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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Blakejj's picture
Replies 1
Last reply 4/28/2013 - 4:21pm
Replies by: 5374brian

 

Hello,

I was wondering if you guys could help with a health insurance question. 

In early 2011 I had a mole removed from my chest that turned out to be malignant melanoma.  Clark’s level II, and Breslow thickness of 0.25mm.  Follow up surgery was a success and the doctor said they got it all.   I have not had any reoccurrences since then.

Fast forward to 2013, and unfortunately I have no health insurance, but now have a job with enough money coming in so I might be able to afford it.  If possible, I would like to purchase it and was looking for guidance on how to proceed as I have been given a lot of conflicting advice. 

If I want insurance now, I have been told by various folks that there are a couple of insurance companies who would be willing to insure me, but most will not.  Thus I should work with a broker to make sure I only apply to the ones who are willing to insure me, as having a denial/rejection for insurance makes it a lot harder to get coverage going forward.  (An insurance broker probably told me this!)  Any thoughts as to the validity of this?  If it is true, which insurance companies are most likely to insure me?  Would future coverage for melanoma excluded (ie they won’t cover any melanoma costs, but will cover other things)?

Alternatively I could wait to 2014.  My understanding is that the ACA says they can’t deny me nor charge me rates any different than their other customers.  Is that true?  If so, could I go to a website like ehealthinsurance, or via a broker, and just apply to the plan I like best?  Is future coverage for melanoma excluded (ie they wont cover any melanoma costs, but will cover other things)?

I understand that the actual execution of the ACA will probably change over the next 7 months, but just trying to figure out things as they stand now.

I am in Texas if it matters.

Any help, thoughts, or guidance is appreciated!

B

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mama1960's picture
Replies 7
Last reply 4/26/2013 - 12:33pm

Anyone have any info on bone mets? Any word on Zelboraf and bone mets? I am braff positive. Any help regarding the pain? Taking 10MG hydracocone every 4 hours, very little to show. Had bone scan yesterday and will get results Monday. Bone met in shoulder showed up in MRI.

It is what it is.

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Sherron's picture
Replies 16
Last reply 4/25/2013 - 10:25am

Hi Everyone,

I will be doing the Melanoma Walk in Dallas on May 4th, 2013 at Bachman Lake in Dallas, Texas.  I am doing in memory of husband, Jim, some of you will remember his story.  And I will be doing for all of you also....If anyone wants to help support me in my effort, go to Aim at Melanoma to make a small donation...Every little bit helps in research and helps to find a cure...It is under my name  Sherron Clevenger.

Take Care,

Sherron, wife to Jim FOREVER

PROFILE  UNDER - Sherron

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mama1960's picture
Replies 3
Last reply 4/24/2013 - 10:28pm
Replies by: gabsound, Anonymous, hbecker

Looks like the monster has moved to bones. Need all info you can send my way. First, what can be done about pain when the hydracodone isn't working. Don't know how much longer I can work. How do you start the disability process?

It is what it is.

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kellygrl's picture
Replies 2
Last reply 4/24/2013 - 9:20pm
Replies by: kellygrl, aldakota22

My husband has been on Zelboraf and brain tumors continue to shrink! He still feels great and is working part time at Lowes to give him something to do. Now for the bad news..... he has had a lump for a month in his neck that is melanoma, but doctors are confident it is localized and with surgery on Mon, he will be ok! So, good news/bad news & weird that Zelboraf still working on brain mets, but this popped up. Oh well, that's our new journey with melanoma. We still keep that Positive Mind Attitude and keep on living!! :-)

Best wishes to you all! Kelly

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/24/2013 - 1:13pm
Replies by: MeNDave, gabsound, NYKaren, Linny

Hi Julie,

 

I was happy to see you posts today. How are you doing? Are you still on Pd1?

 

I am sending positive thoughts & prayers your way!

 

MaryBeth

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aliciajo's picture
Replies 1
Last reply 4/24/2013 - 1:06pm
Replies by: MeNDave

Stage IV melanoma. Zelboraf didn't work. IL2 almost killed him. Now we are going to try Avastin and Temodar together...what to except. Please Help??

one day at a time...

