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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Charlie S's picture
Replies 4
Last reply 4/18/2011 - 5:28pm

Come one and come all to chat.  Stage I to Stage IV most welcome.  

All cyber drinks are free and frequent.

Bitch, whine or moan are welcome as are the magic and wisdom  of tomorrow.

Be there. You will be glad you did.

Tuesday, April 19, 7-9 EST

Charlie S

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Hi, everyone, 

Brent is my husband and we are sitting at MD anderson as I write.  He has been on the GSK MEK trial for 14 months and progressed last scan.  Now he doctors want to place him on the MEK chemo combination with Alimta which is approved for lung cancer.  Or we can wait for the MEK /PI3k trial to open sometime in the future here at MDA.  Today after making a few calls to GSK  I found that a Nashville location has the trial we want MEK / PI3K.  Not sure if he can get in.   I don't know what to do or think.  He has had chemo agents in the past and they really knock the Hell out of him physically. 

Does anyone have any input???

Thanks for taking the time to read this.

Sharmon

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awg's picture
Replies 4
Last reply 4/18/2011 - 1:02pm
Replies by: joy_, awg, Fen

Stage 3a Melanoma w/1 positive Superficial pelvic node, deep node was negative.

My plan consists of Superficial Node Dissection (open method) and 12months Interferon.

I am seeing studies and reports where the superficial pelvic lymph node dissection is being performed using robotic assistance via a small incision on the top of the upper thigh.

I am looking  for information on facilities that offer this method as well as form feedback from anyone who have had robotic assisted dissection.

I am also interested in hearing from open method pelvic dissection recipients on how the recovery went, lymph edema and the best method to manage the edema.

 

Thank you,

AWG

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Anonymous's picture
Anonymous
Replies 27
Last reply 4/18/2011 - 12:53pm

On Friday I joined your ranks. Last summer, I noticed a mole that had grown up, like a skin tag. I didn't like it but waited until my annual physical to ask my family doctor who thought it was nothing. I was seeing a dermatologist for other skin issues so I asked my dermatologist. She didn't think it was anything. When I was back for another treatment of the other skin issue I asked to have it removed for cosmetic reasons which happened on March 25th. Mar 31 I get called backed. The pathologist grapped my dermatologist in the hall to say that the benign lesion was melanoma. I met with my dermatologist on Apr 1. She didn't have the pathology report yet but told me that it was 1.45 mm and level iv. She had already requested blood work (for LDH), CT-scan and SNIB. Meeting with surgeon is tomorrow and CT is Thursday evening.

Like many who are newly diagnosed, I'm scared but I'm trying to manage my emotions until the facts are in. Anyone in Ottawa with melanoma treatment experience?

Be Not Afraid-God is with you always Stage IIIa

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ValinMtl's picture
Replies 0

Hi Donna,

I'm having trouble getting that leg garment in Canada that we discussed.  I did call one store in Burlington but they never called me back (her name was Meg).  Do you have the phone number of the store that you ordered it at.  Many thanks, Val

Live Laugh Love Nothing is worth more than this day!

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Nad T's picture
Replies 5
Last reply 4/18/2011 - 7:32am

Oh man, am I on the main board?  Being a Melanma push I am now a stroke push.

Understand the symptons - Respoind.

My arms are purple.

Now can I have my son back?

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mrsmarilyn's picture
Replies 4
Last reply 4/17/2011 - 8:17pm

Hello Everyone.  My brother Gary going to SC in Nashville has been on the MEK/BRAF combo for about 2 months and is having frequent bouts of high fever and nausea.  He was on the Braf (GSK) initially and they moved him over to the combo - after the BRAF stopped working.  We were wondering if anyone else is having any similiar side effects, and how eveyone on this trial is doing.  On a good note-he has went from 7 spots - to only one stubborn one in the pelvic area.  Thanks and hope to hear from this oustanding group of brave people, we have grown to love and depend on.

Best regards,

MrsMarilyn

Sister of Gary Stage IV

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mike_nj's picture
Replies 5
Last reply 4/17/2011 - 8:00pm

Closing in on my 7 year point after the stage 3B  diagnosis.  Yesterday's X-Ray of chest looks clear from report and next week I visit to UPMC for followup.  As far as I know I am NED.

Wanted to post to share some hope with my fellow patients as they await scans and X-Rays and other tests

Still taking my assortment of supplements.

All the best to all patients and caregivers

Mike from NJ

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Hi, i wanted to share this UTUBE video of Pulse Technique:

.http://www.youtube.com/watch?v=E44bC8V3Ebo

Helpful for healing and clearing energy

don't back up, don't back down

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boot2aboot's picture
Replies 29
Last reply 4/17/2011 - 1:21pm

i am BRCA2+ so i already have gynocological cancer surveillance...my armpit was sore for awhile and i thought i pulled a muscle...imagine my surprise when i found a HUGH lump...i called my ONC and she did a core and FNB along with an abdominal CT, Bone Scan and Mammo....it took the pathologist a really long time to find out what type of cancer it was....i think my doc and i were shocked when i ended up with a melanoma diagnosis....we were expecting breast or ovarian...i know nothing about melanoma, where the primary site is or anything...i am sitting here all alone scared and with lots of questions...she got me an appt with a melanoma onc...i go see her wednesday....but i am in complete shock...and the only indicator that i had melanoma is a hugh tumor in my lymph node.....

don't back up, don't back down

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Terra's picture
Replies 3
Last reply 4/16/2011 - 7:24pm
Replies by: Terra, emilypen, sharmon

Hi, my husband just started a trial of P13 K and Mek inhibitor two weeks ago.  The rash has certainly started on his face but also some swelling - does anybody know if inhibitors might cause some swelling - I don't recall it being one of the possible side effects.

