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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awg's picture
Replies 4
Last reply 6/21/2011 - 11:21pm

Has anyone worked with their insurance agent to make any changes to existing polices after DX and NED given?

What is the NED period they look at?

Were they willing to work with you (I know most likely at a higher rate)?

 

Thanks,

Allen

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StevenK's picture
Replies 4
Last reply 6/21/2011 - 5:36pm
Replies by: StevenK, MichaelFL, lhaley

I got the report back on the skin that was excised to remove the mole and it says the margins were cleared. I asked if the depth was found to be anything other than the .6mm that the intitial biospsy stated, but the nurse said the report didn't contain any information about depth. This confused me since I thought I was going to learn the definitive depth. I asked to speak to the doctor and was told I would have to wait until the end of the day when he's done seeing patients. 

My paranoia is making me think the doctor doesn't want to tell me the bad news, but it could also be that there is no bad news and that's why he feels no rush to put me before his other patients. He's going to call me, supposedly, at the end of the day, but right now I'm confused. Can I take comfort from the fact that the margins were cleared or is that irrelevant if other factors are bad? I can't wait until I'm finished with this doctor.

Steve

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/21/2011 - 4:10pm

Hello all!  A relative of mine was just diagnosed with metastatic melanoma and our family is trying to put together a care package to send to her.  I was going to fill it with Eucerin lotion (sensative skin), chap stick, mini travel games like scrabble, magazines, preggo queasy lollipops, peppermint tea (for nausea), lemon drop candies, soft toothbrush, sensative skin baby wipes, germ-x wipes....what else could I put in there?  They start IL-2 treatments next week and being so far away I really want to let her know we are thinking of her...I also plan to send up mini care packages for the next treatments...I want to show continued support...is there anything else that you could help me add?  Thanks so much...and any advice would be greatly appreciated!

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My husband got the phone call from the dermatologist this morning... the area that was biopsied from his abdomen is melanoma. "Leaning more toward Stage IV", the dermatologist said.

My husband is a hypochondriac. He blows things way out of proportion. So I called the derm office myself to find out exactly what they said. They've referred us to a surgical oncologist (best one in the area, they said). SurgOnc will be calling us in 1-2 days to schedule consult.

I am NOT a hypochondriac. I typically down-play things, ESPECIALLY because he gets so worked up about EVERYTHING. But this has me quite concerned.

My husband's melanoma is just (so far) in the one spot... from what we understand. I have so many questions... is he going to die? He's only 38 years old. I thought melanoma deaths were mostly related to older people, like in their 70's and 80's? My grandfather had multiple melanomas, but he also had other severe health problems, including dementia, Parkinson's, etc. I thought he died of ALL those things combined. Even so, if he did die of the melanoma, he lived until he was 75.

Am I going crazy here!?!?! We just had a little girl. She's not even 2 years old yet. I'm only 29 and my husband could be DYING?!?! We have two teenage daughters as well...whom we haven't told yet (we're still reeling from the news this morning). I don't know what to do! I'm just praying & trying to entrust all of this to God. We have no answers until we meet with the SurgOnc.

Any help anyone can provide would be MUCH appreciated. Thank you.

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Shelby - MRF's picture
Replies 1
Last reply 6/21/2011 - 9:09am
Replies by: Carol Taylor

I just wanted to thank you for reviewing your doctor(s) on Avvo.com in May.  Because of you, Avvo donated over $4,000 to the MRF!

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TracyLee's picture
Replies 8
Last reply 6/21/2011 - 8:39am

Hi y'all,

Second ipi on Friday. So far, it's been smooth.

My neck is VERY lumpy with nodes. I choose to believe they are shrieking "no, no, I"m dying" as ipi kicks melanoma's butt!

Other than some moderate sleep issues, I'm feeling well. Husband is still having issues (ear infection now), which makes me smile. Who's the sickly one?? He's basically been sick since Memorial Day!

Praying that everyone who is doing ipi, scans, IL-2, interferon, etc has excellent news and no side effects. We can do this, YES WE CAN!

And, as a side note, I really enjoy the "small" stuff a lot more these days. Ballet recitals, kids starting their first jobs, Father's day. I'm just happy to be here for all of it.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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EricNJill's picture
Replies 16
Last reply 6/21/2011 - 8:05am

Eric has been losing the loss of his legs and so his Oncologist sent us to the ER last night.  We came home so he cold be comfortable.  He has multiple bilateral cerebral tumors that are hemorrhaging and several cerebellum tumors that are also hemorrhaging. He also has a spinal tumor at C7, T7, and T8 and the cancer in the vertebrae that they found on Wednesday has gotten worse and is putting pressure on his spinal cord now. He has been sent home with Dilaudid so that he can be free of pain as the swelling increases in his brain. These tumors can not be treated with surgery and with the extent of his disease, radiation would also not be suggested.  Please continue to pray for us all.