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Just completed around three of BioChemo after receiving good news of no active decease.  So, now the talk is complete round 4 do another PET and if things are the same or better consider removing the tumor on my neck, which appears to be free floating and not attached.  I am with Kaiser and been treated at Riverside Kaiser.  I have had three other tumors removed from different locations, breast, lung and buttocks, but know the neck.   Here is my question does anyone know a doctor within Kaiser who is highly recommended.  I have a couple of names for the South Bay but preparing through research.  I must say I have no complaints regarding the ABC program at Kaiser Riverside.  They have so good to me.

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My husband has been on Zelboraf and brain tumors continue to shrink! He still feels great and is working part time at Lowes to give him something to do. Now for the bad news..... he has had a lump for a month in his neck that is melanoma, but doctors are confident it is localized and with surgery on Mon, he will be ok! So, good news/bad news & weird that Zelboraf still working on brain mets, but this popped up. Oh well, that's our new journey with melanoma. We still keep that Positive Mind Attitude and keep on living!! :-)

Best wishes to you all! Kelly

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swissie's picture
Replies 0

Hello everyone,

I haven't posted in a long time.
Short history, Stage IIIb since July 2009, started double blind trial with 10 mg ipi / placebo in September 2010.
Ended this trial on own request after 8th infusion due to side effects (fatigue and increase of spleen).

All my scans have been clean so far.
Half a year ago, I had a swollen lymph node in my right groin (the original melanoma was on my left knee, the met in my left groin).
Had an FNA which came out as a reactive lymph node.

Last week I had a second biopsy (increase from 2.2 to 3.5 cm), which is declared a reactive lymph node again.
Off course this is great news.

However, there is nothing mentioned about any melanoma marker testing.

Can one say a lymph node is reactive, just based on the kappa-lambda ration of 1.1 :1 and the existance of 66% CD3 positiveT-cells, 27%  CD19 positive B-cells  and the lack of CD5, CD10 and CD23?

It would be great if anyone can explain this (response from my doctor: "I guess if the cell line is clear (all lymphocytic cells) there is no need for melanoma markers").

 

Thanks for your help,
Swissie

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Brendan's picture
Replies 5
Last reply 4/23/2013 - 12:11pm
Replies by: kylez, Brendan, jag

Hi Everyone,

I had a brain met discovered last June (I was NED for 9 months prior). I had GammaKnife to treat (followed by ipi in Sep-Oct) . I then had a craniotomy in Nov to remove the met which was causing severe pain (pathology revealed dead cells and melanoma cells). A recent MRI showed a 16mm recurrence and I begin my CyberKnife on Wed.

Does anyone have any experience with both types of radiation?

Thanks!
Brendan

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Anonymous's picture
Replies 20
Last reply 4/23/2013 - 11:43am
Replies by: dani66, NYKaren, Thandster, Carole K, kylez, Anonymous, POW, Janner, jag, JakeinNY

I had Melanoma Stage 0 in 2012 so am now at higher risk for melanoma I am told. I also have breast cancer stage 1 and there is a strong link between the two so i want to be monitored by a good doctor in the NYC area so i can hopefully catch any other melanomas at stage 0.

I am not sure which hospitals are best at monitoring for melanoma high risk patients in the NYC area. I tried getting in to sloan to see a top doc there for monitoring but apparently i do not qualify becuase i only have stage 0. i don't quite understand this because i would think it is important to catch it early, but i don't seem to be able to find doctors who specialize in melanoma who are willing to monitor stage 0 patients. The dermatologist i am seeing does not seem to be the best and does not really specialize in melanoma. In fact, he indicated that the melanoma stage 0 was nothing on several exams until i requested that it be removed and tested.

So far, i have an appointment at molesafe at NYU which i heard is the only one in the nation, but i was wondering if anyone can recommend a doctor/hospital that is considered good for melanoma monitoring high risk patients. Thank you. 

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Kim K's picture
Replies 1
Last reply 4/23/2013 - 11:18am
Replies by: dian in spokane

Or was it just her spine that was clean.  How is her lung met?  If she is really NED from the IL-2 we need to shout out loud and congratulate her.  Her odds of living another 5 years just shot up if that is the case!  Plenty of time to get that hand of hers back to playing dueling banjos without skipping a beat.

Hang in there Dian!  We are all pulling for you.  You are one tough cookie!

Aloha from Hawaii,

Kim K

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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anon's picture
Replies 12
Last reply 4/22/2013 - 7:37pm
Replies by: parkmk80, anon, Anonymous, Janner

how many moles/atypical moles do people normally have, when they are diagnosed with atypical mole syndrome? i am reading mixed info online. thx!

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