I am BRAF negative and have pretty much done every treatment that is available. They suggested looking into a MEK inhibitor trial, but for someone without the BRAF mutation. We are told that there are some places doing this. I'm not familiar at all with MEK. Does anyone have any experience or insight into this treatment for someone without the BRAF mutation?

Thanks!

~Angela

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

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deardad's picture
Replies 30
Last reply 8/15/2012 - 8:13pm

Today and 12.40, 9th August my father passed away in my mums arms in a private hospice with his two daughters, myself and my sister Rachel.

He complained of a stomach pain on Wednesday night and we got into this lovely private palliative care hospice the next day where is rapidly declined. He fought all the way still believing he would see the neurosurgeon next week. The nurse thought it was probably his liver. 

I am totally numb and feel so incredibly lost.

My deardad is gone.

Nahmi from Melbourne

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vladimir3d's picture
Replies 6
Last reply 8/15/2012 - 7:49pm
Replies by: alicia, Janner, vladimir3d

someone i know was diagnosed with stage 2 melanoma, lymph node biopsy was performed and one lymph node came out bad, yet it was still stage 2 localised??  isn't spreading to lymph node considered stage 3?  Lymph node was removed.

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I've done a search of the board and did not see this listed. My apologies if it's been posted before. Seems like it's a very accurate method of detecting Melanoma on the skin. Approved in Canada, soon to be Europe and 2013 for US? Not certain of the time line...I was looking at an older video clip on YouTube.

 

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I live in Alabama. I am currently NED (YAY!!).  I truly don't know if I'm stage III or stage IV because my local oncologist refused to (couldn't?) put an actual stage to my melanoma.

When my melanoma recurred in a lymph node in June 2009 after a 17 year absence, my local "general" oncologist said depending on what criteria you used, it could be staged as either stage III or IV.  He stated that because of the long time period since the 1st occurence, and because we couldn't find a primary, if we treated it as a completely new occurrence, then it would be stage III.  However, if we treated it as a recurrence, because my original melanoma was on the LEFT side, and the recurrence was in the lymph nodes on the RIGHT, it would be stage IV.  Since he couldn't definitevly state which it was, he wasn't willing to stage it.  The PET/CT showed only the one positive melanoma site and treatment proceeded as if it were stage III - surgery (CLND) followed by the year of interferon hell (completed Nov 2010).

ANYWAY, my oncologist says I'm at high risk for recurrence.  I like to be prepared (former Girl Scout).  For that reason, I want to have at least SOME idea of what I want to do should it recur.  Based on what I've read on this site, I know I will need to get myself referred to a melanoma treatment center.  

So, although UAB in Birmingham,AL is listed on this site as a Melanoma Treatment Center, they just don't seem to be as "robust" a center as others - nor are they as well known.  (And I can't necessarily rely on my current oncologist's recommendation because he graduated from UAB!)  If I chose not to use them, I have to be able to defend my choice to my spouse (which should be relatively easy just based on the availability of clinical trials.)

So, if you had to chose:  Would you go to Moffett, MDAnderson, Vanderbilt, or somewhere else?  I very am fortunate that at this time, I have good insurance that will allow me to go almost anywhere.   (I'd like to stay in the southeast, but I would consider the NIH because of the TIL trials, which seem to be a very viable option.)

Thank you!

PS - I don't consider this negative thinking.  I prefer not to be in a panic should the worst should occur.  If I've at least thought about what I want to do, I'll be better prepared to make a decision and better able to discuss all the choices rationally with my husband.  Something VERY important with my VERY logical husband!

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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My mother (90) has been on Zelboraf for 8 months with great results.  The only problem we are having now is severe joint pain in the leg with the melanoma.  This is keeping her from moving around and staying active.  We have been trying to handle the pain with over the counters but will be starting narcotics today.  Any other suggestions and has this pain come and go for anyone on Zelboraf?

Thanks.

-Charla

   

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Roxy1453's picture
Replies 5
Last reply 8/15/2012 - 9:39am
Replies by: Janner, Roxy1453, Anonymous

I had the last 3 months off! No appointments, no problems! I went in today for another scan.

