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 1
Last reply 5/26/2017 - 2:48pm
Replies by: jennunicorn

A 25 year old mother to a two year old, I never questioned my skin care when it came to the sun. 

I grew up in a remote town (an island) in Maryland and spent my summers on workboats with my father and had my share of sunburn and tanned skin. As I grew older, my skin tone continued to tan easily with minor sunburn here and there. I use sunscreen on my daughter religiously, but I opted for tanning oils for myself mostly. I also was an avid tanning bed user (3-4 days a week) for about 5 years. My mother is italian, so my complexion is on the medium side, but there are periods of time when I don't tan (indoor or out) that I am borderline pale. 

I have freckles here and there on my shoulders and chest, and I have two raised cherry freckles that have never been concerning to doctors. 

About 6 weeks ago, a new mole on the outside of my armpit close to my shoulder appeared. Small, and very black. I ignored it until about two weeks later. I noticed it was a tad bit bigger. I again let it go. 

Two weeks ago I found myself itching it, not often but when I did, it made a tingle sensation. The same week, I started having pain in my underarm like swollen, tender lymph nodes. I asked my husband, and he said I should get it looked at. I called the dermatologist, and they stated they had openings about 3 weeks later. When they asked what I wanted to be seen for and I explained, I was put on hold and was informed to come in first thing the next day. That scared me. I just went, and the dermatologist asked no questions about my history, just said new moles should be checked. He said he wasnt concerned, but wanted to shave it and send it to the pathology lab. He said most people with olive skin tones/dark hair and eyes do not get skin cancer, and since it was a new mole entirely, it was nothing to worry about.

Is this right? Everything seems to read new moles over 25 years old should be checked out. Does my complexion make me less of a target? Should there have been more conversation about my history with sun exposure? 

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/26/2017 - 12:56pm
Replies by: Anonymous

Hello everyone.

I have a question see if anyone has come across this. I was diagnosed in 2015 with 3 primary melenoma. Melenoma in situ and also stage 1a and 1b. I only had surgery as they said mine were under 1cm. Since then I have several basal cell removed but no melenoma. I went to the Er last week and had a high d dimer test so they had to give me a c.t scan of the chest everything came back fine, but now I am wondering if the d dimera has anything to do with all the skin cancer I have had. My doctor,said anything can raise it level. Any suggestion would be great. Should I get it retested? The reason i had the ct scan was right arm pain and chest discomfort which they didn't know why but because of elevated d dimera they had to do d dimer. Thanks everyone

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Christine.P's picture
Replies 7
Last reply 5/25/2017 - 10:59pm

I recently posted that I have 4 new tumors in my right leg, hip, and lower back and that I also just recently found out I am BRAF positive. I did 3 doses of ipi/nivo and have been on just nivo for almost a year. 

At my last appointment my doctor mentioned Tak/Mef, but now it seems she is pushing me to stay on nivo and postpone the targeted therapy. All I can get her to say when I ask why is that the progression is 
"slow" and Tak/Mek only stops progression for 10-11 months (in most people). 

I have 2 pressing questions/thoughts. 

1. While I know it's good that there is no progression to the lungs, etc. I am not understanding how 4 new tumors in 3 months (since the last PET scan) is "slow." Is that actually slow? 

2. Why isn't it better to do the targeted therapy now when the tumor burden is low than to wait until it spreads more? I don't understand that part. 

I have a nivo infusion tomorrow and will ask the nurse to make an appointment for me with my doctor so we can talk about this in person. (After our initial appt when she told me about the targeted therapy, I developed new questions and emailed her twice. Both times I got a one-sentence "answer." I know she is busy and generally just terrible at email, but this is important to me. I know she'll be better in person.)

So, what would you all do or recommend? Start Tak/Mef now or wait? I know you can't tell me what to do, but I guess I want to know if I'm wrong or unreasonable to think now would be better. 

It's so hard to know what to do. I hate this disease. 

Christine P. 

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Christine.P's picture
Replies 7
Last reply 5/25/2017 - 8:37pm

I realized after I posted my last message that I should have used a more specific subject line so that those with Taf/Mek knowledge and experience would see it better. Here is my original post. I am wondering about the timing of the targeted therapy - is it better now when I have a low tumor burden or is it OK to wait until there is more progression? Thank you for your feedback.

Original post:

I recently posted that I have 4 new tumors in my right leg, hip, and lower back and that I also just recently found out I am BRAF positive. I did 3 doses of ipi/nivo and have been on just nivo for almost a year.

At my last appointment my doctor mentioned Tak/Mef, but now it seems she is pushing me to stay on nivo and postpone the targeted therapy. All I can get her to say when I ask why is that the progression is
"slow" and Tak/Mek only stops progression for 10-11 months (in most people).

I have 2 pressing questions/thoughts.

1. While I know it's good that there is no progression to the lungs, etc. I am not understanding how 4 new tumors in 3 months (since the last PET scan) is "slow." Is that actually slow?

