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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Ali's picture
Replies 15
Last reply 3/30/2012 - 1:51pm

Just wanted to check in and update the progress we are making with IL-2.  The scans after my first cycle (one week at the hospital, one home to recover, another at the hospital) showed shrinkage and stable disease.  All the tumors in by breasts that I could easily feel with my fingers (and were determined to indeed be melanoma with a needle aspiration biopsy) melted away during my stay at the hospital the second week.  The liver tumors have not grown.  The ones in my bones were radiated right before IL-2, and look like dead tumor to the Dr.  We are pretty thrilled about all this!  I am curious to know what other responder's experiences have been.  They are not calling me a partial responder yet, just stable disease.  I know the liver is a hard one to get to, but there are complete responders who have had liver mets, yes?

I am not going to lie, the weeks at the hospital are pretty bad.  I have done three weeks now and each one has had its own kind of torture.  The first week was fatigue, high fevers, chills, nausea.  I don't remember much at all about that week.  The second week was blood pressure issues, and rigors (body chills) that were hard to get rid of.  And a long recovery when I got home.  The third week I was just sick as a dog, throwing up every time I got out of bed.  It was my easiest recovery though. 

Every week included flu like symptoms.  I have not had the bowel issues I read about.  I gain 20 lbs of water by the end of each week, which wouldn't be so bad if I didn't have lympedema in my leg.  The water loves to hang out there for a few days.  Not fun.  I feel like I would do anything to beat this, and IL-2 seems to match my intensity. 

Good luck to all in this battle!  I think of you often and thank you for the support and hope you have given to those of us new at the stage IV thing.

Ali

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Great article just published on another approach to melanoma.  Check it out here.

http://www.newswise.com/articles/studies-pox-vaccines-extend-survival-for-patients-with-melanoma-ovarian-cancer

 

Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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LynnLuc's picture
Replies 9
Last reply 6/18/2012 - 9:12pm
Replies by: margaretrogers57, Anonymous, azulu, LynnLuc, kylez, Maxximom

I have to share this...they are bumping up the Anti PD-1 trials -they are also happy with my NED statis! ...I know this because BMS called me just now...they are also going to send me a job application because I added a PS  stating I want my life back and I need a job...any available LOL  ( I just go the job app =:o)

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Wilson's picture
Replies 4
Last reply 3/29/2012 - 11:15am

Not that I'm so much of a calendar watcher, but it dawned on me that this is kind of a big date. 

Now...the task at hand is another (hopefully "routine") six-month exam by my oncologist in a couple of weeks. 

I wish everyone her the best of luck!

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bikerwife's picture
Replies 1
Last reply 3/26/2012 - 9:07pm
Replies by: aldakota22

lYNN had his fourth treatment today not sure what it meant  but Dr. said something in blood was dropping and his exact words were good, good, good.  He may have to have radiation under arm on growth just not sure yet. We have scans in 2 weeks and then again in 2 to 3 months. He said it may show growth in 2 weeks but not to worry (yea right) cause that happens at times.  So i guess we wait again ready to be NED.  My husband has 26 years and 7 months needs 1 year and 5 months to retire.

What God leads u to he will. Lead you through

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LynnLuc's picture
Replies 8
Last reply 3/28/2012 - 10:38am

Happy NEDaversary to me , Happy NEDaversary to me, I'm alive and still here, Happy NEDaversary to me!! 2 years since the thoracotomy and 74 weeks of the Anti- PD-1/peptide trial and I am still without evidence of disease...and to think my B day is coming up! I love getting old!!!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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MeNDave's picture
Replies 13
Last reply 3/26/2012 - 6:45pm
Replies by: Kimberly Duncan Watts, LynnLuc, MeNDave, Anonymous, cltml

Dave goes tomorrow for his scan results.  He has been doing the low dose Temodar since November.  We are obviously hoping that it continues to keep him stable, but his onc did say if there wasn't signifcant reduction in tumors, he wanted to switch him to the MDX-1105 (I believe it is now listed as BMS936559)  trial at Roswell.  I haven't heard much feedback on this particular trial, and after Candi's post on Mercks drug, I'm wondering if there is a clear leader in the anti-pd1 race.  Any feedback, as always, is greatly appreciated.

Best to all of you,

Maria

Don't ever, EVER, give up!

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Lea H's picture
Replies 8
Last reply 3/28/2012 - 1:13am

Hi Everbody.

