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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AmyM's picture
Replies 8
Last reply 4/16/2020 - 2:57am
Replies by: AmyM, 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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Andy1969's picture
Replies 4
Last reply 4/16/2020 - 9:10am

Hello,
A few days ago I went on mekinist/tafinlar for adjuvant therapy. I have Stage 3B melanoma after a subcutaneous tumor with unknown primary was found and removed on my back. All scans are clear. Today I feel very feverish and achy. Has anyone else experienced this and if so, how long did it last.

Thanks for any help!

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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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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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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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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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Replies by: Beany, lkb, Bubbles

Hello everyone,

I will have bloodwork and see the oncologist this Wednesday to see if I can go onto the final infusion of the nivo/ipi combo. I am happy to have done three of these, and an xray has already shown shrinkage of the biggest tumor in my lung.
I kindly received some good stats and links (thanks to Celeste and Ed) about clinical trials of the combo which indicated that even if you don't do all the infusions, the response rates are somewhat similar. Therefore, I was wondering why risk toxicity to do the fourth infusion?
I do want to do number four, but those stats have got me thinking.
Any input welcome.

Thank you,
Adam

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caman's picture
Replies 7
Last reply 4/19/2020 - 10:01am

Hope everyone is doing ok, difficult times to say the least. Well , I'm going get first shot soon. If this drug works what is the average time you see results. First, second or third sessions? Anyone can share their experience or has some knowledge of the effects would be greatly appreciated..

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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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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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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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MMH's picture
Replies 1
Last reply 4/21/2020 - 7:31pm
Replies by: tedtell1

Having trouble getting through to my derm likely due to pandemic. Had blotch on face earlier this week of concern but that is nothing now that I awoke to a red nodule near my original scar. My original melanoma was a Spitzoid, amelanotic and similar to what I am seeing now although this spot looks more red and nodular to me. As you can tell, I am beside myself. Is it possible to have a nodular melanoma pop up near old site that was not
Nodular? Trying to catch my breath.

MMH

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Sdmotorcop's picture
Replies 2
Last reply 4/22/2020 - 5:55pm
Replies by: MelMel, Bubbles

I unfortunately made the jump from 3C to stage 4 last week (mets in my lungs, lymph nodes and the psoas muscle). I had a 4.3mm removed from behind my left knee last april. I had one lymph node that had meI in it and started nivo once a month in June. I had a pet scan in December that came back clear. Only side effects I had from the nivo was fatigue and polymyalgia rheumatica like symptoms (extremely sore shoulders, upper arms and hips). My rheumatologist had me do an mri on the off chance I had joint issues. I’m glad she ordered it, otherwise it would have been another month and a half for my next scan.

My oncologist is gonna start yervoy along with nivo at my next nivo infusion. I’ve read about joint pain / issues while on the yervoy/nivo combo. I guess my question is for anyone who had the joint issues / pain while on the combo. How debilitating was the joint pain? I’m used to the joint pain from the pmr, I’m just wondering how much more the combo will heap on..

Bruce

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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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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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