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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JustJaren's picture
Replies 5
Last reply 1/31/2017 - 10:48pm

Found a suspicious mole on upper back thigh, came back as melanoma. 

0.86mm, no ulceration mitosis of 1.

Great news, right?

WLE with SNB revealed "a few" cancer cells. Waiting to be scheduled for a full node dissection. 

Looking for any similar stories, recovery time for this next surgery, expectations. 

ANY info. 

I am,sadly, mostly concerned about finances. Should I file for short term disability NOW? What is recovery after complete lymph node removal?

What are my chances of getitng lymphedema? (very concerned about this)

What is the PET and brain MRI like?

I am so scared. sad

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laurelmarie1558's picture
Replies 9
Last reply 2/1/2017 - 1:15pm

Husband had a nasty mole on back that didn't look right. I kept asking him if the doctor was looking at it. (He goes in every 6 months bc of high blood pressure). He said the doctor said it looks fine. He wanted to see what it looked like so I took a pic of it so he could see it. I was on a Facebook group, "grew up in iowa". There was a thread that said post the last pic u took. That was my husbands mole. Many many people said that mole looks like cancer. So, I plead with him to just get it removed. He did. Came back malignant melanoma. We were shocked. Biopsy report said, 2.5mm,margins involved, mitotic rate 2/mm2. He had a PET scan that came back CLEAR. He had surgery to remove the melanoma and took some lymph nodes out and was told no sign in signigant pathological abnormalities identified. Phew.... now we are seeing a oncologist on Thursday and I am wondering if u have suggestions on what ?'s to ask and if u think that he will want to do any more treatments....

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Bmine102793's picture
Replies 6
Last reply 2/1/2017 - 11:16pm

So long story fiance had a mole on aem that grew large and tumored and with in a few months of that tumor growing his lymph node under armpit grew very large. I then sent him to my doctor who then sent him to a surgeon. The sugeon biopsied the growths and they came back positive for melanoma. Today we saw an oncologist who said sense it spread it was at best stage 3 sense it spread to the lymph node. The next few days my fiance will habe a pet scan and mri done to see how far it has spread. He semi explained immunotherapy. And next tuesday we follow up fpr results. I plan on going to clevland clinin for treatments and care. But i was curious about treatment like what has been most successful and side affects and how it all works.

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/31/2017 - 7:53pm
Replies by: Bubbles, MaPerny

Hi Josh,

Not sure if you decided to go ahead with TIL or not, if you did I believe you are starting the process today so sending you lots of luck and prayers.

If not, then I hope you have found the path and plan that works for you.

Maria

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AshleyS's picture
Replies 15
Last reply 2/3/2017 - 7:04pm
Replies by: Terrified, landlover, AshleyS, Anonymous, BrianP, atsea, Nemesis, Fen, Nanners10

Hey everyone,

It's been awhile since I've posted - there's such a delicate balance between being a "cancer patient " and a "normal person." Admittedly, it's a lot easier to fall into the latter category when you're doing well.

Quick history:

At 29 years old I had a changing mole on my left calf during my first pregnancy in 2012. My OB said not to worry; skin changes are common during pregnancy. About 7/8 months later, I had the mole removed. It was Stage 1b melanoma. I had a wide excision and SNB. Margins were clear and there was no lymph node involvement. I also had a clear PET. Four months later I had another very thin melanoma removed. After getting every doc's "blessing" I became pregnant again. In July 2014, at 20 weeks, I felt a lump the size of a ping pong ball in my left groin. Two days later I had it biopsied and it was metastatic. I had a complete node dissection while I was 23 weeks pregnant at Mayo Clinic. They found 4 total affected nodes. I also had MRIs without contrast, because of my pregnancy. Those were clear. We had ultra sounds every other week to check the placenta (since melanoma is one of only 3 types of cancer that can spread to baby). I refused scans and the treatment (my docs wanted to do some crazy, ineffective drug). I did agree to be induced at 37 weeks and my son came healthy in December 2014. I had scans 5 days later. Mets all over my liver, 1 on my spine, and 4 subcutaneous spots. (I was 31 by this point.) I found out I was BRAF negative. Mayo put me on chemo. I failed it, came on this board, got a ton of advice, and went on the (then trial) Ipi+Nivo combo at MD Anderson in March 2015. Long story short, I received NED status in November 2015. I will finish my Opdivo infusions in about 8 weeks.

