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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Anonymous's picture
Anonymous
Replies 4
Last reply 11/9/2010 - 10:27pm

Hello,

I am a very physically fit 45 y/o male, but I was just diagnosed last week with an Acral Lentiginous Melanoma. In the biopsy it was found to have a 3.7mm Breslow's Depth (Clark's Level IV), but it was not ulcerated and had a Mitotic Index of < 1 per mm2. In my first post-diagnosis exam there were no other lesions and no enlargement of the lymph nodes found.

Next week I will have a sentinel node biopsy performed, along with a wide area excision of the melanoma. The surgeon said they will not bother with the lymph nodes in the knee area, but will focus solely on those in the inguinal region. Also, the surgeon mentioned a plan to take a 2 cm margin out with a skin graft from my thigh to close the defect.

I was wondering if anyone had any advice for me at this point in the process. This feels like a bad dream…no a nightmare.

Thanks,
Mark

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simone's picture
Replies 8
Last reply 11/9/2010 - 9:31pm

So sad to be joining this club...

I have been reading the posts for weeks now, but just finally joining.  So, here's the story.  I am a 37 yr old happily-married mom of 2 toddlers.   The Melanoma bomb hit our lives almost 2 months ago.  I was diagnosed in August w/ Melanoma Stage 1C (1.2mm with mitosis) on my arm and had the WLE a month ago w/ Sentinal Node Biopsy in New York.  Lymph nodes were not involved... thank God.  Then, my Melanoma team  tells me that I should be "focused on survival" for the next 2-3 yrs & need to be monitored for 6-10 yrs due to the mitosis.  WHAAAA?!?!?!?!?!  Needless to say, I almost fell off my chair!!!  I thought my news of lymph nodes being clear was starting to sound pretty good.... well, I don't mean "good" but you know, not "survival" discussions.  Then they told me that we should not pursue having another child (as were in the midst of trying & really hoping for). 

Sounds pretty scary & even scarier when I go online to research more. Not sure what to think.... or which part of this should be keeping me up at night.  Also, I got a second opinion from another Mela specialist & he said Mitosis is only relevant if primary is less than 1mm & you are determining whether or not to do SNB.  Have you heard this?  I have mitosis, which one group seems really concerned about in terms of risk for recurrence.  Other doc said no longer relevant.  What have you heard?  Should I really be "focused on survival" and also halt the baby plans? 

Thank you!  You all seem like an amazing group of people -sorry we have to meet this way!  :)

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NicOz's picture
Replies 8
Last reply 11/9/2010 - 2:29pm

Not around often these days- I've found it's better for my health if I remain only a rare visitor :P

Just a heads up for those interested. Had scan yesterday, am getting organised today, flying back tomorrow and having another craniotomy Thursday (Oz time). Feeling very happy and relaxed about it all. Looks like it will be a re-excision of a previous right frontal tumour, so hopefully same bone flap will be used and I can keep my separate sites limited to 6 (ROFL!)

Biggest concern is that they don't make my eyebrows uneven. They fixed them last time, so let's cross fingers that they keep them where they are :)

Yes, that will make 7 separate surgeries for craniotomy, and a total of 9 times opened up. The timing is fantastic, as I will be well healed and free(ish) of headaches for Georgia's first dance concert and school presentation concert in a few weeks.

They are concerned that they are finding it difficult to find stable areas to screw in the frame (it's the soccer ball effect of my head). I've suggested that I am doing them a favour by keeping them on their toes and helping them develop their problem-solving skills. I think that's important in the medical profession, don't you? That will leave me with 4? in there, but they aren't causing symptoms so I'm not bothered. We're pretty limited to one at a time thanks to my unstable skull, so it's all about prioritising.

Meanwhile, getting my things together and logistics organised... and feeling rather smug that I'm still ahead of JAG in the craniotomy stakes :P

See you on the flip side!

Nic xxx

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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JenC's picture
Replies 1
Last reply 11/9/2010 - 12:45pm
Replies by: Sherron

My husband just finished his 2nd week of IL-2. Just before his first dose he got high dose radiation on two large tumors on his face and neck. The one on his parotid gland is about the size of a golf ball and it started oozing brownish discharge after week 1 of IL-2. He put a bandage on it to cover it up and ever since he removed the bandage it has been dripping blood. I know his platelets are low due to the treatment but I'm concerned about the bleeding. If it is covered it stops, but as soon as the bandage is removed it flows. We will call his doctor in the morning, but has anyone else experienced this?
Week 2 was definitely worse than 1, and he only got 7 doses. However the worst side effect had nothing to do with IL-2. On Wed he was crawling out of his skin and could not relax, a symptom he got the 1 st time. He said it felt like he was xeroxing from heroin (based on tv/ movies). The nurses assured us it was IL2 toxicity. He was ready to quit when someone finally realized that he stopped requesting oxycodone. At home he was up to 8/ day and by Thursday he had only taken 5. He was detoxing! They started to give him oxycodone and he was able to get 2 more doses.
Now for the 4 week wait!

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We are an Ontario charity who are looking for young people who are suffering from, or who have been affected by, melanoma to appear in an educational video.  The David Cornfield Melanoma Fund was established in 2007 and is devoted to saving lives from melanoma by promoting awareness of this disease.  The Fund was created in loving memory of David Cornfield, who passed away from melanoma in December 2005 at the age of 32.  David was my step-brother and left behind a legacy, including a young son. 

