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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It was just suggested to me by a new friend to post this question.   I am B-RAF positive.  How many of you out there that are B-RAF positive have ever had any luck with IL-2.  What was your experience.   Would love to hear your answers, since I am currently trying to decide my best course of action.

Hugs and Smiles to you all

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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It seems that melanoma stem cells are one reason why current treatments have limited success once metastasis has taken place. Although there is still much work to do, some promising research has been taking place. Here is an article that makes interesting reading:

New Therapies Offer Insight Into Battling Deadly Melanomas 

http://health.usnews.com/health-news/family-health/cancer/articles/2011/01/31/new-therapies-offer-insight-into-battling-deadly-melanomas

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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glewis923's picture
Replies 2
Last reply 2/19/2011 - 3:12am
Replies by: Anonymous, glewis923

I'm sure most of you are aware of this, but here's a new version email today.  I just wanna know where I can stand in line to get it !,  and then stand in line to get IPI at the same time,  and not tell the respective Drs. that I'm getting both !!!!!

http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/...

 

Love, Grady & Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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CLPrice31's picture
Replies 25
Last reply 2/18/2011 - 11:58pm

Hi all! I am the latest newbie...stage 3, "some would say stage 4" 23 year old from Virginia.

It started similiarly to many other stories. I was washing the dishes, had an itch, scratched my back and felt something unusual: the mole on my left shoulder felt like a scab. When I had my boyfriend look at it, he realized there was a clear fluid coming from it. Although the mole had healed by my appoinment with my dermatologist, I decided to have it checked out anyway. He seemed confident it was nothing, but just to be sure, he removed it.

On January 10, 2011 I went in to have my stiches removed. I am joking with the nurse, making plans for my evening, when the doctor walks in. I hear, blah, blah blah, "Malignant Melanoma. No, I wish I was joking."

Oh.

That is SO not what I want to hear...

On January 26, 2011 I went in for a wide excision and a lymph node biopsy. Unfortunately for me, 4 areas lit up when the tech's injected the dye: both armpits, both sides of my neck. Prior to rolling me into the OR, my surgeon let me know that if he could find the lymph nodes, he was removing them. Waking up from surgery, he, who I refer to as Dr. Pink (breast cancer advocate,) was right there...Yes, he removed nodes from all 4 areas. Yes, it's going to hurt for a while.

(Dr. Pink was right about the pain...OUCH. And the numbness I still feel 2 weeks later? Very odd. Lucky for me, my body rejected either the tape they used to cover the incisions or the glue used to seal me shut...Now I am covered in an itchy, raw, red rash. I started an antibiotic a week ago, so far it is not working.)

A week of pain and waiting passes...the oncologist, (who I refer to as Dr. Bad Mustache. Love him but...!!) calls me into the office. 3 out of 4 locations tested positive for metastatic malignant melanoma.

More bad news.

Off I go for the PET CT and MRI...Both came back clear! Finally...good news!

Now...here's where I need help. My oncologist here believes Interferon is my only option at this point.

I don't like what I have read about Interferon so far.....Experiences from you all? Thoughts?

I have an appointment with Dr. Mark Dickson at Sloan Kettering in New York City on the 25th of this month. Any opinions here?

My oncologist here stressed that I am an "odd" case. My original melanoma was only 1.15 mm. It hardly made critera for additional testing. He admitted to us this week that he did not believe my lymph nodes would come back positive. And he especially could not believe that multiple locations were positive. In his words, "You are an odd case. Right now all we know is that it has the ability to spread."

Any advice, support, experiences...I would greatly appreciate hearing it all. Like many of you, I have a hard time resting. I am doing as much research as I can possibly do, but sometimes that does nothing but terrify me even more!

In advance, thank you for any and all help!

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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KellieSue's picture
Replies 3
Last reply 2/18/2011 - 11:13pm
Replies by: lhaley, glewis923, Lori C

Well, met with oncologist today and I did test positive for B-RAF. But.....apparently my insurance company now has to pre-approve me for a clinical trial. WTF? It's not like they will be paying for it, well I guess if I get the chemo arm they will. But c'mon. I wait 2 weeks for the results and then I have to wait again? If I'm denied I know my oncologist will just keep reapplying until they say Yes.

