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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ET-SF's picture
Replies 3
Last reply 8/21/2015 - 12:52am
Replies by: stars, CHD, Fen

Hi everyone!

What a great group of people you are.  Thank you so much for your support, encouragemnt, and advice!  I'm sorry we haven't been more responsive.  We've barely had time to breathe.

I will see ET in about 15 min.  She is out of surgery, and the surgeon is thrilled with the outcome.  I'm pumped!

Based on the path, we were expecting a positive SLN, but it appears to be cancer free.  Confirmation will come maybe Tuesday when the lab comes back.  So I think we're looking at stage II.  Woohoo!

The surgeon will order up genetic tests to determine the mutation(s).  We have plenty of material available from the first excision.

Base on everyone's input here, we're looking probably towards Johns Hopkins, and I think we'll be able to get the local referral.  Lipson sounds like a great guy, but I know there are others too.

Anyway, we've got a lot more positive outlook this afternoon than we had this morning.

THANK YOU ALL!

ET and SF

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Hello everyone,

As many of you may have heard, this morning President Jimmy Carter announced that he has been diagnosed with melanoma and will begin treatment today. More information on his diagnosis and treatment plan can be found in the Washington Post article below. The entire MRF team will keep President Carter and his family in our thoughts.

http://www.washingtonpost.com/news/to-your-health/wp/2015/08/20/jimmy-ca...

Sincerely,

Adam - MRF

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bjorne's picture
Replies 2
Last reply 8/20/2015 - 12:37pm
Replies by: Anonymous
Dear all, 
 
Wife 38 years old had melanoma mole 5 years ago in her left breast, no mitosis rate, 0,62 mm, 2cm borders in the resection. No treatments after that, just 6 months and now one year checks 
and strong dermatologist revision of her moles.  During this time we had two kids.
 
 
On July she found a lymph node swollen in her right breast, she has had several ultrasound of breast, axila. 
 
Even we said she had a melanoma:
 
- First only did the ultrasound in the left breast.  The ultrasound doctor said no doubt it is benign. 
- Second was just this week, more serious, another doctor took a look to everything.   He said it is very small, and you have an smaller one in the right axila also.  
  She noticed also the pubis lymp node swollen, also very small. 
 
Doctors said to take a look in six months. I feel very anxious, sad, and trying to get information without scare my wife. 
 
Please, could you give me your opinions, next steps, thoughts, 
 
Thank you all, 
 
love
Bjorne
 

Bjorne - Husband

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jvictoria's picture
Replies 3
Last reply 8/21/2015 - 10:17am

Hi All,

Thinking of getting on this Trial... anyone one it? Thoughts / Words of Wisdom?

Stage IIIb Melanoma

Recent Axila Disection

Thanks!!!

Juan

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/27/2015 - 3:28am

I'm a 17 year old female. Blonde hair, blue eyes, and fair skin. About a year ago, this mark showed up on my wrist. It was extremely itchy. After a lot of research, I realized it looked like a melanoma. It was asymmetrical, multicolored (brown, black, and a dark red color), had a ragged border, and was slightly raised. The skin around it was really red. I had multiple people tell me to get it checked out because it looked like a melanoma. But after a few weeks, I scratched it off, so I kind of just forgot about it. I've read that it is possible to scratch them off, but Ive also read that it isn't. There is now a light tan scar on my wrist where it was. 

 

Now, a year later, I haven't been feeling well. I noticed a painful lump in my left side, right below my ribs. I went to urgent care and the doctor said it's most likely a swollen lymph node. She didn't feel any other swollen lymph nodes. The day after I went to urgent care, I found a swollen lymph node in my neck. I also have a sore on my on my scalp that has been there for about 6 months and won't heal. It bleeds a lot and is sort of crusty. I didn't think it could be related, but after doing more research the past few days, I found out that many people who have melanoma have sores that don't heal. This is every symptom I've had in the past month or so: Headaches, dizziness, nausea and vomiting, severe fatigue, swollen lymph nodes, pain between shoulder blades, pain in lower back, and sore legs when walking, even short distances. I've had a low-grade fever for a week. I've also been coughing occasionally and experiencing shortness of breath. My symptoms have gotten much worse over the past week. I've been staying up all night, vomiting. I also had a nosebleed that started out of nowhere, though I don't know how that could be related. The doctor didn't do anything about this, except tell me to keep an eye on the lump in my side.

