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
Anonymous
Replies 7
Last reply 9/29/2016 - 9:17pm

Hi my name is Alexis, i am 23 years old and was diagnosed with melanoma when i was 13. i've had numerous moles removed over the years that had traces of melanoma in each, and as the years progressed, so did the amount of melanoma found. when i was 18 i had a mole removed on my left breast. out of all the surgeries, it was one of the largest found melanoma underneath the mole being stage t2b. i was to get another surgery done on the same location to further get the rest of the tumor out. long story short, i got cold feet and never went back to finish surgery. five years later, which is presently, i have pains in my left breast each day, i notice lumps have started forming, and the shape has changed some. on top of that, i've been having a lot of issues with my skin in general, from iching raising moles to red rashy arms. can someone inform me of how long i have to get better on my own with natural remedies? or is it immediate to get it checked out again and possible surgery? please, any insight would be appriciated. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/29/2016 - 8:55pm
Replies by: cancersnewnormal

It's been a year since my husbands surgery.  Stage IV, 8mm tumor removed from his right arm.  Every day has been a gift.  Its been 4 months since we ended Opdivo treatments and although we are still dealing with side effects and after effects, the scans are clear.  I am so grateful for each day.  I read here daily on the success stories and the struggles.  They help me stay hopeful and grounded.  I dont say much on here in responses, but I do say prayers for you all and shed tears as well.  Everyone here has become family.  Thank you all. 

Bin

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stevecathy's picture
Replies 11
Last reply 9/29/2016 - 6:49pm

Short of story , my husband has been on mekinist and taflinar since Jan 16. Ct scan 5 weeks ago looked great , yesterday began feeling heaviness in left leg and arm . Primary Dr sent to er , he began to have seizures while at er . Mri done and confirmed brain lessions . There are 4 that were measured 1 to 2.5 cm . We are heartbroken, I have ask local oncologist if he can start keytruda. Advice , comments , anyone dealing with this issue , success, experience would all be appreciated. Please any suggestions. Thank you

Cathy Jewell

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Anonymous's picture
Anonymous
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,
 
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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Buddy0513's picture
Replies 7
Last reply 9/29/2016 - 2:18pm

Hello everyone,

I have been posting here about the whole treatment with my mom and we have a new update. I was wondering if anyone had someone similar or any insight to any of this...

She started her immunotherapy last week. That night was horrible, she was very sick, couldn't stand up, had a slight fever, diarrhea etc...this slightly continued into the next day when her ankle swelled up as well (we were checked out and it isn't a blood clot). About 24 hrs (close to this...) the tumor in her stomach basically looked as if it had doubled in size. She had many pains and found it hard to walk. About 3 days after treatment, the other side of her stomach where there was no tumor swelled up as well. She has been in/out of pain, both on and off high stength pain medicine to help her sleep. She has a lot of fatigue (which I am assuming is from the treatment last week)

After meeting with our Dr. He mentioned he wanted to do chemotherapy (Taxol and some other one that starts with a C) because we don't have more time to wait with the location of tumor (it's basically crushing her insides). We start chemo on Thursday. They went over side effects such as hair loss, fatigue etc...with the hope of shrinking the tumor faster since the Dr had mentioned we cant wait the 12 weeks for immunotherapy to respond.

Does anyone have any insight or experience on this? We keep feeling like we are getting worse and worse news at this point. Ever since she started the immunotherapy she has been sicker/in pain more than ever, even compared to the 1.5 months we were waiting to start all of these treatments.

I don't know much about chemotherapy since I didn't expect this to be thrown in with the mix. Any thoughts would be helpful. From what I have Googled Taxol doesn't sound very good, but again I don't fully understand what I am looking for.

I also want to say thank you to everyone who has been following/giving input for this case. Since it is mainly me taking care of her everything has been very hard and any help/prayers are appreciated.

Melissa

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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

Hello, 

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.

-Emily

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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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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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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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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 ?

Thanks,

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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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