So, I have decided to undergo a tubal ligation. My brain knows this is the right choice, but my heart is hurting. My doctor at MDA wholeheartedly believes that my pregnancies played a part in my diagnosis. So I get it. However, I didn't get to enjoy my last pregnancy and I so wish I could have another chance. Again, my brain reminds me how lucky I am to have two children (it took us 3 years to have our first) but I'm still sad. I think some of my sadness stems from the fact that this choice has basically been made for me.

As a side note, I know my husband could have a vasectomy. My doctors don't get it and my family doesn't get it, but I don't want him to do that. I feel like the folks on here know where I'm going..... Melanoma is scary and I know it could return anytime. We're still young and I want him to have options. 

I know things could be so much worse, but this has weighed on me and I feel like my wonderful friends and family can't understand. So, I'm hoping for a little pep talk from y'all!

Ashley 

 

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snow white's picture
Replies 17
Last reply 2/2/2017 - 1:36am

Spent the Day with Mom and Dad at The Angeles Clinic. First things first. Dad does not have any type of fungal infection.  Sadly, he does have signs of LMD.  As I understand it, there was no melanoma in the actual fluid, but there was an elevated protein.  She feels she has enough evidence with the MRI and testing to determine that he indeed is positive for LMD.  Interestingly enough, she is not overly alarmed by it.  She said it is very very early, the size is like a grain of sand.  She feels that it is treatable.  She said "If I am worried, I will let you know and be straightforward with you", Dad said "so are you worried" and she said "no at this point I am not worried".  The plan is : Yervoy (he had his first infusion today), he will get a MRI on his spine this week, next week he will get a blood test to determine how he is doing, he also started on Thyroid meds as his thyroid is showing low and she doesn't want it to get out of control, so he will be on a very low dose.  He will get his 2nd infusion and at that time they will re-scan the brain and body to see what happening.  We are thrilled that Dad can have some of this done close to home, such as blood tests and scans.  We have all that is needed in the way of medical facilities about 7 minutes from the house, so that will be good.

My thoughts : My stomach has been in knots since the Spinal.  Fortunately, I was able to have a private conversation with his doctor yesterday on the phone (Sunday).  I am very confident in her ability to lead us on the right path and I trust her when she says that now is not the time to worry.  Dad is doing well, and hopefully he will tolerate the news drugs.  I am going to focus on ALL of the positives and just be thankful that we found a great doctor that has our best interests at heart.  I am going to will myself to take it a day at a time, even if its the hardest thing for me to do.  Dad is alive! and I am grateful. That is  all I have for now.  I hope all of you are holding on tight, I think of you all often and am grateful for all of the support that you have given me.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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45_dps's picture
Replies 2
Last reply 1/30/2017 - 5:59pm
Replies by: BrianP

My apologies for posting a question here which I should be asking my Dr. first but I'll go ahead anyway.

The test result for my lymph node biopsy with melanoma tested positive for CD45. It seems like melanoma results typically show a negative for CD45. 

Has anyone else seen a positive CD45 stain result or do they have an explanation of what the positive CD45 result means?

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Anonymous's picture
Replies 5
Last reply 1/31/2017 - 2:04pm
Replies by: Mat, Polymath, Anonymous, _Paul_, BrianP

As the title says, over the past two years I failed IPI, PD-1 inhibitors, and now Dabrafenib / Keytruda combo (which seemed to work at first). Now I have a new tumor in lungs and one pressing on my spine. (The old lung tumors appear stable).

What are my options now, if any? Anything new over the past year?

Only thing I know of is TIL, but it sounds horrible and the ods aren't very good either.

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Hi! We’d like to invite you to join our friends at Melanoma Just Got Personal, Tuesday, January 31st at 12pm CST for their first Facebook Live event with Troy Aikman, Dr. Michael Davies, a melanoma survivor and a caregiver. This live event will take place on our Melanoma Just Got Personal Facebook page and will discuss disease, patient stories, survivorship and recognizing caregivers.

We hope you’ll participate and bring all your questions!

Date: Tuesday, January 31 at 12:00 pm CST
Location: Melanoma Just Got Personal
Panel: Troy Aikman, stage 2 melanoma survivor; Dr. Michael Davies, MD Anderson; John, cancer survivor; Donya, caregiver

Thanks!

