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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Susan1985's picture
Replies 3
Last reply 9/5/2012 - 12:10pm

Hi all, my father was diagnosed with Melanoma two years ago this past August and died eight months later. I live in the Atlanta area and I am searching for a specialist for my own skin exams. I have not been to the Dermatologist at all since his death, and I need to find someone I can trust. I live in the northern suburbs of Atlanta but will travel anywhere within reason. Thank you for any and all advice.

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Anonymous's picture
Replies 2
Last reply 8/30/2012 - 10:19am
Replies by: becky15, Janner

I was diagnosed with Melanoma in Situ about 7 years ago.

The diagnosis came as no surprise seeing as I come from a family history of melanoma. I have been seeing a dermatologist since high school. In addition, we all have several atypical moles. After my diagnoses, the doctor had me undergo a series of digital photographs so we could monitor changes at each visit.

For the first two years after my diagnosis I visited him every three months.

Since, every six.

This last visit, he said that we can make the visits yearly.

This scared me, seeing as like having an additional set of eyes on my moles. However, my dermatologist said he is confident with the vigilance I have shown him the last 7 years that I can monitor my moles myself and then come in for yearly visits. Furthermore, my moles have been 100% stable since my original diagnosis.

I am vigilant. Anything that is new or changes, I make and appt asap, but should I push for more visits? What is the norm?

Thanks. Jenni

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chalknpens's picture
Replies 2
Last reply 8/31/2012 - 6:59am
Replies by: chalknpens, Janner

I've read quite a few posts here, but haven't seen one that asks this question: are the three major types of skin cancer all unique and unrelated, or is their a hierarchy, where basal call cancer is the least invasive but can become squamous cell cancer, can basal or squamous then become malignant melanoma?

I am not perfect, but I am enough.

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lilahs's picture
Replies 7
Last reply 9/13/2012 - 6:12pm
Replies by: mlbjab, lilahs, Janner, Brooksy
I was recently diagnosed with in situ melanoma on my lower leg. The lab results state "The lesion appears to be completely excised, approximating the nearest margin to within 3mm." Initially on the phone, the doctor told me that even though the standards of care are to remove 5mm from the margins, that he doesn't necessarily feel that I need the additional biopsy. He said that he usually abides by the standards of care, but doesn't believe it is necessary for an additional biopsy. When I went in for my appoinment to remove the stitches, I asked multiple questions about the additional biopsy. Now he is telling me that he recommends having it done.  I believe he is saying that to cover his bases. I'm wondering if anyone has any opinions/experience with this situation. I'm comfortable not having the additional biopsy since the margins were clear. I've also had a rough recovery. I don't feel like it is a huge concern to get the additional biopsy, but maybe I'm being to relaxed about it???

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/2/2012 - 12:07am
Replies by: LynnLuc

Came across this PD1 trial that appears to be recruiting!

http://clinicaltrials.gov/ct2/show/NCT01352884?term=nct+01352884&rank=1

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alicat's picture
Replies 3
Last reply 8/29/2012 - 4:03pm
Replies by: WayneG, alicat, Anonymous

Dr said that they were concerned becasue there were alot of blood vessels running into the spot they removed on my sons shoulder.  What does that mean?

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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jmmm's picture
Replies 6
Last reply 10/17/2012 - 6:00am

My husband (stage 4 since Jan. 2011) had a grand mal seizure over the weekend. He has been "fine" for about 6 months and even had a NED scan 3 weeks ago, so the seizure came out of nowhere. The CT at the hospital showed nothing new (he has a large cyst from a huge brain tumor from last October...treated with a craniotomy and gamma knife). He'll go in Friday for a MRI to. Rule out new growth, but for now he's on Keppra. Since he started taking it, he's been like a zombie...completely glassy-eyed, wants to sleep all the time and can barely function. I have a call into the doctor, but am wondering if someone has experience with any type of anti-seizure drug. This is not how he wants to live...we're both thinking that the risk of another seizure is better than living like this. Any thoughts? They did not find an immediate cause for the seizure.

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http://atlasgeneticsoncology.org/Tumors/SkinMelanomID5416.html

Atlas of Genetics and Cytogenetics in Oncology and Haematology

Lot to obsorb.

I'm me, not a statistic. Praying to not be one for years yet.

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PeterO's picture
Replies 2
Last reply 8/29/2012 - 2:24pm
Replies by: dellriol, kylez

My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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Kelly7's picture
Replies 12
Last reply 8/30/2012 - 8:23am

Im looking for some help or advice...

My brother went through IL2 in February, and then four dosages of Yervoy, ending in June. The scan had the tumors shrinking. Then in July he got headaches. They did an MRI and they found out that his pituitary gland was swollen, so they gave him pregnazone. The headaches went away, but then he got really bad stomachaches. He has been in and out of the hospital now, not able to work, has lost 30 lbs in 4 weeks, and if he eats he either gets diarrhea or throws up. He had a semi colonoscopy a week ago and they found nothing,  and he goes in for a full one tomorrow. 

During the Cancer treatments he never got sick, he never looked sick. Now he looks like a sick patient. He is only 37 years old and it kills me to see him so thin. He cant even think about the Cancer right now, he feels like he is dying, and is spending everyday toppled over in pain.

Anyone know what could possibly be going on?? The doctors cant seem to figure it out!

Thank you for any help!

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/29/2012 - 11:09pm
Replies by: Anonymous, JerryfromFauq, Janner, Everymoment

7 Years ago I had a melanoma removed, it was only .52 and I only needed a WLE. This spring I noticed a small hard lump. The surgeon thinks it is just scar tissue. Previous to this spring the scar was very smooth.. Can Scar tissue show up 7 years later? Thanks in advance for your response. My prayers go out nightly to everyone fighting this disease.

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Anonymous's picture
Replies 2
Last reply 8/29/2012 - 8:50pm
Replies by: FeistyD, melmar

Hi Margo,

 

I am new to this board. I have been reading posts about PD1 and I am  looking for anyone on Merck Pd1 trial.

I am on the Merck PD1 trial in Texas. I am stage 4 and hoping that I too will have shrinkage like you. My first set  scan's, I was stable. In a few weeks, I will have my second set of scans. I am very scared

Margo, I would appreciate if you could post how you are doing to give me hope.

If anyone eles is on Merck PD1 trial, it would be great if you could post how you are doing on the Merck pd1 trial. Any good news of others doing well on Merck PD1 would help me stay strong to get through the scans.

God Bless you all,

Kathy

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