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.

Expand/ Collapse Topic
 
Replies By
View Topic
MrsPoppy's picture
Replies 1
Last reply 2/16/2019 - 4:42pm
Replies by: SABKLYN

Hi I just found this site. I'm happy I did. It's nice to see so much care and support happening. I wish you all well.

So, I suppose the title says it all. 2 of my fingernails have a line running down the center. I've noticed 1 recently and the other has gotten wider and slightly darker. I'm mildly concerned after consulting dr Google which I know isn't the greatest thing to do.

Both lines are on my right hand. One is my thumb and the other is on my pinkie. Neither are particularly dark or wide. Just odd I suppose as I feel they came out of nowhere and are mildly changing their appearance.

Does anyone have any experience with such a thing and should I be concerned?

Thank you for your time.
Poppy

Login or register to post replies.

KLM2122's picture
Replies 6
Last reply 2/15/2019 - 3:32pm

My Dad is dealing with stage 4 melanoma and I would like some support and insight for him.

His Melanoma story:
Diagnosed Nov 2018 with melanoma on his left ear.  Is working with Penn hospital.  Had MOHs surgery and SLNB in Dec/Jan.  All was good and clear until July 2018.  A lump grew on his neck.  The lump was melanoma.  He did 21 days of proton radiaton in Oct/Nov 2018, as well as monthly immunotherapy(I believe optiva).  He just went for his PET scan yesterday and they found very small nodules(melanoma) on his lungs...smaller then a cm.  The treatment did not work the way they wanted it to.  The next step is optiva/yervoy combination for 90 days until his next scan.

Right now he is down, feeling defeated, and scared.  I am reaching out for support for him.  His name is Kevin McBride.  He is 58 years old, and other then this melanoma, he is very healthy.  No previous disease.  In shape.  Never smoked.  I know he has a lot of fight left in him, but I feel he needs some support from this wonderful community you have here.

Thank you in advance,
Kelly Gorman

Login or register to post replies.

stljme's picture
Replies 2
Last reply 2/16/2019 - 10:27pm
Replies by: jennunicorn, Anonymous

Hi all!  I am 38 y/o, diagnosed with 1a Melanoma in April 2018.  Shortly after I was diagnosed with papillary thyroid cancer (thanks to my Dermatologist who told me to get my thyroid checked out because it looked large).   What a doctor!!

My question:  Is it up to me to request an oncologist appointment, or is it unnecessary to see one?  I am COVERED head to toe in moles and freckles, no joke.  Outside of my hands, you can't measure a square CM without running into a mole or freckle.  Natural strawberry blonde, blue eye, fair skin - destined for this prognosis apparently...  :(     So my fear of course, is how in the world could someone find every occurence of melanoma on this skin.   The majority of my moles fall outside of the ABCD's, and it's hard to track any changes because there are SO MANY to track.

Would seeing an oncologist guaranty in any way that early detection would be greater?

Login or register to post replies.

MelanomaMike's picture
Replies 4
Last reply 2/16/2019 - 12:43am

Hay guys, quick update, as i told you iv been real weak this past month & now that i finally got my ass over "in the morning" before 8am (better reading as you know) i just got of the phone with my Endo, no Cortisol is being produced! So, i "was" being "tapered" off the Hydrocortisones, i was down to only 5mg in the AM only but now 10mg morning and 5mg 2pm...as you all know, the Hydros work against our immunal drugs so, kinda mixed feelings...But anyways, explains that..hope you all are good...

Im Melanoma and my host is Mike..

www.covvha.net

Login or register to post replies.

BillB's picture
Replies 12
Last reply 2/16/2019 - 5:22pm

Completed infusion #24 yesterday along with CT of head/neck and torso, and ultrasound of thyroid. Results today and still have clean scans (6 so far). Overall side effects have been minimal. Discussed exit strategy for Keytruda infusions which include the next two infusions spaced 6 weeks apart, the following at 3 months and if all scans are still clear will stop. That will be two years in calendar time but only 27 infusions which equates to 1.54 years of actual treatment. I’m very, very thankful for our brilliant scientist and what they have accomplished considering I started with a very aggressive modular melanoma. 

Happy Valentine’s Day to everyone!

Login or register to post replies.

So here we go again right next to the stage 1 character, which went into keliod in recovery for three months a suspected insitu needs looking at.

Here's the interesting thing to share ... Has anyone ever heard of a stage 1 being two insitu's side by side in the path report? That's what that first one came back as.

This new one is two moles that are merging or growing very close. With being CDKN2A positive I just wonder now if this is how mine get started? Like a galaxy of stars colliding.

Is there much information on how SSM melanoma's are birthed?

Login or register to post replies.

aldrichdesigner's picture
Replies 10
Last reply 2/15/2019 - 9:13am

Well it's finally happening; I couldn't take it anymore and I'm finally getting this damn pump installed to see if I can't at least live the rest of this year out with minimal pain.

I mean hell, if it's going to be my last then I might as well enjoy it as much as I can. So, I go in to tomorrow morning at 10 and should be in recovery by 2. They may keep me overnight since I'm a cancer patient but typically it's an outpatient procedure. Doesn't matter to me, I just want relief.

