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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seathingchild's picture
Replies 1
Last reply 10/21/2017 - 7:36pm
Replies by: Janner

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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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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Julie in SoCal's picture
Replies 21
Last reply 10/21/2017 - 9:54am

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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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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cheris's picture
Replies 3
Last reply 10/20/2017 - 10:15pm
Replies by: BrianP, Bubbles

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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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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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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mrsaxde's picture
Replies 8
Last reply 10/20/2017 - 2:27pm

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 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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TexMelanomex's picture
Replies 8
Last reply 10/19/2017 - 4:51pm

Hey Warriors, I hope you are all enjoying your weekend and relaxing! I wanted to post a few very minor SEs I've noticed since my first infusion of Keytruda on Tuesday (for informational purposes only, not griping :)

1) Minor flu-like symptoms and fatigue (not enough to keep me home from work or being able to do all my normal things), this lasted only 48 hours and resolved by Thursday night.

2) Sunlight sensitivity. This could be from the PV-10 so I can't blame the Keytruda but this has consisted of my exposed skin turning light red and itching like crazy even after brief exposure to sunlight (i.e., the side of my face after driving for 10 minutes). I don't know if this has improved since I have made sure to cover up even more since this started happening. I can say there have been no rashes or itching since the first 48 hours and benadryl topical cream was very effective.

3) Night sweats and getting up to pee at night. These are new developments but tolerable...I suppose its better to wake up to pee a few times vs not waking up and peeing the bed! The night sweats don't wake me up, but when I do wake up in the morning, the pillow and sheets are soaked.

Overall, I consider these things pretty minor and they are pretty easy to adjust to.

Rock on Warriors!

Tex

 

Tex

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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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