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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Replies by: Anonymous, boot2aboot, LynnLuc, MeNDave, deardad

The oncologist told us today that my husband's latest PET/CT disclosed a couple of new mets and some growth in pre-exisiting mets.  This means that the drugs are no longer working for him and we are on to plan B, which we need to decide upon very soon.  The two options the doctor presented were:

 

1. enrollment in a phase two clinical trial by MERCK on PD-1 or:

2. treatment with Yervoy and the Roche BRAF inhibitor as a combination therapy.

 

The doctor said if it were him, he would do the trial.

 

Does anyone have any informtion on the PD-1 trials?

 

Thanks

Deborah

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yoopergirl's picture
Replies 7
Last reply 2/16/2012 - 12:01pm

The more I read on this board the more I realize that I am not informed on my cancer status. Was told in December I am stage 4 with the melanoma spread in my lungs from my primary in my left finger(2006) a reaccurnace in Dec 2010 to the forearm and lymph nodes.

What I am asking for is some questions that I should be asking the oncologist on Monday, I see him before I have my third yervoy infusion.

I do know that I am Braf negative (whatever that means) don't know much else. I am being seen at the Marshfield clinic in Wisconsin. I am actually his first patient for the Yervoy. I have gotten 3 opinions already and they all said to go with the Yervoy since interferon was too hard on me last year, did the month infusion but it made me so sick had to stop the shots at home.

As far as the Yervoy I am tolerating it well, my labs are all good but am having alot of the itching. You all are such fighters here and I intend to be too so am thanking anyone who could help me out here....yoopergirl

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lhaley's picture
Replies 23
Last reply 2/22/2012 - 9:09pm

Went today to get my stitches out from the crainectomy along with the pathology and suggestions.

Found out that the pathology said that the tumor was already 70% gone before the surgery!!!!  The issue was all edema.  While originally it was to be more radiation ect they have decided that the tumor bed is gone.  They have started weaning the steroids tonight and am now at 3mgs. Will take about 3 weeks with hopefully no issues.

My body is destroyed and will take quite a while to get back strength. I have both an occupational therapist and a physical therapist. I know it will take time but how excited I am with their news!   My next appointment with the nuerosurgeon in 3 weeks, as of today he felt that I had no nuerological damage.  Last Pet was Jan 3rd and at that time was NED. 

The next few weeks I will be working so hard to get my strength back.

I think we flew home from Charlotte instead of the car driving.  Dance with us tonight.

Linda

Originally stage 1A in 1979

Stage IV 2006 - 7 recurrances

Brain Met - Oct 2011 been dealing with steroids since then

Now Feb 15th  NED!!!!

There is hope

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Karin L's picture
Replies 7
Last reply 2/17/2012 - 4:27pm

My onc. requested I see a neurologist for relief or treatment of my neuropothy in my hands and feet.  It has gotten worse since the onset about a month ago.  My appt. was today. 
She has me going in for a battery of tests.  Is this really necessary?  She has me completed freaked out in the meantime (told me not to worry, ha!).  MRI of the brain (just done in Nov.), MRI of the spine, and MRI of thora...(not sure what that was/is).  Bloodwork (I get that), a nerve conducting test. 

I also get ruling things out from the Dr's point of view, but I am anxious to say the least.  I requested an open MRI and the answer was ABSOLUTELY no.  She said the pictures aren't good enough.  Really? 

I am 8mos. out from IL 2 treatment and was under the impression neuropathy was fairly common.  My onc. was sure it was not the cancer but a side affect from treatment.  The neurologist kept hinting at the melanoma possibly in the spine, brain, nerves, etc.  I have been responding to the IL2 treatment since week 1 in the hospital.  Last scans in Dec. show continued improvement.  Many tumors disappeared, others shrunk by 80% or more.  Bloodwork last week excellent.  Could there be issues in the brain (MRI clean in Nov. when they checked for rining in the ears), or spine that are not responding? 

She said there was very subtle differences between my right and left legs.  For those with neuropathy, did your muscles also feel weak? Or heavy at times? 

So frustrated, thoughts?