Wish me luck all.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

Login or register to post replies.

MarkR's picture
Replies 6
Last reply 2/15/2019 - 12:40pm
Replies by: GeoTony, sing123, MarkR, Bubbles

Went for my routine scans having had surgery to remove the lump from my arm in January.  

The good news is there is nothing new, the not so good news is that some lung nodules that have been there for some time have been very slowly growing over the last year.  They have been largely ignored until now as too small to worry about.  Apparently looking back over previous CT’s the most one has grown is 5mm, the largest is 1.5cm and when I asked how many there were the response was ‘I would need to count them’ :-(

Oncologist thinks they are likely Melanoma but is going to discuss this further with the radiologist to take a view, but I suspect the writing is on the wall.

I discussed a return to Nivo maintenance and the oncologist isn’t convinced this is the best option and is talking clinical trials.  The lump from my arm is being tested for various markers and if they believe it is Melanoma they will look at the various options and make their suggestions on best course of action.  I really was hoping for at least a short period of NED so am pretty deflated at both this new issue and having seemingly failed Ipi/Nivo.  

Being Braf Wild Type my options appear to be limited and I am starting to research trials, but any knowledge of successful trials would be very much appreciated.

thanks

Mark

Login or register to post replies.

skfitz's picture
Replies 4
Last reply 2/13/2019 - 5:26am
Replies by: skfitz, Dympsd, llchelseall

Just wanted to give an update on my husband Jason. He's been on targeted therapy now since July 2018 and is still having success. His scan last week showed only 1 tumor remaining in his leg! Amazing! So he's scheduled for radiation on the one stubborn tumor and then will hopefully be given NED status for a while.

A quick recap for those of you who are suffering and scared like I'be been: He was stage 4 in March 2018 and it was everywhere: brain, bone, heart, lungs, and skin. He failed immunotherapy but had immediate success with Dabrafenib/Trametinib. We saw golf ball sized tumors shrink in days! He had cyberknife on his brain MET which seemed to shrink it quickly (though it could've been the pills too).

These pills are truly amazing when they work, though they can bring along some severe side effects. I've posted here a couple times about his relentless 103 - 104 fevers, severe rigors, and debilitating knee and ankle swelling/pain. The docs have had him on 30mg prednisone and dose-reduced the Dabrafenib (from 150mg to 75mg) which has worked until he attempts to taper the prednisone. Last month, after a horrible bout of fevers we started playing around with intermittent dosing on our own because his quality of life was really suffering. He took a 12 day break to reset his body and taper the prednisone to 20mg, then resumed the pills. He stayed on the pills for 2 weeks before breaking for 1 week and reducing to 17mg prednisone. He then increased the Dabrafenib back to 150mg and resumed the combo for 1 week, then took a 1 week break to reduce the prednisone to 15mg. It's a slow process and not all doctors would encourage it, but ours understands that quality of life matters. So far with this dosing he's had no fevers and been able to get back to working part-time. He's still suffering from joint pain and eye pressure during his "on" weeks, but loves his breaks.  

I would never suggest this approach since it got him kicked off his clinical trial, but I wanted to share our story with the community. Every BODY is different and at the end of the day, we are our own best advocates. I got this idea from reading about a current clinical trial right now that has patients taking full dose Dab/Tram on a 1 week on, 3 weeks off schedule. It's only phase 2 so again, I'm not suggesting others try this, only sharing our story.

My thoughts and prayers to everyone out there affected by melanoma and other cancers. Stay strong and keep advocating for yourself and your loved ones! 

-Shannon

Login or register to post replies.

edward9's picture
Replies 4
Last reply 2/12/2019 - 10:25pm
Replies by: edward9, casagrayson

Hello,

I discovered this about a year ago (maybe more) on the inside of my leg/outter knee and I've since become considered since it hasn't gone away or seemingly changed. Does it look like a melanoma?

Thank you.

Login or register to post replies.

p4nde's picture
Replies 3
Last reply 2/12/2019 - 10:15pm
Replies by: casagrayson, Anonymous, p4nde

Hi all,

I hope you're annoyed by these kinds of posts. I previously had testicular cancer and my grandfather died from melanoma so I might be a bit paranoid. I have two bumps on my legs that the doctor is planning on removing one month from now, but I failed to show him a couple of suspicious moles. The one that I'm mostly concerned is linked here. 

With how this mole looks, I'm wondering if I should be more urgent about this than one month? It is located on my chest and I've had it forever, but it has changed how it has expanded past the border and it's kind of bumpy in a weird way.

Picture of it: https://ibb.co/RpWkBSP

I learned with my TC it was literally a race against time.. and I was vigilant enough to avoid chemotherapy. 

Thanks for any advice.

