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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H555's picture
Replies 5
Last reply 3/30/2012 - 7:23pm
Replies by: H555, LynnLuc, Richard_K, cltml, Linny

I started coming to this board last June when I was diagnosed with a lymphnode recurrence from a melanoma removed in 1995. i had 17 lymph nodes removed only1 was malignant but there was capsular penetration (I think that's what it was called). I had the first 10 days of Interferon infusion in november that beat me up pretty bad and my oncologist and i both agreed to stop. I also have recurrent prostate cancer related to Agent Orange exposures and residuals from radiation treatment for that.

Fast forward to yesterday - for about a week I've had a dry cough that felt different than any cough i've had so i called my PC and he referred me for a chest xray and wet read. about 4 yesterday afteroon he called me at the clinic and told me I had multiple masses and nodules in my lungs and set me up for an appt with my medical oncologist tomorrow at 9 am. i can tell the cancer has grown in the last week, i can' take a full breath and hold it without coughing. i suspect that multiple masses and nodules is not the same as scan identified mets so i'm more than a little worried. i've searched the posts here for folks who've posted about lung mets and treatments and would love to hear more about what's worked. I know I'm now beyond the "found it in a lymph node stage" but i see many stage IV folks here who are faring well. My hope, frankly, is for a few more good years. we've been planning a trip to Kenya this summer where our son is in the Peace Corps, and I desperately want to make that trip and i'd like to live long enough to be here when he returns in 18 months. . we have 2 young grandchildren 2 1/2 and 6 months and i'd like to see a lot more of them. and I've been retired for 9 months in hopes of racing a 65 Barracuda my youngest son and I started working on 7 years ago. so i'm praying and staying positive and scared sh#*less right now. thank you.

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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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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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bruski1959's picture
Replies 1
Last reply 3/30/2012 - 12:47pm
Replies by: audgator

Jackie had her 3rd Yervoy dose on Monday, March 26th, originally scheduled for Friday, March 16th, but she was having intestinal side effects which needed to be treated. Wednesday morning Jackie starting having intenstinal discomfort that tylenol didn't touch, anti-emetics helped, but also needed something stronger for pain relief. Early this morning, Jackie started having intestinal side effects which she was able to treat with Immodium. So back on clear liquids and high dose steroids. She is doing better this afternoon and this evening.  Hoping the side effects won't be as bad they were after Yevoy dose 2 which required to 6 hour visits to the ER for rehydration. Jackie has been resting a lot this and has almost no energy from the extreme fatigue.  Praying that she will be able to continue to cope with the side effects and side effects treatment so she can have Yervoy dose 4 on or after April 16th. Stay tuned. Appreciate your encouragement, prayers, and support!

Thanks,
Bruce and Jackie 

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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 :)

Lisa

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

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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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Jim M.'s picture
Replies 2
Last reply 3/29/2012 - 11:18pm
Replies by: King, triciad

Hi everyone,

 Just wanted to share my recent scans were negative. God bless everyone. My thoughts and prayers go out to all fellow warriors and your families.

Jim M.

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Janis UK's picture
Replies 4
Last reply 3/29/2012 - 4:47pm

Hi folks, It has been about 3 years, or perhaps longer since my last post. I used to post every year on the anniversary of my NED status but as time has passed Melanoma is way down on my list of prioraties....hard to believe I know, but this is how I feel. The MPIP has changed so much since I last posted that I have had to reregister. I am not sure if all my previous post are retrievable for any of you to read but I am still NED and being diagnoised in 2001 stage 3b I am pleased to say life is good. My children have married and I am now a Granny six times over. Melanona is a horrible cruel disease  but in many cases it can be life changing and not life ending. My thoughts , love and hope go to all those fighting, waiting, recovering and most importanly living  

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jtheisen29's picture
Replies 2
Last reply 3/29/2012 - 4:03pm
Replies by: jtheisen29, Mandi0280

Good Morning Everyone, 

 

I wanted to share the news since I love coming on myself and reading about  peoples good scan news. My twin sister was diagnosed Sept 09 while 5 months pregnant with stage 3b melanoma. She had scans Monday and got the news yesterday that everything was fine! She does however need to have her thyroid taken out, interferon did a number on it but no signs of cancer. Just wanted to share my news!!  Although I don't come on as much as I did when she was first diagnosed and going through interferon I want to be able to check in and let people know because when I first joined I would search for stage 3 stories. So now if someone else searches hopefully this will give someone hope like it has given me. 

 

Jessica twin to Sara diagnosed with stage 3b melanoma Sept 09

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HoolieB's picture
Replies 9
Last reply 3/29/2012 - 3:48pm

I stumbled across the site in a search and have been reading the wealth of wonderful information on this board.  One thing that caught my eye was a couple of responses that included (paraphrased) "...Clark rating is no longer considered important unless it's with a thin melanoma..."  All my searching here couldn't find an explanation for that statement.  I was hopeful somebody might be able to shed some light on the relationship between Clark numbers and thin melanomas.  My melanoma was Breslow "at least" .42, Clark III. 

Thank you!

Julie

"May the odds be ever in your favor."

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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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