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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Anonymous's picture
Anonymous
Replies 5
Last reply 1/16/2014 - 9:09am
Replies by: Tina D, Ty, BrianP

Hi,    (third attempt to get posted past the scam filter!)

My wife is 5 months into the Ipi/nivo trial and has yet to see a positive response... though has had some of the nastier side effects.   Has anyone been on this trial and seen a response this late into the treatments?

Thanks, 

Ty

Ty

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Pink's picture
Replies 3
Last reply 1/6/2014 - 10:40pm
Replies by: Bubbles, Pink

tomorriow going for another brain scan then Wed. meet with radiologist and neurp at Moffit. Initial MRI showed 3 small mets to brain. i am also going to start Ipi as soon as insurance approves it. if SRS does not work can they do it again  and does IPI cross the blood brain barrier.

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G-Samsa's picture
Replies 2
Last reply 1/6/2014 - 12:22pm
Replies by: lucy3, Jahendry12

I noticed in today's Wall Street Journal that the immunological center at Memorial Sloan Kettering was the recipient of a 90 million dollar grant from shipping magnate Daniel Ludwig.   Dr Wolchok is quoted as saying the magnitude of the grant will be "transformative"-- and that it will support trials of new immunological agents.  It's not quite the cavalry to the rescue--too slow for that --but terrific news, regardless.

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bj63's picture
Replies 3
Last reply 1/6/2014 - 12:30pm
Replies by: POW, Jahendry12, ecc26

I just tried to post a reply in another thread and was blocked by the spam filter?  What gives?

Sometimes no news is the best news!

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/6/2014 - 3:37pm
Replies by: Janner, Anonymous

I have seen survival statistics based upon stage at initial diagnosis or based upon moving to a new stage, but have not seen survival statistics based upon going NED for a period of time.  In other words, if a stage 3c individual goes 1 year NED are her survival statistics improved vs what the statistics indicate at initial diagnosis?   I would assume the longer a person stays NED the better the chances of long term survival, but I have not seen those statistics.  I know everyone is different and one should not obsess over statistics, but I would like to see what they are if they exist.  I would appreciate it of someone could direct me to the right place.  Thank you.

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Anonymous's picture
Anonymous
Replies 12
Last reply 1/10/2014 - 7:02pm

Anyone else experienced headaches with ipi? I'm going on about 2 weeks now of pretty constant headaches. Started pretty mild but lately I call them more migraine like. Thankfully MRI on Thursday came back clear. Scheduled for my 4th and final ipi infusion tomorrow. Just hoping this headache doesn't get worse with another infusion. 

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mwcollins's picture
Replies 18
Last reply 1/7/2014 - 7:26am

Hi all-

After reading many posts and with encouragement from my husband, I have finally decided to register on this website, and participate.  My husband is very active on this site, so here is my story.  My husband was origionally diagnosed in February of 2011.  At the time we were living a normal life. I was (and still am) a stay home mommy to 3 boys and 2 dogs.  The initial diagnosis scared the crap out of both of us, but surgery seemed to take care of it. We moved to North Carolina from upstate NY to try to fix the financial pitfall we were in, but a month and a half after moving, melanoma reared its ugly head again.  This time it had moved to a secondary lymph node.  Primary lymph nodes were clear and the PET scan was also clear other than the one tumor.  Here we are another 15 months later, and routine CT scans showed a thickness in the small bowel.  I brought up the idea of my husbands diverticulitis as being a possible cause.  I try to consider myself a silver lining type person, but I have to admit I am scared.  I have 3 wonderful boys all at ages that desparately needing their daddy.  Our oldest is 12 and quickly becoming a young man who needs his dad to help mold him. Our middle son is 11 and wants nothing more than to learn how to be a better athlete from his dad (my husband was a tri-sport athelete), and our little guy is 4 who wants nothing more than to use his daddy as his jungle gym. I try so hard to be the voice of optimism.  My husbands family has a long line of cancer (breast, colon, tongue and neck), but all survivors. I want to belive that my husband is going to be another one of the line to be a survivor, but there is a small part of me that is just so scared that our luck is running out.  We have talked about the "worst case", and I would probably move back to NY to be with family especially since I have the ability to obtain a job if I return (I haven't worked aside from being mommy since my oldest was born).  I DO NOT want to have to return to NY, but feel comforted to have the safety net.  More importantly, I just can't imagine living life without my husband.  We met in 1994, and married in 1998.  We have had a very typical marriage with it's ups and downs, but despite being together for almost 20 years, it just doesn't seem long enough!  I guess, I just wanted to introduce myself to the forum, and get some support.  I have read such amazing stories on this site, and am hoping to lean on many of you as I go through the roller coaster ride that is melanoma.  Not many people out there understand this life that we all live and I just want to say how glad I am to have the support.  I look forward to posting more and supporting y'all.

 

Megan

 

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Braid's picture
Replies 8
Last reply 1/6/2014 - 9:20am
Replies by: MeNDave, Braid, Anonymous, arthurjedi007, jmmm

Hello, my wife had a large melanoma tumor removed from her upper thigh in September, 2013. After much debate we decided to go nivolumab lumab with high dose interferon treatment. She had a full body CT scan immediately prior to going on interferon and it was deemed clear mid December. On December 29th, I came home and found her passed out on the floor. Turns out she had a large blood clot in her brain from another melanoma tumor that ruptured. They successfully removed the tumor and she is currently in rehab to regain speech as well as the ability to walk again. This has been absolutely devastating. I'm confused how she would be cleared just 2 weeks prior of an undetected tumor that ruptured only 2 weeks later. Does anyone know if a melanoma brain tumor can go undetected in a CT scan and grow in only 2 weeks time?

