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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Cspan's picture
Replies 12
Last reply 6/27/2011 - 9:03pm

My husband was diagnosed in January with scalp melanoma,when they did his PET scan they also found lymphoma (CLL) low grade and except for a few swollen glands- asymptomic.

It was very deep 6mm melanoma but he only had one sentinal node with micro mets. Because radical neck surgery didn't really improve survival and the interferon offered didn't really show much evidence of benefit we opted for watch and wait.

He went to an intergrative medicine specialist and has been working to boast his immune system naturally. Nothing crazy just organic foods, fish oil, green tea etc. His last bllod work looked great LDH went down from 200 to 143

Last week he found a lump at the sentinal node incision line...it came back positive. We are having a really hard time and confused....this hasbeen the worst weekend of our lives. I don't know where to turn...should we go to a melanoma center? We live in Portland Oregon. Also, I don't know what to do for him emotionally and I guess right now this is our worst problem. He isn't sleeping or eating much and has a racing mind. He is fixated on getting his affairs in order. Am I in denial?

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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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Nebr78's picture
Replies 6
Last reply 6/29/2011 - 3:06am

I have been taking radiation for a mass that has entered my spine.  Last treatment about June14.  Two days ago I started  having pain in lower back and it has gotten worse.  About a 10 on a scale of one to 10.  I see doctor on Monday.  I  am taking Morphine and Lo-tabs for pain.  It don't quite do it.  I fear that the radiations didn't kill anything and it is in spinal cord.

Has anyone had this situation?

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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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Hello again Friends,

Here is a brief update on my stage IV melanoma journey. You can read more details in my profile which I just updated. I recently completed the second pass of the 10 week Ipilimumab (now Yervoy) clinical trial, and unfortunately the chest wall tumor continues to grow. Maybe in hindsight that's good news as a prerequsite to enter the new t-cell targeted therapy clinical trials now in progress at the National Institute of Health in Maryland require a minimum of 2 cm. (mine is about 3 cm.). Dr. Steven Rosenberg is heading these trials, and my oncologist has submitted me as a candidate. I am waiting to see if I will be accepted into the program. You can learn more about these clinical trials by viewing the profile of Dr. Rosenberg at NIH. I do not know which trial I would participate in as there are 10 listed, but I am hopeful I qualify for at least one of them.

If you have recently participated in one of these trials or are now actively in these trials, I would be interested in hearing about your experience either on the board or via email. I have heard that patients can expect to see success rates of 50-80% vs. the 20% or less of other therapies I have tried and failed. So I remain optimistic and confident that this time the beast can be broken - time will tell. I will post again when I get the much anticipated call from NIH for acceptance.

Thanks and I wish all you warriors and care givers a great day,

Bruce in New Hampshire, USA

Stage 1 - Oct. 2000; Stage 3B - Sept. 2003; Stage 4 - Dec. 2008

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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Anonymous's picture
Anonymous
Replies 24
Last reply 4/10/2012 - 5:57pm

My appt. was cancelled without explanation but that he is not with the clinic.

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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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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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Anonymous's picture
Anonymous
Replies 12
Last reply 7/8/2013 - 3:53am

Hi all. First time poster here, although I've been following the forum occasionally for some time. Perhaps my question is a bit dumb but please bear with me and help me clear up some things. My 70 year old father is a stage IV melanoma victim, with mets in his lungs, liver and lymph nodes. He was first diagnosed in 2009 as stage III and had had subsequently removed his primary tumor and some lymph nodes in his neck.

He was now given a choice of treatment that would consist first of dacarbazine and then of ipilimumab (if necessary, I guess). The thing is, my father is extremely negative towards any chemotherapy and doesn't even want to hear about it. He insists he will beat the disease on his own terms. It's really his body, his illness and ultimately his decision, and I think it ought to be respected, but on the other hand I also try to explain to him that ipi really doesn't work like classical chemo, and that there are many people out there who benefited wonderfully from this drug. He might take my word for it when I present him with some success stories from this website. However, his doctor maintains that the only possible way of treatment is to administer dacarbazine first, and only later ipi.

Is this true? I've read on the Internet that this combination is a standard procedure "one-two" punch, but can't a patient demand to undertake ipi treatment alone if such his desire happens to be? I also find it a bit counterintuitive to administer a cytotoxic drug first, with all its detrimental effects on the immune system, and only afterwards apply ipilimumab, which is then supposed to work through this compromised immune response. Wouldn't a more logical sequence be ipi first, dacarbazine second?

Again, I apologize for my ignorance of the subject. Any clarifications will be greatly appreciated.

I also wish best of luck to all of you battling this disease. Stay strong! Whenever I read a success report, I want to just high-five that person. :)

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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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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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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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DeniseK's picture
Replies 5
Last reply 6/28/2011 - 12:49am

Hi everyone,

I had my surgery and sentinal lymph node disection 16 days ago.  I go back to docs on June 30th.  Since the surgery I've had a chronic headache going through about 6-8 ibu's a day.  It could be from the stress!  My question is more about the pain in my chest.  My tumor/mole was on my upper/inner right breast.  The surgeon took alot of tissue which basically took most of my right breast.  I'm having pains that emminate down into my chest.  Kinda like the pain after the lymph node mapping.  I was just wondering if it was normal to have those pains. 

Thanks for your help on this.  I'm sure I'm normal but just want to hear it from another person who's gone through it. 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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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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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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