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 1
Last reply 1/15/2014 - 8:47pm
Replies by: Kimmer

any recommendations for the paleo diet?

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JoshF's picture
Replies 10
Last reply 1/15/2014 - 10:55pm

Finished yervoy Dec 9... Scan on December 20th showed no progression and doc said she wouldn't even be concerned about lung nodule as it was a shadow and the obvious prior knowledge of tumor. Felt it was very encouraging news. So had a nice Christmas break with kids and went into hospital Jan 6 to start HD IL-2. Did 11 bags... Couldn't get last one in Friday...couldn't get urine output. 

Anyway, feeling a bit better but wow feel like I've been run over by train. 27lbs of fluid retention... Scary. My dad took pic on day 1 and last day...wow. Hardest thing is not being able to sleep well. If I could I think I'd feel 1000% better. Cold feet, get chills... General flu like feeling. Not looking forward to next week in terms if dealing with side effects but looking forward to getting on with it. I wish complete response rate was better for patients.... This drug is high price to pay.

 

Josh

Let's work for better treatments....for a cure!!!!

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momof4boys's picture
Replies 1
Last reply 1/16/2014 - 7:11am
Replies by: gostan

Can anyone share what their symptoms were with colitis besides the diarrhea. Was it clearly obvious that you had it? I just finished my 4th dose of ipi and have had diarrhea for three days. Woke up this morning not feeling well. Waiting for a call back from onc. Thanks

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triciaches's picture
Replies 10
Last reply 1/16/2014 - 8:05am
Replies by: Colleen66, BrianP, JerryfromFauq, Nadia, Anonymous, Mat, Gene_S
  • I recently had my 2nd melanoma removed. The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear. My official diagnosis statis is "Stage 1b" (T2a NO MO)

    My November LDH level was 219 with the standard range of 125 - 250 U/L. Since this is on the high side of the range, I am a little concerned.  I have not had any CT/MRI or PET scans done to date.

    Does anyone else have any insight on LDH levels??

Tricia Chappell - Chesapeake, VA

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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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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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