I had a good long discussion about all my options and I feel confident going forward with B-RAF. IL-2 is not out of the picture but with the toxicity I faced with it and the long recovery I would not finish the round now, I would start over again. I'm not against it but right now I'd prefer to try something that might not make me so horribly sick.

Another 8 weeks of ALT-801 might be an option also. DR. is trying to allow them to dose me at a higher dose than before. I responded both times I did an 8 week cycle.  

So I guess waiting around again.

Kellie(from Iowa) Stage IV since June 2008

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

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Emrina's picture
Replies 4
Last reply 2/18/2011 - 9:05pm
Replies by: SusanE, Hawaii Bob

Good Day to you all from South Africa.  My husband was diagnosed with Stage IV MM on 22 December 2010.  The Melanoma has spread to 2 occipital lymphnodes, right cervical lymph node and additional smaller (sub-cm) nodes as well as a single  node present in the posperior mediastinum and both lungs (muliple bilateral pulmonary metastases).  He was given 3 options.  No treatment, DTIC or the Clinical Trail.  We went for a 2nd opinion and the diagnoses was the same.  He was approved to take part in the OncoVex Clinical Trail.  Luckily he got the OncoVex GM-SCF arm of the trail.  He had his first injection on 18 January 2011 and the 2nd on 8 February 2011.  His next injection will be 22 February 2011.  He had side effects like headaches, vomiting, nausea, body aches and pains, tiredness and overall just not feeling well.  With the 2nd injection he had with the mentions side effects diaree also.  I have found only 1 guy in America that was on OncoVex for a year and he a "partial responder".  Is there anybody out there that is willing to share their experience with OncoVex with us. 

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mom3girlsFL's picture
Replies 1
Last reply 2/18/2011 - 7:37pm
Replies by: JakeinNY

Hi Everyone,

I have been an on/off "browser" since my initial diagnosis in 92 and find myself needing a support system.  A brief history:

1992 mole removed from shin, clark III/iV, breslow .9mm, wide excision performed

2010 enlarged groin node, PET confirmed

3/10 groin node dissection, 4/5 nodes melanoma

4/10 port installed, begin high dose interferon

5/10-8/10 hd int complete, self inj started - on and off treatment due to low wbc

9/10 PET new node, obturator node lit

9/10 obturator node/radical lymph node dissection, 9/11 nodes melanoma

Failed interferon.  No trials take me due to auto immune disease

11/10 NED!!!  PET clear!!!

11/10- present "watch and wait"

I feel like the luckiest girl alive after a year of sheer hell!  I am grateful for a place like this to come to.  I hope I can provide others with insight as well as continuing to learn from all of you about different treatments.  I hope to offer support and hope because I will be sure to ask for it myself as my journey continues.  Thanks for listening.

Laurie

Do not fear tomorrow, God is already there.

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Redhorse's picture
Replies 3
Last reply 2/18/2011 - 7:28pm
Replies by: LynnLuc, lhaley, TAC

Not sure what to do. Doc wants to cut me Dow the middle to get biopsies from both lungs. I can also just go with him taking one nodule from my left lung, see what it comes up with, and then wait for one of the nodules in right lung get big enough for another cutting session. I also have "numerous" nodules in the bottom of both lungs.
I don'think it is the same cancer. I have been diagnosed with prostate cancer that spread to my bladder, and had melanoma removed from chest in2007,
Anyone had this type of surgery, and if you had them go down the middle, please let me know how that turned out.

Thank you,

Miley

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EricNJill's picture
Replies 2
Last reply 2/18/2011 - 4:00pm
Yesterday, we were visited by two young men from Australia that are traveling the US on an 18 day tour to spread awareness about Melanoma.  In Dec 2008 when Eric was in the hospital from the surgeries to remove his lymph nodes I did a search to learn more about Melanoma.  I came across a video from Jay Allen of Australia.  His story was identical to Eric's.  I wrote Jay a note and thanked him for posting the video...then the next day I received an email from Jay.  Jay and I kept in touch ever since.  Monday, Jay celebrated 3 years without Melanoma.  Accompaning Jay on this journey is Clinton Heal.  Clint was just named Young Australian of the Year.  He also lives with Melanoma having had 34 tumors removed.

