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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kilz's picture
Replies 8
Last reply 7/24/2018 - 5:21pm
Replies by: ed williams, Anonymous, kilz, ThinkingPositive, casagrayson

Hello! Please assist me with some of my questions- as I am so anxious! I am a 29 year old Caucasian female. No family history of melanoma and some tanning during my teen years, less than 5 major sunburns. I have at least 60+ moles on my body.  I went to a dermatologist after my baby was born 6 months ago for cosmetic purposes, and the dermatologist recommended a biopsy of a mole located on my left cheek.  I’ve had this mole for about 10 years. It appears it has slowly changed (after looking at old pictures); got a bit bigger and darker. I didn’t notice the change myself as it happened so slowly. She described the mole as ‘4.5mm dark brown macule with gray central speckling. Lesion looks different than others.’ Given the sensitive location of this face and my line of work has to do with my looks, I am very worried about it—- not to mention possiblity of having melanoma- which is so shocking. Which biopsy produces the least scar? My dermatologist recommended a shave biopsy and stated if it comes back severely atypical or melanoma, he would do MOHS (he’s trained in that). My mother in law has had a few shave biopsies on her arms and they all left an ‘ulcer’ look to them, which didn’t seem to heal well. Research also states if it’s suspected melanoma, they recommend punch. If he suspected melanoma, why would he suggest a shave? There is research out there that contradicts the need for re-excision of severely atypical moles. In that case would it be better to have him take out the entire mole with 1-2mm margins as a ‘one and done’ approach? I’m also trying not to panic that because I’ve had this mole for so many years, that I could have had malignant melanoma for over a decade! Any advice would be helpful. 

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They have me scheduled for an injection before my treatment next week? I don't know what for and can't wait all weekend. I have had 2 surgeries in 2 1/2 months and just started Kosovo Friday. Wondering if anyone know about injections or i might have to wait until Monday! Thanks

Susan Bette Hall

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LLN44's picture
Replies 2
Last reply 7/22/2018 - 8:44pm
Replies by: laurakoco, doragsda

Hello,

I am new to the community here (and new to melanoma) but would appreciate any thoughts on what I am experiencing with my recovery. I had a WLE done 9 days ago for a thin spreading melanoma on the back of my right calf just below the muscle, above the ankle. No skin graft or flap, just the skin pulled and stitched super tight on an area that was already fairly tight. Procedure went as planned from what I understand and two days ago (Friday), I had the surgical bandages redressed. The nurse said all seemed clean and healing well. Later that day though, my lower leg from the knee down to the toes went completely cold. And I experienced all sorts of new deep aches and pain from the cold and from the tightness I was feeling. I thought maybe the bandages that were removed were acting as a compression of sorts. And maybe this is why? I warmed it up with body heat and blankets and took additional pain meds. But throughout yesterday and again today, this is still happening if I take the blankets off to move around my flat-my lower right leg gets significantly colder than the rest of my body and I have these deep aches and pain. Colour is mostly the same as my left leg though.

Has anyone experienced anything like this? And if so, how did you address it? I am planning to call the doctor tomorrow, but would still be interested in any personal experience of this.

Many thanks for any thoughts or comments!

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CallMeKate's picture
Replies 8
Last reply 8/6/2018 - 1:41am

All--

I had a 1b WLE on the outer helix of my ear on Wednesday (7/18) plus a SLNB at the same time.  Now, a few days past surgery, I have no feeling on my ear at all, it's as if the numbing agent is still present.  I have pain from the SLNB, more in my jaw than anything.  Is this normal?  Drain came out on Friday, and I certainly felt that one!  But the ear itself, no feeling.

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miaka618's picture
Replies 6
Last reply 7/27/2018 - 3:00pm
Replies by: marta010, DZnDef, Bubbles, JuTMSY4, miaka618, Anonymous

Cancer sucks. Cancer treatment sucks. But how can we make light of the situation?

My personal cancer history involves 4 surgeries, 1 dose of immunotherapy because of hypophysitis, and 6 weeks of radiation treatment. I've been in a holding pattern since last summer because nothing is there, but nothing is not there either. So we wait and watch to make sure that little bit of nothing that keeps popping up on the scan continues to be nothing.

 

But on to my point. What side effects have you had that are not that bad...or even kind of ok.