Karin

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Kelly7's picture
Replies 4
Last reply 3/12/2012 - 3:46pm

I have a question about the whole IL2 process. Is the best case scenario is that the tumors shrink, or is there a possibility of them disappearing? And if there is  positive results after the 1 week on, 1 week off, 1 week on, what is the next step? Another week on, week off, week on? What is the spacing between treatments? How many do you do? 

The week between treatments, should all the weight come off? Should the patient feel back to "normal" the first day they go back to the hospital for the 2nd phase? Does the first amount of bags allowed correlate to the second amount allowed?

Those of you that did this treatment, do you feel eating a banana a day helped? What about walking each day?

IS there anything my brother should be doing this week besides resting?

 

Thank you for any information you can give me!!

 

 

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Richard_K's picture
Replies 15
Last reply 2/24/2012 - 8:04am

I got scan results today, everything was good, and I was given another six weeks supply of Zelboraf.  In two weeks I will pass the two year mark of taking Zelboraf.

Dick

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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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ElaineLinn's picture
Replies 6
Last reply 3/21/2016 - 2:06am

This battle began about 3 years ago, my first bout with melanoma was a mole on my back that my family dr. said was nothing and one day when he wasn't busy we would remove it. But in the mean time 3 months down the road I was having surgery to remove a nodule on my voice box, My ENT dr. saw the mole and asked me if he could remove it while he had me under working on my voice box and of course I said yes. 2 days later  this Dr calls me to come in for the TALK . I was sure I had throat cancer, but what he told me even shocked me worse. The mole was Melanoma and I had to have the wide extraction. He sends me straight from there to James Cancer Center in Columbus Ohio for the wide extraction. This surgery went fine, but it was in a bad place on my back and would not heal. I just knew something was wrong but no one would listen. 1 year later I had a hymnodies swell in my neck, AGAIN my family Dr. said it was nothing just caused from and infection. I let it go for about 6 months until it became almost impossible to move my left arm and decided to take a trip to quick care, and this dr. is the one to inform me that my cancer had spread to the hymnodies. Back to James Cancer Center for another surgery to remove the tumor and all surrounding nodes. Dr. Agnes removed 48 nodes and only 1  checked out for Melanoma, on to the oncology for Leukine treatments. After 5 months of treatments all was going so good [or so I thought] I was getting my strength back and was moving my arm very well. But yet again a routine trip to a NEW family Dr. because of kidney stone symptoms, he order a CT scan of the abdomen where they accidently got part of my lower lung and found 2  spots on my lung. This lead to a CT scan of my full lung that show 15 spots on my lungs. I was really floored. But once again back to Dr. Agnes who tells me that it is in operably because of the number of spots, so the next meeting was with my oncology Dr. Kendra , and we decide to try the IPI infusion. I had my first treatment on Feb. 4th , no side effects other than itchy skin which I can deal with. But I must admit I am VERY scared because I have been told that this drug only works in 20 out of 100 people. I am a mother of 4 adult children and  have 7 grandkids, which I have had custody of 3 of them for over a year.  I want to be around to raise these little ones, but I am not sure I made the right choice in treatments.

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katiebird's picture
Replies 5
Last reply 2/17/2012 - 4:09pm
Replies by: ElaineLinn, katiebird

It's been a while but I'm back with a question. My primary was Stage 1B  on my left thigh in the summer of 08. SNB and WLE were both all clear and I've had clear check ups regularly since then other than one spot on my left calf that required just removing the skin around the site to be safe. Can't remember now what that procedure is called!

Fast forward to a month ago, I noticed a small lump right below my left jaw bone. At first I thought it was a pimple but it never really went away. The nurse at the school I work at checked and said it was a swollen lymph node. I'm sure I've had swollen lymph nodes before but I've never known it. This has been over a month now and I'm wondering if it's something worth getting checked out, and if so by whom? Do I go to my PCP or my dermatologist? I'm sure it's something totally unrelated to my melanoma but that thought is always lingering in the back of my  mind.

