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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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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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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Anonymous's picture
Anonymous
Replies 2
Last reply 1/14/2018 - 8:02am
Replies by: Anonymous, ed williams

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Nashvillian's picture
Replies 11
Last reply 1/14/2018 - 7:24am

THere is so much nuanance to all this I wanted to ask a question. I know there are folks that have been on Opdivo on here but are there any newly diagnosed stage 3b that this is the first line treatment after surgery? I am stage 3b so that is where I am at. Took out 34 lymph nodes one being bad , but it was macrometasis sentinel in my parotid.

Stage 3b, Opdivo treament . Starting 10/13/17

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mrsaxde's picture
Replies 6
Last reply 1/12/2018 - 1:35pm

(Sorry for the duplicate post. I accidentally posted this anonymously and didn't notice it until it was up.)

I went to NIH yesterday for the TIL trial screening. Before I started the process two nurses outlined how things were going to go during the day. They told me that after the tests and an exam by my clinical fellow I would meet again with her and with Dr. Sherry, the attending physician. "We won't be able to give you a definite answer today, but you'll have a good idea about whether or not you'll get it."

Dr. Sherry called me an "excellent candidate." But he had two concerns. First, I have a separate thyroid issue, and one lobe of my thyroid has pushed my trachea slightly to one side. He was concerned about whether they could easily insert a breathing tube for surgery. Second, I take methimazole for hyperthyroidism. He told me he needed to consult with their endocrine team to see what they thought. He was particularly interested in whether methimazole has any effect on lymphocytes.

So if my thyroid isn't seen as a problem, it sounds like I'll get in. They said they would let me know by early next week.

-Bill

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Bobman's picture
Replies 13
Last reply 1/12/2018 - 3:32am
Replies by: Bobman, Bubbles, Gene_S, Janner, Anonymous, doragsda

I have  read ,and re-read the conversation  here last week , as well  as Celeste's blog on the subject  of snb for people  with multiple  primaries . I think I  have a good  understanding  now,but wanted  to check in here before  starting  up again  with  my surgeon  in the next couple  of  weeks  to make sure ,so I can  discuss  with  him. My first  four  primaries  had depths  between .5 and .8. My surgeon  said  that since they were shy of the standard 1 mm  for the snb I  was good  to  go. My next 7 primaries  have all been in situ .  After I was on about primary  5,or six they started scanning me. Three  pet scans  and a couple  mri's and CT's later, all with "could  be mets"  written  somewhere  in the report , and I  still  don't  have anything  concrete  on different  staging  from the original  lesions . I'm  wondering  now if I   would  be much better  served  getting  a snb,rather than  continuing  the scans? For the first time ever,just a few days  ago I  felt what I believe  to be an enlarged  node under my left pectoral  muscle .  I'm  not  sure  how ,or where nodes react in relation  to primaries , but I have had 4 in situs  on my left side. One on left shoulder , one on left elbow,and two  on my left side near the armpit. Would  this be considered  reactive enough  worthy  of a look? Every practitioner  I have seen in the last few years  has poked around  for anything  palpable , however  cursory  it was. But I   certainly  felt  it the other day,and my palpation  skills are excellent . Could  positive  nodes be responsible  for the string of in situs ?  I have an excellent  relationship  with my surgeon , so I just  want to go in armed with as much  as I   can. Really  appreciate  the earlier  conversation  by you all on the snb for those  with  multiple  primaries . ....it got me really  thinking . 

Thanks  in advance . ..all I  learn about  this stuff , I  learned  from you all.

Bob

We are one.

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