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.

Expand/ Collapse Topic
 
Replies By
View Topic
blissful_creations's picture
Replies 3
Last reply 9/5/2013 - 7:45am
Replies by: Tina D, POW, Swanee

I have been following this forum since I was diagnosed in April 2012 with stage 3b at age 25 Since I have had no reoccurrence since then other an atypical mole. I just want to hear some long term survivors because I am having some scanxiety. My last treatment for a clinical trial of ippi with 10 mg is in 3 weeks. (Praise God). I have enjoyed 18 months of relief yet hesitation. Such a contradiction. Anyone else have this dilemma with my complex of being scared yet enjoying the moment especially with my 5 and 2 year old.

Login or register to post replies.

JoshF's picture
Replies 2
Last reply 9/4/2013 - 5:16pm
Replies by: JoshF, Janner

Hi All...I have a goofy question but one that is nagging at me. I posted just a few days ago about abump within scar and a possible recurrence vs. scar tissue etc... Anyway, I see doc on Friday but I'm tugging a IF it is melanoma (I know...don't go there...but many of us know its hard not to), and I have to have re-excision, will there be enough tissue to get clear margins? I already had a big chunk taken from my cheek from the first wdie excision. Would this make it unresectable? Just wondering what options would be....leaning towards lump not being melanoma :)

 

Josh

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

Login or register to post replies.

lrkg1234's picture
Replies 11
Last reply 9/5/2013 - 8:45pm

Hello all. 

Thanks for the endless support and advice. This board was so helpful in learning and planning for Scott's treatments as well as emotional support.

Scott passed on August 30th, Friday AM at 10 AM.  I was there with him and it was OK.  Peaceful and easy.  He was not afraid and he was accepting of the situation.  I know he is free now.

He was so strong, always working towards the next treatment, never complaining.  But the cancer had taken it's toll and it was time for him to be rid of that body.  We will all miss him dearly, but I know he is much happier now and that we will meet again.

Keep up the fight all.  As time goes on things get much better.  Better treatments, better chances. 

 

God Bless, Lisa (wife of Scott)

 

Below is a link to his online memorial scott-alan-gause.forevermissed.com

Login or register to post replies.

DeniseK's picture
Replies 14
Last reply 9/21/2013 - 5:42pm

OK, so most of you know my story.   I get my 4th and final infusion of Yervoy day after tomorrow and I am taking Dabrafenib full dose.

Zelboraf quit working for me around the 6th month.  

Anyway, I know my melanoma is getting worse.  I can feel subq's on my neck and back that are new.  The sub q on my arm is getting pretty big and I am going to talk to my doctor about removing it due to pain.  I am not sure if I can have surgery while on the medication.  I can quit the Dab cuz it's not working anyway but what about Ipi?  

Also I don't think I have the time for Ipi to kick in.  I can feel my body getting weaker and my back and chest are hurting more and more.  I know I only have a short time.  So I haven't got an MRI yet to see if my brain is stable but I have a feeling it's not.  I'm really hoping I'm wrong but I am having dizzy spells and pains in my head.  My question is what is left for me if I can't get into the PD-1 trial?  I was thinking temodar or IL2?  Are there any other options?  Is IL2 the one you have to go to the hospital for?  Is it Interleukin combined with what?  I am completely scared at this point and need some help.

Thanks everyone

Denise

 

 

 

 

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Login or register to post replies.

purley123's picture
Replies 10
Last reply 6/28/2015 - 11:56am
Replies by: Rcmcd09, purley123, Janner, Anonymous, casagrayson

Hey guys.

About three weeks ago i had two suspicious moles removed from my back and front. Carrying on to this present day, I felt a tingling sensation on the side of my foot. At first i thought it was nothing as this was a common occurace for the past 1-2 months, but when i closely investigated it, I was surprised to see a dark mole there (the tingling sensation was at the exact same place as the mole).

So i ended up researching on the internet (worst thing you can do) and found out that a tingling/burning sensation is an early symptom of Melanoma. As you can guess, I'm terrified. I don't know if the Melanoma has spread if it's changed or anything.

I have a dermatologist appointment booked previously for the 27th of september.. But i don't know how I'm going to cope till then.

Login or register to post replies.

priyashah38's picture
Replies 2
Last reply 9/3/2013 - 2:07pm
Replies by: Janner, casagrayson

 i have a greyish black line running across the length of my left thumb... very painful... slight swelling ...

This has occured twice in the past also. After a few days, the line diappears and pain subsides. But the problem re-occurs every few months...

can anyone guide me what it could be?

Login or register to post replies.

JoshF's picture
Replies 4
Last reply 9/3/2013 - 5:14pm
Replies by: JoshF, Tina D, MattF

It's been 2.5 years since diagnosis. To get to the point, I had follow appt this past Friday. All good! Well this nothing I was rubbing scar on face and when I "scrunched" it during a yawn I felt something odd. Needless to say I felt around but can't really feel anything unless I scrunch my face or put thumb on inside of my cheek in mouth and forefinger on scar. There it was a bump maybe the size of a pencil eraser. My heart sunk! I was just at oncologist! She felt nothing! I know everyone will say go get it checked...which of course I plan on doing right away.