For example, when I was on radiation treatment on my parotid area, I loss my sense of taste. It was crappy. Everything tasted crappy. Food was reduced to just texture, and who knew that the texture of mashed potatoes was revolting. Because of this I didn't want to eat and so I lost weight. I lost the weight that I had gained while on high dose steroids from my hypophysitis. WIN! My sense of taste did eventually come back, but not the weight. :D

Speaking of hypophysitis, my hormones got a little screwy. I am stuck on thyroid replacement and cortisol replacement probably for life. On the up note, I haven't noticed much in the way of armpit hair and my skin is WAY less oily, so much less that I don't feel the need to shower as much as I use to. DOUBLE WIN!!

So that's my list. What kind of side effects do you not mind?

~April https://www.miakascreations.com

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MovingOn's picture
Replies 1
Last reply 7/21/2018 - 2:15pm
Replies by: MovingOn

Hi, hoping the best for everyone in this melanoma fight.

I’ve had two Nivo (Opdivo) infusions at the 4 week interval (third infusion will be Wednesday). It seems like every little skin scratch that I get is becoming infected (then antibiotic ointment helps). I must have 5 infected scratches at any time (e.g. mosquito bites get infected, small pimples get infected instead of their typical pattern of resolving within days). The thing which concerns me is that the infections are causing my lymph nodes to swell (then they shrink again within 4 days). I’ll see my melanoma specialist on Wednesday and she already knows what I’m experiencing. So I wanted to ask if anyone else on Nivo has had a similar experience?

I was on Keytruda for 5 months previously and didn’t have this experience, but it also could be something happening in me and not a different effect between Keytruda and Opdivo.

 

All the best,

Danny

2018 is a new year!

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Replies by: Bubbles, ed williams, Anonymous, Mat, kst

Because this is super important for so many of us (and I don't want any of you to freak out if you should see either of these reports in any sort of dramatic headline!!!!) I put together this post:  

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/07/do-glucocorticoids-or-dexamethasone.html  

I am far from the end all/be all here!!!  But, I have put together "my take" on what these two reports are saying, with my overall conclusion being this:  

'...When something seems simple in melanoma....we should realize, "NOPE!  Melanoma gonna be crazy!  You'll see!!!"  Still, these are only two studies among YEARS of other research that indicates treatment of side effects caused by immunotherapy, with steroids, did not diminish the good response in patients with melanoma.  And, like the first report above, we have some indication that side effects may even be an indicator of a good response AGAINST melanoma. Additionally, if you are dealing with a potentially deadly side effect...and you die from it because it went untreated....how good is your outcome going to be then????  However, I do think these results tell us that we should continue to look at this issue and be as conservative in management of side effects with steroids (ie doing so only when really needed and with the lowest effective dose) as possible!'

For what it's worth....  Check out the reports if you are interested.  Hang tough and have a great weekend!!! - c

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I concluded three days of driving the 2.5 hours or so each way to Bethesda today with a meeting with my doctors at NIH. Mixed news again.

At first they were nervous about my post-radiation brain scan. My local radiation oncologist let me get that done at NIH because I had this follow up coming up. Dr. Goff was a little concerned about a couple of things, but a call and quick conversation with the radiation oncologist put those concerns to rest. A good thing.

I had been on pins and needles for several weeks because within a week or so of my last scans in May I felt what I believed to be another cancerous lymph node below and to the right of my navel. Although that was noted by the radiologist as a soft tissue lesion and potential metastasis, Dr. Goff and her team compared this scan to my previous scans and she said it had been there for a while and really hadn't increased in size. (On the radiology report it said it was slightly larger. A difference in measuring techinque, maybe?) Dr. Goff explained that I would have lost some muscle during and after the treatment, and that now I could notice this lump whereas before it may have been buried in the muscle and fat. It was a big relief to hear all that.

The main lesions in my chest have increased in size slightly overall. One is unchanged to slightly smaller, the other slightly larger. Not what any of us wanted to see, but it means it's not time to push the panic button yet. So I'm still classified as "stable disease." There is a very slight possibility she said that the tumors could begin to shrink between now and my next follow up, but that I shouldn't expect or count on that, as it is very unlikely.

The spot that has been showing up on the head of my right femur is unchanged, although still considered suspicious for metastasis. And for the second scan in a row there was no mention of a similar spot that had been seen earlier on the left Iliac crest of my pelvis. Last time I was told that it may not have been visible due to the "cut" of the MRI, but as a layman it seems unlikely to me that it wouldn't show up on two scans in a row if it was still there. But again, I'm not the expert.