This was taken when I first noticed it.

https://photos.google.com/photo/AF1QipPBZ0SaBxINzI-g_fp-DKf6I7aDxquPiEgt...

This was taken a few days before a scratched it off. 

https://photos.google.com/photo/AF1QipOpewPRlmgkNoTCXe3Zkg0g2WvFPdaNAPON...

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/30/2015 - 7:49pm

Looking for Dr. Sara E Russell.  Was my phenominal surgical onc many years ago.  Don't see her listed on either the DFCI or Brigham & Women's registry.  Any help/info appreciated. 

Luke 1:37

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DianaD's picture
Replies 9
Last reply 8/20/2015 - 4:54pm

I've just returned from the University of Chicago--the liver doctor I saw today was able to obtain my biopsy results for me, for the mole that was removed from my back last week, and I do not have melanoma!

Thank you for the encouragement and support that I recieved on this forum--I truly appreciate it, and you will all be in my thoughts and prayers. 

DianaD

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Dugandoog1234's picture
Replies 12
Last reply 8/24/2015 - 11:02am

29 year old healthy fit male. From Alberta Canada. Diagnosed with stage 3 melanoma on May 15th/2015 location started on an existing mole located bottom middle of back, which then spread to left groin lymph nodes.Surgery was done June 30th/2015 removed cancer from back and all lymph nodes from left groin. PET scan and follow ups showed cancer has all been removed but radiation sessions are being booked to be on the safe side. Recovery had gone well and the full leg compression stocking is a must to limit swelling. My question to all is the cancer centre is offering me the 1 year interferon drug. I have read many posts and web pages and am leaning towards not doing the drug but would love to hear success and positive feed back. I'm very interested in natural paths as well. 

Thanks everyone

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Thought it was interesting my biopsy last January says the left supraclavicular tumor is braf wild type. Just found that out from my NIH records cause couldn't get the report from the saint Louis records folks. Well maybe I could have but they said they didn't have it so would have had to go to another building.

Anyway my first biopsy in June 2013 of the t10 vertebrae said it was the braf vc80001 mutation or something like that. Kind of explains why zelboraf in 2013 I was the docs only 2nd patient of over 1000 that progressed on it. Kind of explains why the taf Mek although it kept lots of tumors from growing some grew like crazy.

So I guess I have some tumors with probably a certain amount of the vc mutation or maybe that first test was not done right. The rest of my tumors are braf wild.

Kind of weird in my opinion but explains in my mind anyway why the braf stuff failed me so bad.

Justvthought some folks might find it interesting in their situation. Usually I heard it's the other way around. A person is braf wild and they become braf vc.

Artie

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Christine.P's picture
Replies 3
Last reply 8/20/2015 - 8:11pm
Replies by: Wheels1994, Christine.P, Anonymous

Greetings, everyone - 

I went in for pre-op testing yesterday (EKG, blood work, and chest xray) and will be having wide excision and SNB for 2 primary melanomas on Thursday. This morning, I got a call from my doctor saying they found a spot on my left lung and he wanted me back in today for another xray to make sure it was some kind of shadow or something.

My question is this: is this is a lung met, what are the potential treatment? I am trying to remain hopeful that there was just a problem with the x-ray, but would like to know what I'm up against if this is indeed a lung met.

Any information is appreciated. Thank you. 

Christine P. 

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Hikeratheart's picture
Replies 9
Last reply 8/19/2015 - 8:27am

Hi,

I have a wide re- excision July 1st. Having 17 stitches (breslows 4.5) and so relieved it did not spread to my.lymph nodes. I am healing well, but in the past few days noticed a few small blisters and one larger red like pimple near the site. My susurgeon said I had good clean margins.
I see my dema next week. Could something new show up this quickly?

Scared in Milwaukee ......thanks for any insight

KathyMcC

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jtheisen29's picture
Replies 3
Last reply 8/24/2015 - 3:51pm
Replies by: jogo, jtheisen29, dentholla

 

 

Hello All,

 

It's been such a long time since I have logged in or have thought about cancer. Almost 6 years ago I came on in search of support and information for my twin sister who was just diagnosed with stage 3b melanoma while 5 months pregnant. When I first came on I saw some may stories of loss. It weighed so heavy on my heart, and I mourned people and their stories. I prayed that my sister would be one of the survivors. I searched everyday for survivor stories to share with her, and to give myself some hope that she would be able to have a chance to fight and win. I promised myself early on that I would try to come back on the forums and update so that others searching for survivors would have the same hope that I needed 6 years ago. Each year that goes on I have the blessing of thinking about my sister's cancer less and less. I ususally feel a little pang of stress during her annual scans. Annual Scans! I remember when they were every 3 months, and then 6 months! We have lost many melanoma friends along the way and the beauty of this life and our gift of it is not wasted on us. My sister is doing fabulous and travels plenty, plays volleyball 3 times a week and loves life. Her son who she was pregnant with will turn 6 in January and is a true miracle. 

