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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Brigitte's picture
Replies 2
Last reply 8/5/2014 - 6:51pm
Replies by: Brigitte, Janner

I had a shave biopsy a few weeks ago with the diagnoise being a compound nevus with dysplastic features.  The biopsy also said that junctional changes are focally advanced, perhaps indicative of progression, such that a conservative excision is recomended. I have an appointment to get it done next week. My question is, since my shave biopsy didn't detect melinoma am I in the clear ? Can a shave biopsy give a false negative or miss it and is there a chance this biopsy may detect it? Thank you for your answers. Im trying not to be nervous. 

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ray39's picture
Replies 2
Last reply 8/5/2014 - 7:52pm
Replies by: DZnDef, Kdw2012

I've had a mole on my stomach forever but recently I pulled some loose skin off it and the middle scabbed over. It is about 4mm and black in the middle with brown edges. My dermatologist looked at it during my last appointment and didn't say anything about it. That was about 6 weeks ago. I've moved my sept appt up to aug 18.  Could he have missed something?  It has me worried. 

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Happy_girl's picture
Replies 9
Last reply 8/7/2014 - 9:59pm

I'm looking for opinions.... Sloan Kettering or Dana Farber?  Is one better than the other?  What are your opinions?

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Kdw2012's picture
Replies 5
Last reply 8/6/2014 - 8:35pm

Do you know if having a high mitotic rate plays a factor in recurrence or aggressiveness of tumors?

What has been your experience?  

My melanomas mitotic rate was 15 but It was also ulcerated

thank you

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curious12's picture
Replies 2
Last reply 8/9/2014 - 6:03pm
Replies by: Treadlightly, Janner

Hi everyone,

I posted recently about my son's mystery bump on his forehead. They think it's a cyst (can be felt under the skin) but will remove if it doesn't resolve. The new dark spot on his heel (about 1mm) she thinks looks atypical with dermatoscope so we will remove. She said a punch biopsy on the heel would be difficult and recommened a "scoop"... thoughts on this? This is for my 9 year old son. I'm normally adamant about punches, but I can see how it would be hard to keep together on his heel. She thinks atypical, not mel, but of course one never knows! Thanks!

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Happy_girl's picture
Replies 4
Last reply 8/5/2014 - 12:01am
Replies by: FayFighter, SABKLYN, Anonymous

Does anyone have an opinion about dr coit at memorial Sloan Kettering?

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cc's picture
Replies 2
Last reply 8/4/2014 - 4:14pm
Replies by: cc, Janner

Good morning, 

   My dermatologist called on Friday morning stating that a  mole that I had removed last week from my lower leg was found to be positive for a "very early" melanoma.  Of course, I wasn't prepared for that and don't think I asked the right questions.  I did ask him how he knew that it was very early, and he said that that was what the pathology report stated.  He then told me to come cack in on Thursday of this week to his office to have it removed.  i have been calling the office to try to get the data from the report, but have not  heard back.  From reading around on this site, I think that he must mean that it is in situ.  My question is, do I try to schedule an appointment with a melonoma specialist, even if it is a "very early" melanoma?  I am not far from the University of Pennsylvania, and would go there, but I am not sure if  I need a specialist for an early melanoma.

 

Thanks!

  CC

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sally1980's picture
Replies 6
Last reply 8/7/2014 - 2:17pm
Replies by: scots, Anonymous, brittanyx, Fen

I was recently diagnosed with a t4 tumour on my chest. My pet scan was clear and my sentinel lymph node biopsy was clear, which puts me at stage 2b.

I went to see an oncologist today who recommended going on interferon for a year because the melanoma was on my chest. My surgeon isn't so sure it is necessary so I have to make the decision!

Everything I read on this makes me more confused, I was wondering if anyone else has been in a similar situation and can offer some advice.

I have two young children and live abroad so I'm not sure I will have the support I need to get through such a tough year. Would appreciate any advice!