Dr. Goff said she plans to visit the lab and ask if they are doing anything new and exciting with my cells that could potentially work better for me. I assume that would mean going through this process again. That may be a tough call on my part. I handled it once but now I know how it makes you feel I don't know if I would have it in me to do again.

So that's what's up with me. I hope everyone is getting a chance to enjoy this beautiful summer!

-Bill

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Hi all,

I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

Have a great day everyone!

Vince

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VinceMart's picture
Replies 14
Last reply 8/17/2018 - 1:14am

Hi all,

I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

Have a great day everyone!

Vince

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GeoTony's picture
Replies 6
Last reply 7/23/2018 - 9:49pm

Hi all, just sharing some good news, my latest scan shows an overall reduction in tumour burden and more significantly a 1" lung tumour has "melted away", just had to share, keep up the fight, it's been 18 months of treatment, lots happened initially, then appeared to plateau, previous scan showed some unusual lung activity, "coalescing mass"and I've been short of breath when exercising for over 3 months, so this is superb news.

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Suebette4467's picture
Replies 13
Last reply 7/23/2018 - 9:57pm

My doctor has suggested getting a port in my arm for my treatment. I was wondering anyone's thoughts of experience with or without port?? Thanks

Susan Bette Hall

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/21/2018 - 10:31pm

I'm 25 and I had a Stage 1 melanoma excised about a month ago. It was barely anything... my doctor called it "more of an inconvenience than a crisis". And yet... I can't stop obsessing over every other mole on my body. I think that issue is that my Dermatologist was completely shocked that it came back as melanoma. It was the tiniest little black dot - it didn't fulfill any of the ABCDE criteria. He says he only biopsied it because it popped up recently. I had another one biopsied at my next visit - and again he said, "I really don't think this is anything, this is just to make you feel okay about it" - and it came back as a dysplastic nevus. So I'm left feeling like there's no way to really know if something is up. 

My dermatologist has said that I should trust my gut and if I want him to biopsy something, he will. But I'm nervous that, given free reign, I'll honestly want to biopsy every mole on my body... and as a red-head, freckle-covered person, that's going to be a lot of little holes. I know the whole, "look for anything new or anything that changes", but when you have inumerable freckles and dozens of moles, it's really, really hard to know what's new. I'm driving myself crazy every week trying to remember if some mole I just noticed is new or not. 

So I guess my questions are... a.) How do you not want to cut every mole off? b.) How many biopsies did you ask for in the first few years after your diagnosis?

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Redo.. forst got posted as Annonymous by mistake...

Hello... I posted about gamma knife the other day.. but realized I am not really sure how concerned we should be rearding a brain met appearing.. 2 years post gamma knife and 2 years into Immunotherapy? My mom is not BRAF positive. Her initial brain mets were 3 and small. Now 2 years later as far as we know there is 1. Per my last post going to talk to Dr about not coming off immunotherapy as planned. But I am not sure at this stage of the game what  it means when Brain Met comes back.. what the overall trend is. is it possible they will come back more and the immunotherapy has lost its umph so to speak...?

To be honest the immunotherapy has become such a routine and Mom has been doing great overall with everything else calmed down. so its all felt pretty low key compared to others tough roads...I dont want to be naive though...she started at stage 1 and became stage 4 and we were not expecting that. I also understand that for other types of brain cancers this would be a very not good scenario.. but melaoma seems to be a little different..

Any input on mets recurrence while on immunotherapy or couple of years out appreciated.

Thanks so much!

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Hello... I posted about gamma knife the other day.. but realized I am not really sure how concerned we should be rearding a brain met appearing.. 2 years post gamma knife and 2 years into Immunotherapy? My mom is not BRAF positive. Her initial brain mets were 3 and small. Now 2 years later as far as we know there is 1. Per my last post going to talk to Dr about not coming off immunotherapy as planned. But I am not sure at this stage of the game what  it means when Brain Met comes back.. what the overall trend is. is it possible they will come back more and the immunotherapy has lost its umph so to speak...?

To be honest the immunotherapy has become such a routine and Mom has been doing great overall with everything else calmed down. so its all felt pretty low key compared to others tough roads...I dont want to be naive though...she started at stage 1 and became stage 4 and we were not expecting that. I also understand that for other types of brain cancers this would be a very not good scenario.. but melaoma seems to be a little different..

Any input on mets recurrence while on immunotherapy or couple of years out appreciated. 

Thanks so much!

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