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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joy_'s picture
Replies 8
Last reply 9/27/2013 - 5:44am
Replies by: mdewees, Rocco, kylez, joy_, Gene_S

Hi all.  My husband is starting a trial that will begin with 6 weeks of vem. followed by ipi every 3 weeks.  I noticed that the dosage of the ipi will be 10mg/kg and that the FDA approved dose is 3mg/kg.  I understand what the side effects are at the "standard" dosage but am wondering what we should expect at the 10mg/kg.  Should we expect the same side effect just more intense?  Should he prepare to be out of work during this time?  Is there anyone else here who has been on a trial at this dosage?

Thanks in advance for any advice.

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bikerwife's picture
Replies 4
Last reply 3/13/2013 - 10:50pm

Lynn is having his 5th gamma knife this morning they put him to sleep for the procedure this time. He had his first treatment with abaraxene last Monday. Just tired no other problems so far. 3 weeks on one week off en repeat then scans. Blessing and prayers for everybody out  mpip land.

Belva

What God leads u to he will. Lead you through

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bikerwife's picture
Replies 1
Last reply 3/13/2013 - 7:24am
Replies by: POW

Lynn is having his 5th gamma knife this morning they put him to sleep for the procedure this time. He had his first treatment with abaraxene last Monday. Just tired no other problems so far. 3 weeks on one week off en repeat then scans. Blessing and prayers for everybody out  mpip land.

Belva

What God leads u to he will. Lead you through

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Hi everyone,
Well after a hectic ten days or so of making, then rearranging, then again rearranging appointments and treatment schedules I have started on the Novartis BRAF and MEK inhibitor combination trial, as well as starting radiation for the tumour behind my left eye.

Things were really getting rough for me over the weekend just gone, I was suffering dreadful pain around the eye, our family GP prescribed me some Endone but I think that didn't agree with me and I became nauseous and couldn't keep anything much down, finally when I got to the radiation planning study on Monday the doc prescribed me steroids and brought the treatments forward, the steroids had an immediate effect and I am feeling way way better although there is a long way to go with dealing with the orbit tumour.

The first two trial days have been ok, day 1 involved a whole day at hospital being blood tested prior to dosing then taking the tablets (I have to take 3 MEK 45mg and 5 BRAF 450mg in the morning, and another 3 MEK at night), then continuos blood testing throughout the day, I think 6 samples all up, to check uptake of the drug. I basically rested in a quiet hospital room all day, listening to some music and trying to recover a bit from the rough weekend.

So I've now had a grand total of three doses of the meds, nothing to note as yet, there are some potentially nasty side affects on the eyes so they monitor that situation closely with regular ophthalmic check ups. I am just counting down the days until I can get to see my husband and little boy again, they are travelling to be with me just before Easter and over the holiday.

Would love to hear how anyone else on this trial is getting on,
Cheers
Ally

A bad day's fishing beats a good day's work everytime

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nancy mary's picture
Replies 4
Last reply 3/14/2013 - 9:08pm
Replies by: nancy mary, Anonymous, Tim--MRF

Hi.
I have a question about my path report.
from what i,ve read mine does not include mention of most of the item talked about or read about
Online. It is from Columbia dermatpathology NYC.
It reads: " I interpret this as in situ melanoma, possibly arising in a dysplastic nevis.
The lesion extends to one peripheral margin in the plane of bisection."
This was ashave biopsy.
Micro: the specimen is bisected and shows confluent junctional melanocytic nests as well as many
Single melanocytes extending upward within the epidermis.

Is this sufficient? I,m puzzled that thi eas all that was written.
Appreciate your opinions. Thanks.

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Hi.
I have a question about my path report.
from what i,ve read mine does not include mention of most of the item talked about or read about
Online. It is from Columbia dermatpathology NYC.
It reads: " I interpret this as in situ melanoma, possibly arising in a dysplastic nevis.
The lesion extends to one peripheral margin in the plane of bisection."
This was ashave biopsy.
Micro: the specimen is bisected and shows confluent junctional melanocytic nests as well as many
Single melanocytes extending upward within the epidermis.

