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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ElaineLinn's picture
Replies 3
Last reply 3/30/2012 - 4:55am
Replies by: ElaineLinn, KRob, aldakota22

Today has been a long day. Starting off at 9 pm last night I got sick and had to be taken to the hospital for kidney stones. Finally released at 6 am this morning still carring the kidney stone, so that I could make my way to Columbus for my dr appointment at James Cancer Center with Dr. Kendra. Today was the day for my CT scans to check the progress of my lung mets, and check my liver to make sure this cancer hadnt spread.  That was not good, the IPPI has not been working for me. Most of the lung mets had doubled in size and they found new spots in my stomach area. But my liver is back to normal and has no signs of cancer. So now there goal is to get the radiation over with and start me on Tremadol. I will be stayingin Columbus tonight and seeing the Radiogist tomorrow so that we can get all my dr. on the same page and get to fighting this cancer ASAP.  Dr. Kendra gave me no other option then the Tremadol, as soon as they can get the radiation done. So here we go. I will travel back home to WV tomorrow night so that I can have Lypatripsy done on my kidney stone on Friday.  God is good and I will never believe other wise , But I would love to get some good news and soon.




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Richard_K's picture
Replies 5
Last reply 3/29/2012 - 12:46am

Today I got the results from scans I had this past Monday. No change, probably just scar tissue.  I'm now 25 months on Zelboraf.


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Replies by: kylez

Hi everyone.

I had my last dose of Yervoy in November of last year. I know that they say the side effects can still occur months after the last dose, but I'm wondering just how long "months" really means.

In the last week and and a half I feel like I am having Yervoy side effects again. I've been having diarrhea about every two to three days and I've also had quite a bit of itching on my palms and my feet. It could be that none of this is actually related to Yervoy, but I'm just wondering if it could be. My itching during treatment was mainly on my legs, not my palms and my feet, but it has me wondering just the same.

Have any of you out there had side effects almost five months out??



Be kind, for everyone is fighting a great battle. -Plato

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Lisa13's picture
Replies 4
Last reply 3/30/2012 - 8:59am
Replies by: Lisa13, KRob, lhaley

Last November, I had gamma knife on a 2.5cm brain mets.   In the last 2 weeks, I've had definate symptoms that are part of the edama.  I sometimes forget words briefly and my eyesite in one eye is a little weirds.  I have a brain mri in 2 weeks which will be 2 months after my last gamma knife. What symtoms of edema have you experienced?  What can you do in regards to edema? Linda - I know how muc you know about this stuff :)


Many impossible things have been accomplished for those who refuse to quit

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Hi everyone: We're holding a volunteer training workshop in Los Angeles, and we'd love to have you join us! We'll cover topics from fundraising strategies, advocacy, and working with the media. If you are in southern California, this is a great opportunity to meet other people in your community who are committed to making a difference.

So, if you've always wanted to volunteer, and would like an opportunity to find out how you can get involved, please join us.

For more information:


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My husbands scans on Feb. 24th have shown 2 lytic lesions on T8, T9 & T10 and 1 lytic lesion on his right pelvis.  He underwent a needle biopsy while in the hospital for ipi induced hepatoxicity.  It confirmed they were metastatic melanoma.

He is currently on mega doses of methylprednisolone.  We are getting repeat scans on April 9th to see if we see evidence of shrinkage or growth.  At that time he will be 8 weeks post ipi induction phase.  He is currently off study due to his side effects.  His oncologist has ruled out any immunological treatments at this time due to the severity of the ipi side effects.

She is currently talking about doing a bone strengthening treatment, Zometa at his appointment on the 9th.  She is looking at Temodar as his next treatment.  I am concerned about Temodar since it may have a limited life and he currently has no brain involvement.

Any thoughts or suggestions?


We don't know how strong we are until being strong is the only choice we have.

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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) 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.



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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,


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.


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.

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Anonymous's picture
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.



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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.


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



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 "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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