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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darthveder's picture
Replies 2
Last reply 1/12/2012 - 6:57am
Replies by: darthveder, nikolaos

Good morning, my father is being treated with yervoy (he did the second infusion and in a few days will be the third) in Italy in Rome. He metastases to the spine for this hospital for several months gave Deltacortene (Prednisone) 5 mg x 2 times a day. the doctors have never mentioned anything about the possibility that this drug may conflict with yervoy. Assumption yervoy someone with prednisone? has been made ​​a serious mistake on the part of doctors? thanks

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/16/2012 - 8:01pm

Sam is currently in the hospital on life support. Any prayers and/or uplifting thoughts are welcomed.

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chende's picture
Replies 3
Last reply 1/12/2012 - 10:41pm
Replies by: Linny, Valentine, Janner

Hi everyone,

I am new to this forum. I recently discovered a new mole on the bottom of my foot. Naturally this has me concerned since I know that is a place where melanoma likes to show up. I've had it for a couple of months now. It's very dark but doesn't seem to have irregular edges. I also have one between my toes on the same foot but I have had it for years with no change.

I am a high risk candidate so I'm pretty worried. My mother has melanoma and I have blond hair, blue eyes, way too many sunburns in my teens and twenties, including a second degree blistering burn...and I have an Irish heritage.

What I would like to know.....is a mole on the bottom of your foot ALWAYS melanoma? I've never heard or seen of one without it being melanoma. I have an appointment to get it checked on the 20th of this month but that is a very long 10 days from now.

All the best to everyone. I am humbled by the strength of all the warriors and their friends and famlies.

 

Carolyn

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Ranisa's picture
Replies 4
Last reply 1/16/2012 - 9:39pm

Are there are any melanoma speicalist in Omaha Nebrasha?

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32 year old caucasian male with no family history of melanoma, but childhood history of allergy to the sun during summer of 86 and adult history of 2 severe sunburns while mountain hiking. I do burn easily and don't tan quickly,  less than 50 moles on my body, brown hair/eyes.

I was diagnosed with moderately atypical nevus on my shoulder that was excised with conservative margins.  Now i had one diagnosed on my cheek that came back as moderately atypical with focal severity.

 

Report  further says:

 

Comment: Initial and multiple levels were examined.  The biopsy shows a junctional melanocytic proliferation with marked confluence of atypical melanocytes at the dermo-epidermal junction.  While the apparent small size of the lesion would favor a diagnosis of dyplastic nevus, complete removal is recommanded for diagnostic and therapeutic purposes.  This case was reviewed by Dr. Lisa H. Lerner who is in concurrence with above interpretation.

 

I have a feeling they are not 100% sure.  I already had it removed by my dermatologist.

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Replies by: Janner, vladimir3d

32 year old caucasian male with no family history of melanoma, but childhood history of allergy to the sun during summer of 86 and adult history of 2 severe sunburns while mountain hiking. I do burn easily and don't tan quickly,  less than 50 moles on my body, brown hair/eyes.

I was diagnosed with moderately atypical nevus on my shoulder that was excised with conservative margins.  Now i had one diagnosed on my cheek that came back as moderately atypical with focal severity.

 

Report  further says:

 

Comment: Initial and multiple levels were examined.  The biopsy shows a junctional melanocytic proliferation with marked confluence of atypical melanocytes at the dermo-epidermal junction.  While the apparent small size of the lesion would favor a diagnosis of dyplastic nevus, complete removal is recommanded for diagnostic and therapeutic purposes.  This case was reviewed by Dr. Lisa H. Lerner who is in concurrence with above interpretation.

 

I have a feeling they are not 100% sure.  I already had it removed by my dermatologist.

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sharmon's picture
Replies 1
Last reply 1/10/2012 - 11:29pm
Replies by: King

Hello everyone,

At MD Anderson, have been every 4 weeks for the last 2 years.  I started on the GSK MEK solid tumor trial in February of 2010.  After 4 months a 30 % reduction in tumor sites and stable for the next  10 months.  Growth for this single agent trial after 14 rounds and moved on to a combo of GSK MEK and Alimta ( a chemo for lung cancer).  No  reduction but stable to date after 10 rounds.  After numerous discusions, here, in Nashville, Detroit and elswhere the general agreement is to continue with the GSK product and this trial as long as possible.  I am BRAF negative and up to date on all the latest trials for the plan B as needed. 

For anyone just diagnosed with this nasty disease, do not stop at your local home town "cancer center", nice folks I am sure.  Go to the top, they have options, they have significant ongoing research and new trials are arriving daily.....  Over the last 4 years we have been monitoring this site, we hear of so many that love their local doctor, a great guy, he can fix this, kind of relationship, only to hear of their passing.  They jump right into chemo, a lot of damage is done, more than healing, and the rest is history.  The doctor is still a great guy, but the paitent died.........