 

I remember thinking why are there not a lot of survivor stories on forums. Does anyone beat this disease, and someone said that they are out living life not posting on forums. If you are newly diagnosed and searching for the same hope that I needed 6 years ago I hope you read this and it brings you some comfort. Keep fighting and be your own best advocate! 

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bjorne's picture
Replies 2
Last reply 8/18/2015 - 6:09pm
Replies by: bjorne, Ed Williams

I found this Cell article, I found it very interesting and I would like to share it with you all, maybe someone with more knowledge,  or contacts with MD doctors or researches could give a read.

http://www.cell.com/cancer-cell/abstract/S1535-6108(15)00253-6

it sounds promising as it follows a new (at least for me) concept of treatment.  I hope that someone can put this in MD o Researchers hands. 

"The strategy is decoupling molecular interactions in a key point in the chain of transmission.  This is what achieves the DEL-22379 molecule that prevents teh association (dimerization) between two proteins ERK. 

Thank you all

Husband

Bjorne - Husband

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ET-SF's picture
Replies 18
Last reply 8/23/2015 - 5:45pm

Hi everyone,

 

There are two of us using this profile.  The patient is ET, and I'm her partner SF -- initials used initially for privacy.  I hope this is all OK.  We're in "divide and conquer mode."  ET is in the shower right now, scrubbing with a special antibacterial prep on her first of three days, preparing for her sentinel lymph node biopsy and WAE on Thur, August 20, and I'm getting us tapped in to this info community.  We're both in this together.  Obviously she has more skin in the game, so to speak.

 

ET got poked in the arm with a stick or branch less than a year ago, and the wound didn't quite heal right.  It eventually looked like a big blood blister.  Our primary care physician removed it and sent it off for a path. 
To everyone's astonishment, it came back a malignant melinoma.  It hasn't yet been staged, but based on the path report (included in our profile), it's almost certainly at least a III-something.  Nobody has said what sort of melinoma, but it would appear to me to be an amelanotic nodular melinoma.  The path report is rather ugly.

 

ET has been referred to a general surgeon for the sentinal node biopsy and WAE.  The surgeon is considered very good (I've seen her work -- truly impressive -- trusted by the local dermatologists), but she is not a melanoma specialist.  As we are ready to go, finding another surgeon would mean a delay.  As the initial excision left behind cancerous material that could be sloughing in the wound area, I'm not comfortable with any delays.  Should I be concerned?  Advice???

 

Depending on the findings of the surgeon, radiologist, and path lab, we will be referred to a physician (not yet identified) at Virginia Oncology Associates (virginiacancer.com).  If ET had leukemia, I would feel we were in very good hands.  However, there is not a single mention of the word "melanoma" in any of the physicians' profiles.  I don't think there's even a "skin" specialist.

 

Certain things have possibly been overlooked in these few days since the diagnosis.  First, there was no mention of a sentinel lobe biopsy.  ET's very concerned dermatologist insisted this work should be done BEFORE the WAE.  We talked this through with the surgeon, and that is what will happen.  We are uncertain whether this would have happened this way without the intervention of the dermatologist.

 

Next, the path report does not include any tests for the specific mutation.  This may be important for guiding ET's treatment plan later.  Can they perform this testing on preserved tissues?  Do we need live tissue?  The only remaining live tissue will be coming out of ET's arm on Thursday.  What should we do?  What tests should we have ordered?

 

We have physicals scheduled with the GP tomorrow.  As he is the referring physician, we'd like to have some good questions, requestions, and thoughts for him tomorrow.  We would appreciate any and all advice we can collect here.

 

Meanwhile, it appears that UVA (University of Virginia) is the closest facility with a first-rate melanoma center.  To be treated there, is it necessary to be accepted for a study?  Or is it possibe simply to be a patient on currently approved therapies?

 

Also what sort of imaging do we need done?  Is it standard procedure to do full-body PET and MRI scans, or do we have to scrap for these sorts of things?

 

So many questions, so little time.  Please help!  (Thanks!)

 

SF

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