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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TomJ6299's picture
Replies 9
Last reply 12/31/2011 - 3:26pm

I was at work friday and I noticed my vision was very limited in my right eye. I went to an ER and an Optimologist was called in, he did what seemed like an ultra sound on my eye and found a tumor, he then informed me that it was Cancer. Since then it seems like a nightmare. Anyway my name is Tom, Im a 49 year old single widowed father of a great 15 year old boy who needs me. We live in louisiana and love LSU and the Saints. Im also a recovered alcoholic and drug addict , Ive been clean and sober since 2003. Any feedback will be greatly appreciated

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/19/2011 - 5:41pm
Replies by: audgator, Anonymous, Angela C

Quick Hx as I can't seem to enter a profile: Found a lump on my neck 6/09; Dx as melanoma 8/09; primary lesion never found; surgical removal of 20+ lymph nodes, 2 of which showed cancer; highly focused radiation 1/10; 1 yr. of interferon; all scans clear until 8/11 which showed spots in lungs & liver; 2 biopsis inconclusive as lesions are too small to get adequate tissue samples.  I started ipi a couple weeks ago & have my 2nd this Thursday. So far I have had no side effects. If  I were in a trial (I'm not) I would suspect I'm on a placebo.  Blood work has been OK except the white count is a little high.  I've always enjoyed wine with dinner but I went without for the year on interferon. My oncologist has not banned wine while on ipi but only made a vague suggestion that a holiday glass would be alright.  I am wondering what others have been told about alcohol & Yervoy?

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j.m.l.'s picture
Replies 5
Last reply 12/21/2011 - 10:12am

I had 4 mel tumors removed. That was the easy part. Latest is tumor laying on arm artery. Dr. says inoperable. no wide margin, etc.

Tried IPI-side effects but no shrinkage, just growth. On Decarbazine but I know this drug is a very low responder. Will try other chemos but this takes months of try and error.DOES  ANYONE KNOW FROM A LAYMAN'S TERMS WHAT THE DANGER ARE INVOLVED WITH SURGERY TO REMOVE THIS TUMOR LAYING ON AN ARTERY. OF COURSE I WILL CONFIRM W. DRS. BUT I WOULD LIKE TO KNOW FROM ANY IDEAS OUR THERE.

NEED ADVICE, jml

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Anonymous's picture
Anonymous
Replies 0

How are you both doing?? Happy Holidays to you & your family.

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LynnLuc's picture
Replies 7
Last reply 12/19/2011 - 10:41pm

Had my scans and anti pd 1 on Wednesday...it was week 60 of my clinical trial....Dr Weber says I am doing great! NED!!

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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Most of you probably won't remember me but when I saw your names the warmth came flooding back. Charlie s, janner, barbie girl, bonnilea to name just a few. I'm so glad your still kicking mels ass. Just because I rarely pop by now, your all still very much in my thoughts. I'm just trying to get by without thinking of the beast too often, easier said than done sometimes as you all know. Well i just wanted you to know that you all remain in my heart in a very special place for being so helpful and encouraging when I first sought out mpip almost 6years ago. Thanks guys your all amazing. I wish you all a very merry Christmas and may 2012 be a kickmelsass year for all of us .

Laneymcg x

Sending love across the pond x x

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Most of you probably won't remember me but when I saw your names the warmth came flooding back. Charlie s, janner, barbie girl, bonnilea to name just a few. I'm so glad your still kicking mels ass. Just because I rarely pop by now, your all still very much in my thoughts. I'm just trying to get by without thinking of the beast too often, easier said than done sometimes as you all know. Well i just wanted you to know that you all remain in my heart in a very special place for being so helpful and encouraging when I first sought out mpip almost 6years ago. Thanks guys your all amazing. I wish you all a very merry Christmas and may 2012 be a kickmelsass year for all of us .

Laneymcg x

Sending love across the pond x x

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jmmm's picture
Replies 2
Last reply 12/17/2011 - 11:52pm
Replies by: kylez, deardad

My husband had a craniotomy 2 1/2 weeks ago and (at least to me) it seems like he's dropped into a deep depression. He is on a heavy dose of Keppra (anti-seizure drug) and Zelboraf, so I'm not sure if it's because of all the meds or not. He's sleeping most of the day, tossing and turning all night and when he's awake, he's just sitting on the couch watching TV or reading with a glassy look in his eyes. He doesn't want to leave the house, but does get over stimulated with the sights and sounds whenever we go out. I'm really struggling with all of this...we have 3 children who need their Dad. He's supposed to do gamma knife on Thursday and I know he's worried about that. He's been stage 4 since January, but has never been down like this. Has anyone else been through this? Any suggestions (other than anti depressants..he refuses to even consider it)?

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Frannie55's picture
Replies 1
Last reply 12/31/2011 - 12:33pm
Replies by: Lauri England

Finally we west Michiganders have our own melanoma clinic. It is affiliated with Spectrum Health.  The website is:

http://www.spectrumhealth.org

Our Van Andel institute is now researching the BRAF wild type gene. Here is a link to their page:

http://www.vai.org/News/News/2011/12_14_SU2C-Melanoma.aspx 

I have been NED since April 2010 and am not due for my next PET scan until March. But I think I will go in to check it out anyway.

Keep fighting the battle!

