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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Ajwells's picture
Replies 6
Last reply 7/11/2016 - 2:56am
Replies by: MoiraM, Ajwells, jennunicorn

I am post op neck dissection 3 weeks tomorrow. I've always had a little bit of some body temp weirdness. I'm naturally warm blooded. I pretty much radiate heat. But since surgery, it has been terrible. I'm either sweating or I'm frozen. I wake up drenched in a cold sweat multiple times a night. It's disgusting. I feel like I always smell. In the morning it feels like I have the chills, but I don't have a fever. I feel like maybe some of this is normal since my system is probably in a bit of shock with all of those lymph nodes removed. But of course my mind goes directly to adrenal metistasis or something. It's been 6 weeks since my pet scan. Which was clear. So this is just post op things. But how do I get the fear out?!  I don't even know when my next scan is. I meet with my medical oncologist on Thursday for the first time. I will mention it to her I suppose. 

I just had to get my irrational fear out there. Melanoma and anxiety with catastrophic thoughts don't mix. More Benzos please! 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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gigembritt's picture
Replies 4
Last reply 7/9/2016 - 10:24pm
Replies by: gigembritt, Janner

Anyone who has dealt with MD Anderson.... I haven't even had my first apt and I'm already getting apt info from the lymphoma center too?? Is this standard? I haven't even gotten blood work done. Just one little shave biopsy.  Would this be in regards to SNB if they decide to do one?  Just seems odd to scare me like that! 

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CharmaineD's picture
Replies 3
Last reply 7/9/2016 - 10:01pm
Replies by: susanspotless, CharmaineD, Anonymous

I know for many people on here they have travelled a long road with Melanoma but I am just sharing this for others like me to whom this is all brand new and who also have a decision to make. Being told you have a suspicious mole is very scary. My dermatologist decided to not excise but to monitor again in three months, I just did not feel comfortable with this and for two months it caused me anxiety. A week ago I decided to take control of things and requested it to be removed. Removal date set for a months time but I got lucky and on Tuesday got the call from the surgeon they had a cancellation and did I want to come in. Of course I did. It was a big mole and with the margins I was set to lose a relative chunk of skin on my back. However it was really painless and was over in half an hour. Small needle pricks and felt a bit of pulling and tugging, but absolutely no pain. Today it is a bit uncomfortable lifting or stretching with my arm because of where the stitches are situated but it is really not a big deal. Just glad it is done. A bit nervous waiting for the results but I feel I have taken control of the situation. I amnot a fan of unnecessary surgery but the watch and wait approach was not working for me. I know everyones experience is not the same but if excision worries you at all, my experience is it was really easy and painless. 

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Patrisa's picture
Replies 4
Last reply 7/9/2016 - 10:33am

Hey guys,

do you think it is likely that you get an almost complete response on keytruda, just some minor focal activity in sub q met and total disolvment od lung mets and pet/ct that showed no new mets...in just 3 months! And after only a month a potential new met? Can keytruda work so wonderfully on old mets but still a new one can appear in such a short period of time?

i know everything goes with this beast, but can't really understand that you can have a complete response on one hand, and some new stuff on the other...

all in a month?

My fathers next pet/ct is in august, but i can't wait that long to know... What scared me was a marker which in higher than normal (s100)...

it could be nothing, but i'm worried...

another q, if something new poped up, does that mean that keytruda failed? Cause it didn't, it worked wonders since Jan this year...

thank you...

Patrisa

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Ajwells's picture
Replies 8
Last reply 7/9/2016 - 3:04am

I know everyone reacts differently, and different therapies act differently. I am just afraid the environment of my job will be extremely difficult if I'm not well.  I am a beauty advisor for a cosmetics company in a retail department store. I know it sounds easy. But I'm on my feet for 8 hours, and I have to sell. On my toes, fast talker, happy and excited. I'm already nervous about going back to work next week until I start therapy. I still have facial paralysis in my left bottom lip and of course the gigantic scar going down my neck from my neck dissection two weeks ago.  My job is about beauty and smiles and it's also cutthroat because we work around our competitors and we work on commission. I'm used to being so good at my job. One of the best in my region. 

Im afraid of being under par.  Or even par for that matter.  These scars and side effects are really bugging my self confidence. 

Sorry I guess this ended up being more about feelings and fear than cancer. 

