MPIP: Melanoma Patients Information Page

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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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Frannie55's picture
Replies 5
Last reply 1/9/2020 - 4:58pm

I haven’t visited this site in 8 years. I’ve been NED for 10 years. The only treatments I’ve had were surgery and high dose interferon when I was at stage II. In 2010 I thought that I would be gone in a couple of years. I chose to live my life on my terms and continued drinking beer and smoking cigarettes. The only change I made was adding mushroom complex, tumeric, cinnamon, and vitamin D3 to my diet. I need a spinal fusion desperately but in order to do that I had to quit smoking and drinking, no easy task since I am a full blown alcoholic. Well as luck would have it my family did an intervention with me a month and a half ago and sent me to rehab. I have been sober and tobacco free for 52 days. So I had what I had hoped would my last PET scan the other day. Of course it showed uptake in some lymph nodes. I had told my spine doctor that beer and cigarettes were keeping me safe from my melanoma. And it looks like I was right! Please understand that I am laughing as I write this. I’m not upset about it, however, I do hope I don’t go out and buy a case of beer and carton of cigarettes!
10 years is a good run and there are so many good drugs out now that weren’t available when I was first diagnosed. It’s a good day to be sober.

Believe that you can or believe that you can't. Either way, you are right. - H. Ford

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I had a basal cell carcinoma removed in Aug 2013(lower leg on shin). When I rec'd the pathology report it mentioned MART-1 stain was used to confirm the diagnosis. I always thought that was strange and asked several questions at the time and the only answer I rec'd is it was done to confirm the diagnosis.

I noticed some pigmentation adjacent to the scar approximately 2 years later and pointed it out to my dermatologist multiple times since. I also experienced some itching in the area over the years. It was always dismissed as something that was unrelated to the previous procedure and appeared to be "normal" pigmentation. I was convinced it did have something to do with the previous procedure(MART staining for basal cell carcinoma). I was in two weeks ago for a routine check, pointed it out again, they said it looked fine but would biopsy if I wanted them to. I confirmed I wanted it removed and they performed a shave biopsy.

Last week I rec'd a phone call from the dermatologist...and....

*********
B. Left anterior lower leg, shave of skin: ATYPICAL JUNCTIONAL MELANOCYTIC PROLIFERATION IN A BACKGROUND OF PIGMENTED ACTINIC KERATOSIS. SEE NOTE.

NOTE: Immunohistochemical studies with MART-1 and Sox-10 show an increased density of melanocytes at the dermoepidermal junction along with pagetoid upward migration.
Although not entirely developed, but the findings are worrisome for an evolving melanoma in situ in the background of pigmented actinic keratosis. The lesion is within less than
0.1 mm from peripheral tissue edge.
**********

They have scheduled me for Moh's surgery. I was surprised by this thinking a simple re-excision with 0.5-1 cm margins would be sufficient. I've had several in-situ diagnosed in the past that were simply re-excised. I understand the shin/front if the leg is a little tricky. I thought the purpose of the wle re-excision was "curative" and also diagnostic from the standpoint a larger "sample" is taken and evaluated which can confirm(or change) the original interpretation.

I'm a little concerned about Moh's as the follow-up for several reasons. I read 12-15 years ago Moh's was not routinely used for melanoma due to some concerns about melanocytes "bridging" or jumping rete ridges(pardon my terminology if not correct) and also concerns about processing frozen specimens. I know technically it is a borderline lesion, but want to make sure that it is okay to have this re-excised via Moh's. Also, they didn't schedule me until Mid-March. Is it okay to wait this long?

Sorry for the long post! Any/all comments are appreciated!

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Casey301's picture
Replies 1
Last reply 1/6/2020 - 1:56pm
Replies by: JudiAU

Hi everyone. I had a dark, oddly shaped atypical mole in March 2018. First they did a shave biopsy, it came back as a compound nevus with moderate atypia. Then, because pigment remained and I was uncomfortable with just the shave biopsy, I had a full excision. Results came back the same, a compound melanocytic nevus.