I know it can be scar tissue and I have no idea how long it's been there. I know it can be recurrence. Blood work was fine...LDH was normal and thou thorough exam just days ago by a melanoma specialist! I'm guessing its 50/50 chance of recurrence and knowing nature of this cancer I'm feeling pessimistic. Anyone have any experience or knowledge on this? Would it be local recurrence? Would I need another SNLB? Anxiety is killing me!

Josh

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

Login or register to post replies.

MattF's picture
Replies 2
Last reply 9/2/2013 - 10:42pm
Replies by: MattF, Janner

So I'm trying to find the answer and i'm not sure there is just one or if there may actually be seeral depending on who you ask. please let me know if you have a thought or a fact etc.

I was diagnosed through FNA biopsy 2 weeks ago Metastatic melanoma Salivary Gland...old primary was 11 months ago at base of ear.

1. Is Local Recurrence considered within 2 cm of original primary surgical scar...AND more importantly is it considered only CUTANEOUS? or could it be a lump/mass under the skin?

2. Is in transit considered outside 2 cm but before nodal basin...AND more importantly is it considered only CUTANEOUS? or can it be lump/mass under the skin?

I guess im trying to analyze what I have going on. I have actually seen some sites that call in transit and local Recurrence as CUTANEOUS and anything under the skin as just metastatic. The doctors called it a mass within the salivary gland that is positive for metastatic melanoma. But the actual lump is about 2.5 cm from my original primary...and i'm not sure if there are nodes involved also...really just wondering where i stand 

Login or register to post replies.

Pink's picture
Replies 0

I posted before that I was getting ILP but was wrong. iLI at Moffitt on Sept 5th

Login or register to post replies.

mark1101's picture
Replies 7
Last reply 9/4/2013 - 12:00pm

I have been taking Prednisone more or less constantly since April at doses varying from 0 - 80 mg daily.  The purpose of this was to mitigate a rash I was getting as a side effect of my ipi.  I tapered down to zero 9 nine days ago as I had a maintenance IV of ipi 7 days ago and the two drugs don't work well together.  I have had no rash (or any other sude effect) since this last dose of ipi and have not resumed Prednisone.  The day after my treatment I began suffering from no appetite at all and being unbelieveably tired all of the time.  My Onc indicates this is most likely a backlash from the Prednisone and will take some time to settle down.  Has any one els had this particular experience with Prednisone?  How long did it take for these effects to subside for you?

Login or register to post replies.

mclaus23's picture
Replies 5
Last reply 9/4/2013 - 1:49am

Hi again :)
My dad is wondering the ages of the people and size of tumors on Zelboraf, who it worked for and for how long?

Thanks in advance for your replies!
I'm trying to keep him with PMA!!!

M

Login or register to post replies.

Replies by: JerryfromFauq, Anonymous

Dr Weber video discusses IPI, IL-2,-1, BRAF, PD-1 and , other investigational treatments.  From about the 10 to the 13 minute mark he goes into depth on IL-2. then IPI, and side effects.

www.youtube.com/watch?v=iza6-Ovkjxg

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

Kate Australia's picture
Replies 6
Last reply 9/5/2013 - 7:13am
Replies by: Tina D, Kim K, vivian, JerryfromFauq, Erinmay22, Anonymous

Hi,

After nine months of regular three-month check ups, my mum's doctor told her she no longer requires these appointments. To me it seems too early to stop, but I may be being an overprotective daughter. Please tell me if I am.   

Here's her story.

Approximately 12 months ago she had a nodular melanoma removed from the middle of her back. The nodular melanoma was more than 4mm thick (it was so thick due to being misdiagnosed as a sebaceous wart when she first went to get it checked out) and not ulcerated. Very soon after the melanoma diagnosis came through she had the surrounding tissue also removed. There was talk at this time of also performing a sentinel lymph node biopsy. However, due to the location of the melanoma (right in the middle of her back) the hospital decided not to do this as they said it was too hard to accurately predict the nearest lymph node and it could be possible that a number of nodes in different locations could all light up and if that happened they would have to biposy them all which we were told can be dangerous. Instead, a CT scan was done which came back all clear.  The removed tissue was also tested and came back all clear.  

For the following six months she had hospital appointments every three months where they physically examined her lymph nodes and found nothing concerning.

At her nine month appointment after having the melanoma removed she had a PET scan. 

The PET scan showed seven very tiny spots on her liver. As the spots were very very small, the doctors didn't seem concerned but due to her history of melanoma, they wanted to perform an ultrasound on her liver one month later to make sure nothing had grown/changed. She had the ultrasound and the spots were still tiny.

The doctor then told mum she no longer needed to have scans or check ups any more. 

It's been approximately three months since the ultrasound.

Does this timing seem right? Should they still be monitoring those liver spots? Or should she be still getting regular check ups or scans? 

Thanks

Login or register to post replies.

Pages