Thanks

Kate

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Lisa13's picture
Replies 6
Last reply 2/20/2012 - 2:38pm
Replies by: Maxximom, kylez, Anonymous, boot2aboot, LynnLuc, WendyPam

I'm starting ipi again on Friday - has anyone heard of the percentage of numbers for reinduction?  I've heard they're better used by responders, but I just have no idea.  There seems to be many different numbers, so it's hard to understand what it could be.  Half the time, I can't understand why a medicine wouldn't work if it worked before, but nobody seems to know this clinical drug very well.

Also, where in the U.S. are they having the cinical trial for Anti PD1 - Bristol Meyers? Apparently this one has been doing very well, but there isn't alot of these out there.  So confusing!  In Canada, we'll have Anti PD-1 (Merck) in 2 months, but I'm not even sure if this is going to be as good. 

One last thing, my Dr talked about a new clinical trial for brain mets coming available, so when I here about this, I'll be letting you all know.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Angela C's picture
Replies 6
Last reply 2/17/2012 - 4:38pm
Replies by: boot2aboot, Angela C, LynnLuc, Rebecca and Bob, Anonymous

Hi there.

I have an adrenal tumor and a tumor next to the pancreas that need to be removed surgically since I have failed IL2, MDX-1106 and Yervoy. It's been decided to try and get into the TIL trial.

My doctors office contacted NCI today and I an waiting to hear from them on what information I need to send. I'm just wondering how long it has taken others to get in for a consult? We as patients always want things done yesterday. :) I'm just concerned how long it might take for me to get everything compiled and sent and then how long it will take got them to get me scheduled. Every day we wait us another say these tumors are growing and becoming harder to remove surgically.

Also, do you know if they will remove just part of a tumor for TIL if they are unable to remove the whole thing?

Thanks!!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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walesgirl's picture
Replies 4
Last reply 2/14/2012 - 8:41pm
Replies by: scots, Sherron, SoCalDave

Greetings comrades and Happy Valentine's Day!

I will be meeting with a radiologist on Friday to discuss local treatment to an area on my scalp where 'my' primary and local recurrence were located...

anyone have any experience with scalp (as opposed to brain) radiation treatments? Could I lose ALL of my hair, or only that in the general area...I'm just not sure if what I read is applicable to radiiation to the skin, as opposed to deeper tissue...of course, I'll learn much from the physician, but just curious...thanks so much and enjoy this day!!! 

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Anonymous's picture
Anonymous
Replies 12
Last reply 9/10/2012 - 6:27pm

Hi, new here and looking for some info, input, people's 2cents etc.  As you can see below, I have quite a few questions!

my husband was diagnosed with melanoma just over a month ago.  Clark level II, Breslow 0.19mm  so pretty small.  But it is on his face... so they have done a wide excision biopsy and skin graft.  Healing well.   The pathology came back a few days ago saying that the wide excision biopsy has no evidence of residual in situ or malignant melanoma.  However, they didn't do a sentinel lymph node biopsy because it is on his face... so we don't actually know whether or not there is any cancer in his lymph nodes.

However, we just got a call from our local cancer centre saying that the radiation oncologist wants to meet with him... no other information.  So as I now sit around wondering...

Does anybody have any input or info about a similar type/stage of melanoma?  what is normally done for treament if the wide exision biopsy comes back clear? from what I read online, it should just be done with now (aside from long term monitoring), so I am really confused about this oncologist appointment... Has anyone here had radiation therapy for melanoma?

 

thanks a bunch!

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Maxximom's picture
Replies 19
Last reply 2/19/2012 - 5:28pm

Well my adventure into the Brave New World of Melanoma started yesterday with my first Ippi treatment in Columbus at the James Cancer Center at OSU. Any hints at what to expect or any suggestions would be appreciated.The infusion went fine..so far no side effects.. but then it's only been less than 24 hours. Keeping my fingers crossed that this will work and the side effect will be at a minimum. Happy Valebtines day to All of you

Joan

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natasha's picture
Replies 2
Last reply 2/14/2012 - 9:27pm
Replies by: Mike N, aldakota22

HAPPY VALENTINE'S DAY !!!!!!!   WISH YOU A LOT OF LOVE AND HAPPINESS !!

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