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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Randy437's picture
Replies 5
Last reply 8/15/2012 - 10:56pm
Replies by: Anonymous, Randy437, jag, Nell

The news was all good on Monday.  NED in both brain and body.  My CTs will now be every 4 months instead of 3 months.  Brain MRI remain a 6 months.  I do not have the BRAF mutation, but qualify for Yervoy if I have another met (I've had one surgically removed from each lung, brain and small intestine).  Also, Siteman Cancer Center in St. Louis is participating in a trial of a drug for those without the BRAF mutation).  Of course I'm thrilled to be NED, but it's helpful to know there are options.  Those of you who have been there know this - but having the interval between scans lengthened is like a snow day in grade school.  Blessings to all who fight this beast and may your news be hopeful as well.

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Charla's picture
Replies 2
Last reply 8/15/2012 - 10:28pm
Replies by: awillett1991, Erinmay22

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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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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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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marysan's picture
Replies 9
Last reply 8/19/2012 - 11:40am

Has anyone done whole leg perfusion?  Can anyone recommend a teaching facility in the NE that has had success with this?  My husband has Stage 3C melanoma, started with the 4th toe with two recurrences over the past year on the lower leg.  Thanks for any information.

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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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GaylaB's picture
Replies 19
Last reply 8/25/2012 - 9:02am

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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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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Gene_S's picture
Replies 2
Last reply 8/15/2012 - 10:59pm
Replies by: Anonymous
Vitamin D can improve your health - in so many ways.
 
Vitamin D expert, John Cannell, M.D. will talk about this
on our next show ---> post your questions - here:
 
This Thursday @ 9pm est
 
(2) ways to hear our show - LIVE!
 
By phone - call:  760-569-7676
 
And, enter your access code:  815676#
 
or, listen to the show by computer with the link below:
 
 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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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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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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FightingItinPA's picture
Replies 6
Last reply 8/22/2012 - 9:54am

melanoma on lower neck; 2 surgeries; last revealed no melanoma cells in lymph nodes.  However, thyrid follicles were detected and thryoid removed last week.    SO CONFUSED about whether or not to start the interferon treatments.   Any words of wisdom on what made your decision to do it or not?  thanks

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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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