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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Butterfly74's picture
Replies 15
Last reply 5/4/2020 - 11:33pm

Hi
I am new to this forum. I'm hoping people can help, I have recently been diagnosed as Stage 1a with a thickness of 0.7mm with no ulceration or zero mitosis. My doctor says we have caught it early but I am very worried about the Clark Level which is 4, meaning it is deep. I'm worried that this makes me more advanced than Stage 1. I am having a wider exercision of 1cm around the site in a couple of weeks. I am struggling to deal with all this.
Thanks for any advice.

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Replies by: Beany

Hello everyone,
I feel very frustrated. I am receiving treatment in Japan for lung and liver mets. All was going well with shrinkage until the third cobo of nivi/ipi until liver enzymes spiked. Then after entering hospital they dropped by themselves without steroids as below:
Date AST ALT
4/16 242 557
4/17 174 450

I have been on 35mg of prednisone for three days since 4/17 from midday. Next blood test is tomorrow. Do you think it is possible they will continue to move slowly or might they suddenly drop quickly? The liver doctor here said I cannot leave hospital until they fall below 100. Isn't it a bit over the top making me stay in hospital for 35mg of prednisone?

Regards,
Adam

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Anonymous's picture
Replies 1
Last reply 4/19/2020 - 11:31pm
Replies by: JudiAU

Hello,

I have not currently been diagnosed with melanoma, but I'm waiting on a few biopsies. I'm only 29. Unfortunately as a teen, I I used tanning beds here and there. It was never consistent and I haven't been in one in at least several years, but I know the damage they cause now. I didn't know then.

The most suspicious looking spot on my skin was no bigger than a freckle, but the shape was weird and had two colors. The derm I went to see said she was "okay with watching it", but I had said I didn't know how long it had been there, so she did a punch hole excision. It presented no symptoms. I would say it was no bigger than 2 mm length wise and 1 mm width wise. Seemingly innocuous based on the small size, but I know these things can start out small.

Looking at my left thigh, I also noticed a dark freckle. It is no bigger than a small dot, it's round, but it has a darker brown center and it's lighter aound the edges. I don't like the looks of it and set up an appointment to hopefully get that excised and biopsied as well. The derm that did the first excision said the one on my thigh was nothing to worry about, but I'm stressing. I can't really eat or sleep.

Is it possible to have 2 melanomas at the same time? I have one mildly dysplastic nevus so I know my body makes weird moles, but I don't feel good about this. I currently feel like my life will be ending soon literally and figuratively if I'm diagnosed with this. I don't think I can handle that being 29 years young. I guess I'm looking for feedback/advice. Any help would be appreciated.

Thank.

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Mark 2020's picture
Replies 4
Last reply 4/18/2020 - 7:37pm
Replies by: MelMel, Bubbles, Beany

Hi, I'm new to melanoma. I start the nivo/ipi infusions on Wed. Any advice on what food, drinks, exercises I should do or avoid prior to
each treatment, during and after each treatment? I'm sure I'll be asking a lot of naive questions till I get the hang of it. Thank you in advance.
Mark

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Beany's picture
Replies 5
Last reply 4/20/2020 - 6:28pm
Replies by: bjeans, Beany, ed williams, Edwin

Hello,
Due to elevated liver enzymes, I had to stop nivo/ipi after three infusion. I am on 35mg of prednisone to bring down the enzymes. My question is did anyone here who had the experience of stopping treatment while on prednisone still achieve tumour shrinkage during this time?
Thanks in advance,
Adam

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jennifer83's picture
Replies 2
Last reply 4/19/2020 - 5:55pm
Replies by: Lucas, tedtell1

Hello all,

Just wanted to give an update. After 4 ipi/nivo infusions, we switched to a double dose of nivo and my vision went to hell. Started seeing double. They managed it with steroids and pulled me off of cancer treatment. Last week, I had a nasty reaction and landed in the ER, then ICU, with a terrible case of diabetic ketoacidosis. My sugar levels were above 600. I had been feeling yucky for about a day and a half. My husband called the doc when he could hardly wake me up any longer. I had no idea what was going on... lost a day or two of memory. They had to put an emergency PIC line in me. And just like that, overnight, I'm a Type 1 Diabetic that is now insulin dependent. What a crazy whirlwind. I was in the hospital five days. They are slowly taking me off of the steroids and I'm learning to be a diabetic with diet, finger pricks, and insulin. They have halted all cancer treatment as my doctor feels that the immunotherapy will continue to work and will just monitor me with scans. i'm nervous, but have seen promising things so I must trust the doc.

I can live with diabetes if I'm cancer free. Currently working from home with this Covid-19 crisis, and I feel lucky to be able to maintain work while going through all this. Checking in on the board often, just have been too busy to message y'all on your posts. Keep fighting the good fight!

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Beany's picture
Replies 6
Last reply 4/17/2020 - 10:31pm
Replies by: Beany, Bubbles, ed williams

Hello everyone,

Special thanks again to Melanie and bubbles for your input
Had a liver biopsy and blood tests. Haven't got word back from the biopsy yet but thankfully bloodwork is getting better without steroids. Third combo of nivo/ipi was on April 2nd. Then five days later developed diarrhea which has finally stopped.

