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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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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newmanmark's picture
Replies 9
Last reply 7/1/2011 - 11:39am

Hello,

It has been a long time since I have posted here.  I am a 31 year old Stage 3C with 8 nodes infected.  I had a complete lymph node dissection under both arms, 5 weeks of radiation and 7 months of Interferon.  The Interferon sent me into a manic state and I had to withdraw.  I have been off of Interferon since October 2010 and so far all scans have come back clear.  While going through radiation my wife and I had our first child.  This had to be the most difficult time of my life.

The reason I write is because for the past 2 weeks I have had some discomfort in my abdomen area especially in the upper right portion (under my ribs).  I am concerned that the melanoma may have come back in my liver.  My oncologist has ordered a CT scan to rule it out.  However the scan isn't until July 11th.  The wait is awful and my mind continually races.

It would be good to hear from other Stage 3 patients (especially 3C) who are doing well long after their diagnosis.  I am constantly reading horror stories and it drags me down mentally.  Is there anyone out there with a good story of reamining NED with several nodes infected?

Thanks
Mark

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awg's picture
Replies 2
Last reply 6/22/2011 - 2:32pm
Replies by: Janner, MichaelFL

As a newer member to the form I want to thank everyone for the abundance of great information that is available, It has been very helpful to me and my family.

I have a friend who was just diagnosed by her derm with a 0.2mm Melanoma on her upper back.

The derm is planning to remove the surrounding tissue, wide excision himself (she was told it could be about half the size of a football) . It is normal for derms to do this?

I know primary depth is a huge determining factor but my derm sent me straight to surgical Onc but my melanoma was greater that 1.0mm.

Would it be best Surgical Onc for Wide excision and do a Node bx as well?

Thanks,

 

Allen

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salliemae's picture
Replies 15
Last reply 6/24/2011 - 10:25am

Hi everyone,

I'm posting for my father-in-law, who has recently diagnosed stage IV melanoma, throughout lungs, on spine, liver, hip, some brain mets.  He's 79 and was very active before the symptoms that eventually led to his diagnosis.  He has had some traditional radiation on his spine and hip and was basically on "hospice-track" with his first, general oncologist.  When we asked about yervoy, that doctor hemmed and hawed and finally got back to us that the practice didn't want to lay out the money for the drug, even though there's Medicare coverage, and BMS told me over the phone that there haven't been Medicare coverage problems that it's aware of. 

So he went to a true specialist in this area. We are very glad that doctor agreed to see him, and quickly. That doctor has decided not to give him Yervoy because it takes 9-12 weeks to work and weighing in side effects given his age and frailty.  If BRAF tests come back positive, that doctor has promised to try to get him in a trial with the V-drug that Genentech is testing, because it works fast.

The family is deciding whether to keep pursuing Yervoy.  After all, his BRAF test may be negative.  And my father-in-law is walking around the house and eating OK.  He was very vigorous until recently.  FOrgive me because I'm getting all this thirdhand, but have y'all ever heard of doctors refusing yervoy because of frailty?  Have y'all also heard or experienced the 9 to 12 week delay?  How much do the side effects really matter with a prognosis like this?

Finally,does anyone know doctors who really are prescribing Yervoy since approval?

Thanks in advance,

Salliemae

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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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awg's picture
Replies 4
Last reply 6/21/2011 - 11:21pm

Has anyone worked with their insurance agent to make any changes to existing polices after DX and NED given?

What is the NED period they look at?

Were they willing to work with you (I know most likely at a higher rate)?

 

Thanks,

Allen

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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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