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

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bikerwife's picture
Replies 3
Last reply 1/29/2013 - 12:25am

Lynn has 12 new brsin lescions. Gamma knife on Feb 4. body scan on the 13th. But im afraid z has stopped. With brain this bad there may be nothing else rfor us. 

What God leads u to he will. Lead you through

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buffcody's picture
Replies 3
Last reply 2/2/2013 - 9:29am
Replies by: buffcody, awillett1991, POW

I've had metastases to the lung and brain so far. All have been treated or removed.   Just had a PET scan done yesterday and won't see my oncologist for my results till next Wednesday, but an "inside source" who got a look at my scan report says that there is a suspicious marble-size tumor on my left hip accompaied by bursitis.  Anyone know anything about mets to the hip?  I don't even know if they are talking about the hip bone right now. I'm so bad with anatomy that I am not sure whether when someone tells you that something is on the hip that means the hip BONE or not? 

Not happy, of course, with the presumed news. I've been on ipi since October 30 with fourth infusion over three weeks ago.  No other body mets supposedly when I went on ipi and the brain mets were zapped 7 weeks in.   Am happy there was nothing suspicious besides this showing up in my first PET in 3 1/2 months.  I have had left leg pain for a few months, before the last PET scan in October, that I was receiving physical therapy for and baffled two therapists.  But why no sign of this tumor before the last PET scan? Anyway, I won't jump to conclusions but am interested since I know what I know in learning more.

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shep's picture
Replies 5
Last reply 2/1/2013 - 1:33am
Replies by: JerryfromFauq, shep, POW, Janner

My daughter's biopsy came back as melanoma 1/22/13.  Her dermatologist told her it was 2mm deep but had her schedule a surgery to remove more with a surgeon. This procedure is to take place 2/7/13 along with a radioactive 'tracer(?)' test, I guess, to find out if it has metastized? Did the dermatologist ask her to see a surgeon because it could be deeper, or is this just a normal practice? Her appointment today with surgeon left us with more questions. He will be taking a 'diamond' tissue removal instead of 'circular'. This has no meaning to us, and she has not been 'up' to asking questions yet... thanks for any help!!

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Hey People,

Just saw this article about how injections might soon be less poke-y. My first thought, bizarrely, was that I hoped to have cancer long enough to experience these awesome new injections. My second thought was that was first thought was way stupid and that I don't want any more cancer or injections, needle-free or otherwise. Still, this could be very helpful for those of us who are getting daily blood clot injections, and if they could manage to draw blood with them that would be pretty excellent as well. Anyway, here you go:

 

http://health.yahoo.net/experts/dayinhealth/new-laser-device-delivers-ne...

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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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TAC's picture
Replies 2
Last reply 5/18/2013 - 8:44pm
Replies by: kylez

Haven't been here in quite a while. Am Stage IIIb and have been for almost 12 years in spite of 6 recurrences..all surgically removed..all on the skin or just underneath. Have had 8 surgeries, 4 skin grafts, 2 sentinel node biopsies, chemo (interferon), radiation, a vaccine and then Leukine for 8 years. Fortunately none of the recurrences were in organs. I did have renal cell carcinoma (kidney removed) and in 2008 had adenocarcinoma (lung cancer and upper left lobe removed....I don't smoke). Been quite a journey in the cancer world but so far so good.

Chicken Soup for the Soul was soliciting stories for their Cancer Book. So I submitted a story called The Room of Hope, my story in the chemo room. It was included in the book. My view of the chemo room was and is that it is a place where Hope lives so I wrote it from that perspective. If you are interested in reading many good, hopeful and yes, sad stories, get the Chciken Soup for the Soul - The Cancer Book. My story is one of them.

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karebear1905's picture
Replies 4
Last reply 1/25/2013 - 9:38pm

I just finished an ippi treatment for a clinically trial I am on. With stage 3, I am always worried about results. I had my CAT scan done also. The scans went smoothly but a doc who read the scan indicated I had a 4cm growth in my right abdominal. But my onc said he did not see anything in the scan and not to be worried. Should I be worried?

