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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RedRobyn's picture
Replies 1
Last reply 2/19/2018 - 5:14pm
Replies by: Casitas1

Hi there! I have been having Pembrolizumab treatment for one year. My melanoma had spread to my lungs, a rib, and right shoulder. All were very small and caught early. I have since had three clear PET scans. I count myself as one very lucky woman. Just wondering if anyone has stopped treatment because there's no evidence of disease and if so, how are your side effects and have you remained clear of melanoma?

TIA

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llchelseall's picture
Replies 1
Last reply 2/19/2018 - 7:39pm
Replies by: Bubbles

My brother Jered is a Stage lV Melanoma patient in ICU sedated, with a trach on a vent. Because he is BRAF positive he is eligible to take Vemurafenib, which cannot be crushed and is acid dissolving/activated. His oncologist has not received any confirmation that this treatment can be administered successfully without being swallowed. Any ideas or insights on a patient taking a pill like this any other way than swallowing and it be effective?

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Anonymous's picture
Anonymous
Replies 0

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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I couldn’t figure out how to update my profile, I ended up dx with stage unknown/likely stage 2 (first Dr did shave biopsy and WLE that did not get all the cells with no SN biopsy) and had 2 WLE with the last one removing and 8X5 inch section of my thigh. I was cleared after the last surgery in June 2017 when the pathology came back.

 

Just like last time, bam. No changing mole, just a sudden black shiny dot that feels stiff to the touch appeared, this time on the pad on my left pinky finger. I uploaded the picture. It is the exact size, look and feel as the one on my thigh that resulted in 2 WLE, first being 2X4 inch removal unsuccessful, changes drs and the second was an 8X5 inch WLE that was successful.

Im in a panic. I thought this was all over in June. Like my thigh I have zero doubt it is melanoma. Same reaction, that wasn’t there before. Tried to scrape it off thinking it was something stuck and then harsh realization.

 

The extremely ironic thing is I found the initial one days before President’s Day 2017. Had my first surgery the Tuesday after. What does such an aggressive and soon reoccurrence mean? I have been extensively tired and bruising very easy lately. 

 

Anyone ever have it on their finger? I can’t comprehend since they took most of my left thigh the last surgery. What happens on a finger? I’m sick. I’m 40 with a 7yo special needs daughter. 

Stage 2 WLE 6/17

Current reoccurrance on fingertip.

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aldrichdesigner's picture
Replies 9
Last reply 2/19/2018 - 7:36pm

Hi Everyone,

My name is Jeremy and I'm new here. My dad has been telling me about the positive results he's read about on this site and suggested that I come on here and explain my story and see if I can find some much needed support. I'm going to tell my whole story for those interested, but you can skip ahead to the emoji for what's happening today.

In 2008, I developed a mole on the back of my lower left calf that my wife grew suspicious of so I eventually got it looked at and the doctors took immediate action and wanted to excise immediately. So, they took a small piece to test. It was positive for melanoma so they went back in for a full excision and sentinel node.

The sentinel node was positive for micro cells so they wanted a lyphnode dysection in the thigh. They went back in to my thigh and took all the nodes out of my thigh. The remaining nodes were all negative for melanoma so my doctor decided that "chemo" was not necessary. I followed up with regular skin and blood scans every six months till I hit the 5 year mark and then went to yearly after that.

In late February of last year, I began to have back pain between my shoulder blades. It lasted so long with the pain continuing to get worse rather than better so I decided to go to a chiropractor. He seemed confident that he could help because he claimed that I was a little out of alignment but everything else in his x-ray looked perfectly fine. After 3 weeks of treatment, with the cost adding up, I decided to go see a doctor about the pain.

After carefully moving my arm around and some other smaller tests he decided I needed PT that it was likely injury based. Well that didn't work and after 3 weeks of that and I am now experiencing enormous pain in between my shoulder blades but now also in my mid and lower back. A return visit to the doctor would call for a CT scan for he was nervous it was a heart condition. (This was due to testing very high in blood pressure as well, I was 308lbs at the time.)

After a few weeks of waiting my results had arrived and I had to go in to see him. At this moment I am very nervous because a small part of me knows it could be the c word but it's been 8 years and almost everything in my life was looking good for the most part. So I walk into the doctors office and sit down and say "give me the good news doc" which he responds with "well I wish that I could but... Well... I'm just going to cut straight to the point. You are probably going to want to sit down for this". A lump of nervousness explodes in my stomach and my entire body starts shaking as I sit down. "You have metastases throughout your spine and liver. It's pretty significant and we need to biopsy the area to be sure but I think you need to be prepared that what you had in 2008 has returned".

So ... That's what we did. A bone biopsy of the spine which if you've never had done is quite the experience. I was laid on a table, given a local and a sedative and with a large needle they Pierce the spine and then you hear a few clicks like they are trimming your toenails and then they are done. Well, sure as shit, Melanoma IV it is, what a frikkin' day.