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Happy_girl's picture
Replies 2
Last reply 8/4/2014 - 1:09am
Replies by: Socks, brittanyx

I had been posting anonymously- but after encouragement from several people, I created a profile.  I am so thankful for those who has posted and shared their thought and opinions.  I feel like I am all consumed by my diagnosis right now and constantly afraid.... Afraid that I'll miss my baby girl grow up....leave my best friend.

* I believe next I will have a clnd.  My sln was originally said to be clear- but then 4 months later said to have a microscopic cell.  I'm so uncertain about what is coming next.

thanks for your thoughts!

~ also.... Thoughts on interferon???

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/3/2014 - 8:18pm
Replies by: Ginger8888, Anonymous

I'm stage lllb and had surgery on the 24th of June to take a my lymph nodes out and was wondering how long you guys had to wait until starting interferon after surgery?

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Dear all,

I haven't written for a some time. While building a house, going back to work, taking a lot of responsibility in raising our 2 year old, my husband had also a hard time fighting this disease. In February it was clear that Vemurafenib couldn't stop it anymore, in April he started 6 weeks radiation to his parotis and neck (only lymph node mets were left after partial response of Ipi in 2012 and Zel and Vem for more than a year) while staying on Vem. May/June he discovered two more subcutanous mets in his axilla. Luckily EAP for Merck's Anti-PD1 started in Europe and after almost four weeks of waiting he received his first infusion. We are more than happy becaus the fear that mel could spread to more areas is big.

My husband received the first infusion last thursday. On the same day we noticed a reddish coloring ot the area of visible tumors in parotis and neck area. Until today the coloring has increased, the area feels very firm, seems to swollen, and the area is very painfull. My question, has anyone experienced this under PD1, especially right after the first infusion? We hope that this is a good sign but it is a little frightening. My husband had a similar but much more light reaction to Ipi.

My thaughts go out to all of you brave melanoma fighters.

All the best, Jenny

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arthurjedi007's picture
Replies 3
Last reply 8/4/2014 - 10:20am
Replies by: Maureen038, tcell

Just thought I would mention Siteman in Saint Louis via Dr Linette has Merck's EAP PD1 pembroluminab if anyone needs it.

We decided to keep going to Mayo for now though. Especially the next visit for the August 13th scan. This will be my first scan with it. So far they never have kept me on a medicine after it's first scan. I really hope they keep me on it. My Mayo doc says not to worry so I try not too. I do know 2 and maybe 3 Mayo docs will be looking at the scan and deciding. I leave it up to God and plan to have Dr. Rosenberg's number in my phone.

 

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Camila Navarro's picture
Replies 9
Last reply 8/6/2014 - 12:34am

My mom had this stage III melanoma, that reached 1 off the limphs. She already had the surgery to remove it and the limphs.

 

Now the doctor want her to use the interferon, and I've readen a lot about it, and would like to know about people that used it, about the side effects

 

Thank u very much

Mother have a stage III melanoma

 

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Gene_S's picture
Replies 8
Last reply 8/6/2014 - 11:08pm
Replies by: Momrn5, Anonymous, arthurjedi007, Gene_S, CHD, Ed Williams
 
------------------------------------------------------------------
 
Interview with Dr. Russell Blaylock
 
 
see page 7 for melanoma
 
 
 
 
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Hi,

I am 33 and I have a lot (30+) of moles that my dermatologist called nervi... something. Some are bigger, some are smaller.

A few of them are bigger than 6mm and a few have irregular margins. I never had one removed.

I go to a check-up every 5-6 months, and the question is always "have you noticed any change?".

Well I did not Notice... but what if I am wrong?

My dermatologist checks every one with a dermatoscope (I think it's called). 

 

My question:

Is he able to see the Danger / change / etc with that instrument? I worry that I was unable to notice a change in some, and... well I don't want to... you know.

 

Thank you.

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