About six months later, a brown pigment appeared over the scar of the excision. I had a shave biopsy, and the results were “epidermal hyperpigmentation above a scar, there is hyperpigmentation of the basal layer of the epidermis above a scar.”

Now, about a year and a half after that, the pigment returned. I am confused. What is returning exactly if I had an excision? Is it a brand new pigment over the scar, that had nothing to do with the original nevus?

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Anonymous's picture
Anonymous
Replies 3
Last reply 1/6/2020 - 8:26am
Replies by: ed williams, Anonymous, tedtell1

Hello, I know this really isn’t the best place to be asking this but I don’t really know where else to go. I had a mole removed that came back severely atypical and my dermatologist told me I have to go in and get it all taken out. I forgot to ask how much would be taken out and how big of a cut I should expect. It’s scheduled for this week and I’m just wondering if I’ll be able to go to work after. I’m a server. Any one who had this done that can give me some insight that would be helpful. Thanks in advance.

B

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MikeInAK's picture
Replies 6
Last reply 1/11/2020 - 11:34pm

Received CT scan at end of 2019, results came back with great news, no evidence of disease. It's been a long year, but my oncologist is encouraged and I am stopping my Nivo (Opdivo) bi-weekly treatments after 25 of them. So lucky to be moving on to the new stage of monitoring by my care team, and not in active treatment.

Thanks to all the support here, I will of course continue to monitor and lurk, and post if I can contribute. I know over the last year we get posts here wondering if people diagnosed with Stage III C have a chance of going NED, I am happy that I am blessed on being one.

Keep up the fight!

Stage 3C - Nov. 2018 9mm ulcerated nodular tumor primary on back discovered; Dec. 2018 WLE and SLNB (3 mets right and left axiila L 9mm, 2mm and 1mm); start Opdivo immunatherapy January 2019. 

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ourvan's picture
Replies 6
Last reply 1/5/2020 - 8:51pm

Hey Mike - Happy New Year!
You just popped into my mind, and I'm sure you're on the minds of others as well, so I wanted to give you a shout-out and see how you're doing?

laurie

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Summer S.'s picture
Replies 7
Last reply 1/7/2020 - 8:09am

Hi everybody,

I hope the new year brings health, good news and vitality for all of us.

We are currently considering IL-2
Does anybody has experience with it?

How does it go? Is it worth the shot? What are the early success indicators?

Thanks!

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Johnjk04's picture
Replies 4
Last reply 1/8/2020 - 4:23pm

All of us fighting melanoma should be giving much thanks to Dr. James Allison. He is the doctor / researcher that finally figured out a big part of our immune system. Dr. Allison had to argue with plenty of pharmaceutical people, researchers and also fellow doctors.

His movie “Jim Allison Breakthrough” has been shown in several locations. It has just been announced that Amazon is retailing his movie. It will be $5 to rent, $10 to buy and $20 for the DVD.
A lot of people are intrigued by this movie. Might be a good movie to have around on the next wintry day.

John J Kissane

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jennifer83's picture
Replies 6
Last reply 1/11/2020 - 11:45pm

Hello all,

My first ipi/nivo infusion was 11/30/19 and besides some nerves that made me sick in the first few hours, everything went well. I did get the rash in week two, but it wasn't severe and I was able to handle the itch. It went away before my third treatment. I did develop some new, fleshy, pink/colorless lumps on my scalp. I also am having blurry vision - off and on, but it's pretty bad when it's on. I had a doc appt at MD Anderson before my second infusion where we went over these symptoms.

Doc referred me to a dermatologist re: new scalp lumps, and to a ophthalmologist re: blurred vision.

I had my second ipi/nivo infusion on 12/21/19. Other than the clinic running two hours behind, and a nurse who busted one of my veins pretty well... all went smooth. I'm two weeks in and kind of feel just like I have a bad cold - even though I don't. My muscles feel odd... when I stretch, the stretch feeling lingers long after I'm done stretching and I can only describe this as feeling like I have a tad of muscle weakness. But for the most part, I feel fine! I want to sleep as much as I can, but who doesn't?