Cassie from the MRF

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Hello everyone,

To provide some background, I've had this for a few years now and never really considered it to be anything serious. That was until my wife happened to see a Facebook post today that said it could be some sort of melanoma. The site of the black band doesnt hurt, and I can't really tell if its the nail that is black or something beneath it. However, it has never disappeared and I feel it has widened over time (not sure if this is an effect of growing up physically). The portion of the skin preceding the nail is also slightly darker than the other half which the band does not cover. The only reason I can think of which may have caused it was a wood splinter that accidentally entered the area, it was removed though. This was in my early 20′s I guess or maybe before that, I dont really remember. I'm 29 now and fairly healthy. Should I be concerned/get it checked?

Actual picture can be seen here:

http://imgur.com/a/ezn2v

Any help & guidance in this regard is much appreciated.

 

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miaka618's picture
Replies 4
Last reply 1/30/2017 - 9:49pm
Replies by: miaka618, Polymath, _Paul_

My last scan in Nov lit up with a new suspicious lymph node near my ear which came up positive after the needle biopsy. I had surgery to remove it just before Christmas. Today I am feeling around my scar and I notice what feels like the same enlarged lymph node. Did he take the wrong one or is this scar tissue I am feeling? Or is it the second lymph node in the area still swelled up from the surgery? Has anyone experienced anything like this before? I am planning on calling the Dr tomorrow, but this has me worried if he indeed took the wrong one. 

~April

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besjana's picture
Replies 7
Last reply 2/15/2017 - 6:40am
Replies by: _Paul_, besjana, Jacklyn, Anonymous, AvaL, debwray

Hello everyone!

I was reading your posts the last couple of days and I felt encoured to share my melanoma experience. I was firstly diagnosed on October 2015, nevoid melanoma, Clark IV, 1.5mm, excision in toto. Sentinel node biopsy on December 2015 resulted tumor-free sentinel. I was recommended for low-dose interferon therapy for 18 months but decided myself not to have it (regretting it now very much!!) Follow ups were ok until November 2016 where a lump appeared on my left axilla, almost at the same spot as the sentinel scar. I had to change doctors since I live in Denmark now, and when contacted with the doctor in Denmark on November 2016 they advised me to wait and see since it did not look dangerous to them. On January 2017 I had a needle biopsy to test the node. Waiting for the results now... I am scared and very anxious. I have exams in 2 weeks but I am not able to focus on studing...

All the best to you all!

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/30/2017 - 9:37pm

Hello. My significant other just call from his dermatologist 1/27/17 that he has Melanoma. The only thing that my significant other heard was that it was a 3mm . The dermatologist referred him to a general plastic surgeon for a non-urgent appointment at the end of March 2017.

Since then I have been reading your blogs and have learned a lot. What questions do we need to ask the dermatologist and shouldn't we be seeing a surgical oncologist since we will end up with an Oncologist anyway ? Please help.

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Mat's picture
Replies 11
Last reply 1/30/2017 - 12:27pm

I'll call this post--taking a break from nivo, aka "high class" problems--particularly in light of the struggles of a number of folks in our Stage IV community.  As some of you know, I've had a good run on ipi-nivo since January 2016.  I've been fortunate with side effects, though I did spend most of the last 7 months on antibiotics due to a sinus infection that would resolve and return (thought to be a side effect due to sinus inflammation caused by ipi-nivo).  Starting in November, I started to experience unexplained pain in my right ankle, which progressed to pain and swelling and water retention from ankle to knee (again, just the right leg).  Have been on 20 mg of prednisone for a while now, which helps a bit (along with Advil).  Most recent PET this week continues to be stable (no concerning uptake) similar to my PETs in June and December.  My most recent nivo infusion was in early December.  I've had approximately 20 nivo infusions in total.  We decided to take a break and revisit every 2 weeks in light of the December PET.  Now that I've had the most recent PET and continue to have the inflammation (referred to as synovitis on the PET report), the thought is to continue to hold the nivo.  Makes me nervous.  I don't want the tail (synovitis) to wag the dog (melanoma).  Celeste had a recent blog post on a similar topic, but the study involved NED patients (I'm not NED) and only a small group (and only a short period).  Again, high class problems and ones that I gladly accept versus tougher circumstances.  Of course, I continue the ongoing discussions with my medical team.  Any thoughts on taking a break and/or experience with immunotherapy-induced synovitis are welcome.

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