Believe that you can or believe that you can't. Either way, you are right. - H. Ford

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carol b's picture
Replies 5
Last reply 12/20/2011 - 5:29pm

Merry Christmas everyone. I pray all of you have a wonderful Christmas. I pray that you all have an abundance of PEACE, LOVE and JOY in your hearts this Christmas Season. I pray for Christmas Miracles for us all. heart

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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glewis923's picture
Replies 9
Last reply 12/20/2011 - 11:19am
Replies by: martimus04, MariaH, Cate, Anonymous, WendyPam, lovingwifedeb, Fen, sharmon

As I look back over the year, I realize how fortunate I have been.  I also think of the many friends on this board who are no longer with us.  Let's take a moment to reflect on their lives.  I can think of a few right off hand, but please add to this remembrance list if you want.

Shelly from Switz., Amy Busby, Sharon from Reno, Eriic, Nicole NicOZ, Sharyn, and many others I cannot think of at moment.

They shall all be missed by many.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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kjkaralekas's picture
Replies 1
Last reply 12/18/2011 - 9:42pm
Replies by: Charlie S

Hi--

Since I just joined this forum last week, I have already learned so much from all of you. You all are so informed that some of your posts sound like doctors. I was extremely impressed. I was given a book by my sister-in-law entitled The China Study. You might have already heard about this or read it. It's amazing. Basically it's a way of life--eating plant-based--that can ward off cancer. I also read Brian's link below. Took 90 minutes but totally worth it. (Thank you, Brian). Both these really changed my way of thinking about eating for the rest of my life. It makes so much sense. I think the reason why it's not blasted throughout the media is because the economy is already in turmoil. Can you imagine if we told the US that the way we are eating is literally causing cancer? Brian's link is a little more moderate, will allow for a couple of glasses of wine and a small portion of protein daily, than the one in the China Study. I,myself, would have a hard time not have a glass of wine here and there. :) I will start with the way the doctor in Brian's link talks about eating--basiclally a Mediterrean diet and try to move eventually into a plant-based diet.

Bottom line: cancer cells feed on sugar and cancer cells can't survive in an alkaline state so why not make our bodies in a state where cancer cells can't survive? To me, it's worth a try. Maybe if one of my melanoma cells did go astray and is in my body somewhere readying to manifest itself at some point, why not try and make it really hard for that cell to survive? Can only make me healthier anyway. I read a story from a gentlemen who was Stage III, ate this way, was NED for years, slipped back into the regular habits of eating thinking he was all set and became Stage IV. Could be a coincidence, but why tempt fate?

I urge you all to pick up the China Study and take the time to read Brian's link. What have we got to lose??

Again, thank you all for your comments to my original post. It really did open my eyes. I can only hope to become as informed as all of you.

 http://www3.mdanderson.org/streams/FullVideoPlayer.cfm?xml=publicEd/config/Anti-Cancer_cfg  

Kelly
 

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Camp Host's picture
Replies 5
Last reply 12/18/2011 - 8:34am

 Would sure love to chat with others with like issues .....8 months post Isolated Hot Limb Perfusion for a melanoma on foot with a metastatic melanoma on shin.... now experiencing frozen knee joint Doc's are saying the Melphalan has dried up the cartilege .... total knee replacement  next... Wondering what others have experienced ... CAMP HOST Janet 

A strong spirit and positive attitude goes a long way....... "Everyday is different and Everyday is Better"

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newmanmark's picture
Replies 2
Last reply 12/17/2011 - 5:50am

I wanted to let everyone know that I will be 2 years NED next week (Dec 19th). There was a time that I thought my life was over. When I was initially diagnosed this board terrified me but many of the posts also gave me hope. I lived for posts from people who were NED. I want to share this same gift with others and provide some form of hope and support for the many who are struggling with a recent diagnosis. It was a very dark time for me but as time passes I am able to divert my focus from melanoma. I still think about it every day but the mental anguish and fear has definitely been reduced. While I was receiving treatment my wife was pregnant with our first child. I honestly thought that she would be my first and last and I wouldn't be able to see her grow up. Well, she's now almost 2 and we have another girl on the way. I try my best to continue living my life as I did before my diagnosis.

To all of you out there who are struggling, keep pushing forward and take one day at a time. Seek support in whatever form you need. For me, meeting with a psychologist regularly was better than any medicine.

Happy Holidays

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Angela C's picture
Replies 4
Last reply 12/17/2011 - 11:35pm
Replies by: kylez, Angela C, King

Hi there.

I currently have an adrenal gland tumor that is pressing on my liver. They do not see any mets in my liver, but the latest CT write up said that they cannot exclude invasion of the liver.

The only side effects I have noticed from the adrenal gland tumor has been some lower back aching on the side of the tumor and a sharp pain in the lower back on occasion. I was just wondering what others with adrenal gland tumors and liver mets have noticed as side effects?

I just had my first CT after Yervoy and the adrenal gland has continued to grow. I don't have anything new and the spots in my lungs are still stable. We don't know that what is in my lungs is even Melanoma. I've had two biopsies of areas on concern in the lungs before and they have not been Melanoma. But, the existing spots have never been biopsied and have been stable now for almost a year. But, the doctors still treat it like it's Melanoma, even though it could be nothing as the others were.

We are waiting to do another scan at the end of January before making a determination that Yervoy didn't work for me. I'm just wondering what I should keep an eye out for as an indicator that things could be progressing into the liver or the adrenal tumor could still be growing.

Thanks!

~Angela

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

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