All the best for 2012, exciting times ahead, hug your wife, dog, kids, everyone, everyday, and for those of us out there, "God is Good, all the time"

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Register and find out more here: https://www1.gotomeeting.com/register/271562473 

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Lilylove414's picture
Replies 7
Last reply 1/13/2012 - 8:56pm

So UVA was alright, if the actual talk with the doctor wasn't so disappointing. Of course he started me off with news I already know, my tumor is too small for a trial, and my scan showed a small lymph node under my right arm. Even though he thinks it's nothing, he wants to be positive and have me in again for a CT scan later this month. Then, he wants to take the rest of my lymph nodes out under my left arm, which I was suspecting. Still don't want any more surgery! After that we can start treatment. Considering I've been getting the every 3 week visit, it'll probably take til spring to get me started on interferon. At first I was so frustrated, but now I'm just so tired of waiting. And apparently he had an emergency or something because after he told me to get dressed from the physical glance over, he never came back! He had some nurse come in and tell us that we should come back in 3 weeks for the scan. That's what made me so mad. Anyway, right now I get to wait. I am not a patient lady.

If God is for us, who can be against us?

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Taterbug's picture
Replies 3
Last reply 1/17/2012 - 11:17am
Replies by: Taterbug, Suzan AB

Does anyone out there have a primary melanoma tumor in their spinal cord?

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panda's picture
Replies 2
Last reply 1/10/2012 - 9:56am
Replies by: Janner, Lauri England

Hi, i have been on here not long. It is very interesting reading everyones stories. It is encouraging seeing what wonderful support there is for each other on here and it is very uplifting... Anyway Happy New Year!. it IS only ten days into the new year so positivity!!!

My question is this. I was diagnosed with a melanoma last jan and had it removed from my back. Clark Level II. I have ANOTHER mole , which i got checked in the year two thousand... It is in an area that doesnt see much light of day, so never bothered giving it much attention ever again.(as i didnt know much about melanomas back then) i now find, since i had my last check up, that in the last ten years , it has grown significantly in size from a tiny pin prick size (of about ten pin heads or something) to now the size of the end of my little finger.

 

Is it a worry if moles grow? i went to get check up three months ago, and she said, we will take a photo and see if it grows in the next threee months until you come back and see us again? Well what the heck does she mean? its been growing for ten years??????? I find that VERY concerning

 

Is that concerning??? Should i be getting this mole tested?? They dont seem to think it looks funny in colour... but i am just wondering???

 

Also, what does a CT scan involve. I read a lady on here gets them every six months.... do they involve going in that thing that goes over your head where you feel claustrophobic??? sorry, but seriously, i have heard about those things. sound terrible? are they terrible.  Just making sure, that i never have to end up going thru that.

Thanks for reading. All feedback and opinions much apprecitated.

thanks

Felicity (panda)

today is a gift and thats why its called the present

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Hi, i have been on here not long. It is very interesting reading everyones stories. It is encouraging seeing what wonderful support there is for each other on here and it is very uplifting... Anyway Happy New Year!. it IS only ten days into the new year so positivity!!!

My question is this. I was diagnosed with a melanoma last jan and had it removed from my back. Clark Level II. I have ANOTHER mole , which i got checked in the year two thousand... It is in an area that doesnt see much light of day, so never bothered giving it much attention ever again.(as i didnt know much about melanomas back then) i now find, since i had my last check up, that in the last ten years , it has grown significantly in size from a tiny pin prick size (of about ten pin heads or something) to now the size of the end of my little finger.

 

Is it a worry if moles grow? i went to get check up three months ago, and she said, we will take a photo and see if it grows in the next threee months until you come back and see us again? Well what the heck does she mean? its been growing for ten years??????? I find that VERY concerning

 

Is that concerning??? Should i be getting this mole tested?? They dont seem to think it looks funny in colour... but i am just wondering???

 

Also, what does a CT scan involve. I read a lady on here gets them every six months.... do they involve going in that thing that goes over your head where you feel claustrophobic??? sorry, but seriously, i have heard about those things. sound terrible? are they terrible.  Just making sure, that i never have to end up going thru that.

Thanks for reading. All feedback and opinions much apprecitated.

thanks

Felicity (panda)

today is a gift and thats why its called the present

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deardad's picture
Replies 12
Last reply 1/11/2012 - 5:24pm

Dads 4th month results on Vemurafenib show tumors are continuing to shrink.

We can breathe until the next scans.

Dad has lost a lot of hair, almost all his body hair, very thin on top and almost all his eyebrows and moustache. He still has joint pain, but has energy. Certainly hasn't lost his sense of humor. We go with the good and worry when we have to. 

My heart goes out to all.

Nahmi from Melbourne

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bdhf's picture
Replies 6
Last reply 1/12/2012 - 10:15am

Question for you all...so far the only treatment discussed with my oncologist is radiation (SRS).  We are still in the diagnostic phase, trying to determine if "nodes" in my lungs may or may not be tumors.  Brain met was removed (3 cm) on 14 Dec.  If there are no further mets I am wondering if they will do anything more than the radiation.  I have a new oncologist but she doesn't want to see me until after the biopsy on my lung.  So, I am in this limbo land as I wait for the consultation appointments then the real procedures with the pulmonologist and the radiation oncologist.  

Any thoughts or inputs would be greatly appreciated!  Thanks!  

Brenda

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