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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MRFUser2011's picture
Replies 7
Last reply 6/27/2011 - 10:02am

Hi All, I have quit visiting this bulletin board because I find it just takes too much of an emotional toll on me.  However, because I have GOOD news, I wanted to take a minute and share it.  The reality of melanoma can be terrifying so I think it is important to share when we have positive news.

My original Dx as Stage III was in 4/08 and was followed by invasive surgery.  I was clear on all my scans until I had small nodules first appear in my lungs on PET/CT in 4/10.  In 2/11, I had one nodule removed via VATS from my right lung and in 4/11, had the other removed from my left lung via VATS.  I won't say it was easy or without pain, but I will say that here I am 10 weeks post op from my second surgery living a relatively normal life again!  My PET/CT of two weeks ago came back clear.  : )  

I want to share something that has for me been life changing.  After my surgery in 4/08, I lived in constant fear that the melanoma would recur.  I had a very bad story in my mind about what that would mean for me and my family and I wasted a lot of time dwelling in fear as a result of that story.  As it has turned out, I did have a recurrance and yet it was completely treatable and I am here to continue on with my life.  I am no longer terrified of melanoma and I no longer waste time worrying about it coming back.  I am doing what I can to live a healthy life and will take life one day at a time.  

May blessings of wellness be with you, Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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Shelly in Switzerland's picture
Replies 2
Last reply 6/27/2011 - 9:54am

I am wondering about side effects of the STR. I have been wheelchair bound ever since the
WBR the middle of of March.
I begin the linac treatment (STR) this week, 5-10 doses. My left foot does not cooperate at ALL!

I want to fly to Seattle. Anybody out there who has regained use of their limbs?

Basically I am wanting to know length of recovery time after STR.
Am I crazy?

Shelly
There is no will but God's will. Today I seek his peace.

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Suzgolden's picture
Replies 9
Last reply 6/27/2011 - 12:38am

Any opinions on vitamins? I am not a vitamin taker but would like to start taking some before I start any kind of adjuvant therapy. I am reading about Niacin, CoQ10 and Curcumin/Turmeric.

Whatever You Are Be A Good One -- A. Lincoln Right now I am a FIGHTER!

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Hi Kevin

I was just wondering how your treatment is going on, hopefully still well? :-)

In case you´re not satisfied with the effect of your therapy, have you considered Ipilimumab?

It seems that my wife is a complete responder, thanks to Ipilimumab (and her positive mind).

I wish you the very best fellow warrior.

 

kind regards

willtolive

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/26/2011 - 5:32pm

If during surgery while cutting out a tumor with wide margins, the surgeon "unknowingly" cuts into another tumor and only half the tumor is remove because it was at the wide margin confirmed by a pathology report , can anyone speculate or have knowledge of what happens to the open, penetrated cancer tumor left in the body. Do cancer cells fload into the blood/lymph system because the tumor has been penetrated? Your opinion would be appreciated. This scenario has happened to me and I am am trying to deal with it.

Thank you for taking the time to give me your  opinions

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mother-to-be's picture
Replies 12
Last reply 6/26/2011 - 3:59pm

Hi, I was recently diagnosed with superficial spreading melanoma on my upper left arm.  Breslow 1.1m, with ulceration and a high mitotic rate.  Last Friday, I did the SNP which initially came back negative.  The pathology report came back yesterday with 2 nests of activity, the largest one is .25mm, so it's very small.  I'm seeing an oncologist today and the cancer board meets on Friday to discuss the report and treatment options. I'm 40 years old and 7 (30 weeks) months pregnant with my first child.  

What does this mean for me?  I don't have a stage yet but from what I'm reading on the internet it may be a stage III.  Please share your knowledge and advice.  Thank you in advance.  Michelle

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triciad's picture
Replies 1
Last reply 6/26/2011 - 1:05pm
Replies by: carol b

I was just wondering if anyone has heard from Carol B.  She's in my prayers, but I haven't seen anything about her lately.

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bball's picture
Replies 11
Last reply 6/26/2011 - 11:18am

Most discussions I have seen or to do 30 day interferon vs. one year. Two onc have reccomended to me to watch and wait instead of interferon.

I am 2a but it was 3.4mm ,nodular,and high mitosis. I also am 4 months from diagnosis and still not sure I am doing the best for me. Other than the mel I am very healthy. Thanks for any inpiut. Also has anyone done vit C IV?

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I am hoping to find someone who has had a similar situation. My precious 11 year old little girl has been seen by 2 dermatologists (one was for second opinion) for a small black irregular bordered lesion onher lower left eyelid-where one would apply eyeliner. Due to past photo's we know that the lesion came up in the last 28 days. The first Dermatologist terrified us all because she had the whole dermatologist office come in and "look" at the lesion. She (as well as the rest of her colleages) informed us that this lesion looked very suspicious for melanoma and it needed to be fully exised ASAP. Second pediatric dermatologist said the exact same thing. She is scheduled to have it removed this Wednesday. I would like to insert a picture but I can't get it to work. Any others have any similar situations?
Susan

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Lisa13's picture
Replies 3
Last reply 6/26/2011 - 7:20am

9 days ago, I started my adventure with dacarbazine.  Other than 2 pretty bad days, this drug is easily tolerated.  I go out everyday and play with my daughter and still have energy when I come home to clean house.  The onset of symptoms can begin 5-7 days, so I think I've experienced the worst of it on days 5 & 6. If this drug work for the mets in my lungs, I could tolerate this for months.  I know this is not a favourable treatment, but it works for some people otherwise they wouldn't be using it at all.   No treatment for melanoma lasts forever, so if that was to buy me time until I have to use something else, I'll take it anyday!

