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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Linda J's picture
Replies 6
Last reply 1/10/2011 - 7:36am

I am starting the braf/mek combo trial on the 19th with should really give me some peace and comfort but I am going crazy with stress. I have all of the scans within the next 10 days and I'm terrified with what they will find. What if they find that it is everywhere? I have had about 10 subqs pop up in the last 3 1/2 weeks. I can keep myself from feeling my body - I poke and prod all the time. I don't know how I'm going to keep calm from now until next Wednesday. I know it shouldn't be that big of a deal when I feel a new subq but I panic with each one. I've got pains in my right side and I worry that it is all over my liver, which again shouldn't be a big deal because we are going to kill whatever might be there starting next Wednesday. But I'm going crazy with anxiety. How am I going to make it until the 19th???
I know that everyone here understands this kind of stress and fear. How can I get my emotions back on top and feel like a strong fighter instead of a helpless victim - despite what else might pop up???

Linda J

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Tracey FL's picture
Replies 7
Last reply 1/9/2011 - 10:02pm

I really want to thank everyone for their letters.  I read them to my mom and she felt better and encouraged.  This has been such a helpfull tool.  We felt that we had been beat, but not now!!!!  The body scans were so bad that they took mom off chemo.  We are looking at the ipi trials now.  This will be her third trial and we will keep going.  I will more than likely be going in for a back surgery myself ( fell and broke both my rods).  I am scared but you guys are my heros and so is my mom.  Keep the faith.

Tracey

mom stage 1V with brain mets, lung, body.

P.S  Mom looks great in her wig, younger.  She sleeps in the terry turban at night very soft and keeps her head warm.

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belindah's picture
Replies 1
Last reply 1/9/2011 - 9:21pm
Replies by: Janner

Hi,

I have diagnosed with Melanoma stage 3 in 2007. My primary mole was on my left knee, I had micro metastases  in my left groin, all was taken away and I was doing great. Got Interferon and remained clean.

This morning I got scared after I saw what looks like a bloodblister on my right top shoulder with a very very tiny blood blister righ next to it. The bigger "blister" has a dark round circle around it. It is not itching and I know that I will see my primary doc tomorrow and ask him to take a look at it, or even better to cut it out.

In mean time, could this Melanoma be back, does it happen like this???? OMG I am so scared right now I can't even think straight....my little ones and husband....I do not want to tell them that its back!!

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Anonymous's picture
Replies 4
Last reply 1/9/2011 - 8:12pm
Replies by: Anonymous, Joan, mkummerle

Does anyone know what information insurance companies are allowed to pass on to a company about the diagnosis, condition, or treatments that its employees have received?

Specifically...I want to know...if I choose not to discuss my melanoma diagnosis with my employer, will they just find out anyway from the insurance company?

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jag's picture
Replies 14
Last reply 1/9/2011 - 6:13pm

Have been having a lot of neck pain lately, and it has radiated up into my head.  Despite my wife telling me I spend too much time on the internet, I feared the worse, and worry about melanoma.  Got my MRI today and my brain is disease free, actually much improved from September.  If you go through my profile you will see that despite my last 2 brain surgeries, I have been disease free since March of 2008, which would mean that I am disease free for 2 years and 10 months (almost 3, but I don't like to assume anything with melanoma) needless to say, I have to cut down on computer time.

Insert Generic Inspirational Motto Here

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mimi0201's picture
Replies 1
Last reply 1/9/2011 - 3:34pm
Replies by: jim Breitfeller

Do they always go hand in hand?  My husband is Braf negative.  Is he excluded from Mek trials? 

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Melanoma Mom's picture
Replies 12
Last reply 1/9/2011 - 2:53pm

Our 14 year old finished the month of high dose Interferon yesterday. Yay! He did very well, all things considered.

On Monday he starts training and use of the needles to inject the lower- dose Interferon. I was surprised and disappointed to hear that he has to do TWO shots each time to get the correct amount injected. Have others had this situation? He is 6 feet tall and I know it is a ratio of medication using your weight and height. From my understanding, the use of "epi-pen-like" Interferon  injections were discontinued in 2009 so we will have to mix the medication ourselves. 

Just bummed for him .... expecting three shots a week and how we have doubled that. sad Please let me know if you have any further info regarding this. Our local children's oncology unit is great, but the Interferon is an unusual drug for them to deal with, since so few children get Melanoma. I'm wondering if I should contact our main oncologist at Dana-Farber?

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Vermont_Donna's picture
Replies 2
Last reply 1/9/2011 - 2:43pm
Replies by: Vermont_Donna, Allen C

Hi,

I had to quit work last month and decided to pay for ongoing private health insurance through COBRA at the cost of $654 a month for me and my two kids in college. We have a $10,000 family deductible. I also have medicare, part A and part B. I have learned that if I let the private insurance go I can still sign up for part D even though the open enrollment period has ended. My question is this: Will medicare cover all the neccessary medical care I need for melanoma, that I am used to having? Ie PET/CT scans when the doctor requests them (I have had frequent given my history), and I am in the middle of the IPI trial (the drug is covered by BMS, the pharmaceutical company). What if I end up having to do bio chemo? What about other treatments, or second opinions (they are still talking leg amputation). What about leg amputation?? I called my medical center financial office and they said to call the "estimate line" and tell them what procedures I specifically wanted to know, they would then give me the procedure code and I could then call medicare and ask them the specific procedure code. Ok I am doing that. But I dont know ALL the procedure codes to ask, or what I would maybe need??