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Amanda's picture
Replies 3
Last reply 1/25/2013 - 2:28pm
Replies by: Owl, Amanda

So, my boyfriend has been trying to get into the Merk Pd-1 trial at UCLA , and were told once his scans were done, that the radiologist found something in the brain,and it needed to be compared to his previous mri's to make sure it wasn't something new.  It took two weeks to get them the disk and for them to compare.  

The doctor sent back an email saying the scans were compared and that if we could meet with him because ''We need to discuss the results and decide how to proceed.''

I'm very upset, since i was hoping for an all clear to start the drug...now it sounds like (to me) that it's not going to happen based on new brain lesions.  any opinions on the wording of his email?  Or are we probably disqualified?

I replied to the email asking straight out if we were disqualified, and i'm waiting on a response...

thanks- Amanda

"Give thanks in all circumstances"

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sjl's picture
Replies 6
Last reply 1/26/2013 - 10:38am
Replies by: Jim M., lou2, NYKaren, Tina D, jcmp

I've posted on here a number of times about my husband's fantastic response to carbo/taxol but it has quit working.  He's developed a new tumor on his neck and one other that had been shrinking is growing again.  He was given chemo in the beginning instead of Yervoy because his tumors were so agressive that there wasn't enough time to try anything else.  He needed a quick response and he got it and continued to respond extremely well until a few days ago when I noticed the new growth.  The chemo began in August.  He's not eligible for a clinical trial because of a second primary lung cancer.  So, for those of you who have been or are on Yervoy, what can he expect?  From what I can gather, it may take awhile for us to see results and I've read about the possible side effects.  First, we have to get it approved by our insurance company.  We have Highmark Blue Cross Blue Shield PPO.  Anyone know if they cover it or not?  We were told that he could continue to work and so on as usual.  Do most of you find that to be generally true?  And do you get good results with it?  There just don't seem to be a lot of options for him.  If this fails they said possibly more surgery or radiation.

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POW's picture
Replies 3
Last reply 1/25/2013 - 5:15am
Replies by: Owl, aldakota22, Linny

My, oh, my! What a wild ride this melanoma is!

After being admitted to hospice in-patient last week, my brother's condition has improved markedly due to dexamethazone treatment. Now he is too healthy for hospice and we are trying to find him a nursing home placement. Dexamethazone is not a cancer cure, of course, so this reprieve is temporary. But as Mark Twain said, reports of his death are greatly exaggerated at this time. The family is delighted with his improvement, but dreading the next set-back. My brother, on the other hand, is stil convinced that he can "beat the beast". What a crazy disease this is! 

If anyone is interested in this cargiver's feelings about this emotional rollercoaster, I did post about it on the Off-Topic forum. And so we continue the journey. I'll keep you posted about developments.

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dflohr's picture
Replies 6
Last reply 1/25/2013 - 11:38am
Replies by: Ali, NancyGM, Marcia1, Anonymous, POW

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

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dflohr's picture
Replies 0

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

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Anonymous's picture
Anonymous
Replies 10
Last reply 2/26/2013 - 10:40pm

 

 

LISA LYNN SCHMIDT (nee BLACK) With great sadness we announce the passing of Lisa, who courageously battled with Melanoma for the past 2 years. Lisa passed away peacefully at home, with her family around her on Sunday, January 13, 2013. She is survived by her loving and devoted husband, Richard and her beautiful little daughter Isabella, just 3 years old. Lisa's loss will be deeply felt by her mother Linda Smeaton, her father Welsey Black and her brother Jared Black. She will be sadly missed by her in-laws, Margaret and Robert Schmidt, Rob and Sarah Schmidt and their sons Tyler and Cameron. Lisa will be fondly remembered and sadly missed by her aunts, uncles, cousins and the many friends who supported her throughout her illness. The family is so thankful for your friendship and love during this difficult time. Visitation will be held at the Visitation Centre in Mount Pleasant Cemetery 375 Mount Pleasant Road (east gate entrance) on Saturday, January 19th from 10:30 a.m. - 12 noon followed by a celebration of her life in the chapel at 12 noon. In lieu of flowers, donations in Lisa's memory to the Princess Margaret Hospital Foundation for Cancer Research or the Temmy Latner Centre for Palliative Care would be appreciated

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