In an effort of painting a better picture for you all, it's worth noting that my second daughter was born in April and I got a confirmed diagnosis in June. We also have an eleven year old daughter so we had taken a long break in the child creation department but while the tools were still working we decided on one more.

Anyway, after this dreadfull diagnosis my wife and I lost all composure and shared a long cry. But, things weren't over just yet. I scheduled an appointment to meet an oncologist but she couldn't see me for a few weeks but she was rated one of the best in town so I decided to wait. This long wait would prove to be problematic but time will tell if this was the right decision but she's been excellent so far.

My pain would grow to unbearable proportions until my appointment finally came. As she reviewed my scans she instantly decided we needed a neurosurgeon involved and that surgery might be necessary as the t2 vertebrae had significant decay and needed immediate attention. Well it would appear we were too late as that very same night my back would fracture in 3 places and I would be rushed to ER in an ambulance. Emergency surgery would be needed to repair my spine and fingers were crossed that I would ever be able to walk again.

After being in the hospital for 10 days, I was cleared to leave and cleared to begin PT and Radiation on my spine for pain and metastases. I would receive 10 treatments before finally leaving rehab and walking with a walker out of the facility. I would eventually graduate to a cane and then to nothing at all although my spine is permanently hunched a bit now so it looks like I have little to no neck now and by the end of the day my head is usually drooping down.

Upon completion of rehab in July I would begin on a regimen of keytruda every 3 weeks. After 4 infusions, we took additional scans to find that everything had shrunk and a few of which were as much as half the size as before. Although, due to excessive side-effects we decided to skip a treatment to stabilize my body again. Once that was done my oncologist decided to start me on zometa every 6 weeks and keytruda back on for every 3.

Well, let me tell you. I am not a fan of the zometa as that causes me to have pain EVERYWHERE in body. Joints, muscles, bones with it amplified anywhere that moves. But I would endure do to the positive results we we're having.

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Hi! I’ve never had any sort of experience with skin cancer or melanoma before. I’m just concerned with a growth that I’ve had for a few years now. It first appeared about 3 years ago, when I scratched an itch on my scalp and then its started to bleed. It took a while to get it to stop bleeding, but it didn’t hurt or anything. I forgot about it until eventually I noticed a small, redish nodule where I had scratched at. I’m young and was embarrassed by it, so I tried to cut it off by myself, which made it bleed pretty badly again. Over the course of the years I’ve done this multiple times. Every time I cut it, it bleeds for a while and then scabs over until it heals, and then it looks the same as it’s always been. I haven’t cut or messed with it for the past year or so, and I haven’t noticed a significant increase in size. I would estimate it to be only about 1 mm wide. It’s fairly firm to the touch, not necessarily hard but not mobile like a mole is. I’ve never been too worried because it never hurts or bleeds unless I cut it and hasn’t rapidly grown. I’ve done some web research as one does and the only thing I’ve ever found with examples that look kind of similar to mine is some types of basal cell carcinoma or nodular melanoma. I’m not a doctor and all of my information comes from google, but I won’t be able to see my doctor for a few weeks and would at least like some information from an actual human that has experience with this. Please let me know if you’ve ever dealt with anything that sounds similar. Thanks so much!

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nat75's picture
Replies 2
Last reply 2/19/2018 - 3:32pm
Replies by: nat75, Janner

in middle of dec i noticed a mole on my back that i thought looked suspicious. i showed it to my doctor and she said it was just keratosis. she did refer me to dermatologist for my peace of mind. i am still waiting to see the dermatologist because she didnt put it as an urgent request. in beginning of jan i started having other health troubles including muscle twitching, headaches, lightheadness, tingly fingers etc so i went to see doc at hospital (my doc was closed) the doc didnt think my symptoms were that impressive but i asked for brain scan which came back clear. i also showed him my mole and he said it was keratosis and nothing to worry about. since that time i have the same symptoms and others like itching all over and swollen lymph nodes. i went to yet another doctor who said it wasnt cancer.

they all say keratosis and yet i continue to worry. the mole is pink and kind of warty, raised. the thing that worries me the most about the mole is that it is painful sometimes. i read keratosis isnt painful. do you think its possible 3 doctos were wrong? or am i just being hypochondriac? because of swollen lymph nodes im now afraid it couldve spead to them. im so stressed out :(

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Special guest baseball hall of famer Mike Schmidt who had a terrible battle with melanoma but is now NED.

Go to: www.safefromthesun.org

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I have not been diagnosed, but do have an appointment with a derm in about two months. (would like it to be sooner, but have bad insurance...) 

I've had a mole on my chest that has grown a bit in the past few months. It seems to have two different colors and is slightly inregular. 

I have attatched a picture. I understand a picture cannot diagnose Melanoma and no one on this forum are doctors, but I guess I'd just like some feedback on whether I am off base to be worried by this?

