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 2
Last reply 1/16/2018 - 12:46pm

Happened across a Canadian Melanoma site called, "Save Your Skin" started by a woman who was diagnosed at Stage IV in 2003. 

One thing I found interesting is this series of patient stories some fairly new and others long term survivors in their pictures and words ("Melanoma through my Lens").  Reminded me of how I felt while in the thick of the fight and I felt it might be inspirational to others on this board:

https://saveyourskin.ca/melanoma-through-my-lens/ 

Luke 1:37

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MichelleRHG's picture
Replies 2
Last reply 1/16/2018 - 10:32am

Hi, I just had 2 small, moveable subQ masses excised from the back of my hand.The dermatologist said she saw no pigment, which was probably a good sign. They were white, just like the underlying skin. She also said they were not as hard as she initially thought and were very easy to excise. They came out as little round white balls, from what I could see in the specimen jar. Has anybody actually looked at their subQ melanoma when its been taken out? I know the pathologist will give the final word but does this description sound hopeful or not? Worried, of course. Stage 3B, primary on thigh in 2009, Mets to groin and pelvic nodes in 2016. Thanks in advance for any insight.

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Bradley75's picture
Replies 7
Last reply 1/16/2018 - 9:59am

Hi everyone,

I had my first PET scan and MRI since my surgery in late October of this year.  The scans got moved up a few weeks because of two suspicious lumps I found on the back of my head.  After scans and a ultrasound guided needle biopsy, the lumps are not melanoma.  They are reactive lymph nodes.  I have had those a few times over the years and each time they cause more anxiety than they should. 

My PET shows no evidence of disease anywhere in my body.  I never thought I would be able to say that again.  The plan is to continue Keytruda every three weeks and re-scan in late March.  It has been a wild ride.  Nice to start the new year with great news.

Brad

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jjk17's picture
Replies 6
Last reply 1/16/2018 - 9:12am

The past 3 months have been an emotional roller coaster to say the least. After having a plan in tack, I was supposed to start tomorrow on my clinical trial, Nivo/Ipi. Got the word today from my Oncologist at Mayo Clinic that the drug company that had my tissue, needed more, due to the fact there were dead cells. There were dead cells, because my tissue samples sat in their lab over the holidays with no-one there testing them. After a long talk with my Oncologist we came up with Plan B. Being treated with Nivo every 2 weeks. I am very stressed to say the least. Looking for positive thoughts on this. Maybe this is all happening for a reason. I just needed to vent! Thanks in advance:(

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CPM0720's picture
Replies 4
Last reply 1/16/2018 - 8:21am

First of all I want to thank those who posted on my last post. My husband has Stage IV melanoma and was on Opdivo/Yervoy. He showed progression and spreading after 12 weeks so he was moved to the Taf/Mek combo. 

We were not sure about everything at first but after reading the CT scan and more discussions with his doctor, we felt this was the correct next step.

with that said, my husband has been on Tafinlar for  about 3 weeks and Mekinist for 2 1/2 (the delay was due to Christmas and the dr wanting him to not have too many side effects for the holiday.) 

He woke up today with what he calls “hazy” vision. His eyes are also red. We called the dr and she wants to hold the meds for a few days until he can see an eye doctor and she is being overly cautious (her words) and scheduling a Brain MRI. (He has not had brain Mets so far.)

i have read a little online and it seems that it is more than likely something that can be treated with possibly steroid drops and maybe lower doses of the meds but wanted to see if anyone had personal experience. It clearly scared and worried us as this combo seems to be really working and we would be super disappointed if he had to go off it completely.. any reply is appreciated 

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ThinkingPositive's picture
Replies 1
Last reply 1/15/2018 - 7:10pm
Replies by: Janner

Does anyone have stories to tell about lentigo melanoma? My doctors told me my risks are low for recurrance but I still need to be  vigilant with every 3 month skin checks. I don't have many moles but lots of freckles and the age spots associated with sun damage on my face, hands  and back (I am 61). The research does not answer the question of am I more at risk for the other forms of melanoma. 

Was lentigo maligna melanoma IIA on nose. WLE 10/30/17and graft 11/10/17. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2018 - 5:59pm
Replies by: lep, Janner, Mckown5254

So I currently do not have Melanoma and never have. I am 18 years old and I am looking for some advice on whether I need to get my mole checked my a doctor, and i figured what better place to ask for an opinion? I have had this mole on my upper arm since I was a toddler. It has never caused any problems, and due to its size (1.2cm) my local doctor told me, when I was  about 10 years old, that I would probably have to get it removed for precautions later in life. Well recently I have noticed the edges blurring a little bit, and it is slightly changing shape (it used to be pretty much a perfect circle). It also has a couple of long black hairs growing out of the center which were never there. It is pale brown in colour and the colour seems pretty even overall.My mother said that there's no difference, but I can see it and have a gut feeling that it's changing. I have very pale skin and although I am very rarely in the sun I have about 50 moles covering my body. I may just be over reacting but I can't get it off my mind! Thank you :)

