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 1
Last reply 10/23/2017 - 4:14pm
Replies by: Jamie1960

Hi. I had a lentigo maligna( melanoma in Situ) removed by a WLE 3 years ago on the center of my chest, I was 34 years old. I have had freckles on my chest most of my life. After the WLE 3 years ago I still had a few freckles close to the scar an one on the scar where the skin was pulled together. I have now noticed a few tiny black dots in the freckle that has been on the scar. The black dots weren’t there 6 months ago nor a month ago as I always look. My question is since these small freckles( light brown in color have been there since the excision and one is now turning into a melanoma I feel certain ( go to derm tomorrow for my 6 month check) would this be a local recurrence or a primary that just happens to be on the scar. It is a pretty small freckle. Thanks,Tset

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skylark's picture
Replies 10
Last reply 10/23/2017 - 12:37pm

Getting the melanoma diagnosis last month was surreal -- and really frightening.  Now I'm recovering from a Wide Excision (about 6 inches long) on my upper thigh and SLNB in the groin.  At three days out, the incision from the SLNB isn't bothering me too much, but the WLE incision is really swollen, especially at each end of the incision. It looks like two volcanoes!  Still uncomfortable to stand for even a short time.  Is this normal and if so, how long does it take for the swelling to go down?  I'm trying to stay off my feet as much as possible, but that's not helping with the worrying about what's next.  Any words of wisdom greatly appreciated.

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Anonymous's picture
Anonymous
Replies 5
Last reply 10/22/2017 - 10:02pm
Replies by: GrossieGal313, Anonymous, jennunicorn

Hello,

I'm scheduled to get an WLE and SLNB on Wed October 25th and I am a little nervous (my first surgery using general anesthesia). Any questions I should ask the Doctor and/or anesthesiologist prior to surgery?  Also how long does this type of surgery take?

Thanks for any comments.

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Jdp17's picture
Replies 7
Last reply 10/22/2017 - 5:48pm
Replies by: jjk17, Jdp17, Anonymous, casagrayson, GrossieGal313

I was just currently diagnosed with Nodular Melanoma, at least a Clarks level IV. Breathless at 2.3mm To say the least I am nervous wreck.I am 34 years old and a healthy individual! I had this what looked like an ingrown hair spot on my leg that I watched for a while. Never grew different in size or color. I waited about 4 months then went in and resulted to this. The "unknown" is seriously driving me crazy with anxiety and panic. I have my first appointment in a week for my PET Scan and to meet with the Surgical Oncologist and Medical Oncologist. Looking for some positive vibes, what to expect ect.

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AliCat61's picture
Replies 3
Last reply 10/22/2017 - 4:25pm

Hi all :). I apologize for having gone radio silent these last few months. I have been busy just celebrating having my husband back. After discontinuing the Yervoy and Opdivo combo and being treated with prednisone and lasix for a month, he was feeling fantastic! Even after we started the Opdivo again, he continued to do well. He was swimming with me and walking with me, and exercising. One of the most important things I've learned since his diagnosis in 2015 is that it's important to enjoy every single moment of every good day that we are blessed with, so we did just that. 

He's still doing well. His most recent pet scan in September indicated no new mets and no active tumors., so he's having an excellent response to the Opdivo. Unfortunately, I am noticing a change in his breathing that I will have to report to the doctor when we see him on Monday. Previously he had a very bad reaction to the Yervoy and had an enlarged heart and fluid on both lungs. I am afraid it may be happening again. I'll keep you all posted. 

Thanks, as always, just for being here and listening. 

Alison

 

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Julie in SoCal's picture
Replies 22
Last reply 10/22/2017 - 4:17pm

Good Afternoon, Friends!

I have good news to share!  I am officially a NERD again!  That is I had scans last week and I have No Evidence of Recurring Disease!  How about them apples!?! 

So do the happy dance with me!

I am now 2/3rds of the way through the Lung Cancer Triathlon.  Surgery- check, Chemo- check!  The radiation phase is next and I think I start up this coming Friday.  I've never done radiation, so this will be a new experience for me.  I think I'm going to tell myself it's just like going on a ride at Disneyland!!

Mel seems to be in check, or at least I haven't found any new intransits.  So it's all good!

So looking forward to being done!  But, I'll stop complaining. it is working and for that I'm grateful!

Thank you friends!

Shalom!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/22/2017 - 2:34pm
Replies by: Anonymous

I've had a mole for atleast 2 years and i noticed 2 weeks back it has a eccentric darkbrown dot on one edge about 2mm in size. The darker color is nothing new but according to several studies peripheral eccentric hyperpigmentatiin is a significant predictor of melanoma. The mole itself is lightbrown 5mm in diameter, round with regular edges and it has probably not changed much from what it looked like 2 years ago since the darker spot was darkbrown back then and it isn't gone black or anything. It is smooth on the surface and the darkbrown spot is not elevated. Many other nevi that i have are also two colored. It hasn't changed since i noticed it. If it has changed since i've last seen it it has probably gotten bigger but not lost any previous symmetry in this process. In short: A lightbrown flat nevus with no other clinicaly atypical features than a brown dot 2 mm in size located on my right upper arm wich has done little or no changing in 2 years on a 17 year old male.Also do melanoma eventualy stop evolving and hiw does it look like when it has finnished evolving clinicaly? Ihave a derm appointment in 3 weeks and im super anxious has anyone experienced anything simuilar or can anyone tell me if this is serious and if i should indeed be concerned?