2. Why isn't it better to do the targeted therapy now when the tumor burden is low than to wait until it spreads more? I don't understand that part.

I have a nivo infusion tomorrow and will ask the nurse to make an appointment for me with my doctor so we can talk about this in person. (After our initial appt when she told me about the targeted therapy, I developed new questions and emailed her twice. Both times I got a one-sentence "answer." I know she is busy and generally just terrible at email, but this is important to me. I know she'll be better in person.)

So, what would you all do or recommend? Start Tak/Mef now or wait? I know you can't tell me what to do, but I guess I want to know if I'm wrong or unreasonable to think now would be better.

It's so hard to know what to do. I hate this disease. 

Christine P. 

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Anonymous's picture
Anonymous
Replies 0

Question for those folks that have been on or are currently on Targeted Therapies. Have any of you developed AFib while on these drugs?  

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lisa joy's picture
Replies 15
Last reply 5/24/2017 - 2:02pm
Replies by: lisa joy, Anonymous, raun cesar, Joycem, Ed Williams

Hi - 

I just returned from my three month check up with my dermatologist. She told me about a new test for melanoma patients called DecisonDx (by Castle Biosciences Inc.). 

She explained that they send off my melanoma tissue to this lab to determine my risk for melanoma coming back? 

Has anyone ever heard of this test? She explained it was new. I'm not sure how this would change my treatment plan? 

Just wanted to know if anyone has heard of it or if they recommend it. Thank you!

 

Lisa, Stage 1A (one year ago); .75mm melanoma, -- I had WLE and one node removed and biopsy; I also had brain MRI and full body PET/CT scan.  --- all negative. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/24/2017 - 12:52pm
Replies by: judyk, jyc, mary1233, Anonymous

I have nasosinus mucosal melanoma.  I had surgery and radiation and have continued to have endoscopic surgery each time the pet and MRI show some growth so far it has stayed in my sinus area.  I am reluctant to have immunotherapy since it is in such a small spot. I may be running out of option. Immunotherapy seems to be for patients with advanced in other areas. It seems to help then but the research doesn't show anyone with 5 year survival with no evidence of disease. Has anyone have a good result with ipi or yervoy.  I don't have any of the genome no kit or for skin the braf that makes immunotherapy work better. Anyone even have muscosal melanoma. I am so discouraged

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Ridingaroundwith27Jennifers's picture
Replies 6
Last reply 5/24/2017 - 12:31pm

Hi Everyone.

Has anyone had surgery to remove brain mets?  What was your experience like?  I had a fast growing met removed on March 24th which left me with loss of feeling in my right leg and foot.  The MRI at ten days post surgery showed regrowth.Since then I've started back on Nivolumab coupled with radiation.  At my follow up the brain surgeon mentioned that he feels if he hadn't removed the met I would have lost the use of my right leg and foot.  

I'm waiting for my next MRI to see if the radiation/nivo combo are working on the regrowth and if there are any new mets.  This met popped up while I was taking a break from the Ipi/Nivo combo treatment due to hepatitis.  Aside from the hepatitis the treatment had been working well and many tumors had shrunk.  I just had my 4th Nivo only infusion yesterday and aside from high TSH it looks like I'm tolerating the treatment well.  Abdominal tumors are getting smaller or not getting bigger but progress has slowed way down.  

My 5 year old has started asking me why I have a big bald spot and why I'm still sick.  She thinks I should be better already (it's been 7 months).  I told her the medicine made my hair fall out but she doesn't understand how that is possible.  

Thanks,

Jennifer

 

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sami210's picture
Replies 4
Last reply 5/24/2017 - 11:24am
Replies by: sami210, Bubbles, betsyl

Hi All, 

I am a long time lurker first time brave enough to post. I'm at stage 4 patient from the UK. I am BRAF positive. I was first diagnosed in 2009 due to a mole on my left arm. It was removed with clear margins. In 2013 I found a lump under my left arm which turned out to be melanoma stage 3b one node positive. Earlier this year after a routine CT scan they found Melanoma in two lymph nodes on my chest.

I began Immunotherapy on the 21st March. I was hospitalised after the first treatment due to high temperature and chest inflammation and a bad cough, steroids eventually sorted me out. After the third treatment I had Uveitis and treatment was discontinued. The Consultant ordered a CT scan the results shows one of the lymph nodes looked slightly larger, he thinks due to inflammation. Also one spot on my lung 2mm in size which they are unconcearned about as he thinks could be anything, but given my medical history I'm worried.  Also my thyroid is damaged. I've an appointment with a specialist about it next week. 

My Consultant had decided not to give me the next infusion of Ipi and move straight into the maintenance drug in the hope that I will respond. 

I have to small children 10 and 5 and I'm left devastated my today's news I had put all my hopes on this treatment working.

I suppose my question to you long term warriors is what would you do now?

