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 10/21/2017 - 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 6
Last reply 10/23/2017 - 11:55am
Replies by: cheris, Bubbles, obtu.bt, BrianP

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 6
Last reply 10/21/2017 - 12:26am

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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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 6
Last reply 10/20/2017 - 8:18pm

I'm in my early 30s and haven't had the flu in over 20 years. I've had the flu vaccine twice during that period and both times I got sick, not flu but some cold like symptoms right after the shot.

So normally I wouldn't want the vaccine, but since I'm going to be around so many people with compromised immune systems, I'm thinking about it this year.

There's some reports of exaggerated immune response to the vaccine while on pd1 inhibitors, but no thorough studies that I've seen. Does anyone have experience with that?

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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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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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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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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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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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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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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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