 

I would like to hear from people who have only had medicare and what their experiences have been or anyone who knows about this such stuff!!!

Thanks!!!

Vermont_Donna

stage 3a

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hi,

A friend sent me an article about "Melia Supreme" as her chiropractor has her using it for her specific health problem (not cancer), and anyways shje saw in the accompanying literature that some people use it as a topical agent against skin cancer. Here's what an online page said:

 

Melia Supreme is powdered neem leaf (Melia azadirachta) put into vegetarian capsules with nothing else added.

Melia, like Morinda is an amazing plant that has been used therapeutically in India for at least 2,500 years. The word neem is reported to come from the Sanskrit language and roughly means “the healer and illness reliever”. Our main reason for making melia available is that it is another superb broad spectrum anti-microbial showing effectiveness against various fungi, bacteria, parasites, virus (including herpes), and spirochetes. It has also been reported that it does not harm beneficial intestinal flora. Melia has been shown to be hepato-protective, stimulates T-cell production in times of infection, and blocks pro-inflammatory prostaglandins. Melia also possesses small amounts of catechin and quercetin- both having anti-inflammatory and anti-histiminic properties.

In Japan, Melia has been used for cancer treatment of solid tumors as well as using it topically on skin cancers. It has been used successfully to treat malaria as well as vitiligo, and has been reported to increase brain serotonin levels thus having anti-anxiety properties.  Melia has also been shown to lower cholesterol levels. In insulin dependent diabetics, melia has reduced insulin requirements up to 50%. One interesting effect is that without decreasing libido or sperm count, neem has been used effectively as a male contraceptive. In parts of Africa women use it also for the same purpose (so you may not want to use it if you are trying to get pregnant). I could keep going but you can see how it merits its name “the healer and illness reliever”. To read more about neem, NEEM INDIA”S MIRACULOUS HEALING PLANT by Ellen Norten, and NEEM THE ULTIMATE HERB by John Conrick are very informative.

Not that I am going to run out and order this, but was just wondering what people have heard or if anyone has tried this? I didnt see any place where you can get it as a topical application...only as an essential oil and oral supplement.

Thanks, 

Vermont_Donna

stage 3a

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Sherron's picture
Replies 3
Last reply 1/8/2011 - 11:03pm
Replies by: Lori C, SusanE

It's under Sherron  and I see mispelled words.....I don't even care....It was hard to do the update....It's hard to come back here.  But, I worry about the other one I have grown to care about.  I wish you all the very best in your fight.

Take Care,

Sherron, wife to Jim FOREVER

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EricNJill's picture
Replies 9
Last reply 1/8/2011 - 2:36am

Eric has decided to donate his body for research to a local medical college.  After reading the article in the New York Times, we wondered if there was some place that he could donate his body where it would specifically be used for Melanoma Research.

Thanks, JillNEric In OH

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carol b's picture
Replies 7
Last reply 1/8/2011 - 2:30am

I start Interluekin-2 next tuesday at the Baptist Memorial Hosp in Memhpis Tn..I dont qualify for surgery because the tumor and lymphodes are matted and to close to the nerves and blood vessels under my arm and in my neck.. Can anyone tell me about what my first day will be like with the interluekin-2? thanks in advancesad

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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KellieSue's picture
Replies 5
Last reply 1/7/2011 - 11:42pm

Well, I've decided to start IL-2 at U of Iowa on Tuesday(the 11th.)

On a better note I'm headed to Vegas this weekend with the girls. Short notice, expensive tickets but who cares right?

Kellie(from Iowa) Stage IV, hopefully NED after IL-2

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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budspal's picture
Replies 6
Last reply 1/7/2011 - 3:15pm

recently diagnosed stage 4 and looking for feedback re side effects from the ipi ....any info greatly appreciated. 

 

 

 

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Anonymous's picture
Replies 2
Last reply 1/7/2011 - 10:21am
Replies by: Janner, Cynthia C

Can Anyone Explain This To Me Please.

 

1. Histolic Sections Show A Deep Scallop Biopsy.  There Is An Isolated Neoplasm Composed Of Atypical Melanocytes In Sheets, Nests, Trabeculae And Single Cells Within The Dermis. There Is Also An Intraepidermal Component Of Irregular Nests And Single Cells With Pagetoid Spread. The Cark's Level is V, The Breslow Thickness Is Greater Than 4.0 MM (Four Point Zero Millimeters). The Tumor Is Transected At The Base. Regression Is Absent. There Are 60 (Sixty) Mitosis Per Square Millimeter.

 

 

I Am Uncertain What This Means And Am Concerned With The Mitosis Rate. Please Explain Mitosis And If This Rate (60) Is Common Or Bad.

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