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mrsaxde's picture
Replies 9
Last reply 10/22/2017 - 8:11am

Hello everyone. I wanted to give everybody an update on my status in the anti-LAG-3 trial.

Cycle 2 is finished for me, and I had my end of cycle scan on October 6. As before, the news wasn't terrible but it also wasn't clearly positive. My chest lymph nodes are slightly larger than they were in the scan I had at the end of cycle 1. There is another node in my chest that is measurable now under the RECIST criteria, and an enlarged node in my right armpit that Dr. Sharfman said had been there, but was now also large enough to be measurable.

Dr. Sharfman said that he would have liked to see things going in the right direction, but that the results were not enough to make him recommend that I come off the trial at this time. He said that some people have responded slowly to the anti-LAG-3 antibody, and given that the cancer is still confined to my lymph nodes he wanted to give it one more cycle.

So that's where things stand. Dr. Sharfman seemed visibly disappointed that I hadn't responded better, but he seemed to think there is still a chance that my response might ramp up. My next scan is in early December. At that point it looks like it may be decision time about other possible treatments.

-Bill

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thinkingofu's picture
Replies 6
Last reply 10/21/2017 - 5:24pm

Hello lovelies

Hope you are all well today

My mum has completed her 10 sessions of SRS and 2 infusions of Yervoy+Opdivo (out of 4)

She is still on Dexamethasone (10 mg) once a day

Hydrocortisol (also 10) x 2 day

Thyroxine (100 mg) 

Her face got bigger (like a bit swollen), but her legs and arms are much smaller than they used to be. After SRS - her hands shake to the point it is difficult to hold a spoon. She is craving sweets all the time

Also, yesterday, when she missed a dose of dexamethasone she long consciousness. She is OK now after taking it. 

From your experience, guys, does is sound like normal side effects? I am worried sick. Also, after which dose of Yervoy+Opdivo did you doctors ordered scans to check on progress?

Thank you xxx

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Anonymous's picture
Replies 1
Last reply 10/21/2017 - 1:50pm
Replies by: SABKLYN

Hi,

I'm wondering if some of you could answer my question. When they talk about assymetry in a mole does the assymetry ONLY regard shape or does it also include color. As an example if i have a mole that is nice and round but has a dark spot on one edge (wich makes it so that if i fold it down the middle one way it'll have two sides of wich one has a colored spot and the other one doesn't but in shape they are symetrical) is considered assymtrical or only considered to have a variation in color?

Thank you for your answers.

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Dreaf01's picture
Replies 7
Last reply 10/20/2017 - 8:07pm

I just wanted to seek some advice from warriors on this board because I am kind of stuck and feel like I have no where to get advice from. Back in Dec. of 2016 I had a WLE and groin SLNB for Melanoma stage 1b 1.5mm not ulcerated, 4 mitosis, clark level IV. The margins came back clear and the SLNB was negative. Since the surgery I have had a small lump right near the SLNB scar. I have had 2 ultrasounds on the lump and both came back stating the lump is a normal appearing lymph node. How accurate is ultrasound? My surgeon stopped seeing me since I moved out of the area and I am now following up solely with the Dermatologist. I do have "pulled muscle" type pain in my groin area since this surgery, is this normal? I have to admit being a single mom to a 1 year old during this has caused me a lot of anxiety, but I feel like I cannot get anyone to take my concerns seriously. I have headaches and backaches and I feel like my concerns do not seem to be concerns of the PCP. I know with my stage I would not usually be referred to an Oncologist so I am wondering who I should discuss my concerns with. Thank you for any advise you can give !

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Jeff_in_FL's picture
Replies 5
Last reply 10/20/2017 - 8:04pm

Hi all,

Thought I would run this past you ...

May 8, 2017 I had an excision on my right calf ...Nodular variety. The VA surgeon did a pretty good job (flap method). Up until recently, I haven’t had any issues with it, but now there is a small pea size bump under the skin. Probably nothing at all, but I thought I would get some opinions while waiting for my VA appointment in early December. Wondering if this is a real common thing.

Thanks :)

Jeff

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Gene_S's picture
Replies 2
Last reply 10/20/2017 - 2:43pm
Replies by: Bubbles, Threefitty

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

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Anonymous's picture
Anonymous
Replies 0

Is this mole classified as assymetrical or not and does it look alarming?

https://imgur.com/a/2Wh42

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betsyl's picture
Replies 1
Last reply 10/20/2017 - 3:02am
Replies by: Jubes

Found this new video posted just a few days ago.

https://www.youtube.com/watch?v=CdnkSf_3CUI&feature=em-subs_digest

Good stuff.

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