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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GrossieGal313's picture
Replies 3
Last reply 10/25/2017 - 7:00pm
Replies by: Ed Williams, Bubbles

I met with my oncologist for the first time.

We will be persuing Immunotherapy as the course of treatment.

Most likely Nivo but we talked about BRAF as an option as well.  Will I go this route only if the mutation is present?  Nivo if not?

I'll obviously revisit my questions with oncologist just wondering if anyone has any inut or can recommend a good resource to understand more about Immunothereapy and BRAF.

Donita 

Donita

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Whitey's picture
Replies 4
Last reply 10/31/2017 - 4:10pm

My husbands lung cancer was first diagnosed in Feb. 2017.  After many tests, dr's ect. the lower part of my left lung was removed.  Diagnosis was Metastic Melanoma Unknown Primary.  Onc. was going to treat with Immunotherapy but then called to say Medicare would not pay for the treatments because since they can't find the primary source and they removed the melanoma part of the lung my husband was considered "cancer free".

It would seem to me that if there had to be a primary then it is there somewhere hiding and treatment would possibly get rid of it.

I don't like the idea of wait and see if it comes back somewhere else.  It didn't go anywhere, just the metastisized melanoma was removed.

I am so worried for him.

 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/24/2017 - 12:15pm
Replies by: Anonymous, TexMelanomex, MovingOn

I have read that stage iv patients with evated LDH levels have the worst prognosis. My husbands LDH level has been normal for the first 5 years at stage iv. His level has recently shot up due to disease progression. Do high levels for any length of time still indicate poor prognosis?

Thank you. 

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Bubbles's picture
Replies 3
Last reply 10/24/2017 - 7:45pm

There's a "new" article addressing the possible connection between cancer and sugar out in Nature Communications.  So, I thought I'd get a jump on it if any of you are interested.  I've created a post (with some significant help!!!!) that includes information, opinion, a link to the article itself and links to two other articles discussing same!!! 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/cancer-and-sugar-oh-lordy-lordy-here-we.html

Hope it helps and I hope all of you are having a lovely weekend!!  love, c

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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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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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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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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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seathingchild's picture
Replies 4
Last reply 10/28/2017 - 10:20pm

I have had a recurrence of melanoma on the back of my leg just above the heel. Its insitu, which is good, but will need to be excised, which sucks. Because my surgeon will be taking a wider margin i will have to have a skin graft. He said I'll be off work for a month and not allowed out of bed except for the bathroom two weeks. Silly question, but how do you keep your leg elevated but not put pressure on the skin graft when your skin graft is just above your heel? Having trouble picturing it.

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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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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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cheris's picture
Replies 7
Last reply 10/24/2017 - 5:09pm

Hello, my fellow fighters,

I had been NED for over a year after doing almost 2 years on Keytruda, but this week a small spot was found on my PET/CT scans.  It actually showed on the PET, but not on the CT.  My LDH is the highest it has ever been  My oncologist scheduled an MRI for 6 weeks to get more info.  I really wanted to start back on Ketruda immediately, but he said we need a better picture.  I always thought that I would be put on Keytruda again since it worked so well, but he also talked about adding some new drugs to it.  I feel a little lost because there is so little data on recurences.  Does anyone have any information, or anyone in the same boat?  Thanks,all.

Cheris

 

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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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Sammmantha8's picture
Replies 7
Last reply 10/24/2017 - 6:58pm

Hello, thanks for reading

To start, I have not been diagnosed with melanoma as of now. I went to the dermatologist today to have a few moles looked at with one in particular that I knew showed all of the ABCDEs of melanoma. Just as I feared, he was very concerned about this mole and he debated for a while about whether to do a deep shave biopsy or to cut it out and suture it. He finally decided to do a deep shave, but as soon as it was removed he looked back at it looking very concerned and disappointed. I kept thinking about it and realized when I got home that it was probably because the mole was much deeper than he expected. Even with the deep shave biopsy, I can still clearly see the mole shape and color inside.

Anyway, I know that only the tests can tell me if it is melanoma, but does him thinking it is have any weight on the typical malignant vs benign percentages? The mole was 1.2cm x 1cm..

are we able to post pictures? I have a picture of both the mole and the biopsy site.. I'm guessing nobody wants to see the "after" photo.

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