I met with the dermatologist last week regarding the new lumps on my scalp. She did a full body skin check and ended up doing a scrape biopsy on the scalp and a punch on a suspicious mole on my back. I have two questions on anyone who'd like to weigh in:

1) Is it odd that I was diagnosed 10/29/19 with Stage IV melanoma through a breast biopsy, yet haven't had a full-body skin check to even look for a possible second primary?

2) Also, a punch biopsy on a suspicious mole and a scrape on the new lumps that popped up on my scalp - does it really matter if they come back as melanoma? I'm already going through treatment, it's not like there's anything else they can do, right? Or do I have that all wrong?

As far as the ophthalmologist, he's booked through February - so it's one of those "call every day and hope for a cancellation" kinda things.

Just wanted to give an update to anyone who has been following... plus, it's therapeutic just to kind of write things out!... so thanks for reading :)

Jennifer

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Tsvetochka's picture
Replies 3
Last reply 1/3/2020 - 2:32pm
Replies by: Bubbles, tkoss, tedtell1

Is it possible that my veins are starting get scarred or something? I've had 10 Keytruda infusions and a few other IV treatments since April/May. Objectively, that doen't seem like a lot to me, but the most recent time was almost a week ago, and both my arms are still bruised and sore. They couldn't get a vein in one arm; and had to go for the other; that was a first for me.

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Affected's picture
Replies 2
Last reply 1/2/2020 - 9:50pm
Replies by: Affected, Mark_DC

Thank you very much Tex, Ed, Mark, Steven, Bill and Daughter of Cancer Patient for furnishing me with your first-hand experience and knowledge of scans after a melanoma diagnosis. A new issue crept up today though. After spending several hours in hospital, we managed to see our oncologist who has now set up an appointment with a dermatologist to see my husband's rash tomorrow. Based on this dermatologist's assessment of the rash, my husband's biweekly Nivo treatment will be continued or postponed. I don't know what I should be asking or researching now. The melanoma is moving too fast for me once again. Because of this bad rash (possibly grade 3 Adverse Event)should we still push for a CT scan? Could a CT scan aggravate a bad skin rash? I would think not, but I know I am not thinking right at the moment. A friend of mine passed away this last Saturday from brain mets; another friend earlier on in the month. The funeral is tomorrow; same time as the dermatologist's appointment. Maybe I should be pushing for an MRI of my husband's brain instead. I am rambling on. I'm sorry. I would like to again sincerely thank you for your support today; despite my lack of good news, I do not feel as if I am alone. Thank you. Thank you very much.
Affected

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/30/2019 - 11:32pm
Replies by: mrhubahuba

Hi all, my father was on yervoy / opdivo for stage 4 Mets melanoma. He did his first treatment 3.5 weeks ago. When we went back for the second dose, he was unable to take it due to very bad levels in his kidneys and livers. Doctors can’t give him
The combo anymore because of how bad the liver is.

We just switched to Mektovi. Does anyone have experience with this? It seems they are using this to suppress cancer growth in his liver.

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RRF2208's picture
Replies 1
Last reply 12/31/2019 - 8:47am
Replies by: tedtell1

Hello, I am a 60 year old woman, fair skinned, red haired. I was never a tanner but did spend a lot of summers outdoors as a child without sunscreen. At age 29 I was diagnosed with a very superficial BCC that was removed with MOHS and has not recurred. I have multiple seborrheic keratoses and have had an actinic keratosis treated. One cousin on my father's side had a melanoma some years ago that was treated and did not recur.

10 days ago I noticed (out of the blue) 2 small red spots on my upper left thigh (one is about 4 mm, the other 3 mm). I am very observant of my skin so I know that these were not there previous to that date. I had recently had a virus with fever and wondered if they could be some kind of skin reaction. They literally popped up overnight.

10 days later the two spots look a bit less red, but are still noticeable. They have not grown, but they have not decreased in size. They are slightly scaley and are relatively flat. They are sort of oblique in shape, not round. The borders are not regular. They do not itch or bother me. They do blanch (fade somewhat in color) when I press on them with a glass.

