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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Denise - Wife of Mike Stage 4's picture
Replies 2
Last reply 3/28/2012 - 9:35pm

Hello everyone.  I remember all too well the day in 2006 when my husband was diagnosed with Stage 3C nodular melanoma.  It was the most difficult time in our lives.  We had 2 young daughters - had just settled into a new home - and we spent years in a battle with this beast.  My husband was moved into a Stage 4 category too - another devastating blow. 

After a year of Interferon, 3 surgeries, and a month of radiation....we waited to see what would happen.  Regular CAT scans and monitoring took place for a few years.  And what I have to report is really good news that I hope can give you some strength today.

Because I remember how much it helped to read stories of survival - I wanted to come back  and post a positive note to everyone.  Even though I am scared to tempt fate and report back how well my husband is doing......I know how much hope it can give to everyone in the blackest days.  He is proof you can "live" at Stage "4".

I used to post as Denise (Wife of Mike Stage 3C)....so there may be people here who remember me.

I am happy to say that in May of 2012 my husband will be a survivor of this disease and is now heading into his 6th year of survival. 

My husband's initial prognosis was bad.

Clark Level 5 Nodular  ~  6mm Breslow  ~ 50 Mitotic rate  ~  Staged at 3C immediately ~ Ulceration was found at 3mm ~ Microsatellites Present

His neck dissection and later surgeries removed over 70 lymph nodes and 4 were positive for melanoma.  He had facial reconstruction surgery with a flap of skin from his leg (used on his cheek about the size of a bread slice), and it took a lot of physiotherapy to restore mobility in the arm and leg that had nodes removed as well.

Those were dark and difficult days.  But things have been stable for a while now.  And when I wake up these days, my first thought isn't about cancer anymore. 

I hope this gives you hope.  My best wishes for you all. I know what a hard battle you fight.

Denise

 

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MeNDave's picture
Replies 7
Last reply 3/28/2012 - 9:04pm

Well, we got Dave's scan results yesterday, and they were not what we expected.  There has been growth of all existing tumors, and now there are 10 small lesions in both lungs and 11 on his liver.  We are devastated, as all of these developed in the past 6 weeks.  He was given the choice of doing Yervoy and monitor the eye issue, or move to a clinical trial somewhere else.  He did not offer the MDX-1105.

Any suggestions, or experiences with Yervoy and liver mets would be appreciated.

Thank God for this board.  I don't know what I would do without all of you.

Now, back to the trenches,

Maria

Don't ever, EVER, give up!

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Lucassi's picture
Replies 2
Last reply 3/28/2012 - 10:05pm
Replies by: Lucassi, bruski1959

After 2 year NED my husband is now stage 4.  A needle biopsy confirmed metastatic melanoma in the lung.  The oncologist is recommending Yervoy.  Mike has Medicare and supplemental coverage with AARP, plan F.  I know that Medicare will cover 80% of the drug cost but I do not know if the supplemental insurance covers this type of drug/treatment.  Was hoping someone on this board may have the answer.  I do plan to call the insurance in the morning but wanted to find out if someone else has a similar insurance situation.  Thank you in advance for any help you can offer.

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CLPrice31's picture
Replies 3
Last reply 3/28/2012 - 3:41pm
Replies by: Roxy1453, Gene_S, audgator

Hi all. I am currently participating in the ipi/placebo trial at Memorial Sloan Kettering Cancer Center in NYC. I have developed this rash recently and it's covering a large portion of my body now. Because I am in Virginia, I can't exactly slip to Sloan to have them check it. I have called, spoken to the new research nurse, and still have no answers. The rash does not itch but I don't know what else it could be from... In the months since I have been on this trial, I have only had a rash when I've felt sick. The rash does not bother me, it doesn't itch, it just exists. It's so strange. I haven't changed ANYTHING about my life...No new soaps, food, detergent,medicines, etc.

 

Sometimes I hate being on a trial with a newish drug because I don't know what to expect and what is or isn't normal.

 

I posted pictures of my rash last week.http://adventurewithmelanoma.blogspot.com/2012/03/beauty-marks.html

 

It has spread to more areas on my body now. Mostly on my stomach and legs. Like I said, it doesn't hurt. It is just THERE.

 

Has anyone else had this happen?

"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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Anonymous's picture
Anonymous
Replies 4
Last reply 3/30/2012 - 1:56pm
Replies by: Ali, Anonymous, Gene_S, James from Sydney

First time posting , but I have been lurking on this board for months.  My father, 80,  was diagnosed with Stage 4 metastatic melanoma in Sept 2011.   There were large masses in his chest and abdomen.  His first treatment option was radiation therapy to shrink the tumor in his chest.  He also tested BRAF+ and started Zelboraf .  However after only 1 week into his Zelboraf treatment, he was hospitalized for pneumonia / radiation pneumonitis.  They actually were not certain which one it was, so treated both.  In December, he started his Zelboraf -- full dose, twice a day.  His 6 week scan showed a great response with no new tumor growth and shrinkage of 40%.  In March, he had his second scan, and the Zelboraf stopped working and his masses has increased in size.

His oncologist says there are two treatment options:  Yervoy or Abraxine.  She recommends Abraxine because of her concerns about the toxitity of Yervoy and my father's ability to withstand treatment.  Everything I have read suggests the Yervoy to be more effective; however I am concerned about the time it takes to be effective, so perhaps the Abraxine would buy some more time.

I am interested in hearing any experience in this decision.

Thanks,

Bill

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yoopergirl's picture
Replies 3
Last reply 3/29/2012 - 8:37am

My appointment at UW madison was this past Monday, the MRI showed no cancer in the brain that was good but the cat scan showed a large tumor in my lymph node under the arm where I had the surgery to remove ALL the lymph nodes so I thought! we can't feel it yet but it is there. Also showed a subq in my stomach. I guess the good news is that it is not in any vital organ now. Since Dr did not have a previous cat scan to compare with he is just going to watch right now, in 4 weeks will have to return for blood work and a skin check then in another 4 weeks repeat the cat scan to see if any tumors have shrunk since the Yervoy has a delayed response we are hoping for the tumors to shrink and if not then will discuss what treatment I will have in the meantime I think hubby and I will take a trip for the 2 weeks that we have free. I can not have my fourth Yervoy infusion since I had such a bad reaction after the 3rd one so hoping that was enough to respond.

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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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