Thanks https://s13.postimg.org/8uijrjos7/IMG_0846.jpg

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Abul3059's picture
Replies 3
Last reply 2/18/2018 - 11:19pm
Replies by: Abul3059, Janner

I had an excision of melanoma in situ from my right, mid back, last June 2017. Now there is a purole spot appearing almost exactly where my melanoma was, right in the incision line. I have already contact my dermatologist regarding this. I am wondering if the excision was adequate and will include the report here :

SKIN, RIGHT MID BACK, REEXCISION
CLINICAL HISTORY:
Biopsy proven melanoma in situ 4-0 Vicryl PS2, Prolene PS2
GROSS DESCRIPTION:
The specimen is received in a formalin filled container labeled "rt mid back"
and consists of an unoriented, 2.7 x 1.3 x 1.2 cm, tan-white hair-bearing skin
ellipse. The cutaneous surface displays an eccentric 0.5 x 0.5 cm previous
biopsy site that is 0.3 cm from the closest peripheral margin. The deep
surface is inked black and the specimen is sectioned from tip to tip into nine
pieces to reveal no obvious mass. (ESB/4B)
KEY CODE:
1A first one-third of the specimen, three pieces
1B-C mid one-third of the specimen containing the previous biopsy site
1B two full cross sections
1C one full cross section
1D remaining one-third of the specimen, three pieces
No time was given that the specimen was taken from the body or placed in
fixative. The total elapsed time the specimen was in fixative cannot be
determined.

I am concerned about the '0.3 cm' from peripheral margin. In her notes from the procedure, she stated that 9mm margins were measured- how could this be? I had a previous shave biopsy before this excision. Thank you!
Alyssa

Alyssa

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tedtell1's picture
Replies 11
Last reply 2/18/2018 - 7:27pm

Hi;

I am Ted. I have had a bit of a weird experience. A few months ago I found what I thought was a subcutaneous cyst on my back over my shoulder blade. It was quite deep under the skin with nothing on the surface. Checked with my primary care, no said, no worries unless it bothers you. Fast forward to January, lump is burning a little and surface has become a little reddish, go in to have it excised in a general clinic, the PA upon opening me up says, "oh, this isn't what I expected". Sends it off for biopsy. A week later I get the results, The tumor (not in a lymph node by the way) is a secondary metastatic melanoma. We have no idea where the original tumor was. I have now met with an onco, pet scan is clear except for leftovers in my shoulder which will be excised in the next month. MRI of my brain clear as well. That was all good news. I am diagnosed stage IV, is that  appropriate since it has not spread to lymph or organs? I am starting Nivo every two weeks for the next year. Would love to hear if anyone else has similar experiences and what I can expect from the Nivo infusions. Do people have ports? Any info is appreciated.

Ted from Minnesota

 

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In the Profile section, year of diagnosis only went to 2015. It's been updated, so if you left it blank it can now be added. (I had wondered about year when reading a long history and it just said "January" for initial diagnosis. This year? Five years ago? The board communications guru was nice enough to fix it right away.)

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Jac1211's picture
Replies 2
Last reply 2/16/2018 - 10:47am
Replies by: Janner, bjeans

I was diagnosed in situ at age 29, only 7 months ago. My mole was a small change that seemed to happen over night. I had been for a mole check only 4 months prior and everything went well. The change prompted me to go back in and I’m glad I did.

Fast forward till now. I go every 3-4 months for full body checks which is normal but I’m noticing some small changes in between that time and have scheduled a visit to get that one spot checked. So far so good. Today I got another spot removed (1 month away from my full body check) because I took pictures and saw the change. My doctor told me that she wants me to see the nurse practitioner for a new set of eyes for my next full body check. She also said they’ve been seeing me a lot and want to see me every 3-4 months not 2. I asked her straight up, if she thought I was just being paranoid and she didn’t say anything. Of course I feel paranoid, my melanoma presented as a minor change. Has anyone had a doctor say they need to see another doctor / NP in the practice? And has anyone felt that their doctor made them feel overly paranoid? I feel like an annoying patient by her attitude and that is the WORST feeling ever.  But if it wasn’t for my hypersensitivity, i could’ve had a worst outcome.

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/19/2018 - 2:21pm

Hi --

 

I had nodular melanoma just about a year ago on my back, and now am feeling a couple of small lumps under my skin -- almost hard to detect.  I had a wide excision done and had four doses of Yervoy.  One lump is under my front rib and the other is close to the original site.  I'm waiting to hear back from my doctors on next steps, but has anyone ever had this happen where it wasn't melanoma?  If you did have lumps that were melanoma, did you have any other symptoms?  Feeling very anxious....

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obtu.bt's picture
Replies 11
Last reply 2/19/2018 - 10:41am

Dear all,
My oncologist suggested me to make a pd-l1 expression level test.
I did it and I do not have pd-l1 on my tumor.

So should I use opdivo or not?
I am confused about what to do for further step.

Effectiveness of Opdivo increases with higher pd-l1 level...

Awaiting your comments.

Have a nice day.

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