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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Judy D's picture
Replies 10
Last reply 1/30/2013 - 7:49pm

I am stage IV and am on Zelboraff. I recently have had two different nodes removed from my right thigh. My dr. Is recommending that I get a consult with a radiation oncologist. My question is has anyone done radiation for their melanoma and what was it like? Thank you for any advice on this subject.
Sincerely, Judy

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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dolphin5's picture
Replies 4
Last reply 1/30/2013 - 7:02pm
Replies by: kylez, Linny, POW, Janner

My wife was found to have four tumors all positive for melanoma.  Three have been removed with clear margins.  One in the breast, lung and buttocks.  One was left in her neck with the theory of wait and watch, which she does not like.  The primary was never found.  All have the marker of HMB45, S100 and Melan-A.  This is our question.  What do these markers mean and do they determine future treatment.  Finally does it sound reasonable to wait and watch.  

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sharmon's picture
Replies 5
Last reply 1/30/2013 - 6:30pm
Replies by: sharmon, Owl, Anonymous, awillett1991, melissa ann

I will need to have all the the available now.  the trial is not working and he is in terrible pain in the hospital now.  he was to be scanned on the 6 of feb but they are moving it up to tomorrow .  then they are talking about radiation .  I will be asking questions and trying to find a way to  get more treatment.  he doesn't want to quit.  all of his pain can be treated with a inserted pain pumb under the skin and that is scheduled.  he was on the merck mek trial and did not fail the trial but moved to this trial when it became available.  Jimmy B I need your input as well as others.  I still have mek on hand.  he is braf negative and was tested twice but not by the new test.  this was years ago.  HELP.  Ask me questions, give me hope. 

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Amanda's picture
Replies 6
Last reply 1/30/2013 - 3:33pm
Replies by: Owl, Amanda, Phil S, Tina D, POW

The subject says it all.  We are very thankful for this opportunity, and are praying it shrinks his tumors.  I will keep everyone updated on his response, as well as any side effects.  Wish us luck.  

"Give thanks in all circumstances"

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/30/2013 - 1:08pm
Replies by: Anonymous, Janner

I thought melanoma on the skin that regresses would be a good thing.  It would be going away.

But then someone posted that if a place on skin regressed, it might end up later that a tumor showed up with an unknown primary.  That didn't sound so good.  You might lose a signpost that something was wrong.

What to make of this?  Puzzling.

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/30/2013 - 12:51pm
Replies by: Janner

between melanoma in-situ and invasive radial growth phase melanoma?  what's the difference prognostically?  risk-wise?  what would an insurance company look at in terms of difference? 

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Anonymous's picture
Anonymous
Replies 11
Last reply 1/30/2013 - 11:29am
Replies by: POW, Anonymous, lou2, Janner, Fen, Harry in Fair Oaks

can Stage I people donate blood?

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DeniseK's picture
Replies 5
Last reply 1/30/2013 - 11:16am
Replies by: Anonymous, DeniseK, bikerwife

Hello Again,
Just found out some very helpful information.
First if all the American Cancer Society offers some great programs for assistance. Wigs, support groups, mileage reimbursements for anything to do with your cancer, and lodging. The number I have to call is for Calif but she said they help nationwide 1-800-395-look.
Also there's the Lazarex Cancer Foundation that helps stage IV patients in clinical trials with lodging, gas, airfare, etc. This is great for those of us who need to travel for trials. You wouldn't be limited to what trials you could do. I don't know all the details but their website is Lazarex.org and their number is 877-866-9523. Hope this can help someone.
Denise

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

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Replies by: Anonymous

We have done radiation on the tumor on his back, radio-surgery to the tumor in his brain, been waiting to hear back for 2 weeks on the B-raf mutation and possible going to do IL 2 in a week. Anyone been on this road and have any advice??? So far the side effects are, sore esphogus and difficult swallowing and burping and since there are liver spots, really uncomfortable around the liver. He also can't eat a lot at one time, since this makes the liver uncomfortable feeling worse. Advice or personal stories of what has worked and what has not worked would be most helpful. Thanks.

one day at a time...