I joined this forum in the hopes of finding out what new treatments and trials were out there.  My husband, Erik was diagnosed with Stage 2 melanoma in 1998 and after a wider excision, he was given BCG injections for 3 years.  We thought we had kissed this disease goodbye but then in 2004 it reared it's ugly head again.  Erik found a swollen lymph node under his left arm and our worst fears were confirmed.  What followed was 6 months of low dose interferon followed by 6 months of decarbazine and then a further 6 months of Interferon.  He then had radiation under his arm.  We held our breath and waited and years went by and we slowly put the dreaded MM to the back of our minds.  For another 6 years Erik was NED. Then in May 2011 we decided to move our family from South Africa to Norway to give our young sons a better life. All was going well and then on the 8th of November 2011we received the devastating news that not only had the melanoma returned but that he had multiple tumours.  Erik was a courageous viking warrior and he was not going to give up without a fight.  He had too much to live for!  After 6 long agonizing weeks while we waited for BRAF results from Germany, he finally got the go ahead to start the Zelboraf trial.  On the 18 of December he started the trial and the results were nothing short of miraculous!  Within a week all the soft tissue tumours had disappeared.  Before starting treatment, Erik was unable to walk as he had a massive tumour pushing on the side of his spinal cord.  Within 2 days he was walking absolutely perfectly again and he did not get out of breath when walking 10 paces.  He read Lance Armstrong's book and was inspired to do the same.  Each day he would have a little ritual when he took his bombs (as he called them) He would talk to each one and imagine it attacking a specific tumour.   We had a wonderful Christmas and things were going well. Then at the end of January Erik had a seizure.  A MRI revealed 9 spots on the brain but as they had not scanned the brain previously, we were not sure if they had been there all along.  Erik had his first protocol CT on the 8 of February and his oncologist was thrilled with the results.  All the tumours had shrunk, some more significantly than others.  Two weeks later he was in a lot of pain again.  He had significant pain in his right thigh and groin area.  After not being able to control the pain effectively with Oxycontin and Oxynorm, we went back to the oncology ward at the hospital where they admitted him.  Further CT's and MRI's revealed that in 2 short weeks the Zelboraf had stopped working and the tumours were all back to their original size and bigger.  On top of this, Erik developed an infection that they were battling to fight.  He managed 1 day of decarbazine but his infection levels were to high to continue. Erik never gave up and when given the bad news he would just say, "okay, what next"  Sadly this courageous husband and father passed away on the 6th of March after a battle bravely fought.  It was just 2 days before his 44th birthday. I have been so inspired by reading all your stories and I would often relay them to Erik.  This is the first time that I have posted on this forum but I felt I owed it to my brave husband to share his story.  I wish all of you many years of NED!

 

Leanne

When life serves you lemons, make lemonade.

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Lea H's picture
Replies 1
Last reply 3/26/2012 - 8:46pm
Replies by: gabsound

Hi Everbody.

I joined this forum in the hopes of finding out what new treatments and trials were out there.  My husband, Erik was diagnosed with Stage 2 melanoma in 1998 and after a wider excision, he was given BCG injections for 3 years.  We thought we had kissed this disease goodbye but then in 2004 it reared it's ugly head again.  Erik found a swollen lymph node under his left arm and our worst fears were confirmed.  What followed was 6 months of low dose interferon followed by 6 months of decarbazine and then a further 6 months of Interferon.  He then had radiation under his arm.  We held our breath and waited and years went by and we slowly put the dreaded MM to the back of our minds.  For another 6 years Erik was NED. Then in May 2011 we decided to move our family from South Africa to Norway to give our young sons a better life. All was going well and then on the 8th of November 2011we received the devastating news that not only had the melanoma returned but that he had multiple tumours.  Erik was a courageous viking warrior and he was not going to give up without a fight.  He had too much to live for!  After 6 long agonizing weeks while we waited for BRAF results from Germany, he finally got the go ahead to start the Zelboraf trial.  On the 18 of December he started the trial and the results were nothing short of miraculous!  Within a week all the soft tissue tumours had disappeared.  Before starting treatment, Erik was unable to walk as he had a massive tumour pushing on the side of his spinal cord.  Within 2 days he was walking absolutely perfectly again and he did not get out of breath when walking 10 paces.  He read Lance Armstrong's book and was inspired to do the same.  Each day he would have a little ritual when he took his bombs (as he called them) He would talk to each one and imagine it attacking a specific tumour.   We had a wonderful Christmas and things were going well. Then at the end of January Erik had a seizure.  A MRI revealed 9 spots on the brain but as they had not scanned the brain previously, we were not sure if they had been there all along.  Erik had his first protocol CT on the 8 of February and his oncologist was thrilled with the results.  All the tumours had shrunk, some more significantly than others.  Two weeks later he was in a lot of pain again.  He had significant pain in his right thigh and groin area.  After not being able to control the pain effectively with Oxycontin and Oxynorm, we went back to the oncology ward at the hospital where they admitted him.  Further CT's and MRI's revealed that in 2 short weeks the Zelboraf had stopped working and the tumours were all back to their original size and bigger.  On top of this, Erik developed an infection that they were battling to fight.  He managed 1 day of decarbazine but his infection levels were to high to continue. Erik never gave up and when given the bad news he would just say, "okay, what next"  Sadly this courageous husband and father passed away on the 6th of March after a battle bravely fought.  It was just 2 days before his 44th birthday. I have been so inspired by reading all your stories and I would often relay them to Erik.  This is the first time that I have posted on this forum but I felt I owed it to my brave husband to share his story.  I wish all of you many years of NED!

