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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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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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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Warrens Daughter's picture
Replies 26
Last reply 3/29/2012 - 12:50am

Hello to all of dad's fellow gladiator's...I wanted to extend the very sad news of my dad's passing to those who he has befriended over the years...

Firstly, I would like to say my father passed away melanoma free - so please do not be discouraged by this news.  Dad was diagnosed with Merkel Cell Carcinoma (an extremely rare different form of skin cancer) last year and passed away February 16, 2012 - nine months later just shy of his 60th birthday.  Also know that you were his inspiration - others who fought the battle along side him - so my family thanks you and you will remain in our prayers. 

I wanted to share something that I wrote for my dad's service...

We have so much to celebrate today and be thankful for.  There was that moment when my wedding had started and it was just dad and I waiting in the bridal suite to walk down the aisle – honestly I don’t know who was more nervous.  When we got to the door of the church as they opened it he started making small talk, either to stop from crying or to stop from passing out.  After my first dance with my husband, and it was my dad’s turn he proclaimed to everyone that there would be no crazy spinning – but then he had everyone laughing as he successfully completed a spin or two of his own.  At the end of our wedding he drove with us over to the port were we were taking off for our honeymoon in the back of the car laughing and talking about how great the weeding was.  None of this would have been possible had he not won his major melanoma battle five years earlier.  God answered so many prayers for us.  Even in his final hours God was answering prayers – getting my mother and me out to him so the three of us could be there with him – holding his hand, surrounding him with love. 

He was an avid fighter for cancer patients.  When his battle first began with melanoma ten years ago, he signed into a melanoma community on-line bulletin board where he met many people over the years.  After his major battle with Stage 4 melanoma 5 years ago he was inspired by others fighting to write the story of his battle and exactly how he got to the point of “cured” or “NED” cancer lingo for No Evidence of Disease. 

He loved life so much…he loved his family so much and that’s what he fought for until the very end. 

 My father’s story ended with these words…

 "In closing I would like to quote the very courageous Jimmy Valvano from his speech during the 1993 ESPN ESPY Awards. He was pleading to his audience to give money for cancer research saying, “it may not save my life, but it may save your children’s life”. Stricken with tumors everywhere he struggled to stand before a huge crowd and the national television audience. As he focused in on the camera he said......

“Don’t ever give up. Don’t ever give up.” “Cancer can take away all my physical abilities. It can not take away my mind, it can not take away my heart, and it can not take away my soul”.

Anything is still possible in my future. I have a good prospective on reality. One thing is for sure. I will never give up. I hope you never do either."

 If we could all take away a part of my father to hold on to it forever, take this – don’t ever give up – when struggles come, keep fighting because the greatest things in life are worth the battle.  Family is the most important thing.  Take the time to be with your family – make the memories that will carry you through hard times.  And love life – find God’s blessings in the little things and be forever grateful for those moments. 

I am so thankful for the time I had with my dad - I will carry him with me forever - and until I see him again in heaven I know he's enjoying his permanent state of NED.

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research) - my dad's motto

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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.

Dick

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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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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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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??

Thanks!

~Angela

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

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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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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:http://www.melanoma.org/get-involved/mrf-volunteer-training

Thanks!

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Maxximom's picture
Replies 11
Last reply 3/28/2012 - 2:18pm

I was admitted to OSU James Cancer Center Friday night to start IV Steroids for severe Diarrhea. I started to have diarrhea about 5 days before I was due to have my second Ippi infusion. I did have the second infusion last Thursday and then the next day, the diarrhea really accelerated and I was started on 20mg prednisone..it didn't help very much and they upped the dose to 20mg in the am and 10mg at night and still it was bad.I had to stay home all this time as I needed to be near the bathroom. I was hoping that Dr Kendra would get me onto Endocort.. but that didn't happen. Friday I got the call to be directly admitted to the hospital to start the IV steroids.Things slowed down..but I still have diarrhea even with the IV steroids.Yesterday they let me go home after things got down to 7 movements a day..and started me on 1200mg of Prednisone.I am due to have Ippi #3 next Thursday..but of course that isn't going to happen with such a high dose of Pred.I believe that you need to be on 7mg or less to get the Ippi..I will take a long time to get weaned off such a high dose and I fear that I will have to discontinue the Ippi. I am BRAF negative and that doesn't leave many options open to me.I would hope to get into a anti PD1 trial..but there is  nothing near by to me.I really want to continue the Ippi..if they will let me..I can deal with the diarrhea  as unpleasant as it is.I know that many of you have gone through this..any advise or encouragment to very welcome..I am starting to think that contsipation is a beautiful word..LOL

Joan

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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?

barb

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

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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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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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zzzzil's picture
Replies 8
Last reply 3/28/2012 - 1:39am

Hi, I'm in the UK and my girlfriend is Czech... (she has Stage 3A melanoma -- so far!) ...wondering if there are any other UK or Czech users here.. or a recommended community - Thanks so much

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