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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Anonymous's picture
Anonymous
Replies 2
Last reply 8/9/2010 - 5:45pm
Replies by: Anonymous

Thank you.

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regina Brittingham's picture
Replies 3
Last reply 8/9/2010 - 11:52am

Last week I had treatment at Stanford with CyberKnife for a small tumor in my brain. Things have gone well with some fatigue. Had one 30 min. treatment. Anyone else with experience or treatment?

The Best

Regina

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ValinMtl's picture
Replies 6
Last reply 8/10/2010 - 12:49pm

I have been wondering a lot these days...I am stage iv and, if (I wish upon a star NEVER) I become unable to post or suddenly pass away, can I give my password and user name to my close friend and sistah in life to report back to the group or since the new BBoard has started does that person have to establish her own identity due to guidelines...definitely, would not be used unless I am unable.  Val

Live Laugh Love Nothing is worth more than this day!

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Hi there everyone,

Thank you for taking the time to read my words and hopefully giving me some guidance.  I want to beat this horrible monster, I have so much to live for, and much determination, love and faith to rely upon....  Im just a little lost atm and wondering If I am being realistic in thinking I can beat this. 

My name is Simone, im 34, and live in Melbourne, Australia.  I was first diagnosed stage IIc in 2005 & remained NED until 6 weeks ago when I found a lump under my arm.  It was confirmed mel and scans showed many spots on my liver as well, making me a stage IV suddenly :-(  

I was immediately tested and found positive for the V600E BRAF Mutation and therefore went into the BRIM 3 Phase III Study for patients with this gene to receive R05185426 or Dacarbazine.  Obviously my oncologist, myself and my family were hoping and praying that I got the R05185426....  BUT unfortunately Ive ended up with the Dacarbazine.  I was shattered but had to pull myself together quickly to start chemo. 

Ive now had 2 rounds of chemo, have handled it very well, and the lump under my arm does feel to have shrunk, BUT I am just SOOO SCARED.  I am having a scan done in 2 weeks, and I am dreading it...  What if the results are worse?  Could I still beat this?  Apart from melanoma, I am in excellent health and fitness, and am eating well and exercising.  

I am wondering 'Is this the best treatment for me atm?', "Would i be receiving the same or better treatment options if i was in the US or Europe?'  "What have other patients tried who have been in my situation?'  "Any success stories with Dacarbazine? or other chemo?'

Please help me, Im feeling so alone and frightened :-(

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/8/2010 - 5:07pm

My wife is getting ready to start WBR and I am curious if anyone on this board has been through this treatment before.   Looking for any positive notes if possible as well as side effects and expectations after treatment both immediate and long term.  Thanks for the help

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My oncologist advises me that I can have injection, which I believe is done under the skin in the patient's stomach, to boost my white blood cells, presumably to help fight any infections with chemotherapy. He did warn me that such an injection sometimes give people bone pain which does not respond to normal painkillers. Further he said sometimes patients have to go into hospital for treatment to cope with the pain. I don't know the name of the drug used for the injection and was wondering if anyone has had such an injection -- if so what side-effects did they suffer, and for how long? Any information would be appreciated

Janet 

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KellieSue's picture
Replies 9
Last reply 8/7/2010 - 2:15pm

After finishing the ALT-801 trial on July 2nd I continue to have positive results.

CT scan today showed stable disease! I would have liked to have seen more shrinkage but

the Dr. said I could continue to have an immune response months down the road! I'm hoping for that! :)

Haven't been around in a bit but glad to come back and keep in touch with everyone.

Kellie(from Iowa)

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Anonymous's picture
Anonymous
Replies 0

Lauren,

 

I pray for Jenna daily..how is she doing?? I hope that she is responding to IPI.

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jeanne harvey's picture
Replies 17
Last reply 8/7/2010 - 6:08pm

 

For 7 years, my sis, Jan Brockelman (JanB) fought a very courageous battle with dignity and persistence.  She lost that battle last night. Jan was an amazing wife, mother, sister, daughter and friend with a smile that could light up a room.   Jan wanted me to thank each and every one of you for your support, knowledge and guidance through this process.  This board was very special to her and to me.

 

Keep fighting, learning & laughing. Jan wouldn't want it any other way!

 

JanBsis

 

 

 

 

 

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MaryBZ's picture
Replies 1
Last reply 8/6/2010 - 7:11pm
Replies by: KatyWI

Hi Katy,

 

I noticed you live in Appleton.  I am in Little Chute (we're practically neighborssmiley)  Just wondering if all your follow up appts are in Milwaukee or if you see an oncologist in Appleton?  I did get a second opinion from Dr. Albertini in Madison (loved him-very caring and compassionate) but I didn't want to drive to Madison for all my follow ups so currently I see Dr. Guenther (smart man but our personalities don't "jive") at AMC.  Just curious cool

 

Mary

You don't know what your future holds but you know who holds your future!

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ocularmonster's picture
Replies 4
Last reply 8/7/2010 - 7:08pm
Replies by: sselig, jag, LizzM

we may have a good option for my husband's treament of ocular melanoma that metastized to his liver.  SIRT at Emory in Atlanta.  It is readioembolization. Has anyone experienced this treatment?  Ocular melanoma is resistant to systemic chemo treatment, therefore there have been very few options.  He was not a candidate for liver resection so this blast to his tumors may work.  side effects are minimal and it only targets the liver....

feel like a million bucks, look good, thought I was in perfect health until a MRI revealed my liver monster.

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skysar's picture
Replies 1
Last reply 8/6/2010 - 4:39pm
Replies by: Jim in Denver

Thanks for your input.  In addition to MDA I have an appointment with Jeffrey Weber at Moffitt in Tampa next week and will compare notes.  If MDA is the place, I have a starting date of 9/3.  We will see what Moffitt has to offer.

I would like to continue receiving your input....progress, side effects, etc.

Take care.

Sue (Atlanta)

 

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skysar's picture
Replies 11
Last reply 8/16/2010 - 8:03pm

Spoke with Dr. Hwu at MDA yesterday regarding the IPI/Temodar trial.  If you are enrolled in this trial at MDA,  I would be interested in finding out how you are tolerating side effects and also handling travel if you don't live in Houston?

Thanks for your help.

Sue 

Stage IV, lung mets

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Knutes Pam's picture
Replies 10
Last reply 8/9/2010 - 12:25am

Knute had gamma knife last wednesday for the two new brain mets.  We have started the weaning process from the steriods and hope to be able to get in an IPI trial in Sept.  He is doing well and is active on Facebook with the smaller screen provided by his I phone his visual problems are lessened.  A complete computer screen has too much visual information at one time.  It is a crazy side effect of his brain mets and their locations. We hope to get after those new lung mets in the near future.

Pam

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I was able to get in chat for a few minutes on the third. (My time and computer availability problems) NOT MRF problem. 

However when i next got to a place i could get connect to the Internet again, and before I started opening a window to the MRF, I started hearing the chat room bonging.  I then had the following occur.

 

JerryfromFauq: Why was my name on here when I came on line, (not to the MRF board).  I
heard the bonging , but had no windows open to the MRF.  Went to the off-topic BB and it said
I and Laura were in chat.  I had to go to the MRF website and log in then click "

JerryfromFauq: "Click here to chat"  When the chat window finally came up, Laura was gone.

 I have not been  on line anywhere for a couple of days!

Jerry

 

PS do  like some of the additions like the spell check and images.

I'm me, not a statistic. Praying to not be one for years yet.

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