 

Leanne

When life serves you lemons, make lemonade.

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/25/2012 - 10:29pm
Replies by: aldakota22

Has anyone heard from her?

Insert Generic Inspirational Motto Here

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/28/2012 - 2:07am

Im just preparing myself for next weeks scans for my dad, I think it's now 3 mnths without scans on Zelboraf which he started OCT 2011. If there is new growth what do you think we should try next?

I know it really depends on where you live (for trials) and we are in Melbourne Australia. I'm wondering if anyone has been on Zelboraf and had surgery at the same time? The late Jim Stynes RIP had 24 surgeries including 6 in his brain, he was only 45 and AFL footballer, do you think his treatment was more aggressive because he's young and fit or due to his high profile. My father shares the same oncologist and I suppose Im just really stressing out for him. Has anyone had SRS on their liver?

I just want them to go in and remove the tumors that can be removed and SRS the liver where there are four small lesions.

What are your thoughts.

Thanks advance 

Nahmi (daughter of patient)

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I have a painful node sticking out of my right flank.  I can't see the surgeon until the 4th.  The pain pills are just so so.

Any hints?  anybody else have painful lesions?

thank you

Theresa

Stage 4

Every day is a miracle.

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Kim41's picture
Replies 4
Last reply 3/26/2012 - 3:13am
Replies by: Kim41, gabsound, washoegal

Abnormal PET scan Feb 2/1/12. Post surgical changes seen in left groin. Questionable more slight density in left groin when current exam compared to last PET/CT. Some new areas of hypermetabolic activity seen in involving portions of the neck on the right side  and at the level of the right paratracheal region and right hilum and axilla are nonspecific. The spleen appears more hypermetabolic when compared to the last PET/CT scan. The possibility for progression of disease is considered.    My melanoma specialist said he is unimpressed by results of this PET scan. What do you fellow people think. It is March 23and I have been feeling very tired and weak in the last several weeks with pain in my right flank and in both right and left lung bases. Not sure if I should be concerned or not. I have my next scan May  23rd. Should I go to the doctor before that?. Also having pain on and off above both clavicles right and left. Mostly concerned about pain in lateral rib and back area. Has anyone else had this pain. Maybe its nothing to worry about. feeling so tired lately though. I would welcome some feedback. Thanks

         Kim

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Moodypoodle's picture
Replies 12
Last reply 3/25/2012 - 8:06am

I'm posting for the first time though I've been lurking since my diagnosis in January. I'm impressed with the discussions I find on this board. Please bear with me since I haven't acquired the vocabulary yet.  In a nutshell: I had a non-healing (painful) wound on the ball of one foot for over a year. No history of diabetes. Lots of cultures. Finally a biopsy.  It came back amelanotic malignant melanoma. Clear scans otherwise (PET/CT, bone. bloodwork, chest x-ray). Surgery--mid-foot amputation last month....i'm still struggling with recovering from that one. It took a while to learn I was staged IIC because something was a 5 and something else a 4; even though the offending half of the foot is GONE!  The oncologist called me yesterday to say it was time to discuss treatment options and that the standard for my case would be interferon. We have an appointment (the earliest we could manage) for Apr 6 for an in depth discussion. Then just this morning I received an overnight UPS box of 4 vials of Sylatron (weeks 1 and 2).  AGGHHHH  I thought we were going to have a discussion and I planned to keep an open mind. Apparently she thinks this is a done deal. What I read online leads me to believe quality of life suffers greatly on this stuff for the better part of a year with questionable results. Everything in me is screaming no, no, no.  At my age, 71, quality of life is an issue!  Maybe I'm just scared or maybe I just need reassurance that I do indeed have a decision to make regarding this treatment.  Thanks for listening (!).  

Ann

Every Second Counts!

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The results of my SLNB came back inconclusive again.  Doc said there was a positive stain for microscopic melanocytes, but nothing "extremely concerning".  He decided that no further treatment is necessary right now and has kept me at stage 2a.  I haven't had a CT scan or any further imaging.  Apparently he is presenting my case at a melanoma conference on April 4th.  Hoping a lot of great minds will shed some light on my situation.  I am sharing this in case someone has any brilliant insight.  :)

My inconclusive results again:

Sentinel node right axilla, biopsy:
One lymph node with S100-positive cellular aggregate of uncertain significance. Immunohistochemical stains of S-100, Melan-A, and HMB45 were performed on specimen B per the sentinel lymph node protocol. A single focus of S100-positive cells is present within a sinus immediately subjacent to the capsule on the initial level of the right axillary sentinel lymph node. This aggregate is not present in subsequent sections stained for HMB45 and the histiocytic marker CD-163.

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