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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JerryfromFauq's picture
Replies 2
Last reply 1/19/2014 - 9:31pm
Replies by: JerryfromFauq, kylez

Last night there were three of us in the chat room. We kept getting bounced out and having to go in repeatedly. Finally we were knocked out and the Chat panel was just a blue panel in the side of the window. That is still what I get when trying To get into chat today. Is this happening to others?

I'm me, not a statistic. Praying to not be one for years yet.

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triciad's picture
Replies 1
Last reply 1/21/2014 - 2:13pm
Replies by: Lil0909

Hello warriors,

I haven't posted in such a long time.  The website changed and I forgot my password.  Finally, I emailed and was able to get a new password...easy...it just took so long for me to get around and do it.   I have been reading and following all of your stories.  You all are an inspiration to me!

 A couple of weeks ago, I received an email from the MRF about a synposium in NY on February 8.  It's all day, but it sounds like it will be very interesting.  I signed up, and I was wondering if anyone from here is going.  It would be nice to finally meet some of you.

Let me know if you are going and continue the fight!

Tricia

 

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ad2424's picture
Replies 6
Last reply 1/21/2014 - 4:24pm

Hello all

I am about to start Ipi and currently a patient at MSK. I am not happy there (long story) and have a second opinion at NYU.

It seems to me that the most important issue is how repsonsive the nursing staff is answering questions and worries 24/7.

Two questions: do you agree that is the most important issue?

If you have had experience with NYU or MSK with Ipi, or another drug that involved constant contact with the nursing team, do you have an opinion on their responsiveness?

Thanks

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/18/2014 - 8:35pm
Replies by: Linny

anyone heard of a procedure called lymphovenous bypass that alleviates symptoms?

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/18/2014 - 9:33pm
Replies by: BrianP, Anonymous

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Anonymous's picture
Replies 12
Last reply 1/20/2014 - 11:03pm
Replies by: JerryfromFauq, POW, Jahendry12, Anonymous, Webbie73, ecc26, Bubbles
Anonymous's picture
Anonymous
Replies 1
Last reply 1/18/2014 - 10:11am
Replies by: Linny

Can someone explain to me please the Melanoma treatment that is newer and more effective that has come out within the past 3 years? Does this mean keeping mel at bay, but eventually mel becoming immune to the treatment as before and now the drug is just FDA approved?

So if you have a stage 3 melanoma, what can they do differently now that they could not have done 3 years ago?

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geminilion's picture
Replies 15
Last reply 1/19/2014 - 7:25am
Replies by: geminilion, Jahendry12, Bubbles, Mat, POW, Anonymous, JerryfromFauq

Had stage 1, wide local incision and removal of satellite nodes. Was given the all clear, was told to only have check ups with derm every 6 months. Went for yearly exam and had a chest x ray that showed a nodule on my lung.

Did CT scan and my dr. was concerned enough to have me go for a PET scan. Scan showed mass, 2 nodules and possible lymph node involvement. This was in October. I Just had a biopsy (doctors not communicating, etc.) and I have several masses in my right lung and lesions on brain (had brain MRI w/contrast), lymph nodes were positive.

 

I will wait another week for further information as all of the tests have not been completed. I had no symptoms except for a cough and shortness of breath that developed in late Summer. Since then I have grown very weak and feel ill pretty much all of the time.

My thoracic surgeon and primary doctor are going to decide what my next steps should be. I have no idea what to expect. I am scared, the brain lesions really scare me, I am wondering where else the melanoma could be?

So I am assuming I am stage IV, I guess he doesn't want to stage me until all tests are complete. Any advice or suggestions would be greatly appreciated.

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mark1101's picture
Replies 9
Last reply 1/22/2014 - 11:46am

My primary Onc called today to report that the single small met on my right, posterior iliac which showed up on a scan done 4 Nov 2013 is now several small mets in my hip area and along my vertebral column all on bone.  We wee hoping my Ipi treatments might shrink the first one into oblivion, but obviously Ipi didn't do its thing for me.  So Monday its off to my #2 Onc (referred by #1) who is an advocate of HD IL-2 and has recently been running a trial on HD IL-2 in concert with BRAF meds.  I am Braf positive.  He also has a BRAF + MEK trial under way as well.  Not sure what direction this will take, but guess it will have to be systemic treatment, was hoping for radiotactical treatment on my single spot...kind of rambling.

My questions are abut others with experience with Mel on bone and its progression for them.  Also are there particular treatments I should key off given all mets are on bone?

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nancyg's picture
Replies 5
Last reply 1/18/2014 - 10:49pm

Hi ... Looking for some insight.. So the dr just called and said they did find melanoma on the rib cage.( my husband is stageIV with a tumor on his lung and 4 tumors in lymph nodes in his chest... On IPI ...big tumor on lung shrunk 50% ...my husband also has terrible pain on the right side where now melanoma has been found)... So I have a question... Does that mean it is on the bone or in the bone???Does Melamoma spread into the bone or onto the bone?? Probably should call dr back on Monday to ask more questions,but Thanks in advance for any info you can help us with. 