AST ALT
4/15 353 658
4/16 242 557
4/17 174 450

Apparently my liver mets are shrinking--very grateful.
The doctor has me on 35mg of oral prednisone from today. I am in the hospital and they won't let me leave until they taper the prednisone down to 20mg per day! I feel fine, so it seems too cautious. Ah well...
What do you think? Any input grateful.
Sincere thanks,

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Megs Melanoma 2nd round's picture
Replies 5
Last reply 4/26/2020 - 8:31pm

Hello, with in the last 48 hours my Jackson pratt drain was removed due to me catching the tube on my bathroom door handle and tearing a suture. Im having fevers (100.7) and pain right above the drain hole. The area is hard when I touch it and I am feeling faint or dizzy. I have contacted my doctors, the on call doctors and have been told to keep taking Tylenol. The tylenol breaks the fever for 4 hours and then it returns. I know in my gut that there is fluid build up and my body is trying to fight it and can't due to not having lymph nodes in the armpit as of 16 days ago. Im also having what looks like Folliculitis and have been prescribed an antibiotic cream Mupirocin 2%. My concern is more the fevers and body aches. Has anyone experienced this after having ANLD?

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BRR's picture
Replies 13
Last reply 4/24/2020 - 5:19am
Replies by: BRR, Bubbles, Anonymous, MelMel

Hello,

My father was diagnosed in february with two lung mets (18mm and 8mm). He had VAT surgery. He is in pain, on scale 8/10. Still didnt recieve any therapy, he is supposed to have a CT in two months starting from today.

I have two questions:

1. Is it normal for him to be in this much pain one month after the VAT procedure?

2. Do you know of any case that a patient had VAT surgery and didnt recieve therapy afterwards?

He is 71 years old.

Thank you
This is so stressful time for all my family.

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tedtell1's picture
Replies 6
Last reply 4/18/2020 - 11:55am

Hi;
I was wondering if anyone had heard from Mike? It has been quite a while since I have seen a post and I know in his last few posts his pain and other issues were dragging him down!
Mike, if you are reading this, we would love to hear an update! I am praying for you and your family.
Peace to you and to everyone,
Ted

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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Edwin's picture
Replies 2
Last reply 4/16/2020 - 8:25pm
Replies by: sandyd77, Bubbles

The last post of aldrichdesigner ( Jeremy ) was 1 year ago. He and I had melanoma in our bones. After pembro immunotherapy failed us, we were switched to ipi/nivo immunotherapy. This did not help him. He was 40 years younger than I was.

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MelMel's picture
Replies 2
Last reply 4/23/2020 - 9:14pm
Replies by: MelMel, lkb

Scientists are turning cold melanoma and breast tumors into hot ones using locally delivered interlukin-12.
https://newatlas.com/medical/cancer-treatment-inflames-cold-tumors-immun...
"The researchers put this delivery system to the test in mouse models of aggressive breast cancer and several types of melanoma. After attaching IL-12 to the blood protein, injecting it intravenously and then using it in combination with checkpoint inhibitor therapy, the protein found its way to the tumor and successfully released the drugs, inflaming the tumor and turning it from a cold one into a hot one.
This method worked so well on the breast cancer that it disappeared completely following the treatment, and in the case of the melanomas, caused many of them to regress and lead to prolonged survival of the mice.

“These positive results are in tumors where checkpoint inhibitors normally don’t do anything at all,” says study co-author Jeffrey Hubbell. “We expected this therapy to work well, but just how well it worked was surprising and encouraging.”

A big advantage of the approach was the huge reduction in toxicity, with the targeted technique making the IL-12 therapy two thirds less toxic than it would otherwise be. The researchers will now continue working to reduce this toxicity even further and edge the therapy towards clinical trials.

“Once we have a way to make a cold tumor hot, the possibilities for cancer treatment are endless,” Hubbell says.

The research was published in the journal Nature Biomedical Engineering.

Source: University of Chicago

Hopefully, it especially works on those resistant tumors.

Melanie

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Beany's picture
Replies 5
Last reply 4/15/2020 - 2:23pm
Replies by: Beany, Bubbles, MelMel

Hello all,

These are my enzymes since completing infusions two and three of nivo/ipi combo.

AST (GOT) 39 28 352
ALT (GPT) 60 126 635

The doctor has ordered a liver biopsy to check possible damage. He said if the numbers don't start to drop, I will go on high dose prednisone.
What do you think? Possible increase in nets in liver? Or just side effects from the combo? The met in my lung is shrinking quite quickly as seen in a recent xray. I will have a CT scan tomorrow.

Sincerely,
Adam

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Anni's picture
Replies 3
Last reply 4/15/2020 - 10:05am
Replies by: MelMel, Anni

Hi has anyone had a seizure reaction to immunotherapy, ipilimumab and nivolumab? My sister had 2 infusions today and has had a seizure this evening. Thnaks in advance

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AimeeA's picture
Replies 8
Last reply 4/16/2020 - 2:57am
Replies by: AimeeA, MelMel, Bubbles, Anonymous, JudiAU

My 55 year old dad has just been diagnosed with stage 4 melanoma consisting of brain mets. He is awaiting ct chest abdo pelvis this week. Dad previously had stage 3b last year after groin dissection. The oncologist at present is saying targeted therapy consisting of encorafenib (Braftovi) & binometinib (Mektovi) is the only option. Due to supply issues with covid we have only had 2 days of tablets.
Dad is on steroids at present which hopefully will be weaned over the next 4-5 weeks & it would be great if he could get on immunotherapy thereafter. I was wondering is there anyone that had sterotactic radiosurgery for brain mets as I’m wondering would that be good while we are on targeted therapy?
The consultant said the prognosis isn’t good. My dad was working a few weeks ago and is a strong independent man so I’m trying to remain hopeful and try & make the most of treatment options.
Dad is BRAF positive.
Dad has 4 brain mets with 1 less than 2cm 1 less than 3cm, one which is just over 3cm and another which the consultant didn’t seem as bothered about is 4cm.
I was wondering if dad could even benefit from sterotactic radiosurgery on the smaller mets that are in the occipital partietal region. I’m going to discuss this with the oncologist but thought I’d post here for any useful advice / tips.
Thanks,
Amy

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