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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Anonymous's picture
Replies 1
Last reply 9/29/2016 - 4:59pm
Replies by: cancersnewnormal

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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braunerk's picture
Replies 3
Last reply 9/29/2016 - 4:38pm
Replies by: Anonymous, braunerk, jamieth29

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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Julie in SoCal's picture
Replies 6
Last reply 9/29/2016 - 4:34pm

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,

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

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amylou2581's picture
Replies 9
Last reply 9/29/2016 - 10:34am
Replies by: Anonymous, Momofjake, amylou2581, Jubes, JuTMSY4, melj

Hi all, I'm new to this sithe and so far am finding it useful!

My husband, Mick, is considering stopping his pembro treatments due to severe pain and side effects...
Here is his history :
Original diagnosis of melanoma on his scalp, removed 4 times and received radiation (left a very nasty scar)
3 monthly checks with nothing showing for just over 1 year.
April 2014, melanoma discovered on his lungs and liver. Ipilimumab is started quickly. After 3rd treatment Mick's pituitary gland has swollen causing severe headaches and blurry vision. The pituitary gland no longer works so is put on cortisone tablets. 2 weeks later Mick gets colitis and losses 13 kilos. Is then put on massive doses of cortisone which cause major swelling.
Ipilimumab has finished and they put him on pembrolizumab. Soon after he has severe sinusitis for near 6 months. He gets avascular necrosis from long term steroid use and needs a core decompression to his hip.

But now he is in such severe pain through his bones, joints and muscles that he is struggling to walk, shower, sit, stand or do anything!
He currently takes hi doses of jurnista, lyrica, oxynorm and oxycontin but still the pain is unbearable.

Does anyone have any information on what would happen if he was too stop the pembro?

Sorry it's such a long post, but thank you for any responses.

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Esmith123's picture
Replies 3
Last reply 9/29/2016 - 9:11am
Replies by: miaka618, jennunicorn, Anonymous


It takes a long time to see a derm where I live so I have come to this forum to ask Melanoma questions. I have a tanning history so I am trying to keep myself informed about how to check my moles and what to look out for. I have had a spot in my armpit for about 5 years now. It is weird shaped and has not changed that I know of. It's under 3 mm but was wondering if it would have grown much since noticing it 5 years ago? I am trying to be as careful as I can be and get as much information as I can regarding melanoma. Did your melanoma conntinuously grow each month or year?

Thank you in advance.


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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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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.



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Marilynliz's picture
Replies 2
Last reply 9/28/2016 - 10:53pm
Replies by: Mom2Addy, jennunicorn

I am just starting my journey. I am looking at either Wake Forest of UNC. I would also appreciate any oncologist recommendations. I actually live closer to the Hickory/ Mooresville/Statesville area but would be willing to drive the distance for comprehensive care. Any recommendations would be appreciated. Thanks.


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knittingirl's picture
Replies 1
Last reply 9/28/2016 - 9:49pm
Replies by: maryb-z

I was NED since August after follwowing a ipi/nivo treatment at the end of the year 2015. But last week I felt a bump in y left forearm. I had a biopsy done. The pathologist thinks it is a schwannoma ( benign tumor of nerve) but my dermatologist wants to review the specimen with other doctors as it could be a recurrence of melanoma. I have to wait ....

Anyone has gone through this kind of experience ?


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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?


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

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Anonymous's picture
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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beans920's picture
Replies 3
Last reply 9/28/2016 - 8:47pm
Replies by: beans920, Polymath, Fen

Hello to everyone,  I have been a poster in the past  but have not had much to say as I awaited my quarterly scans.

Finally had my Pet scan, MRI and blood work on Wed.  I have had 2 wks. of radiation  and was started on Pembro now receiving my 6th dose.  Blood work was all in normal range. Full  Pet scan only showed the tumor on my sternum which has shrunk by 60%.  I figured it was down as I couldn't feel it anymore.  I did have a speck  show on the MRI on my left front brain area.  Dr. not sure if its new as I have not had MRI before always full body Pet scan.  Pet scan showed nothing active in brain area.  Will repeat MRI in six weeks during my 8th dose of Pembro.  No side effects yet, feeling good.  Prayers and Best wishes to everyone out there.   Beans

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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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Anonymous's picture
Replies 4
Last reply 9/28/2016 - 12:55pm
Replies by: Anonymous, Patina, Bubbles, Ed Williams

Hey guys,

my subject is self explanatory, so please, does anyone know?

thanks in advance!

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Anonymous's picture
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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