JillNEric in OH

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Hope Returning's picture
Replies 3
Last reply 6/21/2011 - 2:41am
Replies by: Julie in SoCal

Hi, I want to ask a question regarding the Angeles Clinic. If possible please contact me.

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mom3girlsFL's picture
Replies 14
Last reply 6/20/2011 - 3:38pm

I don't know why I keep putting off things my gut keeps telling me to say.  You would think after having been through the melanoma experience you would say what you need to say, when you need to say it.

I have followed your story behind the scenes for a long time.  I have often wanted to log in and send loving thoughts and prayers to you both.  I have watched your videos.  I have cried with you.  I have prayed for you.  I have been encouraged by you.  I have been scared by you.  I have been strengthened by you.

I don't know if either of you could know the depth of emotion you have touched in my heart.  I am sure I am not the only one.  I love you both and have never met you.

I thank you so much for letting me in to your lives through your posts, through your videos.  I have never seen such an amazing couple - the two of you are so truly blessed to have each other.

I am ashamed at myself for taking so long to send this message.

I want you both to know I have been praying for you all along.  I want you both to know you are probably two of the strongest people I have ever encountered. 

Thank you for opening your hearts and lives to me.  You are both an inspiration.  Eric, you are my hero. 

God bless you both.

Laurie 

Do not fear tomorrow, God is already there.

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Hi MPIP Community!  I just wanted to let you know that we will be holding a free volunteer training next month in Denver, CO (July 23-24th). This is an opportunity to come out and meet others in CO who have been affected by melanoma, and are interested in getting involved in our volunteer efforts.

We will be covering, among other things:

  • Fundraising strategies
  • Advocacy 101
  • Working with the media

We recently held a very successful Legislative Hill Day, where we brought volunteers to Washington, DC to meet with their Congressional reps, asking them to support the Tanning Bed Cancer Control Act, introduced by Congresswoman Maloney. Since our Hill Day, five of the members of Congress our volunteers met with have indicated they would cosign. We are very excited about this, and look forward to engaging our volunteers in more and more advocacy work on both a federal and a local level.

This training is a good way to get started if you have an interest in helping us with this effort.

The training is free, and anyone coming in from outside the Denver area will have hotel accommodations provided for them. We can also reimburse for some travel expenses.

You can read more about it on our calendar: http://www.melanoma.org/get-involved/melanoma-messengers-training-denver

Or, please feel free to call me: (202) 347-9675, or email me at: volunteer@melanoma.org

I hope to hear from you!

Best,

 

Mary Mendoza

National Director, Volunteer Services

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ChrisTheWilsonZoo's picture
Replies 1
Last reply 6/20/2011 - 9:57am
Replies by: Carol Taylor

Public service announcement appearing on the Style Network.  Worth taking a look at, it is blunt and to the point.  It uses both words and imagery quite effectively.

http://www.melanomaresearchalliance.org/resources/resources.taf?cat=style

Personally, I would love to see it on prime time on the major networks! 

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

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TracyLee's picture
Replies 14
Last reply 6/20/2011 - 8:37am

Hi y'all,

2nd Ipi transfusion today. Can't come a moment too soon. My neck is a landmine of lumpy nodes, and the left (good) side is now popping nodes too. I'm prayerful that this means Ipi is already kicking melanoma's butt!

This has been a rough week, 2 migraines this week. Can't tell if just "normal" migraines, which I haven't had at all since my surgery 2 months ago, or an Ipi side effect.

Anxious to move on and get this done!

I know several are getting treatments, scan results, etc. I pray for each of us to have nothing but good news and positive outcomes.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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ockelly's picture
Replies 3
Last reply 6/20/2011 - 12:35am

Wanting to be sure my husband is taking the best supplements to potentially prevent a recurrence.  He is taking D3 5000iu, CoQ10 300mg,  Green Tea and Turmeric.  I am wondering if anyone has had a recommendation on Turmeric or Curcumin dosage or a high concentration brand of supplement?  He is taking Gaia brand... 1 capsule is 480mg Turmeric root (36mg of Curcumin).  Also, how much CoQ10 should he be taking?

Any other suggestions.  He is currently in month 5 of Interferon tx.

Thanks

Kelly

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debandmike's picture
Replies 7
Last reply 6/19/2011 - 11:10pm

It was April 18 when Mike started his first series of IL-2. All total for the two weeks he got 19 treatments (12 the first week and 7 the second week). We now are taking our next step to see if the IL-2 is doing its job. Tomorrow scans and then scan results on Tuesday, July 21st. Mike has been feeling well and has been back to work for three weeks. We are hoping and praying for the best of news.

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