We are in the process of making an educational video aimed at teaching youth and their caregivers about preventing and detecting melanoma. We plan to distribute the video to summer camps, schools and other stakeholders.  We have hired a dynamic well-known production company, Evidently, to help us shoot this video.  We are moving things forward very quickly are looking for actual patients (preferably younger people, such as teenagers or young adults) or family members to appear in our video.

 The video will be shot in Toronto hopefully around the end of this month. We are not in a position to pay for the appearance but would, of course, cover reasonable expenses i.e. parking.
 
If you or someone you know are able to assist, that would be wonderful.    Kindly contact me on this Board post or by email at david.cornfield.melanoma.fund@gmail.com and I can give you some more information.
 
Thank you
Elyse
  

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Nebr78's picture
Replies 1
Last reply 11/9/2010 - 4:09am
Replies by: Dynasysman

Have you noted that FDA has delayed the approval of Ipilimumab by 3 months.  I suppose they all want to go on vacation with our president, while some of us stay home and suffer.   Since I can't get into a clinical trial, I was waiting for Ipili to be approved for my Dr. to use possibly. I am the one with heart disease also.

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djpayn's picture
Replies 1
Last reply 11/8/2010 - 9:29pm
Replies by: Jim M.

Hi!! I am in desperate need of a wheelchair for a few weeks to months and was hoping that someone in the tampa / moffitt hopital area has an old one they would let me have for a while.  if not, does anyone know where i can get one donated or for cheap?

this is not for me, but a family member who is unable to walk right now due to an accident.

 

thank you for your help with this.

 

Djpayn (dawna)

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need for suggestens for recovery from surgery

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Wife of nj_Mark's picture
Replies 16
Last reply 11/7/2010 - 9:59pm

Four years ago we got the call from the doctor that Mark had Melanoma.  I didn't even know what it was - I sure didn't realize the nastiness of it.  After multiple surgeries and drugs we are now at the place we have been dreading for these past years.

I'm losing the best husband and the kids are losing the best Dad.  He will be missed, yet he lives on in the many people whose lives he's touched.

The end is very near.  He wanted me to post and say how much MPIP meant to him and how he appreciated the support he received here.

I'll love him forever.

Terri, wife of Mark

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Nebr78's picture
Replies 5
Last reply 11/7/2010 - 11:23am
Replies by: jim Breitfeller, Nebr78, Jackie W, lhaley, Anonymous

I am back again.  Does anyone know how to get ipilimumab in Nebraska?  They have quit treating me as they think the chemos that will do any good will be too hard on the heart. I have had heart disease for 40+ yrs. and heart is not in good shape.  Maybe this ipil will do the job. Tumors are growing. Maybe the side effects of ipili will not affect my heart.  The FDA is taking a long time in approving it, it seems. Thanks.

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scots's picture
Replies 13
Last reply 11/7/2010 - 9:12am

I was  diagnosed with melanoma after a cycst was removed from the back of my head in September.

Pet/CT -clear, WLE - clear margins, SNB - neg,  melanoma 3.7

My oncologist has suggested interferon(1 month high dose, 11 month low dose) and radiation.  I have an appt. with the radiation oncologist on Thursday to discuss treatment.  I'm suppose to start interferon next Monday.  This has all happened so fast, so many questions.  Has anyone had any experience with goning through both treatments at the same time? or what order you went through both treatments.  After reading about interferon on the bulletin board I'm wondering if I can do both.

 

Thanks

Scot

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scots's picture
Replies 3
Last reply 11/7/2010 - 8:09am
Replies by: scots, debbieVA, BethA in VA

I live 2 hrs from University of Virginia Medical Center so I'm going to a local oncologists for treatment but I would like to find a melanoma specialist at UVA Cancer Center.  Doe anyone see a Melanoma specialist at UVA?

 

Thanks,

Scot

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Jim M.'s picture
Replies 14
Last reply 11/6/2010 - 10:10pm

Hi everyone,

 My recent scan two weeks ago came back negative!! Three years ago on 11/1 I had an LND to the right axillary and I've been NED since. I give thanks and praise to God. Miracles are happening every day. I thank so many of you for your guidance, knowledge and support. You are the wind beneath my wings. I thank my wonderful medical team, for their caring, expertise and passion to help others. I don't know where I'd be without my dear wife who loves me through the good times and the rough times. Our 2 children are such a special blessing and they keep me going. My prayers go out to all warriors, caregivers and loved ones.

 God Bless to all,

 Jim M.

Stage 3C

LND (unknown primary)

radiation 6 weeks

Ipilimumab and peptide vaccines: 3/08-10/08

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aspenglow6@yahoo.com's picture
Replies 8
Last reply 11/6/2010 - 7:25pm

New subscriber looking for anyone who can relate to vulvar melanoma or who has had experience using aldara cream??

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Springbok's picture
Replies 4
Last reply 11/6/2010 - 7:19am
Replies by: Springbok, washoegal, Janner, Anonymous

I came across a couple of articles on the Web that maintain that biopsys spread cancer.

This may be total quackery, but the argument goes that the body builds walls around concentrations of cancer cells to contain them, but that these walls become breached, and the cancer cells escape, when a biopsy is performed.

I am scheduled for a SLN  in a day or two , and these articles have given me pause for thought.  Any comments?

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