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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Linny's picture
Replies 5
Last reply 6/22/2011 - 10:50am

I have Stage III melanoma with an unknown primary. Only one lymph node had tested positive for melanoma in December. Back in January I had all the lymph nodes removed from under my left arm and am NED. Or, I hope I still am.

In March I qualified for the MAGE vaccine trial and in order to qualify I needed to have clean scans, which I did.

Fast forward to last week. I had begun noticing soreness and tenderness at the surgical site. There was no bruising, there was no redness -- it just was sore and tender to the touch. I had a CAT scheduled anyway so I figured that if something was going on it should show up on the scan.

When I went to see Dr. Scharfmann at Johns Hopkins today, I mentioned the pain and tenderness to him and coincidentally enough, he mentioned there was an abnormality found on the CAT scan at my surgical site. All the major organs were fine, though. He could not say with 100% certainty that it was scar tissue but he seems to be favoring that. The pain and tenderness might be an inflammation caused by surgical clips that were left inside. During his exam he found no unusual lumps anywhere. I will need to undergo an ultrasound so the folks at Hopkins can get a closer look at that abnormality. If it looks suspicious they will do a needle biopsy.

He didn't seem overly worried so I'm still on the trial. But it's easy for him to not worry, he's not me! LOL.

I'm trying to remember the positive things (major organs are fine and if melanoma has decided to rear its ugly head it will have been caught early) but I just don't want to dig myself into the same hole I was in back in December when I was first diagnosed. So I'm posting this to find out if anyone here has had a similar experience or knows of someone else who has.

Thanks,
Linda

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Steve0805's picture
Replies 23
Last reply 7/30/2011 - 2:28am

So im new. my names Steve, im in good health far as i can tell. I noticed a lump about 6 months ago. I had no kind of insurance and little help getting to get it checked out. When i did about 3 months later they just felt it and said it didnt seem like cancer and we can cut it out if you want. so i spent the next 3 months trying to get Insurance. The lump grew to the size of a baseball before it was removed a week and a half ago. I went in for my post op today and the they told me they found Melanoma. I have no visible signs of problem that i can see on my skin. Im freaked out of course, dont want to tell my family yet, and everytime i look at my kids i have the hardest time not breaking down, not sure what im asking or what im here for. just scared and figure other people here might know what its like and where things go from here. waiting for a call for my appointment to get a PET/CT whole body scan whatever that is. should be in the next few days or so.

Steve

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StevenK's picture
Replies 4
Last reply 6/21/2011 - 5:36pm
Replies by: StevenK, MichaelFL, lhaley

I got the report back on the skin that was excised to remove the mole and it says the margins were cleared. I asked if the depth was found to be anything other than the .6mm that the intitial biospsy stated, but the nurse said the report didn't contain any information about depth. This confused me since I thought I was going to learn the definitive depth. I asked to speak to the doctor and was told I would have to wait until the end of the day when he's done seeing patients. 

My paranoia is making me think the doctor doesn't want to tell me the bad news, but it could also be that there is no bad news and that's why he feels no rush to put me before his other patients. He's going to call me, supposedly, at the end of the day, but right now I'm confused. Can I take comfort from the fact that the margins were cleared or is that irrelevant if other factors are bad? I can't wait until I'm finished with this doctor.

Steve

 

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Anonymous's picture
Replies 7
Last reply 10/6/2011 - 6:25pm

every time my husband gets a mole cut off the waiting game ages me years. i dont understand how some people dont find out for 2 weeks - that just seems insane to me. what seems to be typical - 1 week? 1 day? does it just depend on how many other moles the pathologist has to review?

thanks!

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glewis923's picture
Replies 7
Last reply 6/23/2011 - 6:25pm

Hello Folks!  Back again trying to glean some knowledge as i'm all cleaned out.  Brief history: 12 plus brain mets 1-26-11 found.  SRS and whole brain 2-1st thru 2-25th.    Yervoy / IPI 3-1st thru 5-? (4 rounds complete.

a couple of weeks ago i began having headaches- last week up till now been agonizing 24 hour (almost) affair.  I have not changed any meds. since beginning Kepra which i takr 2 1/2's per day (yes, i should be taking 2/day);  vicodin (hydrocodone) that i took 3 4 max./ day after 2 pm to help with "general aches and pains , and frankly "well-being".

After 7 at night i take 1 to 3 .5 Avitan.

 

Dr. yesterday prescribed Nuerontin -300 mg./1 at nite..  i took i last nite and not sure if it helped.  ONLY thing that does seem to help is Alka-Seltzer (good 'ole aspiran.......but have many small brain tomurs-some with minor hemmorage "halo",  so i probalbly shouldn't be.

Any Advice Please!  has anyone had these headaches pop up after above experiene?  I going crazy.

Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Suzgolden's picture
Replies 19
Last reply 6/22/2011 - 9:39am

I was diagnosed in May 2011 stage lll. I had the mapping and Sentinel Lymph Node Biopsy done. The node contained 2 pockets of cells one containing 5 and one containing 15. PET and MRI clear. I see an adjuvant therapy Dr. on the 28th of this month. Interferon (one month only) is what I am told he will be discussing with me. I have been researching interferon and not finding much positive info. I am interested in Ipilimumab. I understand that some doctors are using it for stage lll. I don't think I can handle the wait and watch thing.

I am also in a surgical study where I was randomized to a group who does not have a complete lymph node dissection and instead I have regular ultrasound tests of my lymph node basin. Thats enough waiting and watching for me! 

Any opinions on Ipi?

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

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Hope Returning's picture
Replies 3
Last reply 6/21/2011 - 2:41am
Replies by: Julie in SoCal

Hi, I want to ask a question regarding the Angeles Clinic. If possible please contact me.

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Shelby - MRF's picture
Replies 1
Last reply 6/21/2011 - 9:09am
Replies by: Carol Taylor

I just wanted to thank you for reviewing your doctor(s) on Avvo.com in May.  Because of you, Avvo donated over $4,000 to the MRF!

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Hi MPIP Community!  I just wanted to let you know that we will be holding a free volunteer training next month in Denver, CO (July 23-24th). This is an opportunity to come out and meet others in CO who have been affected by melanoma, and are interested in getting involved in our volunteer efforts.

We will be covering, among other things:

  • Fundraising strategies
  • Advocacy 101
  • Working with the media

We recently held a very successful Legislative Hill Day, where we brought volunteers to Washington, DC to meet with their Congressional reps, asking them to support the Tanning Bed Cancer Control Act, introduced by Congresswoman Maloney. Since our Hill Day, five of the members of Congress our volunteers met with have indicated they would cosign. We are very excited about this, and look forward to engaging our volunteers in more and more advocacy work on both a federal and a local level.

This training is a good way to get started if you have an interest in helping us with this effort.

The training is free, and anyone coming in from outside the Denver area will have hotel accommodations provided for them. We can also reimburse for some travel expenses.

You can read more about it on our calendar: http://www.melanoma.org/get-involved/melanoma-messengers-training-denver

Or, please feel free to call me: (202) 347-9675, or email me at: volunteer@melanoma.org

I hope to hear from you!

Best,

 

Mary Mendoza

National Director, Volunteer Services

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TracyLee's picture
Replies 8
Last reply 6/21/2011 - 8:39am

Hi y'all,

Second ipi on Friday. So far, it's been smooth.

My neck is VERY lumpy with nodes. I choose to believe they are shrieking "no, no, I"m dying" as ipi kicks melanoma's butt!

Other than some moderate sleep issues, I'm feeling well. Husband is still having issues (ear infection now), which makes me smile. Who's the sickly one?? He's basically been sick since Memorial Day!

Praying that everyone who is doing ipi, scans, IL-2, interferon, etc has excellent news and no side effects. We can do this, YES WE CAN!

And, as a side note, I really enjoy the "small" stuff a lot more these days. Ballet recitals, kids starting their first jobs, Father's day. I'm just happy to be here for all of it.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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ChrisTheWilsonZoo's picture
Replies 1
Last reply 6/20/2011 - 9:57am
Replies by: Carol Taylor

Public service announcement appearing on the Style Network.  Worth taking a look at, it is blunt and to the point.  It uses both words and imagery quite effectively.

http://www.melanomaresearchalliance.org/resources/resources.taf?cat=style

Personally, I would love to see it on prime time on the major networks! 

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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shellebrownies's picture
Replies 7
Last reply 7/1/2011 - 12:16pm

Don goes in tomorrow morning for his next Chemo treatment. Hoping and praying for continued success!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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LynnLuc's picture
Replies 18
Last reply 10/2/2011 - 4:00am

Two years ago yesterday I had my biopsy at Mayo Clinic and they told me I had stage 4 melanoma. They also said I would be dead in 6-9 months. Happy to report I am still here and still NED. Had my latest scans on June 8 and my booster of MDX 1106!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Al In Kansas's picture
Replies 22
Last reply 7/10/2011 - 1:23pm

Lab results from a mole removal say:  Malignant Melanoma, Superficial Spreading Type, Clarks Level II, Breslow Thickness 0.4 MM, Margins Negative.

More details are in my profile.

I'm not having much luck finding Doctors in Kansas that Specialize in Melanoma treatment.  If anyone has a recommendation for a DR. in Kansas it would be appreciated.

A friend has advised me not to mess around and just get to a research facility.  Is that sound advice?

From the list provide here at MRF the University of Colorado Cancer Center is the closest but I haven't found a Dr. Specializing in Melanoma.  How important is that?

M. D. Anderson, Mayo and St Louis University School of Medicine are all about the same distance for me to travel.  I have a daughter living in St Louis so leaning towards St Louis University.  Has anyone here been treated there?

Any and all advice will be appreciated.

Thanks,

Alan

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