 

 

 

Login or register to post replies.

mortalMike's picture
Replies 4
Last reply 2/11/2019 - 10:50pm

Well, hello everyone. I’m back to give you an update on me. Some background: Somewhere around the first week of Aug, 2018 I noticed what looked like a pimple on my upper chest. Couple of days later it got a little bigger instead of going away. Red flag 1. Something different on my shin. I showed my wife and said I was going pop it. She told me a story about a woman she works with and her “popping” a pimple. It turned out to be MRSA virus and by popping it she inadvertently made it worse. That scared me just enough not to mess with it.
Over the next 4 weeks this thing grew and hardened but continued to look like a pimple or a boil. During this time I put in a call for an appointment with my dermatologists and had to wait to get to see him. After 5 weeks since I first noticed this thing I get to the Dr. and he takes one look and says that it needs to come off for a biopsy. This was 10/26/2018. The report comes back on 11/01/2018 and they say I have “Malignant nodular MELANOMA”. All sound stopped, I had tunnel vision in that I could only see the doctors face, I had a unpleasant smell about me and my eyes were getting wet for some reason. I’m 69 and a manly man fighter. The report went on to say the tumor was at least 4.0 millimeters and was composed of atypical melanocytes with numerous mitoses and cherry-red nucleoli. Pissed on myself. The Dr. said a bunch of other stuff that I did not hear because I was trying to figure out how to get out of there without anyone seeing my wet pants. I did catch that I needed surgery NOW.
Surgery was set for 11/5/2018. Red flag 2. Why so fast? My dermatologists told me to stay off the internet for now because we did not know for sure what was going on with me and I might unnecessarily upset me. Red flag 3. What would upset me? This is where I came across this Melanoma Research Foundation and particularly the MPIP or patient forum. They said the surgery will would cut out all the melanoma in that area. They also said that they needed to take out 2 lymph nods in my neck to biopsy to see if the cancer had spread to my lymph nodes. Red flag 4. Ok, surgery over, I have an 8 inch scar on my chest and minus 2 lymph nodes. The biopsy came back: lymph nodes negative and clear and they cut out this big area and say they got all the cancer.
Great news right? I also got some great advice and information from this forum. The people on the forum told me to get a MELANOMA specialist. I did and got hooked with the Moffitt Center in Tampa. Since 11/5/2018 I have had a more in-depth analysis of my biopsy done. Its known as a BRAF mutation analysis. It said that no mutation was detected in the targeted areas.
I also had a CT NTAP (CSCAN) of my neck, thorax, abdomen and pelvis all with contrast. That all came back good with no cancer.
Also had a MRI brain scan with contrast with no cancer. Just got the good news on those tests.
My doctor is also a research doctor. He says that I am cancer free now but they are not sure if I will remain that way. Red flag 5. They give and then they take away .He wants to put me on immunotherapy treatment with the drug Opdivo (Nivolumab). Anybody know anything about this drug? I see now that I’m gonna have to be more active and knowledgeable about my own condition and treatment.
Any new people out there reading this after just finding out you have cancer, SLOW DOWN. Change pants. Start reading and get involved with this info portal. You have a lot to do. I’m still scared but not pissing on myself. 

Login or register to post replies.

Courtney20191989's picture
Replies 1
Last reply 2/11/2019 - 9:19am
Replies by: Scooby123

Hi guys, I've made an appointment with a GP next week but in the mean time thought I'd ask for some advice here.

Can melanoma reappear as a pinky/reddish/light purple irregular lesion growing outward from the original WLE site? I'm 99% sure it isn't a bruise.

My original was in 2009, between my ankle and heel, 0.7depth and Clarke IV.

Hopefully I can figure out how to add a photo as it's abit odd

Thanks guys x

Mo

Login or register to post replies.

Amanda R's picture
Replies 2
Last reply 2/11/2019 - 7:18pm
Replies by: Amanda R, SABKLYN

I need some sound advice as I am feeling very confused and stuck in making this important decision. Please someone if you have any sound advice for me. I can hardly get thru my day. 

back in October I had a spot biopsied at my request that was irritated due to rubbing. It was 6-7 mm and was punch biopsed with a 5mm punch and stitched up: 

the report came back no definitive diagnosis just “traumatic changes” and stated there was focal necrosis of the epidermis. 

I became concerned that maybe the irritation or “focal necrosis” caused a misread of the pathology and possible missed diagnosis of mel insitu or worse. I sent my slides off for a second review and it came back with a little more detail stating “multi focal epidermal necrosis and hyperplasia  no significant atypia of melanocyte seen.” 

my concern is that because of the irritation that it skewed the pathology so they couldnt read the melanocytes correctly and so possibly missed a high lesion? Is this possible/logical? Or if there is atypia would it be readily apparent despite irritation? 

My other concern is that what was left behind could have been atypical. 

i have a derm who is willing to go in excise the spot (now scar with a little red pigment coming back) completely and send it off for step sectioning and stains. My question is would going back in now be able to find any atypical process if it were there? 

I am going back and forth on having the area excised for fear of possibly missing something again and then never knowing the true lesion and leaving me wondering if something will show up metastatically ..where as if I left it and there was something initially there that had been missed because of irritation it would most likely grow back in that spot and I would know for sure then that something was missed but by then it may well be mel. What would you do? I am sick to my stomach thinking about this and making the best decision. 

Thank you to anyone who is willing to chime in with experience or wisdom help of any kind-Amanda

 

Amanda

Login or register to post replies.

Pages