But realisticslly. Most people are able to live their lives and do their jobs while doing immunotherapy, right? 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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Tomorrow is my moms first day of trail for Epacadostat and Opdivo (nivolumab).. We are nervous.. yet can I even use the word.. excited.. It has been 5-6 months since we found out about the stage 4.. and other then Gamma Knife a few weeks ago this will be the first treatment that addresses those invisible but seen on scans mets... Going from the information and diagnosing and planning stage to actual treatment....

Any suggestions for infusions.. what helped deal with nerves or helped with the after affects.. 

Also curious if anyone else on here has experience with epacadostat?

Best to all!! 

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Maria C's picture
Replies 1
Last reply 7/8/2016 - 10:43pm
Replies by: Patina

Hi there - 

Has anyone had an experience where their SRS treatment did not succesfully "zap" the brain met out? It appears I have had 3 out of 7 brain mets that did not enter death stages, and will soon be cyberknifed after first being gamma knifed months ago....

Has anyone else experienced brain met radiation in the same spot...?

The good news is that it was not 2 new brain mets (totaling 9), but 2 old ones that never "died" that have been showing up in my latest MRIs.

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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CHD's picture
Replies 2
Last reply 7/8/2016 - 6:57pm
Replies by: CHD, Kim K

So PET CT is clear except it lit up around one ovary and slightly into the vaginal area.  PA says this is "normal," though.  I don't get athe official report of results until my followup visit next week, but I am wondering why it would be normal for an ovary to light up on one side?  This is my third PET CT in 3 years and this did not happen on any of the others, though last year there was some kind of  "soft tissue anomaly" on the left, as well as a benign-looking left ovarian cyst on a regular CT, which did NOT light up on the followup PET. 

As someone with a history of vulvar melanoma, the area just seems a little close for comfort, but I am all for thinking it's normal!!  I am also a little confused.  And of course it is going to bug me until my visit next week!  Any ideas?  Do certain areas normally "light up" more than others?  Are ovaries one of them?  Do we know why? 

Cheri

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keepthefaith11's picture
Replies 7
Last reply 7/8/2016 - 1:45pm

I just got off the phone with his doctor in Europe. She said he has 13 brain Mets that they could see on the MRI. They are between 2 millimeters and 13 millimeters. She started talking about whole brain radiation therapy. Apparently they don't do gamma knife at that hospital. There is however a hospital in the country that does it, but usually for no more than three mets.
I kept pushing and she agreed to send his scans down there for a second opinion and see if they could do it for him. Not sure this is going to work out. It is so frustrating when you do not have options.

They are doing a PET CT scan to see if there is any additional spread. His blood work was completely normal. I am assuming they checked the marker for cancer in his blood. Forgot to ask about that.

She wants to start whole brain radiation on Monday, but she said she would call me tomorrow when she finds out about the second opinion on gamma knife.

Does anybody know if whole brain radiation would get rid of tumors this size? And can they then do gamma knife on any remaining tumors?

She said they usually start targeted therapy or systemic therapy 2 weeks after radiation. Would that still give you the abscopal effect?

Thank you for your help everyone!!

Annie

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Replies by: Anonymous, Bradley75, Janner, desertsun, Fen, Andrew1725, Prd10, mjanssentx

First off please don't question why my husband and I have chosen interferon, we believe that this is the best choice for us as this time, he is stage 3b, and in the off chance that this beast comes back we want another option of treatment such as yervoy of opdivo.  

I lost my 1st husband to this ugly disease after a long 14 yr battle so I know how this disease rears it's ugly head over and over and yes I know how advanced the treatments have come in the 7 years since he has been gone.

Now on to my question...as my 1st husband wasn't able to tolerate interferon.....so this is all new to me.  These treatments are taking a horrible toll on his memory, he already had problems with his short term memory to begin with as he is diabetic, but now it is horrible.  I swear sometimes in the evening he will check our back door 15 times because he doesn't remember locking it.  Just yesterday he tried making himself breakfast and left the gas stove burner on for like 3 hours because he forgot to turn it off and went and laid down.  I could go on and on for days.  I have set timers up to remind him of his med schedule because I have had to find work, and he can't work even if he had a job to return to.

Can anyone tell me how much memory returns HONESTLY, I've already been to hell and back once, I'm prepared to do it again, but I just want the truth this time, so I can be prepared.  