They came to our home and stayed with us.  We have formed such a bond.  Channel 2 came to our home and covered some of our story.  Here is a link to that coverage.  http://www.wdtn.com/dpp/news/local-cancer-patient-gets-help-from-down-under  The interview was actually an hour long but unfortunately a lot got chopped!  I really wish we could have had more information shared about Melanoma and the dangers...

Jay & Clint also interviewed my daughter Sam and my father.  They are posting those videos on their blog at www.melanomaroadtripusa.com

 
 

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Lisa - Aust's picture
Replies 1
Last reply 2/17/2011 - 7:19pm
Replies by: EricNJill

Hi Jill,

I saw you guys on the video blog with Jay and Clint! It popped up on my facebook! Great to see you guys are doing well, hope you are having fun with the boys.

All the best

Lisa - Aust

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I need advice---and maybe for someone to tell me to stop overreacting--but it has been exactly 3 weeks today since my sugery, I was healing well, handling the pain of the 5 incision, etc, until today. Although I have been taking it super easy, the pain tonight has been intense. It feels like my nerves are waking up in my shoulders, neck, arms. The numbness isn't really numbness anymore. It is more of a tingling pain. None of this is unusual...I have had these problems since the surgery. But it is becoming a little worse. For example, someone touched my chest bone to remove a piece of lint today and it HURT. not like a cry out in pain hurt, more of a "please don't touch me" type of hurt. Another example, my boyfriend ran his hand down the back of my arm and I cringed. I have had all of these pains before...but it seems intensified today. I don't know if I did too much yesterday/today?

What IS really unusual is the fact that my lymph nodes in my neck are swollen.

I was checking out my neck incisions tonight because of the pain level...started feeling around...it feels like there are two small rocks placed above the incision sites. Asked the boyfriend to feel and he said it definitely feels harder than he imagined it would...All other sites (both armpits, back incision) look fine...Still overly numb.

Should I be concerned? Should I call my oncologist tomorrow? I have an appointment at Memorial Sloan Kettering on the 25th, I don't know if I should wait until then, or check in with my local oncologist.

I realize I may be overreacting...but I was told to keep an eye open for swollen nodes...so now I am a nervous wreck.

I apologize if I am being dramatic........Advice, anyone? frown

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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tlynn's picture
Replies 11
Last reply 2/17/2011 - 12:40pm

so im coming up on my 2 year mark, i feel like nothing has been done... i have had 4 surgries and am constantly back at the doctor. On top of all that im a college student with no support system around me.... i have been looking for a chat site and stumbled upon this one by chance. My next apt. is on Thursday and im freaking out.. Any advice?

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Wetterhorn's picture
Replies 8
Last reply 2/17/2011 - 10:13am

Bright and early. 7 AM early as a matter of fact, up at Sloan Kettering.  5:45 AM arrival time. At least I won't have to wait around (hopefully) as I am first up. This will be my 5th surgery in 3.5 years. This time on my small intestine. Not looking forward to it, but hopefully I can say NED again tomorrow late morning.  Wish me luck.

Wetterhorn

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JoanR's picture
Replies 4
Last reply 2/17/2011 - 8:56am
Replies by: Sharyn, Anonymous, Janner

If you are reading this Sharyn, please know we are all thinking about you and hoping your surgery went well.   If Jim is reading this, perhaps you can let us know about Sharyn's condition, and also the address of the hospital where Sharyn is if in fact she will have a long stay..Cheers Joan

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My husband is stage 4 recurrent melanoma.  We tried IL2 but he has additional sites since.  He is BRAF negative and currently has mets on skin and pancreas.  Our doctor recommended surgery but now says they couldn't get to the pancreas nodules easily and isn't confident surgery could remove everything.  We did the Ipi clinical trial before the recurrence, but our doctor now suggests going on Ipi compassionate.  Does anyone have other suggestions?  Scans coming up this week and next and we are supposed to start the Ipi next Wednesday.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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