Is this sufficient? I,m puzzled that thi eas all that was written.
Appreciate your opinions. Thanks.

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nancy mary's picture
Replies 6
Last reply 3/13/2013 - 4:24pm
Replies by: nancy mary, Janner

Hi.
I have a question about my path report.
from what i,ve read mine does not include mention of most of the item talked about or read about
Online. It is from Columbia dermatpathology NYC.
It reads: " I interpret this as in situ melanoma, possibly arising in a dysplastic nevis.
The lesion extends to one peripheral margin in the plane of bisection."
This was ashave biopsy.
Micro: the specimen is bisected and shows confluent junctional melanocytic nests as well as many
Single melanocytes extending upward within the epidermis.

Is this sufficient? I,m puzzled that thi eas all that was written.
Appreciate your opinions. Thanks.

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Bobman's picture
Replies 5
Last reply 3/25/2013 - 10:03pm
Replies by: CLPrice31, Janner, Bobman, Anonymous

Its been about two years since I first posted about my first primary on my neck. Since Januarary of this year I have had four more located on my back, with depths from .4mm-.7mm. So this makes five in two years. All treated with wle, and I am still a little sore from my last two wle's last week. I have the dysplastic nevi syndrome, and have north of 500 on my body. My derm told me I have tied his patient record for multiple primaries, and the surgeon told me it was a bit unusual.

So, my questions are, how unusual is this to get so many primaries so fast? With the atypical syndrome, is this what I can continue to expect? Am I now getting into a different risk factor for progression? With so many changes happening on my body so fast, I am not sure what to make of it. I did in fact find the last three, as I am being vigilant about watching for changes, but it is a challenge with so many to look at.

Any suggestions and or advice are much appreciated.

Also looking forward to chat getting up and running so I can come in and vent a little and talk with some of you i have met on there before.

Thanks,

Bob

We are one.

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Some may know my history, it is up to date on my profile.  Surgery in October. Surgery in November. Interferon in December (two days after hubs mom died) to half of January then stopped per oncologist.   No current treatment now which freaked me out.  So I had two biopsies taken cuz I had some free time and they are dysplstic Nevis. Great news.  These are how my primary started so two more WLE procedures, thankfully just in the procedure room.  That's on the 5th of April.  And finally I get my scans on April 9th to see if the lung thing grew bigger than 4mm.  This is my scared to death point.  I would go to stage 4.

You can cut things out of me, pull out nodes but playing around with the internal stuff is paralyzing me with fear.  It came on when we got home from a month in Florida.  Life seemed so normal and happy and great excersing and shopping (I've gone from a size 16 to a 6 in a year, partly due to eating gluten free and then not being able to eat while on Interferon.  when I was shopping I was thinking. I wonder if this would fit my daughter when I'm gone.

I have continued to crazily clean and organize the house.  A few more degrees warmer and I can wash the outside windows.

I am continuing to teach my 17 year son life skills.  Cleaning, laundry. Kitchen, shampooing carpets. Chasing spider web's,, etc.  We have also started an herb garden, quite large. He should be a great gardener before I die.  Hubs and I do all paperwork together so he will be fine. I also keep a copy of all passwords and account numbers in a book in a lockbox with important papers.

So, yes, since we returned to the dull cloudiness of Ohio, I have lost my great attitude I have carried all along.  I just don't know where it went.  My depression is up, my anxiety is way up, and this weather makes my joints ache.  

When do you get to the point where you don't have some kind of procedure or treatment going.  Where you can catch your breath and not planning more treatment for the next stage.  People say just push it to the back of your mind and keep living.  But when things are happening monthly I cant seem to do that.  I am a naturally positive person with empathy for everyone one this board and most people in general. I am very spiritual,  take care of my chakras, meditate, use essential oils.  And match colors according to my aura.

I know I lost a few of you there but these are strategies for me to keep going and healing.