I completely understand if nobody here has any answers as you have all been able to move on to bigger and better treatments, I'm just sort of grasping at straws, most of the Dr want to sort of treat me a bit on the gentler side due to my past, and I understand that, we have one that is a real straight shooter but is out of the office for a few more weeks.  I'm just desperately looking for some answers.  My husband is only 50 years old, and I'm 44, not quite what I had planned for my 2nd marriage, but it is what it is I suppose.

Jen Spitz

Care giver 1st time around 15 yrs

2nd time around 6mths and chugging along

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Anonymous's picture
Anonymous
Replies 45
Last reply 7/8/2016 - 11:37am

Has anyone else here been diagnosed mucosal?

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Lee Parlier's picture
Replies 3
Last reply 7/8/2016 - 9:24am
Replies by: Lee Parlier, Linny

I am a first time poster but have read a lot of experiences with people fighting melanoma. Here is a little information about my melanoma journey.

SEPT. 2015: Diagnosed after melanoma 2B was removed from my left hip.

FEBRUARY 2016: Pet scan showed melanoma in the left groin area. Near the tumor site.

March 2016: Lymph node removal in groin which showed melanoma in 5 of the 8 nodes removed. Stage 3b

May 2016: Began yervoy (10 mg) every 3 weeks. I have had minor side effects but mainly fatigue and a little nausea. 3RD dose is due tomorrow with a pet scan next week.

Question:

After the second dose of yervoy I had around 20 subcutaneous spots pop up on my trunk mainly. They have a bluish look and about the size of a pencil eraser.They all popped up within a 24 hour period after my second dose. I have had opinions mostly that this is ipi doing its thing. I have also heard that it could be in transit melanoma. I am waiting on a biopsy result but was wondering, has anyone experienced this and what are they?

 

 

 

Lee Parlier

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CharmaineD's picture
Replies 8
Last reply 7/8/2016 - 9:20am

Good day to all, found this forum while searching for information. So glad I did. The entire internet is filled with doom and gloom about Melanoma and this is the first place I have found positive stories etc. I have not been diagnosed so obviously I am in a diffferent place than many on here. But I am desperate for more information about what I am facing as my doctor has been very vague. I have been in serious health situations in my life before but none has scared me more than the prospect of being diagnosed with Melanoma (have no idea why but I am freaking out a little). Usually I am a very tough person.

I have had a large (over 1cm) flat brown mole (with a much darker brown edge on one sideonly  on my back for at least the past 7 years that I positively know of. I actually have a number of moles on my back but this one is biggest. It could have been there much longer but it is not really a spot I can see without contorting myself like a pretzel.  The first time I noticed it I asked me GP to check it and he said I should not worry as it was flat and I should only worry if it elevates. Having no reason to doubt his opinion I never thought of it again. My eldest child started medschool 5 years ago and did her dermatology rotation this year. She asked me to please let a dermatologist check it out. I was very suprised when the dermatologist told me she thought it looked suspicious and took dermoscope photos of it. She said I must come back in three months and if it has changed or grown we remove it. So suddenly my  "harmless" mole went from ok to suspicious. I asked her what should I expect and she was vague.

When I got home I started researching on the internet (frightening thing) The more I read the more worried I became so I called her and said I wanted it removed rather (I am sure she thinks I am paranoid as her words were, I am happy to wait for three months but if it is causing you anxiety lets remove it). 

So looking for a honest opinion, am I letting my anxiety run away with me here? Surgeon said it was going to leave a relatively big scar but thats ok. So pardon my paranoia but since this mole has been around for years I am very worried that it had plenty of time to do harm if indeed it is malignant so it makes sense to act faster?

I feel like I am overreacting when I read all the brave posts on here but I really need some honest information about what I should do. Thanks for reading and I appreciate any feedback

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Chance16's picture
Replies 33
Last reply 7/8/2016 - 12:34am

Good morning - Recently diagnosed and I am stage 3c WLE and sentinel node biopsy done (node positive) PET/CT scans negative. They are talking about doing a CLND; which I don't want to do. Reasons: #1 complications (if the nodes come back negative I would have to live with the side effects of the surgery) #2 there are probably cells already circulating in my body #3 some literature say it doesn't improve outcomes.  I'm going to Moffitt Cancer Center in Tampa for second opinion. Has anyone else decided not to do it? Any feelings, ideas, suggestions?? I would appreciate any and all feedback. Thank you

Patti

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