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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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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HelperDaughter's picture
Replies 1
Last reply 1/10/2012 - 4:25pm
Replies by: Kelli100299

An update.  My mom had the resection on her small bowel.  My mom's surgeon told us that the tumor was the size of an apple and three pathologists (or three labs - not sure which) were fighting over it.  He said they were going to see if there was anything they could do for her based on the tumor.  I'm hoping he means looking to make a tumor vaccine, since we already know my mom doesn't have any of the "good" mutations.  I didn't exactly press for this info, though, because thinking that there's a bunch of paths out there looking to help us leaves the door of hope open in an otherwise grim situation. 

So my mom is trying to get back on her feet - surgery was four days ago.  She felt great Day One after surgery (all the pain meds, probably), and like hell days 2 and 3.  She looked a little better yesterday, and I did not get to see her today.  Her kidneys were apparently being stubborn, however, and she put on like 10 pounds of water weight that they are giving her Lasix to take off.  She was only like 104 lbs prior to surgery (and 5'2" - teeny tiny, but about 20 lbs short of her usual plump self). 

My dad said she slept most of today because the Lasix makes her tired.

Anyway, my mom's nausea and vomiting is gone, and the bleeding from the tumor has stoped.  Her bowels are starting up again.  Her hematocrit is stable, which means no internal bleeding.  All very good things. She's on an unrestricted clear fluids diet, and hopefully will advance (and put some of that weight back on - I can't help but see how skeletal her face looks).

I found out my mom had cancer in July 2011 and went shopping with her then.  I didn't get back to see her until October, at which time she was too sick from the bowel tumor to do much of anything. 

I just want to go shopping with her again - just one time.  Please, let this be the trick.  She has to get a little luck.  Her tumors did not shrink on ipi, the brain mets make her ineligible for the trials, and she doesn't have any mutations that anyone's studying, apparently.  I'm encouraged that the surgeon apparently thought she had enough left in her to make this rather difficult surgery worthwhile.  the melanoma specialist, however, told her not to do it and, basically, to keep being miserable, nauseous, vomiting, tired, bleeding internally and taking 2 units of blood each week just to keep her head above water blood-wise until she died.  Sorry, but that's the long and short of it.  He recommended Temodar instead of surgery.  he said it had a 10% chance of reducing the tumors and a 50% chance of keeping them stable.  that's worse than a coin toss.  But, the surgeon said he recommended the surgery, and deep-down, we felt it was right.  Maybe it's just a "cut it out" mentality, but I don't see how removing a tumor the size of an apple can NOT improve the situation.  bulk-wise, it's literally removing probably 2/3 of the cancer from her body.

My thoughts are with everyone tonight.  I see that some people have lost loved ones around the holidays.  I'm grateful i got to spend christmas with my mom and i'm hoping for another.

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Ginseng's picture
Replies 2
Last reply 1/11/2012 - 10:28am
Replies by: Phil S, FormerCaregiver

Hi all,

Six years ago  I had a mole in my right thigh removed along with a sentinal node biopsy. The biopsy indicated micro metastisis to the sentinal node. I opted to have my superficial nodes removed. None had disease and the rest of my body was clean as well.

I underwent roughly two years of interferon treatment. I remained clean until now.

Now I am scheduled to have a two by one centimeter subcutaneous nodule in that thigh (appr. two inches to the right of the original mole) resected in two days. My Pet/CT indicated no other melanoma spread beyond the nodule.

I am looking for advice on post-op treatment because I know I need it to deal with any possible residual melanoma cells. I have read many comments in the forum from people who clearly know much more about the immunology and science of the options than I do. I am happy with my oncologist but I respect the experience and knowledge of those commenting here. I would appreciate any and all help!

Thanks, Sue

 

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Julie in SoCal's picture
Replies 7
Last reply 1/10/2012 - 5:43pm
Replies by: Julie in SoCal, Anonymous, TracyP, lhaley, SuzannefromCA, Lori C

Hello Friends!

Please break out your happy dance shoes and do the happy dance with me!  I had scans today and I am now officially 3 years NED!

I don't post often (only if I have something new to say) but this site has been a huge blessing and encouragement to me in my journey.

Wishing NED to all of you!

Julie

Stage 3a, WLE, SNB, LND, HD-INF, GM-CFS

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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