I hope to be able to post a success story as I've seen 2 other people now post based on this drug.

Best of luck to all of you!

Lisa

Many impossible things have been accomplished for those who refuse to quit

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dani_elle's picture
Replies 5
Last reply 6/26/2011 - 6:57am

Hello Everyone
Im feelin the need to vent:
Well my husband finally went into surgery on Tuesday For the superficial Lymph node dissection, in which he also got a rotational flap from his calf to cover up his heel. Wellllll Im a bit frustrated For soo many reasons. Ive been trying to get ahold of the oncologist. Miguel had an appointment yesterday the 23rd But since Hes hospitalized he couldnt go so ive continuosly asked nurses to page her & see if Maybe It was possible She could come up to the 4th floor... Literally 5 min away... so i could get Some questions answered. And We have yet to hear anything!! I dont know whats worse.. The cancer part...or not knowing whats next!
Then i was told that if i went to MD Anderson there would be an issue with the no insurance deal. My husband doesnt qualify for medicaid because of the fact that he does not have a social and honestly it breaks my heart to know and be told that its very likely he may not even be eligible for clinical trials. Doesnt sound very ethical to me,but im going to keep on trying and asking around. Social or no social... He is a human being before anything else.
And to top it off today the plastic surgeon came in concerned about the flap over my husbands heel. It seems to be slowly dying so they began a leech therapy (kind of gross i know, but we actually think its pretty cool:) Im crossing my fingers that the leeches will make a difference. I know we still have a LONG way to go in the healing process, but it sure would make a couple of us glad if this procedude didnt fail on us!=/

Thnks For Reading.

-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

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Boos Mama's picture
Replies 5
Last reply 6/25/2011 - 5:55pm
Replies by: Anonymous, Ranisa, DeniseK, Boos Mama, MichaelFL

I found a Melanoma last year, 2010, when I was pregnant with my son. It was early, in situ, minor surgery, no big deal.
My sister and my cousin have also had Melanoma. Sunday night, 6/19 I found a mole on the outside of my knee that I know had not been there. It's about the size of a pencil eraser, more red than brown and slightly raised. Last night, Friday I found another about five inches away almost identical. I know it had not been there. I also had some numbness in my toes recently that I just attributed to my migraines, probably a coincidence.

It's Saturday. If they are fast growing melanoma, they are growing really fast. I have had the service page my dermatologist but so far no answer. What would you do???????

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/25/2011 - 5:02pm
Replies by: boot2aboot, Anonymous, lhaley, MaryD, Carol Taylor

Hi Everyone,

I am new to MPIP & this is my first time posting.I am stage 3. A few weeks ago, I had surgery to remove a 3rd recurrence in my thigh.  The surgeon got some clear margins but not  the lateral margin. Apparently, he could not see a "satellite nodule" at the lateral margin.

The pathology report stated " a satellite nodule present at lateral margin". I contacted the pathologist to inquire how large was the satellite node. The pathologist told me that the nodule had been "cut through" and that the nodule was 2mm but he could not tell how large the other side of the cut tumor nodule was that remains in my thigh.

I am devasitated that the satellite nodule tumor was cut through & remains in my thigh. I can only speculate that melanoma cancer cells from this tumor are now floating in my thigh and into my blood/lymph system because it was cut & did not remain contained within clear margins

There are so many of you experienced & knowlegeable about melanoma, surgery. treatment, etc. so I sincerely would appreciate your opinion about the significance & ramifications of the satellite nodule tumor being cut through.

Am I overacting that hat melanoma cancer cells from this tumor are now floating in my thigh and into my blood/lymph system???

Thank you so much for your help.

James

 

 

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Nicky's picture
Replies 3
Last reply 6/25/2011 - 10:47am
Replies by: jimjoeb, Nicky, Carol Taylor

Hi everyone, well I was admitted to hospital to get a wide excision on the melanoma in situ on the right upper back and fortunately the surgeon discovered another suspicious mole on the left upper back which has been excised.  so a little bit sore but recovering well from both surgeries.

This is now my third melanoma primary over 11 years.  I am still currently Stage III and I hope to remain that way.  It certainly gives you a reminder not to drop the ball when it comes to regular check ups.  It was six years since my last melanoma and I still feel that my survival has been mostly due to early detection and being proactive with health professionals

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renakimu's picture
Replies 2
Last reply 6/25/2011 - 10:43am
Replies by: jimjoeb, MichaelFL

hello and goodmorging for everyone

does anyone know about homeopathy and mel?if  it is succeful?if someone know smthng pls help

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