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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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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Replies by: FeelingLonely, MovingOn

I have been on this forum and some of oyu might remember my story. My mom was diagnosed with stage 1B melanona in Februrary and was a wide excision biopsy/surgery to remove it. She had it on her right cheek close to the eye. Miotic -1 Mm. Breslow - 1mm. Clarks II. No ulceration. PT1 b. They did no do a sentinel node biopsy but according to wide excision biopsy, no lymph node impacts. They did neck, stomach scans but we arent informed of anything concerning.

It's about 6-7 months since the srugery. Her first follow-up after 3 months was routine. No medications, just asked to keep up the follow ups. Next one due in January,

However she just noticed a hard mass/lump kind of a thing below her right breast. It looks like a fat/flesh ring (like cellulite tire) from the outside but upon feeling, it feels hard - almost like a projection of a bone or a bone growth ..kind of. It is not painful. No discomfort. Sh e doesnt know how long she has had it. She just noticed now.

I have scheduled an appointment with my GP for next week. Sadly, she is now overseas and won't be able to see her regular doctors until mid Janurary 2018. I am trying to get her an appointment with a GP in the country she is currently at. Its all very expensive without insurance but oh well.

My questions are

- Has this happened to any of you? Does this look like metastaic (but she was only stage 1) cancer? or could this be second cancer?

- Does this sound like breast cancer from the way of it? I thought breast cancers always appear on breasts and not below.

Thanks a lot for listening. I would appreciate any thoughts, advice or pearls of wisdom.

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/19/2017 - 10:18am
Replies by: Anonymous, Janner

i've had this mole for a long time. It is smaller than 6mm in diameter and the only thing "off" about it is the variation in color. It is not raised what so ever. Should i be concerned and consult a derm?

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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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SDFun's picture
Replies 7
Last reply 10/18/2017 - 10:35am

Hi

 

I just got a voice my from teh billign depatment at the hospital my onoclogist is at that implies that insucne will not cover this testing and it may be $5000. I was wonderign what other people have learned? Did you have the testing and if so did your insuance cover all or a portion of it

 

Thank you

 

Nancy

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Bekah274's picture
Replies 4
Last reply 10/18/2017 - 9:19am
Replies by: Anonymous, Bekah274, MelanomaMike, brendon

Hello, 

sorry to be a bother, may be a case of google has freaked me out. I have a mole on my chest, I’m a 27 year old female.  I’ve had it for as long as I can remember, in the past 2 years it’s started to develop black spots. I went to my doctor who looked at it and said the black spots were due to fake tan.  

However, I hardly put it on and it scrubs off... recently more black spots have appeared, it’s raised and not symmetrical, although it wans’t Symetrical 2 years ago and was only slightly raised.

is this something anyone has heard about before, I’m worried I go back and seem as though I’m panicking... sorry for the trouble.

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zont's picture
Replies 6
Last reply 10/17/2017 - 11:12am

Hi All,
I am little confused and I need any ideas from you:
Since 2016 Nov I have gotten treatment with Opdivo (before I took mekinist + tafinlar 2014 - 2016)
But in 2017 Sept PET CT showed new MTS in liver and pleura.
My doctor advices me to add Yervoy (3mg per 1 kg) and decrease Opdivo from 3mg/1 kg to 1mg/1 kg

Did anybody the same therapy, I mean adding Yervoy after regression on Opdivo, or probably another options?
Thanks in advance! 

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Happygal's picture
Replies 26
Last reply 10/17/2017 - 9:10am

I am to decide to start Yervioy within the week.  I am scared if the side effects outweigh the benefits.  I live a crazy full life and am so very afraid of this treatment.  Have you done it?  Did it affect your daily life?

Tyais

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Anonymous's picture
Anonymous
Replies 5
Last reply 10/17/2017 - 8:42am

Just a question.  I was diagonosed with melanoma in situ in August and had surgery in september.  The initial bioposy had removed all melanoma.  I am switching health insurance companies.  On questionare it asks if you have cancer and treatment.  Do I mark yes or no?  I see a lot of different opinions regarding melanoma  in situ being cancer or not.  thanks.

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