After googling at some length I am concerned that these lesions may represent amelanotic melanoma.

Worrier that I am I made an appointment with my dermatologist, but the best doctor in the practice can't see me until Feb. 7.

My understanding after doing much reading is that amelanotic melanomas do not represent a more aggressive form of the disease, but may carry a slightly worse prognosis because their atypical presentation causes them to be discovered at a later stage. I am hoping that if this is what I do have, I have found them early and that will be to my benefit.

Nonetheless, I am wondering if I should try to get in to the derm before Feb. 7. , since I am quite worried. I really like this particular derm (the one who can't see me until the 7th) and have a lot of confidence in her -she is super smart - however there is another doc in the practice who is very good clinically and is also trained as a dermatopathologist. However, he has absolutely no bedside manner and I just don't like him. There is a third derm in the practice who is easy to get an appointment with, but she is terribly young and inexperienced.

My other question is, I know from experience with this practice that they always do shave biopsies, and I am reading that shave biopsies are not the way to go when melanoma is suspected. Should I insist on a punch biopsy? I am not sure that they will do one at this particular practice. I once had one for something else but that was with a plastic surgeon, and it will take forever to get an appointment with plastics.

Finally, how common would it be to present with two amelanotic melanomas at the same time?

I appreciate any feedback. Thanks much.

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Affected's picture
Replies 9
Last reply 12/30/2019 - 5:24pm

Hi Everyone,

I hope everyone is having a good time during these holidays. It is our first Christmas and New Years since my husband was diagnosed with melanoma in June. For everyone who has just recently been diagnosed or has received bad news in the last few weeks, please know that I am praying that you get the strength to continue to deal with the anxieties and fear that melanoma brings. My husband had his parotid gland(salivary gland)removed and a CLND (completion lymph node dissection) at the end of July after which he had 6 weeks of radiotherapy. I am still waiting to get confirmation whether he is Stage 3b or 3c. He began his one year biweekly adjuvant Nivo immunotherapy at the same time he began his radiotherapy. He has not gotten any scan since his surgery on July 23rd, so we have been pushing the doctors to schedule one. His oncologist wants to wait until March in order to give the immunotherapy a chance to do its job (in case the surgeon did not remove all of the melanoma when he took out the tumor!) However, since 2 lymph node involvement was discovered during the CLND, we feel the sooner he gets a scan, the sooner we can confirm whether there has been any metastasis and change his treatment if so needed. We managed to get his radiologist to schedule a full body CT scan on January 8th, (5 and 1/2 months after his tumor removal). According to what I have read in these posts, it seems most people get scans about 3 months after surgery and continue to do so for approximately the 1st year after surgery. I am also very confused as to what type of scans he should be getting as PET scans, CT scans, and ultrasound scans have all been mentioned in these posts.

So the advise I am seeking is:
1. Should my husband get scans done this coming January or in March?
2. What type of scans should we be requesting?

Again, thank you very much for taking the time to read this post, and I truly wish everyone a safe and healthy New Year.

Sincerely,
Affected

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studiodad's picture
Replies 5
Last reply 12/29/2019 - 3:27pm

Just finished five immunotherapy treatments with Opdivo. The second visit resulted in extreme low back pain just 5 minutes after Opdivo infusion. Pain medication was immediately added to iv and we waited about 15 minutes until infusion continued at 60 minute rate instead of 30 minute rate as planned. The third treatment— with pain medication placed into iv before Opdivo— same result at 5 minutes. More pain medicine and short wait before infusion continued. Fourth treatment with more pain up front, no back pain and 60-minute infusion completed. Fifth infusion with a lot of pain medication, low back pain at 12 minutes. Same procedure to complete immunotherapy that visit. I have now been informed that next treatment mid-January will be my last visit and I will be taken off Opdivo if I experience low back pain during infusion. Keep in mind all incidents occurred during infusion, not as a side effect after infusion. Anyone else hear of this complication. I have stage 4 metastic melanoma affecting the subcutaneous tissues. I have no tumors. I did have an original tumor on my side that was respected and bone cancer in my scapula that was radiated. Any ideas.

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