Sam xxx  

 

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landlover's picture
Replies 4
Last reply 5/24/2017 - 6:00am

I have stage 4, mets to lungs.  Started Ipi/Nivo in December but only had one dose before my thyroid gland was inflammed and destroyed.  My team decided that I should go to just Nivo after that, but now after 5 nivo treatments I have colitis (lymphocytic colitis diagnosed by biopsies during a sigmoidoscopy).  They tried budesonide (steroid that is taken orally but only affects the gut- not absorded systemically) with me but it seemed to actually make symptoms worse (diarrhea, stomach upset).  I have been on treatment pause for 6 weeks.

I have had great response with my lung mets nearly completely gone already.  My doctor now thinks that I should just stop treatment and continue with surveillance - scans every 3 months with brain MRI annually.  

I would love to be done but I am nervous about stopping.  What are some experiences others have had - do your docs stop treatment when it seems the cancer is responding and the side effects are outweighing the benefit, or do they still treat and give more aggressive steroids?

Thanks for input!

Peggy

 

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Anonymous's picture
Replies 7
Last reply 5/24/2017 - 12:57am

Hi!

I found out on Thursday that 1 of my 3 moles biopsied came back as Melanoma In Situ. The other 2 came back as severly dysplastic and normal. I am still in shock and very scared, as I am married and have 4 young children. I am going in on Tuesday for a wide excision of the 2 that need it (and hopefully talking them into excising another large mole I am concerned about). 

I am wondering if there are any other mothers who are going through a melanoma journey? I feel like I am a ticking timebomb and am having a hard time not crying in front of the kids. I do not know anyone personally who is going through this, and it would be so comforting to hear from others in similar situations. 

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JaneD's picture
Replies 4
Last reply 5/23/2017 - 11:44am

Hey Everyone,

First, thanks to everyone who posts here.  It is so comforting to read everyone's experiences and has kept me sane for the first part of my treatment.  I had melanoma I guess 20 years ago.  Thats what the first pathologist siad.  After removing a large section of my leg the second pathologist said no it was spitz nevus.  The surgeon said sorry and I jumped for joy and never thought about it again.  20 years later my inguinal lymph node got big and hard fast.  Long story short I find out I have stage 4 melanoma with a few other smallish tumors throughout my body-crazy cause I felt normal.  Lucky to have started on ipi/nivo as soon as possible.  Combined with a special diet and a bunch of probiotics which are emerging as somehing that really helps the immunotherapy work better (I would be happy to share if anyone is interested). 

Just had my second infusion last week and ever since I have been struggling with a constant cycle of nausea, chills and fever that reaches 103F.  Tylenol gives me a few hours of relief but I am really struggling-messaged my doctor today-but it's saturday so I don't expect much until monday.  Just by reading these  message boards I know these flu like symptoms has happened with others too.  How long do I suffer through this and how do people feel when taking steriods?

I am feeling horrible but I am happy to feel this way beacuse I know my immune system is taking care of buisness. The lymph node in my leg was originally 2cm and it doubled in size and was super painful after the first infusion.  It then got much smaller and softer measureing under 2cm.  It has just gotten a little bigger and painful again as well as another lymph node in my neck.  At  first I was worried my cancer was growing like crazy but logically the growth and pain is more more likely immune cells getting into my tumor and killing the cancer cells.  When I get a fever I know my immune system just can't stop itself-the brakes are gone and the cancer cells are now a foreigner.  So I am keeping positive.

 

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baesill's picture
Replies 4
Last reply 5/23/2017 - 11:40am

1) Did you get tested for ldh levels before treatment? I consulted with some oncologists who cared about testing ldh, and others who didn't. 

2) For the ipi+nivo treatment, did you get a 6 week scan? Again i know some oncologists who do and some who do not. 

Does anyone have any insights the reasoning? 

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VIve's picture
Replies 5
Last reply 5/23/2017 - 9:59am
Replies by: Patrisa, VIve, messedmelanocytes, Anonymous

Probably everybody in my situation is wondering how did I get there. Metastatic melanoma cancer stage IV..Last year I barely had a flue and now I'm diagnosed with a termal illness where apparently is not much possible to do to save my life.

I had some small moles removed more than a year and a half ago but no problems afterwards. That's why I'm asking myself what could be the reason for the cancer to appear or develop at the beginning of this year? Last autumn I had a flue vaccination afterwards I felt somewhat sick. Before getting really ill I was going a little too much for me to the gym and therefor was taking lots of aspirin. But really otherwise nothing serious. Also other questions are bothering me like why aren't there preventive blood checks? And how is it possible from totally healthy (just with anemia) to be told one day when you don't feel well that there is nothing else to do before foing anything at all?! 

I thought the medicine is already advanced after decades of trials, money raised for research etc. And if there is an immunotherapy that is working why it has to cost 100 000 $ or anything like this - it should be affordable for everyone in the world...

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