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 4
Last reply 7/5/2016 - 10:22am
Replies by: MoiraM, Maureen038, Casitas1

Does anyone know if tooth decay (dental caries) is a known adverse effect of immunotherapy, specifically Keytruda and/or Ipi?

Thank you!

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Peter A's picture
Replies 1
Last reply 7/4/2016 - 8:24am
Replies by: Bubbles

I received a liver in February 23, 2016 and have just had a growth removed from my nose on June 16, 2016. The biopsy report diagnosed a melanoma that was 1.4x.9x.6 cm under the skin. This was to be a scar tissue removal where a mohs procedure was done to remove a squamus cell growth on my nose 2 years ago. This was a total surprise as I have been through so many scans and tests to qualify and receive a liver transplant. The Dermatologist said it is a very rare melanoma and He thinks I will need to have a large portion of my nose removed and rebuilt to remove the cancer. As you can imagine I am on high doses of anti rejection drugs and my immune system is very depressed and fighting this cancer will be a challenge.

Does anyone have any insight on this topic ?

I do have appointments set up with a meanoma center in San Francisco to consult with a surgeon and melanoma specialist.

Thanks for any responce.


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Anonymous's picture
Anonymous
Replies 2
Last reply 7/3/2016 - 4:47pm
Replies by: Cynthia C, Janner

I want to apologize in advance my concern is no where near as important as most of the posts on this forum but I did not know where to go.

I recenty had to switch my general practicioner because my other doctor retired.  I was at my yearly visit with the new doctor and he had me strip down to nothing and examin my moles.   In 15 years with my previous doctor this has never happened.   I am 34 years old and in pretty good health.   Most of my moles look very similar light to darkish brown small spots... some have weird shapes but they have never changed.   I do have a good deal of moles but blame that on being italian and nothing has ever come from them.

I have a few moles that he freaked me out over.  One is on my left butt cheek ( Sorry).  It looks like a dark brown circle and I have noticed it for years when I get out of the shower.  I never noticed it changing its one color but it is an odd shape... it is about 3mm-4mm,    The other moles were on the tops of my feet.   I have about 5 normal looking moles on the top of my feet... again nothing has ever changed.

 

This doctor said that having any moles on areas where the sun doesnt shine is not a good thing and I need to be checked by a dermatologist immediatly.    I asked if my moles looked like melanoma and he said no.. but you should not have moles in these locations and this concerns me.    So now over the 4th of July holiday I keep thinking that I have had these moles forever and my anxiety is taking over. 

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keepthefaith11's picture
Replies 11
Last reply 7/3/2016 - 10:15pm
Replies by: keepthefaith11, kylez, Bubbles, jennunicorn, Anonymous

We are 6 months out from my dad's stage 3C diagnosis. The full body pet scan back in December showed no cancer. Except in the lymph nodes which were taken out. He also had a CT scan in April, completely clean.
They are now back in Europe for the summer and last night my dad had an epileptic type incident. (He does not have epilepsy. He was rushed to the ER and they did a CT scan of the brain. The doctor says he sees a couple of "shadows" in the brain but can't be sure what it is. They are doing an MRI hopefully tomorrow.

Obviously with the recent melanoma diagnosis one has to assume that these are mets.

I am hopefully wishing this is something completely unrelated. But I realized it's unlikely. What do we do now? If these are in fact mets, what is standard procedure? Celeste, I have read a lot of your blogs and they have been very helpful. It seems gamma knife followed by Opdivo or Keytruda is the way to go. But what about surgery? How big do the tumors need to be for that to be an option? This is all new to me and I am quickly trying to read up on it. We thought we might have beat the Beast. I want to make sure I am ready to talk to the doctors in Europe if it comes to that. I also read that gamma knife, immunotherapy followed by the BRAF Inhibitors is a great option. His cancer is BRAF positive.

I am completely devastated right now..:(

Thank you everyone,

Annica

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/2/2016 - 4:02pm
Replies by: jennunicorn, Anonymous, 2smallpeas

Hi folks! I want to preface this by saying I do have an appt. with a Dermatologist for mid August.

I have one mole above my bikini line that has gradually changed in the last few years. It started off a light tan color and fairly small to now be about .25". Not only has it grown, but little dark brown spots are popping up on the mole. It resembles a chocolate chip cookie. 

Admittedly, the only reason I made the appt. was to appease my husband. Because this spot stands out from the rest and my Father being a melanoma survivor, I promised to make and keep the appt. I'm more curious than concerned at this point.

While I know that you can't diagnose cancer simply by looking, does this mole look to be concerning? 

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CourtneyDMiller's picture
Replies 3
Last reply 7/2/2016 - 12:37pm
Replies by: Anonymous, CourtneyDMiller, DragonLadyRed

Hello,

Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

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CourtneyDMiller's picture
Replies 2
Last reply 7/3/2016 - 4:59pm
Replies by: michaelinsocal, Mark82

Hello,

Ever since I heard my diagnosis had the word melanoma in it, i havent been able to resume normal life. I feel so guilty because i should be extremely happy it the was cut it out and you are done kind, but i cant go a hour without thinking about it. I'm constantly checking myself for changes in moles/freckles and feeling for lymph nodes. I do have 3 papable nodes in my groin that i would guess are under a cm - I just had an aytypical mole cut off my buttock and leg, so I'm assuming that is why those are able to be felt. I also can feel one on the right side of my neck and two on the right. They are small as well, but they continue to freak me out. Two days ago i have also noticed that a mole on my arm has began to have a burning sensation. I am just constantly worries about everything. I want more moles/freckles taken off, but the doctors tell me that they are fine, and i should be done being cut on for a while. I had a full body check by my doctor as soon as we found out, and have already had all suspicious ones removed that she picked out. I have an appointment with a well trusted and liked dermatologist in my aera for a full body check again on 7/19. The thing im most concerned about is my lymph nodes.. what do you all think?

