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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Phil S's picture
Replies 3
Last reply 1/16/2014 - 9:50am
Replies by: Tim--MRF, Swanee, POW

Wow, so excited to see that post history is back!!  Thanks, Tim for bringing this feature back to to board!  Valerie (Phil's wife)

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JerryfromFauq's picture
Replies 2
Last reply 1/16/2014 - 11:18am
Replies by: MeNDave, BrianP

Here is a post I just left on Amy's Facrbook bage for The Busby Family.  Dennis reminds me so much of our Dear Nancy fighting for their beloved spouse.----------------- I want to thank  one of the most gracious melanoma warriors ever met for the help she is still giving to melanoma warriors even after they have been told to go home, that nothing more can be done on this earth for them.  Dennis your precious wife is still so much loved and her earthly presence so badly missed.  Her help to others has not disappeared nor ended though.  Another warrior was told 6 weeks ago that his battle was eover, to go home.  His family was very despondent.  When Nancy told me the results of the Onc visit that day at MDA, I sent her information from mine and Amy's phonecons, the emails from Amy and copies of her posts on the MPIP about her Lepto them treatments .  We urged them to get in to see Dr Papa.  She fought her way in and Dr Papa said "Let's try!" :  Here is todays post after that rough month of treatment that our Dear Amy endured and passed the data on to us.  ------------------------------------------------------------------------------------ """""""  PET is still Clean !!!! NO Lepto in Spine. Mets are stable. Lepto has stopped growing in brain !!!!!! Could not have been a better report. Hope this gives someone HOPE !!! Prause the Lord on High. All Glory to God and thanks to Dr Papa. Said they had nevere seen anyone do as well with treatments as Wayne. Whoop whop. Cruise here we come !!!!!!!------------------------------------------------------------------------------------------------------------------------         -angel

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

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mark1101's picture
Replies 11
Last reply 1/16/2014 - 6:34pm
Replies by: Bubbles, mark1101, POW, Mat

Small met located on my right posterior iliac about 6 weeks ago brought me up to Stage 4 after participating in the ipilimumab trial earlier this year.  Will be determining next steps in a week or so after PET scan results are available.  My onc at Seidman indicates that if it is smaller or same as originally spotted, remove with radiotactical surgery.  If gone, wait and watch.  If larger or additional mets noted, systemic treatment is needed.  I just learned that I am BRAF positive and am wondering what systemic treatments this might open the door to.

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Replies by: Golda_, Tina D, Mat

http://www.fiercebiotech.com/press-releases/merck-initiates-rolling-subm...

Merck Initiates Rolling Submission of U.S. Biologics License Application for MK-3475, an Investigational Anti-PD-1 Immunotherapy, in Patients with Advanced Melanoma

Expects to Complete Application in First Half of 2014
January 13, 2014 08:30 AM Eastern Standard Time

Read more: Merck Initiates Rolling Submission of U.S. Biologics License Application for MK-3475, an Investigational Anti-PD-1 Immunotherapy, in Patients with Advanced Melanoma - FierceBiotech http://www.fiercebiotech.com/press-releases/merck-initiates-rolling-submission-us-biologics-license-application-mk-3475#ixzz2qIJiIsJ6
Subscribe at FierceBiotech

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

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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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hdelancey23's picture
Replies 3
Last reply 1/17/2014 - 12:31pm
Replies by: POW, Swanee, aldakota22

Hello,

I wanted to thank every member that rang a bell in my mom's name on January 9th.  It brought so much comfort to my whole family to know that my mom had so much support.  It really touched our hearts.  This is a wonderful community with great people.  It was so amazing to see people all over the world honoring my mother's struggle and fight.  Thanks so much from the bottom of my family's hearts to everyone that took part.  I can't thank you guys enough or begin to say how touching that was.

 

Thank you,

Heather-Denise Kirley's daughter

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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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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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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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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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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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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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Anonymous's picture
Anonymous
Replies 12
Last reply 1/19/2014 - 11:27am

I've poked around using the MPIP "search" function.  I'm not finding many ipi success stories (other than Jerry from Cape Cod).  Maybe a question for the old timers, but can you recall situations where the patients have had the standard FDA-approved course of ipi (4 infusions) and got great results?  Maybe all of those folks have left their melanoma lives behind and no longer post here?

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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 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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