I'm tired from the last 6 months, hurrying to get stuff done at home and scared about next month.

Any advise, kind words, kick in the pants, PMA, lullabies welcomed.  Nasty remarks will be burned in the fireplace.

Thanks, Colleen 

Live!

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cld's picture
Replies 9
Last reply 3/17/2013 - 9:18pm
Replies by: Tina D, cld, jcmp, aldakota22

I had surgery in December and it's returned already!  Sigh!  I need Al to tell me to beat the beast!

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Cielo's picture
Replies 3
Last reply 3/12/2013 - 2:57pm
Replies by: kylez, Colleen66, aldakota22

We have been praying for guidance and hope that along the way God will keep guiding us of what we have decided.  We were told yesterday that it is the only best option. Scott's LMD is around the membrane and there is no telling where it has been spreading, so Gamma knife since it is a "Specific/targeted"  treatment is not for him.  This will cover also taking care of the lesion around the sinus. Today, he will get his first session of the whole brain radiation.  Please send us positive energies and prayers.  Thank you all.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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POW's picture
Replies 3
Last reply 3/14/2013 - 11:14am
Replies by: Tina D, Janner, Cielo

PBS Newshour broadcast an important segment last night titled: "What happens to your online accounts when you die?" According to this report, there are few laws-- and no consistent laws-- about how executors can get information about or gain access to online accounts. This hit me particularly hard because I handle all of our finances and they are all done online-- not only checking and savings but also investment accounts, retirement accounts, everything. My husband knows I do this, but he has no idea how to do it himself and he is completely uninterested in learning. For most of these accounts, they do not even send out paper statements anymore so how will my heirs even know they exist? The financial institutions do send me a notice that my monthly (online) statement is now available, but the notice goes to my (password protected) email!

My brother's first symptom of melanoma was a stroke. He was taken to the ER where they determined that he had had a stroke, then found that the stroke was caused by a bleeding melanoma tumor in his brain. Unfortunately, the stroke itself damaged his memory and he could no longer remember the passwords to his accounts or the combination to his storage locker or anything. Fortunately, he was still alive and mentally competent so I was able to work with him to re-set everything. But the whole process took several months.

So just a word to the wise that if you have online financial accounts or Facebook or email or Picasa or whatever, be sure to write down the account information and put it in a safe place. If you don't want to share it with anyone right now, at least put it in a safe deposit box that your executor will be able to access. And if you are an executor, be sure to check the free websites for "unclaimed money" as described by consumer advocate Clark Howard ( http://www.clarkhoward.com/news/clark-howard/personal-finance-credit/finding-and-claiming-missing-money-easy/nCySp/ )

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ncdaniel's picture
Replies 6
Last reply 3/13/2013 - 12:34am

Since my the Melanoma in my wife has spread from her head ( Removed 2011 11.5 mm deep ) to her lungs in July 2012 meta sized to lung multiple spots with tumors a needle biopsy was done in 2012 of her lung tumor.The sample showed Melanoma (no surprise) but the sample was not big enough for Braf testing, The assumption was made that since her original tumor on her head was tested not to be  BRAF receptive so would her lung tumors. My question is should new samples be taken and tested? I have just read on this site about NRAS testing should this be done?  I am not sure I even understand NRAS but any thought would be appreciated. I know most of you are not medical people but living this makes you one pretty quick. Any advice would Help. My wife has had IL2 - not a responder, and had one dose of IPI /Yervoy and is now on high dose steroids 80mg now 60mg due to issue not sure when or if Yervoy will resume anybody with any experience with this?

Daniel

Trust in God - Live one day at a time

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Colleen66's picture
Replies 20
Last reply 3/13/2013 - 10:08am

 

My head is spinning, anxiety is over the top, depression kicking in.  Spring cleaning all days to give my mind a rest.  Could really use the chat room.

Colleen

Live!

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dian in spokane's picture
Replies 3
Last reply 3/12/2013 - 8:46am
Replies by: Anonymous, Colleen66

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