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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Cyndie in Texas's picture
Replies 20
Last reply 8/2/2019 - 8:22pm

Hi Everyone - My brother and I went to see the surgeon yesterday and while I am trying to remain positive it has not been easy! I wanted to post the pathology results because I finally got them yesterday from the nurse.
Diagnosis:
Superficial Spreading Melanoma
Breslow Depth: At least 4.90 mm
Clark Level: at least IV
Ulceration: Not Identified
Mitotic Index: 7 Mitosis/MM2
Microsatellitosis: Not Identified
Lymph-vascular Invasion: Not Identified
Perineural Invasion: Not Identified
Tumor Infiltrating Lymphocytes: Present, non brisk
Tumor regression: Not Identified
Vertical Growth Phase: Present
Tumor Stage: T4B
Margins: Peripheral margins involved, deep margins involved

The sections show the microscopic features of an atypical nevomelanocytic lesion most consistent with melanoma. There is an asymmetric proliferation of atypical melanocytes along the dermoepidermal junction as single cells and large confluent and irregular nests. The nests vary in shape, size, and distance from one to the another. There is focal intraepidermal (pagetoid) spread of melanocytes above the basal cell layer. The atypical melanocytes and nests invade into the dermis to a measured depth of 4.90mm, as measured from the top of the spread. The individual melanocytes are enlarged and show smoky cytoplasms. The nuciel are also enlarged and hyperchromatic and many show prominent red nucleoli.

Surgery is on 8/15. Surgeon is going to remove the tumor on the scalp and get clean margins (2cm) around it and then graft skin from his groin to cover the area. He will wear a VAC pump for 5 days over the wound. Surgeon will also do the lymph node biopsy; however, my brother is having a CT scan next Monday, 8/5, and if the cancer has spread then he said it wouldn't be necessary. My brother is a heavy smoker and the surgeon told him he must quit yesterday because the graft will not be successful if he has nicotine in his body. Kept hearing over and over from the surgeon...very serious, tumor thickness is very high, deep depth, etc.

Next steps: CT scan Monday morning, blood work, and meet with Oncologist Monday afternoon. Nurse said we would have results of scan when we meet with his Oncologist. I asked my brother if he wanted to get 2nd opinion and he said absolutely not. He wanted it scheduled, done and didn't want to drive 4 hours to Houston. In a way I don't blame him and I can't force him.

I am not even close to being a doctor but when I look at the pathology report and listened to the surgeon yesterday it all sounds very bad. With that being said, I know that he will get through this and it is far from a death sentence! The treatments that are now available will get rid of this nasty and horrible cancer if that is where this is headed. The surgeon said that it's almost better if it has spread because then they can get it with treatments vs. if it hasn't he will have to come back every three months for a scan. I can't imagine having to go through the waiting every three months. What is worse?

My brother is a Vet...a proud man, a very hard worker, very stubborn and has never had surgery. After the appointment he hugged me and sobbed and sobbed and told me he was so scared. This has brought him to his knees. He doesn't have a significant other and currently lives in a sober house (successfully completed rehab for alcoholism in Nov of last year) and has to now move out of the house because all of the men in the house smoke and he absolutely cannot be around 2nd hand smoke. I keep telling him he is a Warrior and he will survive this!

Cyndie in Texas

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ed williams's picture
Replies 6
Last reply 8/2/2019 - 8:04pm

Well this was a surprise to see NKTR-214 + nivo get a special breakthrough therapy designation with FDA. Many of us stage 4 folk have been following the pipeline of new drugs especially in the melanoma resistant area and for the last two years this combination has been getting a lot of press but mainly for lack of trial information being provided at oncology meetings like ASCO. I will give a couple of links that cover the breaking news as well two video's that cover the topic from how leading oncologist see the development of this new combination. https://www.onclive.com/web-exclusives/fda-grants-bempegaldesleukin-plus... https://news.bms.com/press-release/partnering-news/nektar-therapeutics-a...