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MelanomaMike's picture
Replies 4
Last reply 1/14/2018 - 10:37pm
Replies by: BrianP, adrianc, lep

Hi Family, sorry its been awhile since ive written but, to give ya the latest im feeling pretrty good lately for awhile there i had VERY low energy and didnt do crap all day and this started actually after my 2nd dose {Pembro}..i was gettin scared like, is this how its gunna be? then i did my 3rd dose & within a week it was like a snap of the finger! nite & day!...iv been on disibility for awhile & its time to go back to work, i go for my 4th good ol' bag of Warrior Pembrolizumab on the 24th plus to see my oncologist, im defently bringing up work release, keeping busy will help. Other then that im feeling ok, my apetite kinda sucks, but i do eat everyday and have invested in Protien mix, apples, yogurt, milk see to make a great elixur.Ive lost 20lbs in the past 3 months due to this lung tumor buisiness {Melanoma}, as long as i dont keep going down its fine with me! i needed some weight off lol...Take care ya guys, Keep on Fightin On!....Mike

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lkb's picture
Replies 13
Last reply 1/14/2018 - 10:18pm
Replies by: Anonymous, ed williams, Bubbles, Tracyyy

Many among us might find this discussion of interest.

http://www.nejm.org/doi/full/10.1056/NEJMclde1712449?query=featured_home...

Primary scalp lesion excised in October 2017; SLNB removed and revealed two positive nodes. Stage IIIA.

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didntseethatcoming's picture
Replies 4
Last reply 1/14/2018 - 5:22pm

First, let me preface this with: I know this is a sort of ridiculous question. I know there are much more pressing questions on this board. But as this is all brand-new to me, I wasn't sure whom else to ask. So..

I've got wide excision surgery coming up in a couple weeks. One on top of my foot, the other on the outside (the very outside) of my ear. I've got a consultation with the plastic surgeon doing the closing-up part of it, and from what the onc-surg said, the plastic surgeon does this whole complicated thing. Now, I asked the onc-surg if he could just close it up and be done with it, but he wouldn't. Ok... So my question is, how do I get my point across to the plastic surgeon that I'm not after an aesthetically-perfect closure? I really, really, honestly just want him to stitch the damn thing up and let me go on to the next steps in this whole journey.

Please help, because I feel like very few of the doctors I've seen so far in this journey are actually listening to me. I'm 45. I know myself very well at this point, and can assure you, I don't care what my ear looks like, I just want the cancer gone.

thanks,

 

Jen

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MichelleRHG's picture
Replies 5
Last reply 1/14/2018 - 2:12pm

Has anyone had, or heard of, a subq met on the back of the hand? I have 2 small hard bumps. My primary and recurrence were on leg/groin. Thanks in advance for any insight. This worry had got to stop!

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Rocco's picture
Replies 5
Last reply 1/14/2018 - 1:32pm

My annual January scans (CAP CT and Brain MRI) just came back clean.  NED still - since early 2009, IPI responder after 5 doses in total of 10mg/kg.  Full history online for those interested.

I continue to check in on this bulletin board, respond to posts when/if my experience may help someone and never, ever forget how meaningful and supportive many regulars on this board were back when I needed it the most.   

Prayers and good vibes to all in the fight.  Hang in there!

Rocco

Stage IV in 2005, ipi responder (MDX trial) in 2009 and NED ever since.  

Luke 1:37

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Jimchief's picture
Replies 25
Last reply 1/14/2018 - 10:40am

First off, thanks to all who responded to my surprising (to me) recommendation of Peginterferon that I received from MD Anderson for my 4+mm ulcerated tumor (resected now) that showed only small metastasis to the sentinel node. Since that recommendation, the medical oncologist received some more detailed pathology reports on the sentinel node and  changed her recommendation. She had wanted to put me in a Nivo vs. Nivo+Ipi clinical trial. However, I'm in KC and KU Med didn't offer that trial BUT the recent FDA approval for Nivo for adjuvant treatment for patients in my situation opens the door to Nivo treatment for me here.

So here's the question: What does that look like? I understand it's an IV bag deal where (I assume) I'll sit in a chair and it drips into me for, what, an hour or so each treatment? Am I right that the clinical trials did treatment every two weeks for a year? Is the conventional wisdom that is what the dosage/treatment plan will be for adjuvant treatment? (I know I'll have these questions answered by my medical oncologist on my Jan 9 appointment, but I'm just curious and hate to wait!)

Also, while I understand that Nivo has fewer side effects than Ipi or Interferon, is there anyone here who has undergone this treatment for mets, and if so, do you feel essentially "normal" on the day of treatment? Are there restrictions on activity or food or drink before or after? Also, I've seen TV/movie versions of folks getting chemo sitting in a room full of recliners together (no idea if that is accurate), but is that how it works for this stuff as well? 

I would just like to get a mental picture of what I'm in for. If any of you kind folks have been down this path, I'm curious if you can give me a sneak preview/scouting report!

Happy (and HEALTHY) New Year to all the folks on this Board. It is truly a remarkable community!!

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