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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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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Anonymous's picture
Anonymous
Replies 6
Last reply 1/20/2014 - 2:11pm
Replies by: Anonymous, buffcody, bodrum, Linny, washoegal, ecc26

Hey Folks - just wondering if folks have had issues with lymphedema in the chest/arm.  I had lymph nodes removed under my right arm.  Haven't really had many issues with Lymphedema (although not as careful as I should be).  

In the right chest I've had on and off for the last few years what looks like maybe fluid?  last scans showed thickening of the skin in the right breast.  Of course if you google that it mentions a rare inflammatory breast cancer lol!  thank you dr google!  haha.

I am talking with my doctor about it next week when I'm in.  Just wondering if other folks have experienced this at all.  

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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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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mwcollins's picture
Replies 13
Last reply 1/20/2014 - 6:24pm

Many of you know of my husband, Kevin (kpcollins31). He posts frequently and is very actively researching this disease that has brought us all together. Well, in one weeks time he will have his PET scan to determine if the thickness in his small bowel is a met or possibly something else. I am hoping and praying with every ounce of my being that it is just a resurfacing of his diverticulitis, but the possibility remains. . . Anyhow, there is a nurse on Kevin's team that is in charge of the treatment plans, and basically the facilitator for communication. She and I had a wonderful conversation this morning. She was not sugar coating anything, but at the same time telling me that she can see Kevin being here for many years to come! Such encouragement from a medical professional! She went into details with me about Yervoy and the success that she has seen with it which had me very encouraged as well. Well, Kevin comes home and says that he did more research on Yervoy and said that the studies have shown that 46% of patients live for a whopping 1 year. His thoughts are that he wants to get into a clinical trial that can be even better than Yervoy. I can't and won't accept having my husband for just one more year. Our 4 year old will have little to no memories of his daddy, and that is just unacceptable to me. My question to all of you out there is about Yervoy. For those who have been on it, is it successful (for more than 1 year), are the side effects as bad as he thinks, is the nurse just trying to sell the drug that her hospital bought into? I am so confused! I just want this roller coaster to level out and get him healthy!

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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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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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Cfenton's picture
Replies 2
Last reply 1/22/2014 - 9:18am
Replies by: Cfenton, Janner

I was diagnosed in late Dec. 2013 with mel in situ on my scalp. It is a lesion about 2 inches up from my hairline, right in the middle where I would part my hair in the middle if I parted my hair there.  This is the site of two previous removal/biopsies in 2006 and 2007 of an "atypical mole."  It came back within this last year just like the other times, fast and dark. It is on the scar and is technically two lesions.

Now I am waiting until Jan. 31 for a consult with the skin cancer surgeon to discuss removal (excision or Mohs?).  While I am glad to talk to him first to discuss its history, location, etc.   I am, obviously, nervous that it could be up-staged... and nervous about the procedure itself in terms of healing, etc.  I am a sporting dog and horse photographer with an upcoming busy schedule and I really wanted it OVER by now!!

My last fears involve (1) this is the third time it has come back (rare since the last time they said they had clear margins after a sizeable punch biopsy) and (2) it is on my scalp/head which has a poorer prognosis than other locations - even tho they say "in situ" is curable with removal.

Any insight?

CFenton

Melanoma in Situ

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vincenl's picture
Replies 5
Last reply 1/21/2014 - 9:38am
Replies by: Anonymous, jack6020, vincenl, Janner, JerryfromFauq

 

I have a question: about 1 1/2 year ago I had a mole on my back removed. This happend in the largest academical hospital in Amsterdam. The result whas strange: my dermatologist said they where sure that it whas not a melanoma but they could not really say what it whas.

My dermatologist recommed to remove extra margins around it, to make sure it would not grow back. I,m not sure how big those extra margins are I think between 0,5 and 1 cm

It might be important to mention that before the mole or whatever whas removed I pick alot on it and tried to scab it off myself. Not a smart move I know but this might be the reason why they could not really see what it whas.

My question is does this happen more, that they could not really say what it is? and can they exclude melanoma but no say what it whas?

 

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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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WendyD.'s picture
Replies 0

I am still waiting for the derm to reread my original biopsy for the melanoma. 

In God I Trustsmiley!

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