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Kingdom5454's picture
Replies 5
Last reply 8/2/2019 - 5:45pm

I remember when I first joined this website I was just looking for a sign of hope. Just looking for someone who had the same surgeries, diagnoses , or anything I could relate my story to with a positive outcome. I’m coming up on three years and just had clean scans. I was diagnosed with stage IIIc melanoma and not a good outlook. I had the highest Motoic(sp)rate that any doctor in Chicago has seen or I have found on this website. It was 50! My doctors were sure they were going to find it somewhere else in my body. I was told hope for the best but expect the worst. And that it wasn’t a fact of if it was coming back it was a when it comes back outlook. I had a complete neck dissection where they removed 98 lymph nodes and the cancer being in six of them . I had four high doses of yervoy. Inflamed my pituitary knocked out my thyroid and adrenal’s. my son at the time was just a little over two years old.
I was scared shitless to say the least!

Fast forward to three years I’m still here now with two kids my daughter is now nine months old. I still suffer daily with my adrenals and thyroid but you know what I’m still here. I just want someone to read this that is nervous or scared and know that there is hope.

I pray every day for each one of you. I pray for the ones we have lost and for the families that have suffered. I pray that sometime soon there will be a cure. I know some people feel alone and they don’t have anyone to talk to you but this board is truly amazing. Some people on this board take a lot of time out of the day to respond and comfort people as best as they can. There’s too many names to list but those people are amazing ! I don’t post on here often and I’m sorry for that I’m just not good with coming out of my own shell about this.

God bless everyone

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Lou39's picture
Replies 7
Last reply 8/2/2019 - 1:46pm

Hi, I posted a little while back about my Dad, who unfortunately has stage IV melanoma. The melanoma has spread to his liver and possibly his spine. He had his first treatment of Opdivo/Yervoy 3 weeks ago and has been feeling very unwell since, which we thought was due to side effects from the medication. He went into hospital today for his second treatment to be told the results of a blood test from last week indicate that his liver is inflamed. An ultrasound today has confirmed the inflammation and my Dad now has to take a 5 day course of steroids. If the steroids work then treatment can recommence in a week. Has this happened to anyone else before and their treatment has recommenced?

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Replies by: Gene_S, ed williams, Bubbles

Believe it or not, a safety testing on the active ingredients in sunscreen has never-before been conducted. This is because the chemicals were approved decades ago, before anyone thought they could be absorbed into the body.

https://www.wakingtimes.com/2019/07/31/fda-analysis-reveals-sunscreen-ch...

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

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gopher38's picture
Replies 3
Last reply 8/1/2019 - 10:57pm

Hello,
I had my 1.5 year scan today, and the great news is that they still haven't seen any sign of metastatic melanoma. I was a little worried though, when the nurse said she wanted to pull up my scans for the doctor to discuss with me. What he showed me is that there was one "cloudy" area in the lung that was already visible on the last scan 3 months ago, but is a little larger and more visible now. He said it doesn't at all look like he would expect melanoma to look (although can they really know by looking at a computer screen?), but he said deserves some scrutiny. On the report, it said:

"Ground-glass nodule in the left upper lobe measuring 9 mm in diameter, which could be due to infectious/inflammatory process, or possibly indolent/slow growing primary lung neoplasm."

Unfortunately, infection doesn't seem likely to me, since it was there 3 months ago, and I wouldn't think that would last 3 months. I've heard this ground-glass term used a couple of times here, but I thought it was for a dead tumor, which this isn't, because it seems to be growing, albeit slowly. Anyway, no melanoma, which was the primary concern, and the above obviously doesn't sound like a "house on fire" situation, but I'm wondering how common/worrisome a "indolent/slow growing primary lung neoplasm" is? Wonder if my immunotherapy could have been keeping it in check. They use those on lung cancer too, right? Anyway, I'll be very curious for my next scan. Glad I'm in the clinical trial now, because it will only be 3 months, instead of 6.
Ciao.