Thank you... Wishing all of you well!

Nancy

 

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Replies by: POW

Adam posted for the first time in December and was waiting for his insurance to kick in so he could proceed with treating his recent melanoma diagnosis.  Has anyone heard from him?  Adam, if you're checking in, please let us know how you are doing.

 

J

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soccerchick's picture
Replies 8
Last reply 1/17/2014 - 5:59pm

It started with a physical, physicians assistant (she is so awesome and so is my company for requiring I get a physical) mole on back that was very small but had an unusual shape, pa set up the derm appointment (she did not want me to wait) got al call form derm, you have melanoma! and we are referring you to md anderson. fortunately I live in Houston! Forgive me in advance for incorrect spelling or terminology, Had the surgery septmeber 2011 and margins clear but 2 tested lymph nodes positive, go back for second surgery to remove all lymph nodes under armpit and 2 more positive for melanoma, so radiation time and why not give the melonama clinical trial vacine a try, then next skin check (chest) shows some new spots  (both are totally different and it's probably nothing but let's do a biopsy of both to be sure, big time bummer they both are melanoma and let's get a mammogram too. The mammogram leads to a ultrasound of chest and a bisposy of another glowing lymph node, it's melanoma. so I'm given a choice il2 or surgery ( we can cherry pick any unusual spots) and remove the bad lymph node. heck, I chose the cherry picking. so surgery shows most spots to be melanoma, 5 out of seven I think, fast forward for next follow up visit  and dang more spots, melanoma of course, so now it's time for the kitchen sink, il2, I took 7 doses over 2 rounds and dang another spot! No more cherry picking. Now it's time for ippi and temodar. So as I am taking the ippi and temodar, I think I went 3 rounds, I feel a lump in my breast, crap again, it's melanoma. The most wonderful thing through all of this is my scans are clear no organs or brain, but now instead of it being on my skin i've got a lump that is growing like a weed, so now it's time to try venafurenib, I am braf positive and chemo (carboplatin and paxclataxol), so awesome right away I can feel my lump shrinking, lost my hair and 10 pounds, which the pounds are a bonus. Fast forward 6 rounds months later, chemo had to be lowered twice cause of pesky platelets and low whites and reds, and shoot but it feels like my lump is growing (it never did go away), and yes scan confirms, so now I have been on the new braf inhibitor and mek inhibitor (novartis) for over 1 month and lump and new lumps have shrunk and some have gone away, and through it all I am so dang thankful to have had all these options, and I will keep fighting until one works, if I had this 4 years ago I, I would have run out of options. Every day is a great day!!!!!!

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sjwilken's picture
Replies 3
Last reply 1/17/2014 - 4:22pm

I just out that  I tested positive for BRAF.  What side effects has anyone had?

 

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Julie in SoCal's picture
Replies 4
Last reply 1/19/2014 - 12:41pm
Replies by: Pink, Globetrotter, POW, BrianP

Greetings friends,

Just wanted to say that I had my first ipi treatment yesterday.  It was easy!  NOTHING like HD-INF.  I even drove myself home (through traffic-grrr).  Everything was easy!

Now I'm mostly just tired.  When I got home I was completely worn out and went to bed early.  I probably do the same today as I'm dragging.  This morning I had a bit of a headache, but this afternoon it's gone.  And of course I'm on the alert for the ipi rash with every itch.  

Just wanted to say how things are going here.  

Blessings,

Julie

 

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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profgal43's picture
Replies 4
Last reply 1/27/2014 - 11:41am
Replies by: Pink, profgal43, Janner

Hi everyone, 

I am curious to know if anyone else has had similar experiences to mine and if so how your treatment proceeded.  I also just wanted to reach out and connect with others who are fighting this illness and winning.  

My first melanoma was stage one in 2009. It was on the front of my right lower leg.  My second was about three inches from the first and it was excised six months ago; it was also stage one.  I am currently waiting for surgery next week for melanoma #3 and #4, both again on the front of my lower right leg.  I am now enrolled in a melanoma clinic at my local research hospital.  The docs say the melanomas are not satellites, but there is a "field of damage" on that leg and I am likely to keep growing melanomas. (I have also had five other spots biopsied in that same area and all had abnormal cells.) The other issue I have is I have many moles (100+) and the moles that have been melanoma look just like the rest. I have identified the last three based only on the fact that they were new and growing and in the area of my original surgery. I feel like a ticking time bomb!  There are twelve new little moles on that leg right now and are they anywhere else?? Nerve wracking.  I do know that I have been very lucky to have them diagnosed so early thus far.  I had a lymph node biopsy 6 months ago and it was clear.  

Has anyone else had similar experiences?  What course of treatment have your docs followed?  My melanoma doc is going to treat my leg with imiquimod after the surgery.  Has anyone else had experience with this? I know its experimental, but it seems like its worth a shot as the only other option is to keep cutting and cutting and hope we get them all.  

Any words of wisdom or encouragement you have to offer is appreciated.  I have been waiting for close to two months now for this surgery and my anxiety has been through the roof.

Best wished and good thoughts and prayers for all of you, 

Karen

 

 

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