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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ad2424's picture
Replies 6
Last reply 11/6/2011 - 10:47am

Hello everyone

Is anyone on this trial at Yale or Sloan, or does anyone know how it is going?

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NatalieZLea's picture
Replies 6
Last reply 9/23/2012 - 3:14pm

 

Hello all!

I was wondering if anyone could share their experience with Zelboraf.  In particular, I would like anyone's insight/experience with foot calluses and related pain.  My mom was diagnosed with metastatic melanoma last May.  Since then, she has undergone a lung resection, biochemotherapy, and most recently three craniotomies in three months' time.  Currently, mom has six brain tumors, a lesion in her liver and also disease in a lymph node near her pancreas.  Two and a half weeks ago, mom's oncologist at MDAnderson here in Houston started her on Zelboraf.  Since then, she quickly experienced side effects--notably sun sensitivity, a terrible rash all over her body and unbearably painful yellow calluses on the bottoms of her feet.  Her oncologist decided to suspend treatment for a week because mom's rash was so terrible and foot pain intolerable, and we will re-visit everything on Monday.  I was curious whether others have had the same experience as my mom regarding the excruciating foot pain and if so, how long does it last?  What remedies were used to releive the pain?  Also, any other contributions regarding your experience with the drug would be most appreciated. 

Kindest Regards,
Natalie

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NYKaren's picture
Replies 12
Last reply 8/6/2013 - 5:55am

I saw Dr. Wolchuk today, and he said that nothing lit up on the PET scan.  So we looked at the report, and things are looking  better.

To the naked eye, I feel that it looks like it's at least 50% gone, and he agrees.  He already emailed Dr. Sznol (at Yale/New Haven) recommending more IL-2, and Dr. S. is in complete agreement!  Hurray!!!  I honestly cannot believe it.  So now I'm waiting to hear from Yale about timing.

To be completely honest, this will wreak havock with my job,and I MUST keep reminding myself that MY HEALTH COMES FIRST, AND IT'S BETTER TO BE HEALTHY AND JOBLESS THAN DYING WITH A JOB!  I'm the sole bread-winner (my husband has liver disease) so it is somewhat scary, but as I type this, I know that I'd better follow the very same advice I give others.  Run, don't walk, to a treatment that's already making me better.  

So, Charlie, don't kick my ass, I'm just bein' honest here!  

I believe strongly that the IL-2 activated the Aldera, and that combo accounts for the dramatic response on my face.  Dr. Wolchuk and Dr. Halpern (dermatologist  @ Sloan) seem to agree.  I really like those two a lot, both as doctors and as people.

Here's hoping for more good news around here.

karen

Don't Stop Believing

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windy's picture
Replies 2
Last reply 11/4/2011 - 8:01am

My name is Windy, 43 years old and I have been diagnosed as stage 4 met in stomach.

The story begins in 2009. I found a mole on my back and was sent to a derm, who sent me to a surgeon. It was found to be melanoma but completlely contained (it had not broken through into my epidural and had clear margins) fast forward to February of this year. I did not feel like myself, very tired, didn't feel well and run down.

Found my first two tumors on my head in May and was told it was an infection. This happened 2 more times (dx of infection) so I made an appointment with an oncologist (July). Within 7 days she had me diagnosed with sate 4 melanoma contained in the soft tissue and lymph nodes.. Our first attempt at treatment was Silatron. After 5 treatments more and more tumors had appeared. My Oncologist sent me to get an upper endoscopy and found that the cancer had met in my stomach.

I was sent to MD Anderson for treatment. Biochemical treatment was started with IL2 / Interferon / and 4 chemo drugs. I went into the hospital and stayed for 6 days while the medicine was administered. I made it though 2 treatments and found out that I am BRAF positive.(Nov) I will start the drug tonight before bed. 4 pills in the morning and 4 pills at bed (12 hrs apart).

Problems that I encountered during bichemical treatment.....

Dry mouth - used biotene, works great.

Adverse response to drinking water - vomitting; started drinking flavored water.

Dehydration - after my first treatment I ended up in the hospital with dehydration. After the second dose my doctor had fluids delivered to my house for 5 days along with a pump. This was EXTREMELY helpful. Eating soups helped also.

Unquenchable thirst - try eating something sour or salty, sounds stupid but it really works. I used vinegar and salt chips.

 I have lost 40 lbs and most of my muscle tone. I wish that I had forced myself to walk more often during the earlier treatments. The road I have ahead of me is still long, but I can see the light.

Hope that this was helpful.

 

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Charlie S's picture
Replies 17
Last reply 11/6/2011 - 5:36am

No, he's not dead   laugh

He has, however had a sour  turn of events after about a good two year plus run on what was then IPI and is now Yervoy.

Spoke with him just a few minutes ago and he is in the hospital after doing a 5k bike race a month ago to needing a cane and more today.

He has a bunch of neurological events that imploded on him, but his team is all over it in Boston and they are trying to get him put back together.

So, if you would, send up a smoke signal, ring a bell or just otherwise send him some good vibes , I know he would appreciate it !

Cheers,

Charlie S

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cwu's picture
Replies 8
Last reply 11/3/2011 - 6:06pm
Replies by: Anonymous, cwu, jim Breitfeller

Hi all,

My father just finished his third dose of Yervoy and his onc is not optimistic it will work and told us there are limited options if it doesnt .  He said we should also start looking into hospice care.  We are in shock, disbelief, and having difficult time accepting this.  I am trying to get a second opinion from another facility and was wondering if you all have any advice on facility, melanoma doctor, contact info, and any tips. I am still on the fence about whether I should tell his doctor that we are trying to get a second opinion because I dont want to do anything that may compromise dad's care. The problem is dad cannot travel since his leg is swollen and lesions break and bleed so I was hoping to get a doctor to do it via emails/phone calls if I can send them medical records and pictures. I am willing to travel to meet the doctor but dad is not able to. 