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MelanomaMike's picture
Replies 14
Last reply 8/1/2019 - 9:41pm

Hi Family, well, spoke with my onco, shes not giving me a referral because Kaiser is NOT done treating me, another words, that appt i have with Dr. Jang is like Part 3 to my treatment, most likely Proleukin (IL2) inpatient or clinical trials. She also went on to say that Dr. Jang has experience treating Melanoma as well as 2 other oncologists that work with him. She went on to explain that Jang may not be a quote
"Melanoma Specialist" unlike Dr. Hamid (the one i want) who chose to be a quote Specialist in Melanoma and ONLY treat Melanoma wich was Hamids choice as a medical doctor...Talking with her about it kinda set my mind at ease, ill still see the cat Aug 15th to see what his plan will be, but a referral isnt happening til Jang cannot treat me any further due to disease progression, "Then" a referral would most likely be granted to Hamid of the Angeles Clinic. I kinda get it, makes sence, im still PISSED though, i want HAMID!.....
So, thats where im at, if theres anyone else here at MRF who has taken IL-2 PROLEUKIN med, please reply as well, i wanna know how you all did...and what about these Chemo based meds, Dacarbazine or Paclitaxel and Carnoplatin?? I was offered this after Pembro failed, but went ahead with the Ipi/Nivo last year in May...thanks guys for helping me, lets check this Jang cat out ok?

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Anonymous's picture
Replies 7
Last reply 8/1/2019 - 2:56pm
Replies by: Anonymous, kylez, DZnDef, scmcelroy, stars

I have melanoma insitu on my nostril.  Everything I read and the couple of doctors i have seen want to do MOHS surgery which has the potential to take off half my nose if not more depending on whether they get clear margins. The unknown of not knowing where the stopping point is is terrifying me.  Maybe to the point I'm willing to not do anything.  Since it is insitu it may take a long time to spread if it and when it does spread - right??  I've heard a little about this Imiquimod cream.  Does anyone know anything about it?  I've heard that it is sometimes used when the potential for disfigurement is a possibility.  It just seems like i'm hearing so many cases of having it and then having surgery and then having it reappear somewhere else.  An endless cycle.  How many people out there are walking around clueless that they may have this and live a fairly long fulfilling life without the constant fear that now invades me.  I think sometimes we are our worst enemies by trying to always be one step ahead of our health.  Don't get me wrong, i have always been proactive in my health care.  But i am just having a heard time believing that by cutting off half my face that my life is going to be so much better.  Depression will surely set in and succomb a portion of my time before i get back on my feet and rise above it.  When talking to people i feel like i am the only one who feels this way.  You say the word cancer and everyones life immediately changes because they choose to try to defeat it.  Quality of life is more important than quantity in my opinion.  People suffer through chemo and all of these treatments that are out for what?? I few extra years on their life.  I've always heard once you cut on someone for cancer it has a greater chance of spreading and there are cases where i honestly believe this.  One minute i am ready for surgery the next no way.  I don't know how to be at peace with either answer.  Anyhow, thanks for listening and GOD be with all of you.

 

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Replies by: Cyndie in Texas, lkb, Lucas

Excellent case presentations of actual patients and how they were treated by 3 of the best in the business!!! I can't remember if you have to join Research to practice to watch these video's but if you do it doesn't cost anything and they don't spam you afterwards. First 30 min is adjuvant patients. Best Wishes!!!Ed https://www.researchtopractice.com/ASCOMelanoma19/Video?playlistIndex=0#...

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Ch256706's picture
Replies 10
Last reply 7/31/2019 - 8:06pm

Hi all,
I was diagnosed stage 3a last year and just finished 26 treatments of opdivo. Initially, I had three pet scans last year (June, Sept, Dec) which were all clear and then my insurance denied my pet for March this year and I had a ct scan instead which was clear. I am due for my 3-4 month scan and they denied PET again and I have a CT scheduled for tomorrow. Should I be appealing the PET denial? I’ve heard CT are not as accurate and I don’t know if they will even approve anymore pet scans?? Is anyone else having this trouble?