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buckytom's picture
Replies 8
Last reply 1/30/2013 - 12:43am
Replies by: JerryfromFauq, buckytom, Anonymous, Wolverine, Phil S, Janner

Recently diagnosed with melanoma, found in lymph node in right neck. After PET Scan and visit to dermatologist no primary found. Had neck dissection on 1/21/13 - one additional lymph was found with melanoma - all positive...right? Refferred to radation oncologist (after dealing with my surgical oncologist and consultation with medical oncologist) and he says the primary may be in my eyes or in my throat (mucosal). I have absolutely no symptoms in those areas.

So - does anyone have any experience with this type of a diagnosis? After the surgery it was sounding like it was limited in its spread and now this. I am very confused - any input or experiences would be greatly appreciated.

Thanks!

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POW's picture
Replies 8
Last reply 1/29/2013 - 11:43pm

There is something I thought I should mention-- it may be something and it may be nothing.

My brother (Stage IV with multiple mets including the brain) was taken off Zelboraf in early December because his tumors were becoming resistant to the treatment. By early January, his tumors were coming back fast and he had 4 new, small brain tumors. His medical team was very ambivalent about giving him ipi because he was already very debilitated (could he tolerate the side effects?) and because ipi takes months to work (would he survive long enough?). Eventually they decided to go ahead with the treatment because my brother really, really wanted them to try. He had one infusion and 3 days later developed severe neurological symptoms and was rushed to the ER. The oncology team decided that that's the end of ipi for him. 

The thing that surprised me is that his oncologist (a melanoma specialist) was wondering if the ipi caused the rapid onset of the neurological symptoms. Frankly, that never occurred to me because 1) I knew my brother's tumors were growing so the onset of symptoms didn't surprise me, and 2) I know it takes ipi a long time to work-- why would he have problems so soon? However, it is true that in many cases, when ipi does work it appears to make the melanoma tumors larger, at least initially. The activated T-cells can surround the tumor and start attacking it so the tumors APPEAR to be growing at first, but they aren't. I think the oncologist was wondering if such a thing happened to my brother's brain mets. 

As I say, my brother's reaction probably has nothing to do with ipi-- it's just the normal disease progression that coincientally happened 3 days after ipi. But since ipi is a new treatment and doctors are still learning new things about it all the time, I thought I would mention it. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/29/2013 - 10:20am
Replies by: Anonymous

I have received many biopsy report before but this one I am having trouble decoding.
The biopsy ......... is an inflamed compound nevus with partial dermal regression.
Any help would be appreciated.

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Sharon's picture
Replies 3
Last reply 1/29/2013 - 9:22am
Replies by: Annemarie, Mandi0280

My husband had his last treatment at least that's what we expect yesterday. He will see the doctor again in three weeks don't know for sure what they will say at that time.  We have been very thankful that so far diarrhea and some stomach discomfort with some bleeding (but that was all handled with some acid reducer) is all the side effects he has had. We value this sight for all the information so many of you have given lets all continue to pray for one another. 

God, Family, Friends and Dogs ~ it's all that really matters!

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sheri47's picture
Replies 5
Last reply 1/29/2013 - 12:31am
Replies by: meeshka6059, Anonymous, CateB, POW, vicuk

Hospice said 2 weeks tops left for my mom at this point praying for a peaceful passing , damn mm

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momreader's picture
Replies 2
Last reply 1/29/2013 - 12:26am

My father's melanoma has unfortunately spread to the liver, lungs and bone, in addition to still being in the original site in the foot.  Does anyone know of any late stage clinical trials that might be available?  I have heard there are some specifically to late stage melanoma. His doctors are starting him on a new round of chemotherapy again and radiation for the foot, but he really needs a systemic treatment.   He received Yervoy and MDX1106 in a clinical trial last year but that didn't work at all, and then he was excluded from future trials b/c his creatinine was affected.  He received chemo and an isolated limb infusion.  Nothing worked.  As you can imagine, we are all in shock and desperately seeking another opinion.  Do you know of anything that might be out there?  He is currently getting treatment from Sloane Kettering.

Thank you.

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