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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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Replies by: desertsun, beneficii, Janner

I've had some soreness when lying down lately, and I was able to localize it to these 3 areas (circled in green):

http://imgur.com/cik5hug

http://imgur.com/ST4mApf

The pictures are taken from different angles.

The moles in question do look kinda strange. I have a doctor's appointment on 7/21 and I will get it checked out then.

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sallyandree's picture
Replies 4
Last reply 7/2/2016 - 2:30pm

Hello,

Do you know of anyone who has Stage IV melanoma which traveled to their stomach? My significant other's melanoma was removed 6 or 7 years ago, but we found out in March that the stomach problems and severe anemia he had in late February were due to the melanoma traveling to his stomach. He has been taking the Opdivo and Yervoy regimen (soon will be starting just taking Opdivo every two weeks) and we are hoping for the best. But it still is a brutal regimen! I understand that melanoma traveling to the stomach is rare.

Thank you,

Sally

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Happy_girl's picture
Replies 2
Last reply 7/4/2016 - 10:29am
Replies by: Linny, jennunicorn

I just wanted to share that I was able to talk with my doc and she is very confident that the spot on my liver is a cyst.  Just wanted to share the good news! Thanks for listening while I had my freak out moments! 

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Replies by: Bubbles, JoshF, MoiraM

I responded to Yervoy/Ipi. It shrank my tumours. It also took out my anterior pituitary gland and the damage is permanent.

When I go to see my endocrinologist and my oncologist, they both say that they are anticipating lots more cases of people with damage to their glands as a side effect of immunotherappy for cancer. They see me as as the first of many.

I imagine what I would feel like if my anterior pituitary gland had packed up but the Yervoy/Ipi had not worked. I have said that to them and they both hint that only people whose T cells had been activated by the Yervoy/Ipi would experience the damage to their anterior pituitary gland.

If that is so, I feel a lot better about all those people in the US who have NEAD and are 'doing' Yervory/Ipi because it has now been approved as adjuvant therpy.

Does anyone else know of evidence to support the hypothesis that the autoimmune side effects of Yervey/Ipi only happen in people whose melanoma cells are also being attacked?

Stage 3C Ipi/Yervoy responder with phobia of doctors/hospitals and pituitary dysfunction caused by Ipi/Yervoy

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sleepyt23's picture
Replies 6
Last reply 7/2/2016 - 12:48pm

Hi all. I was diagnosed with Stage 3b in November 2014 at the age of 31. My primary melanoma was just to the right of my spine with a depth of 1.6-mm and ulceration. Two sentinal nodes under my right arm were microscopically positive. I had the rest of those nodes removed and all came back negative.

At the time, the best treatment around, to my understanding, was Interferon. We talked about beginning treatment, but my wife was 3 months pregnant and we didn't really see too much benefit when compared with the side effects. So we opted out of the Interferon and went into a wait and monitor mode.

I've had numerous moles removed and have had two scans. So far everything has come back negative. I went to see my surgical oncologist about a month ago and he was rather adamant that I talk to my medical oncologist about Yervoy. He said that I'm considered high risk and I would likely tolerate the Yervoy treatment with minimal side effects. 

My wife and I met with the medical oncologist yesterday and we're running things through insurance to see how much I would be responsible for out-of-pocket. I hear that there may be co-pay assistance through the manufacturer to further reduce my expenses. There was also talk of having a port installed since I really only have one good arm as far as injections or IV's go. 

I'm curious how the port feels and what the procedure to have it implanted is like.

TMM

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youngann's picture
Replies 4
Last reply 7/3/2016 - 7:45am
Replies by: Anonymous, SABKLYN, youngann, jennunicorn

This question may be better answered by the long-termers here. If I were to start a fund-raiser to benefit Melanoma patients, which organisation would be the best one to donate the funds to?

Ann

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Bradley75's picture
Replies 2
Last reply 6/30/2016 - 8:31pm
Replies by: jennunicorn, Janner

I had my every three month PET/CT this week and the came up with something that I am not sure about.  It reads as: new 5x10 mm FDG avid nodule or lymph node in the perirenal fat inferior to the right kidney.  They go on to say SUV max 3.2.  This is concerning for possible metastasis. 

Their recommendation was to come back and have another scan in 6 to 8 weeks.  They want to see what changes happen and either remove it or call it reactive.  I have had lymph nodes light up the scan in the past year that have been determined to be reactive lymph nodes, so that would be nothing new for me.  There was one under my right arm that had a fine needle, ultrasound biopsy performed on it and it came back benign.  There has never been one near an organ, if that makes a difference  The kidney one can't be handled that way so the only way to know what's going on is to have it surgically removed.

The issue I am having is the waiting 6 to 8 weeks.  My onc gave reasons why we should wait, but it is hard to be at ease about waiting.  The thought of it getting worse while we sit and wait is not good for the soul.  My care team is Mayo in Rochester so I think trusting their opinion is a decent option, but I hate waiting.  Anyone have any input?

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