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Sabrina Matchulat's picture
Replies 6
Last reply 7/31/2019 - 7:09pm

My husband, Pete, now 61, was diagnosed with Stage IV malignant melanoma in February 2017. He had a huge lymph node removed from his right neck region along with 33 other nodes which were clean. This surgery took place at MD Anderson in Houston. In July of that year, after recovering from surgery, a PET scan revealed a lot of growth: Spine and brain mets, mets to hip bones. He underwent some local radiation to the neck and then targeted radiation to the brain mets at the base of his skull. He then started on Yervon/nivolumab and progressed to just nivolumab. He tolerated his immunosuppression fairly well. Main side effects have included itching, fatigue, a "foggy brain" and some sporadic morning nausea but so far his PET scans have revealed no progression. Doc doesn't know how he walks with the spine in the shape it is and recommends lifting "nothing heavier than a jug of milk" He is stubborn, however, and continues to "work out" daily (although not to the extent that he did before all this). I know this has really helped with his physical and emotional strength. Bottom line, he is coming close to the two-year mark of immunosupression. A success story for sure! He We are very thankful to have come to this point. Soon will be the two-year mark and he will make a decision to continue or stop the therapy. There doesn't seem to be clear-cut evidence one way or other, although the oncologist recommends continuation..

This month the insurance denied doctor's request for a PET scan on the basis that the brain MRI and past PET scans have not changed.. Doc is recommending a bone scan/CT instead but this will very different than the PET scan so he wanted to go over the interpretation with us after it is done.

Just wanted to get his experience out there to give others hope who are immunosupression - we do certainly believe it saved his life! (oh, and PRAYERS)

Sabrina

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MelanomaMike's picture
Replies 2
Last reply 7/31/2019 - 7:01pm
Replies by: MelanomaMike, MovingOn

Hi guys, anyone know about our Mel peeps MRF name "Khubes" (Katie, the wife of Mel patient) and MRF name "MovingOn" (forget his name)???? I haven't seen posts since early April of this year, did I miss anything? Did I miss a post? Please reply if anyone knows what's up with them....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Jewel's picture
Replies 6
Last reply 7/31/2019 - 5:35pm

Good morning, My husband Ken got his results back from his Pet Scan and final impression was an isolated 3.2 lymph node in inguinal node. Already biopsied and confirmed Melanoma. We see the surgeon next week to discuss removal. Ken had a 4 year response to Yervoy before this latest recurrance. Oncologist is suggesting the Yervoy/Opdivo combo. My question is why does he have to do both? Wouldn't Nivo be sufficient and if he was to progress add the Yervoy? I know he had a 4 year response but we all know Yervoy can have some nasty side effects which luckily he tolerated well. Final decision obviously will be after surgery. Thank you all.

Cammy & Ken

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Momto3's picture
Replies 23
Last reply 7/31/2019 - 2:08pm

So if got my SLNB back and the surgeon sad that there was a “speck”as she called it in one lymph node. When they did my lymphatic mapping, the traser/dye went to both underarms so she took nodes from both. I had a 1 mm spot in the first node from the left side. No other (out of the 10 she took total...5 on each side) and margins were clear around mole biopsy area on my back. Next I’ll have a scan and then go to the oncologist. (Melanoma Oncologist). I’ve read several places that most do not take immunotherapy for stage 3 a. My original pathology was 1.5 mm no mitosis, no ulceration, no regression....it scares me to think of not taking some kind of treatment because I’ve read so much about it coming back and spreading. Thoughts? Questions to ask the oncologist?

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murnaloo's picture
Replies 9
Last reply 7/31/2019 - 10:51am

Hi all,

I've searched this forum and couldn't find anything posted on this topic, so apologies if I overlooked something.

I have been using sunscreen since 1982, when I was diagnosed with lupus. The pharmacy used to have to special order it in SPF45 because you just couldn't find such sunscreens - but you could find loads of sun tanning oils!

A melanoma diagnosis in 2016 came as a bit of a shock, but did make me realize I'd become rather lax about coating myself in sunscreen, which I now do religiously. However, EVERYTHING I touch is stained with sunscreen. This includes my car seat, my purse, my shoes, our kitchen table.

Are there any high-quality, effective sunscreens out there that don't stain?

Or, are there any cleaners that get sunscreen off of leather, wood, etc.?

We rented a car last month for a long weekend. I wore shorts and sunscreen the whole time. When we turned the car in, the passenger seat wher I sat was a whole shade lighter thanks to the white sunscreen stains.

Thanks all!

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