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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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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specka's picture
Replies 12
Last reply 8/18/2015 - 5:04pm
Replies by: Marianne quinn, Anonymous, kylez, Ed Williams, specka, Bubbles

Its possible my husband could start a clinical trial for Avelumab. He has a choice between that and Opdivo or Keytruda.

He was diagnosed in February with stage 3b. He had the main tumor, a satellite, two pre melanomas and four lymph nodes removed in the first surgery. 3 of the 4 nodes were positive so he had his axillary nodes removed. Then had radiation and yervoy. The last scan revealed a 1 cm spot on his liver. Now its time to decide the next step.

There is a clinical trial for Avelumab. A drug that i can find very little about. I tend to gather as much information as possible from anywhere i can, so not being able to find information is unsettling for me. Still, its a new drug and I have only been in the cancer game for a few months.

Or he could go with Opdivo or Keytruda. Has anyone faced this dilemma? Or something close to it?? Or perhaps, have any information that I dont on this new drug for treating Melanoma?

Thank you,

Rebekah

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Patina's picture
Replies 4
Last reply 8/20/2015 - 10:09am

Hi,

My Mom had a followup, after a craniotomy done in late June, last week and was due to start Keytruda tomorrow. Unfortunately the followup with a internal review has determined the "nodule" found last week is a new brain met (1cm).  They want to do SRS as soon as possible.

My question concerns the timing of SRS and Keytruda. Has anyone had SRS just before starting Keytruda and can you tell me how many weeks you waited to start Keytruda?  

My Mom's already gone through Yervoy and SRS before and done really well for sometime, with the exception of a reoccurrence and now this. Keytuda was to be the next step, but there now looks to be two and I'm trying to figure out what the typical time is between treatments.

Thanks!

PS

Stage IV (Nov 2013), 25 brain mets treated to date, 1 more to go now. All else is great.

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arthurjedi007's picture
Replies 9
Last reply 8/23/2015 - 5:52pm

Yes I know chemo is not for us. No long term and all that. Doesn't really work very good and all that. I'm not sure what type of chemo but I think it is that same combination that Shane did to knock his tumors down and now I think he's on pd1 but I could be wrong.

I was wondering if anyone knows how often you get it? I imagine the side affects will be way rougher than I've got used to on pd1?

The only reason I'm considering it is my long distance doc wants me off the pd1 although it is still slowing things down. He wants to use this as a bridge until they get an opening for me in one of their potentially good immunotherapy trials.

Im just not sure what affect this will have on me. When I asked my saint Louis doc last May he said it would make me very sick and it might hinder me getting into a trial. Im also not sure of the logic of such a sequence of meds. Like going off pd1 after 15 months of trying to build up my immune system to knock it back down with rough chemo then build it up again with a different immunotherapy. But that doc is smart and experienced in immunotherapy so maybe that would be best. I dunno. They do that logic with til to knock the immune system out before replacing it so I dunno.

Any thoughts?

Artie

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AshleyS's picture
Replies 8
Last reply 8/29/2015 - 7:23am

I met with my doctor at MD Anderson. Good news! My scans are stable (after 3 ipi/nivo infusions, 1 ipi infusion, 5 nivo infusions). There's a really good chance that anything still showing in the liver is just scar tissue.  They are going to ultrasound a spot I feel on my chest to be safe - it's kind of covered by my port on the scans. My thyroid is also super out of whack because of the meds, which explains my fatigue and weight gain. I'll go on meds for the thyroid. But overall, AWESOME news! 

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cricket's picture
Replies 4
Last reply 8/19/2015 - 6:38am
Replies by: Mom2Addy, cricket, stars

Hello,

I've had over 50 biopsies since November of 2012.  4 were melanoma and two basal and squamous cell. Of the 50, 5 biopsies come back benign. All others were atypical, severely atypical, pre cancerous, basal cell carcinoma, squamous cell carcinoma or melanoma. I recently had 10 biopsies, I go back on the 31st of August for 2 exisions and 6 cryo treatments. I feel like going around in circles. Skin check, schedule biopsies (wait 4 to 6 weeks for the appointment), have biopsies (wait 2 weeks for results), get results, schedule excisions (in 4 to 6 weeks , first available appt) and by now we're past time for my 3 month skin check and we do it all over again. It's been this way for almost 3 years! There has to be a better way. 

I really do need to see a Doctor that can at least do Mohs surgeries. 

My dermatologist says that it would be impossible to take every suspicious mole off of my body at once. .

Any recommendations? I'm in Charlotte, NC 

Mary 

Cricket

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camdon08's picture
Replies 2
Last reply 8/17/2015 - 10:20pm
Replies by: Christine.P, cricket

I recently noticed that a mole on my right shoulder/chest had something black (almost like a scab) coming out of it. Without thinking I pulled it off which made my mole bleed. I have tried to find info on what it could have been but with no results. I am hoping that someone can give me an idea as to what the black thing was and why it was coming out of my mole. 

 

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distracted's picture
Replies 6
Last reply 8/19/2015 - 3:43am

Just saying hi at the moment. Invasive Melanoma in the chest, Breslow 6mm, Clarks IV. Removed and biopsied, Stage 2 confirmed.  

MRI (brain), PET/CT, Ultrasound (with needle biopsy) results due in a day or so.

1.1cm abnormality found in the draining lymph node. 2 abnormalitles found under the arm. (These are the areas needled biopsy and currently with pathology)

Stage 3 confirmation a certainty. Stage 4 pretty much the same.

I have a great team looking after me.

 

PET/CT scan are amazing though I wish I knew more about how to read this stuff. White spots on the brain, just stuff like that but I will know more once I have seem the report, . I am currently hoping for the best, but preparing for the worst.  

 

 

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