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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Has anyone had the side effect of mental confusion? I am on the BRAF drugs and ended up in the hospital with mental confusion. I am now on half the dose and not having a problem but with the full dose big problem. I had trouble with simple questions and have a loss of memory of about half a day.

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(Always loved that line from 'Love Actually'!) I know you said you were taking a break from the forum for a bit and that is okay! But wanted you to know...should you take a peek...we are all still rooting for you! Love, c

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dawn dion's picture
Replies 3
Last reply 9/29/2016 - 5:38am
Replies by: dawn dion, Bubbles, debwray

Hello all. It's been quite some time since I have been on here. I have been taking Keytruda for 16 months and while it's obviously helping it has not getting rid of the "spot" that I have been battleing for almost 6 yrs. I have immense ongoing pain in my shoulder for a solud 9 months. Pain meds really don't touch it. After many conversations I am meeting with radiation oncologist to discuss the possibility of going at it from that direction. I am stable and I forget the term they used but Drs. feel comfortable with me coming off the drug and watching. I don't know how comfortable I am without sone sort if "defense". Anyone have any thoughts on this.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Can you have radiation therapy if a melanoma brain mets has started to bleed (causing an intracranial haemorrhagic stroke)?  Or should we wait until the scans show that the bleeding as slowed or stopped prior to starting radiation?  Just curious if the radiation would cause more bleeding and therefore swelling.

Thank you.

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Julie in SoCal's picture
Replies 5
Last reply 9/29/2016 - 8:29am

Greetings Friends,

im not sure why, but this post has been rejected 2 times now. Maybe the third time's a charm.

It's been a wild roller coaster of a ride the last few weeks.  I thought that the treatment ride was leveling out (though probably not coming to a full and complete stop).  I thought I was joining a clinical trial. Alas it's not to be.  So here kicking Mel as I know it-
 
I will not be joining either of the trials I had hoped and thought I qualified fo. My liver numbers are too high and so I don't qualify.  So the plan is to get to get my liver back in shape where it should be and then move on with Mel.
 
My Rock Star Doc and I also talked about having the lung tumor resected and being done with it for now.  But again, there's no hurry on the lung critter and I still have options, just not clinical trial options at this time.
 
So that's all the news.  Of course, like a good coaster with hidden ups and downs, the plan is liable to change -seemingly at any moment (usually after I just catch my breath).  I'll be keeping my hands and arms inside the car at all times, but full and complete stop is a long ways off.
 
Here's to the process!  Thanks for riding with me,
 
shalom,
 
Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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Julie in SoCal's picture
Replies 1
Last reply 9/28/2016 - 9:37pm
Replies by: debwray

I tried to post, but it said I was blocked. So am I blocked?

julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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snow white's picture
Replies 5
Last reply 9/28/2016 - 7:14pm

So I am getting more info in regards to Dads Gamma Knife procedure.  It will be happening the beginning of next week, will happen in 2 sessions.  The ONE thing that threw up  red flag for me was that they said he needs a 2 week "cooling off" period before starting any other therapies.  This is contrary to what I have been reading on this forum.

 

Any thoughts?  Articles to print?

Thank you in advance!

Jennifer

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Laura-lou's picture
Replies 9
Last reply 9/29/2016 - 4:53am

Hi all,

I had a biopsy on Monday, and by today, I have decided if I haven't heard anything, it's nothing.

My mole was 7mm with two colours - black and brown - and what looked like a mole, within a mole, within a mole.

Presented total A-E, but I've been using reading some moles do present like melanoma, and they're not.

A good chunk was taken, 9 stitches, or so.

What I'm interested in knowing, is how long did it take for you to be told it was melanoma. I'm thinking if I don't hear, defo by tomorrow, it's fine.

Thank you :)

Laura-lou

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Anonymous's picture
Anonymous
Replies 0

protease enzyme catabolizes proteins by hydrolysis of peptide bonds. Protease, from Aspergillus oryzae, contains both endoprotease and exopeptidase activities.

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Replies by: debwray

After several consultations, and in the interest of time, it looks like my mother will have her anal melanoma mass and inguinal lymph node resection removed by a three surgeon team at Kaiser.  These surgeons are part of the melanoma clinic in Riverside and believe in a more aggressive approach.  It also turns out that the Chief of Surgery at Riverside is currently battling melanoma as well and is therefore very supportive of melanoma treatment.

The surgeon examined her today and told us that since her mass is higher in the anal canal than previously thought, they can possibly remove it locally instead of performing the full APR resection.  Since APR doesn't significantly extend a patient's life, he said that it would be our decision.  However, this would leave behind a suspicious mesorectal lymph node.  She is frightened about the APR resection, and we don't want to put her through it if it significantly decreases her quality of life.  On the other hand, even a remote chance is something to consider.  Leaving a suspicious mesorectal lymph node behind is like a bomb waiting to explode. 

I wrote to Dr. Ribas at UCLA and he told me that in cases where the disease hasn't spread beyond the pelvis, aggressive resection is the way to go.  Has anyone faced a similar decision?

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Replies by: slh4448

Hi all,

This may be a long shot, but I am wondering if any of you can recommend a good dermatologist in the Kansas City area. 

I have not had melanoma, but have had several dysplstic moles removed and have an immediate family member who had melanoma.  I know my risk is high, so I am looking for a reliable dermatologist.

Do any of you have an experience with university hospitals? Pros/cons? 

Or any websites where I could find reviews? I am having trouble finding much information right now.

 

 

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snow white's picture
Replies 5
Last reply 9/29/2016 - 12:29am

Just wanted to update, after much discussion by 3 different docs. they have all agreed to the Gamma Knife!  My Dad is crying tears of relief that with so many diffrent opnions all have decided that this is a go.  Supposed to happen next week!  I am so glad I pushed Mom to ask about it!  Its going to happen at Hoag in Newport Beach.

:)

Jennifer

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Jenine's picture
Replies 2
Last reply 9/28/2016 - 9:01pm
Replies by: beans920, Bubbles

Hello all,

My husband was diagnosed with stage IIIC Melanoma two years ago.    He underwent immunotherapy including the maintenance program.    He had a CAT scan in June which showed nothing even though he felt pain in the center of his chest. Three months later he had a PET scan which resulted in a tumor in  his lymph node and sternum. Has anyone else experienced  something similar?   Maybe I'm naïve but I wasn't expecting a reoccurrence somehow.   So worried.  I'm trying to figure things out and be  strong for my husband and children.   Any input or suggestions for treatment you may have would be appreciated.

Wishing everyone strength and good health.

Thank you,

Jenine

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/28/2016 - 9:34pm
Replies by: debwray

I've been NED for 8 years. Still see derm every 4 months. My last visit I had 5 shaved (never doing that again). Never had it done before, it was my first visit with my new Derm lesson learned.
OK but three came back dysplastic, no surprise, a lot of mine are. But here is the thing, I asked for my path results to have for my records and noticed she had further testing done and two were follically positive for Melan-A.
Should I be waiting 3 months to have checked again? Or is this something to be a little more worried about?
Thanks for any advice!

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Hukill's picture
Replies 9
Last reply 9/29/2016 - 8:38am

Has anyone received a flu shot while on these drugs and did you have any problems from it? I see my dr on friday and can ask him then, I looked on line but did not find much and then some said you could some said you can't.

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