 

Thank-you,

Terra

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smatlock41's picture
Replies 4
Last reply 4/16/2011 - 4:29pm
Replies by: Janner, MichaelFL

I was just diagnosed with melanoma in-situ clark level 1 on my right cheek. The shave biopsy they sent was .5cm X .5cm. It said the cells were only on the epidermis. They have referred me to a plastic surgeon and said I didn't need to see an oncologist. Has anyone had this on their face and if so how much more did they have to take out. They said once they go back in that is usually all you will need to have done except getting checked every 6 months or so. I'm worried about the scarring and just wanted to hear others experiences. Thanks! 

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dian in spokane's picture
Replies 8
Last reply 4/16/2011 - 10:19am

I loved Charlie's suggestion for hosted chats, and although no one at the MRF has not answered that post yet, I think we can start it ourselves if some of the long time members just post chat times.

With that in mind, I will be in the chat room today (april14th)at  4:30 Pacific Daylight time, and again tomorrow morning at 8:30 am Pacific. Since someone mentioned that the evening chats are too late for them, I thought I'd try some morning ones.

Anyone can join in chat, but one IS required to register and log in. Don't let this stop you, it's a very simple procedure. Just go up to the top of the page on the right, and click on the Log In button. You need to choose a name to use (which can be a nickname or your choice, it need not be your real name) and an email address. Registering and logging in aids you in reading the bulletin board as well. If you are logged in, the board will show you which 'threads' have new replies which you have not read. You are always given the choice of posting anonymously, so even if you register and have an official 'name', you do not have to use it for your posts. But you do need it to get into the chat room

When I first found this site, one of the first things I did was go to the chatroom. I can't tell you how much comfort it gave me to talk to others who actually understood my fears, and could answer questions for me about Interferon. I spent many evenings there while on interferon, with Charlie and Barth and the ladies making me laugh so hard. I was so sad back then about the return of my melanoma that I was surprised I could laugh about such silly things, but it did me so much good to feel 'normal'

I hope we can do that for some of you.

Dian in spokane

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Hi everyone, I posted here a week ago about the lymphoscintigraphy (FYI I endured it, the peole were SO NICE, even let me bring my ipod to calm my nerves. Used no lidocaine. Stung like a bitch for about 5 secs, then it was over. 2 shots, pain in the ass, but not as strong as ME). The next day after that test I had surgery, wider excision for where the mole was on my chest. I was put to sleep and they took out a wide section and went deep (my mole was 3.8cm deep). They also did the biopsy under my arm of my lymph node.

Now one week later I am still healing. Like I said before, it's a pain in the ass, but not as bad as I had thought pain-wise. I can do this. Healing is going slow, though. I know it's only been a week, but sometimes feels like forever. Since I had the surgery on my upper mid chest, I've had to wear this compression bra ever since I got out of the OR. This huge incision on my chest hurts more than the smaller incision under my arm where my lymph node is, but I have a feeling it's going to get worse.

Got a call today from my surgeon's office. It wasn'y the surgeon, but someone (a nurse maybe?) that had my results for me. She said she didn't want me going all weekend without any results. Anyways, the chest area excision was clear, no cancer. But the lymph node under my arm had cancer in it. When my surgeon took out my lymph node, she said she could tell it was cancerous because it was darker than the ones around it. The person on the phone today said that my surgeon will want to do more surgery and take out more lymph nodes to biopsy, but she will talk to me more about that when I meet with her next week on Wednesday. I asked if they had a new stage for me, and she said no, the surgeon will discuss that with me next week. I'm currently a stage II.

I read somewhere on here that if you have cancer in your lymph node, then you're automatically upgraded to a stage III. Is that true?

Had anyone ever had to go back and do more lymph node biopsy? Did you have to have a drain? I didn't have one the first time but I want to prepare myself just incase I get one the second time.

After I meet with the surgeon, I have an appt with my oncologist later that day to discuss my path results. Because of the biopsy results this just about insures that I'll have to have some kind of chemo, right?

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Anonymous's picture
Replies 9
Last reply 4/16/2011 - 8:15am

Hello.  

I would like feedback from people experienced with Melanoma staging based on the AJCC staging charts, and what each persons Doctors have told them. I am Specifically interested in stage IIIC but please feel free to add anything, no matter what your stage.

 

Acording to the "staging charts" a person who is a stage IIIC has what is considered advanced melanoma, and with a few variables, the five year  "prognosis" varies from 15 to 29 percent chance of survival.

Is this accurate?

If you have stage III melanoma, and the risk of recurrance is high in the first 5 years, are your chances of survival greater if you get past the 5 year mark?

Is there any way to know where the melanoma will recurr (as in what part of the body)?

Are you in remission if your cancer has been removed?

When are you cured from Melanoma?

What can a stage III person do to prevent Melanoma from returning?

If the "prognosis" for stage III melanoma is so severe, what is the average amount of time until recurrance?

 

Thank you to anyone who helps with these questions.

I realize some of them may seem dumb, but I am trying to understand where someone stands based on the statistics.

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