I have no new spots!! But, the spot I have had behind my knee is still there. It has gotten a little smaller, but not enough. We talked, In the past, about surgery to remove it but it could cause me to have drop foot. Today we are back talking about surgery. Dr. Is going to talk to surgeon to see if it is still risky. I won't know until Thurs.

He did talk about the anti pd1 being available in the next 3 or 4 months. He also said I could just wait 8 weeks and have another scan to see if it changes.

Any good ideas for me?

Thanks,

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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Nell's picture
Replies 3
Last reply 8/15/2012 - 5:33am
Replies by: Anonymous, Gene_S

To Gene and others--Any particularly good recipes for smoothies and the like for building the immune system?

One voice can make a song; one life can change the world.

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I was diagnosed on 7-12-12

Had WLE and SNB on 8-1-12 at Emory, just got path report today which is SO confusing.

Clinical stage is IIA, T3, N0

However due to the 2nd node shows scattered subcapsular immunopositive cells and immunistains for S100 are negative there was a comment attached that stated "Multiple recuts and melan-A immunostains do not resolve the issue of whether the immunopositve cells in part B represent metastic melanoma or nevus, metastatic tumor cannot be excluded.

2 pathologists came to the same assessment

This additional information made my surgeon restage my cancer to stage III and has scheduled PET and complete lymph node removal of the groin (20 nodes) on August 29.

Only 2 nodes were removed at SNB.

Margins of WLE are clear and although we thought we had GOOD news with the stage IIA, after she changed it to III we became extremely distraught.

Any info you can give would be appreciated!

God still performs Miracles,

Gayla

Never give up- God is my healer

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Eileen L's picture
Replies 4
Last reply 8/14/2012 - 3:27pm
Replies by: natasha, Anonymous, Eileen L

Just got my scan results from this past Friday, after being on the BRAF/MEK Roche trial (Zelboraf and a MEK inhibitor) for 12 weeks. The good news: The adrenal gland tumor shrank a bit more and the nodule in the lingular area of my lung is stable, both are basically non-reactive. The bad news, there is a new small lung nodule in my right upper lobe, just 8 mm.  Although non-reactive on the PET, apparantly mets this small frequently don't light up on the PET. Awaiting call form my doctor to discuss. I know that there are frequently non-specific lung nodules that turn out not to be mets, but I am bummed out!!!!!! Will post again when I know more.

Eileen L

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2012 - 1:56pm
Replies by: Anonymous, washoegal

Is it something precancerous?  Does it need further re-excision?

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Krha13's picture
Replies 3
Last reply 8/14/2012 - 11:48am

Hello, we have been lucky and my wife is coming up to 2 years on the Braf3 study having been randomised to Verumafinib. It seems very difficult to get information on complete responders. My wife was desperatly ill with lymphangitis in both lungs , a large left pleural effusion and left pleural mass- only walking a few steps with  Oxygen. Within 16 hours she was walking without Oxygen and has done well (adverse effects allowing). Scans improved quickly and clear at about 3 months. One small pulmonary slow growing melonama recurrence resected 5 months ago

Is my wife one of the longest survivors on Verumafinib?

What happens if the drug is stopped?

Cannot find any report of severe pain only on light or unexpected touch- is this a problem in others?

 

K A

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sc0tty2's picture
Replies 5
Last reply 8/14/2012 - 8:46am
Replies by: Anonymous, natasha, MichaelFL, sc0tty2, Janner

Was diagnosed last week after biopsy showed .3 mm depth.  WLE tomorrow.  I was told to get an xray of chest and eyes.  Is this fairly common?  From what I've read, it doesn't seem like .3mm would warrant the xrays.  Thanks.

 

Scott

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Aneal12's picture
Replies 1
Last reply 8/14/2012 - 8:30am
Replies by: natasha

About a month ago I had a moly removed and it came back Abnormal.  I went in last week to get a larger piece removed and when I sent back to get my stitches out they said it still came back abnormal and to just watch it.  Has anyone had this happen?  What happened?  I have a TON of moles and I am going to get a full body check, but I am concerned!

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