Any input would be greatly appreciated. I'm currently searching options for putting her on Yeroy or one of the latest trials, nivolumab or lambrolizumab.

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/4/2014 - 7:49pm
Replies by: JerryfromFauq, mitchwendy, Anonymous, kpcollins31, Janner

Hi there

 

A friend of mine has been diagnosed with Stage 4 liver cancer.

The terms Braf postive and negative have been mentioned, and they have now been told they are Braf negative.

 

What does this mean?
Is it better to be negative rather than postive?

I dont want to bombard them with questions directly..hope you can shed some light.

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Anonymous's picture
Replies 4
Last reply 1/10/2014 - 8:26am
Replies by: Tina D, Anonymous, JerryfromFauq, Janner

I am new to this site. I have had what felt like an itchy dry patch on my back for what seems like years. The other day I asked my husband to look at it and he said I should get it checked out. He took a picture of it and it looks very much like the spreading melanoma on this site. It is about a pencil eraser size wide and very slightly thick. There is also another one next to it that looks similar.

I have an appointment on Wednesday to get it checked out. My question is, because it is on my back I have no idea how long it has been there. Can a melanoma stay in situ for months or years before getting more advanced? I am concerned.

 

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Vitashka's picture
Replies 6
Last reply 1/3/2014 - 3:08pm

Hello,

i was diagnosed with melanoma 2 month ago. Mole has been removed. Test showed that removed on time, just need to remove more tissue around, so I had another removal 3 weeks ago. 

I have planned vacation to Carribean (cruise) and now need to quickly cancel or go. And my doctor is away on vacation, so cannot ask him. Trip is in 3 weeks, so 6 weeks since last cut.

please advise if it is ok to go or need to Waite some time or never go to sunny destinations!

thank you in advance

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/4/2014 - 7:48am
Replies by: Anonymous, jack6020, Tina D

My mother was improving after taking 2 types of chemo meds for her MEK gene. She also had successful whole brain radiation for her brain met. After WBR, she had little mobility in her legs but was regaining strength and was able to get around with a walker. This has been on going since this summer. Last week, she could no longer move her legs. We took her to the hospital. They did the scans and found a large tumor on her thoracic spine. This was why she couldn't walk. Seems so obvious now. Why wouldn't they have ever checked her spine in the first place? These are supposed to be the best doctors at the university of Penn!! Her tumors have also grown back, larger than before (spleen, adrenal glands, brain, spine, lymph nodes, soft tissue around her lungs, bowels, etc.). It sounds like her Dr. Is giving up. Told us that there is an approved med but it's been less successful than her MEK meds that stopped working and she's ineligible for anti-pd1. Try to keep her comfortable. 

What can I do? I can't just sit here while she's dying. I know there's another route. She's a good responder to radiation and chemo. I don't understand. 

If anyone has any suggestions, please help me. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/4/2014 - 10:37am
Replies by: Anonymous

Hi Josh,

How are you doing?? I have a friend seeing Dr. Daniels, and I thought about you.

I hope that you are doing well. How about an update!

Stay Well My Friend,

Gregg

(Anyone heard from Josh, please post his update...Thanks)

 

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Tina D's picture
Replies 5
Last reply 1/2/2014 - 3:44pm

First, I want to say Happy New Year to all. I am incredibly grateful to be alive here at the beginning of 2014. When I entered stage IV in 2005, that was a pretty unlikely scenario, so I thank God for each day I am gifted with.

I started Merck's PD1 back in July, initial scans showed a whopping 67% shrinkage! Next scans 6 weeks later were stable with no changes. I will be having scans again on the 12th of January. I am feeling pretty well overall. Biggest issue has been when my thryroid quit entirely, and that has caused some major fatigue, but synthroid is bringing levels back up, and I am def doing better. I do have quite a bit of vitiligo on face and arms; halos around many moles.Eyelashes and brows turning white. I am trusting the Lord with the outcome, but do feel a little anxious about the upcoming scans since the previous ones had no shrinkage at all. My days are in His hands, and I am thankful... so very thankful for all the years He has blessed me with. I will turn 50 this year in April and there never was a woman more happy to be hitting the big five-o.

When I was diagnosed with breast cancer in Jan 2002, and melanoma in March of 02 ... our kiddos were still so young ( 2,5,10,11 and 14) and I was only 37. When I had that first mel recurrence in 2005, I knew my days could be short with my precious family. Thanking the Lord that now our children are 14,17,22,23 and 26 and I am glad for each extra day with them and with my wonderful hubby of 30 years. May each day of this New Year be one you cherish, and make memories with loved ones. Some days are much more trying than others for each of us, and this is not an easy road... but, as I look back, I have so many amazing wonderful memories of blessed days by the scores over these past 12 years since my initial diagnosis.

With a thankful heart, and wishes for a blessed New Year for each of you,

Tina

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Anonymous's picture
Anonymous
Replies 15
Last reply 1/10/2014 - 1:18pm
Replies by: Jahendry12, Anonymous, JoshF

Kaufman is leaving Chicago? Where is he going?   Does Rush have another melanoma specialist?

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