I am going to look at anti-pd1 trials too but want to see if you can advise me about getting second opinion.

Chau 

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Hi I finished my 4th round of biochemo treatments about 10 days ago. My biochemo consisted of Temador, IL2 and Interferon injections. Hospitalized in ICU for 5 days each time.

I still have  a luump in my leg which I think is more tumor and its getting larger. I do ultrasound for a living and have been following the lumps-big change in the last 10 days.

Stage 3C ulcerated lesion, single micromet in sentinel node. 1 month hose dose interferon failed. 2nd surgery 7-1-11 lump removed from current spot that had melanoma cells and was falling apart.

Will get PET/CT either tomorrow or monday alson w brain MRI.

I'm freaking out. Dr. mentioned a bx for sure last week when I was in hospital and mentioned Yervoy ? combined w something else. He didn't elaborate.

I'm BRAF and C kit negative. Dr. said I'm positive for NRAS but I didn't see that on my copy of report. Test also said my tumor was sensitive to Temador.

Any thoughts?????

Julie in Las Vegas

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heartcode's picture
Replies 4
Last reply 11/11/2011 - 3:35am

Hello, does anyone out there have any success with Medicare Part D?  

My Mother is Stage IV Mets and has been prescribed Zelboraf , but it leaves an enormous co-pay that cannot be afforded of $2,000 + per month.  We are trying to get assistance from Genentech on this, but it is leaving a huge monthly payment.

Does anyone have any suggestions for this?  Success stories, advice?  How are you affording your Zelboraf?

Thank You

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melanomafighter's picture
Replies 7
Last reply 5/18/2014 - 12:48pm

Hello  Just wanted to share some good news, I have been NED for another year,  CT scan came back clear of Melanoma and still no sign of it.

It gives me great joy to post this, when I was first diagnosed I was not sure how it will all play out, seems since my surgery of removal 4-2010, the

Drs are pleased to not be able to find it anywhere almost two years later.  Thanks to all of you who post your updates, fears and joys on this board.

I still come in here at least twice a month and see how everyone is doing.

Remember what's important and make everyday count

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/3/2011 - 1:16pm
Replies by: lhaley

Hi,

 

I have been traveling so I am trying to catch up on everyone. Hope Val is doing well. Has anyone heard from her. I pray all is well with her.

 

Mary

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shellebrownies's picture
Replies 31
Last reply 11/7/2011 - 12:18pm

I am sorry to report that Don was called home to heaven late Tuesday night, November 1st. He passed peacefully, surrounded by his loved ones.

May God bless each and every one of you, whether warrior, caregiver, or loved one no matter what part of the journey you are on. Hoping you each have your own personal miracle.

 

I will still be on here, but I may need to be away for a little while or I may be on sporadically for a bit. 

 

Michelle, wife of Don always.

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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lizzykittycat's picture
Replies 5
Last reply 11/8/2011 - 8:17pm

so, currently i am at stage 3a with 2 dissected sentinel nodes with micro mets (scattered in one and clustered in the other).  my surgeon at the njcc recommended proceeding with the removal of the rest of the nodes in that area.  he stated that i would have a 20-40% chance of lymphedema after the surgery that i will have to live with for the rest of my life.

yesterday, i saw dr. coit at mskcc in ny.  he seemed to have a bit of a different recommendation.  although he didn't say NOT to do the surgery, he presented some facts that really caused me to start to rethink whether or not to have it.  he played up the struggle that i would have with lymphedema.  he also stressed the fact that it's unlikely that the remaining nodes with be cancerous (20%).  he offered the option of entering a trial that randomly decides if you have the surgery or if you monitor closely. 

i'm having a VERY difficult time making this decision.  i'm leaning toward having the surgery, but am also terrified of having a swollen leg forever.  :(

has anyone been in this position?  if so, which option did you choose?  can anyone tell me if they experience lymphedema and to what extent it limits their life?

i have at least a month before my next surgery while my excision wound heals. 

i'd appreciate any insight.  have a great weekend.

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Shelby - MRF's picture
Replies 10
Last reply 11/5/2011 - 9:00pm

Hi everyone,

I apologize for the ridiculous amount of SPAM that was/is on the bulletin board.  We are looking into ways to tighten that security to reduce (or prevent) this stuff from appearing.  In the next week or two we'll be running through some different options that will hopefully be of minimal distraction to you.  We have a few options but, as you could probably guess, the most effective ones will likely be the most annoying for the regular users. 

I just wanted to thank you for continuing to let me know when you see these types of posts.  In the future, if it's easier, I just need the username of the SPAMMER and then I can block that user and start deleting posts.  Deleting the posts takes some time because we have to do it one at a time.  We're also looking into fixing that.  Thanks for your patience everyone and as always, be sure to let me know if you need anything.

Shelby - MRF

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LynnLuc's picture
Replies 2
Last reply 11/3/2011 - 3:45am
Replies by: JerryfromFauq, deardad

My thyroid is toast...and  due to the MDX 1106 ( anti PD 1)...oh well so I take a pill every day...not a bad exchange for NED. Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Emily C's picture
Replies 4
Last reply 11/9/2011 - 1:05am
Replies by: Emily C, jmmm, SarahS

Hello everyone!  My name is Emily and I'm completing a project in school...and I need your help.  I am creating a website to advocate melanoma awareness, and I would like to add some other personal stories besides mine.  If you would like to be featured on my website, I would love to hear your story and your thoughts on the current crisis of rising melanoma rates in young adults and children.  Thanks!

I go to nature to be soothed and healed, and to have my senses put in order.

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