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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BrianP's picture
Replies 1
Last reply 3/25/2020 - 4:45pm
Replies by: ed williams

Not sure if this is old news or not. Looked back a little and didn't see anything on his MSK study.

https://www.cancertherapyadvisor.com/home/cancer-topics/skin-cancer/mela...

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Redstar.20's picture
Replies 6
Last reply 3/26/2020 - 12:54pm
Replies by: gopher38, MelMel, msue5, tkoss

I had my first treatment yesterday of Opdivo, mostly doing ok. Have been extremely tired and body aches like I have worked really hard. I also have noticed that I have tingling and numbness mostly in my right arm and gand tonight. Is this something that will pass in a few days? Or is it something that will continue throughout trearment?
Thank you!
Kate

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Dear MPIP Community:

I wanted to let you know of an upcoming webinar with two amazing melanoma experts coming up next Tuesday, March 31 at 10am ET. This will be a live webinar with time for Q&A. If you can't make it, don't worry...we'll post the webinar on our website shortly afterwards, and you can submit questions to me at education@melanoma.org and our speakers will try to address them! 

Best,

Shelby - MRF

 

 

 

 

 

 

 

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gkersey's picture
Replies 2
Last reply 3/27/2020 - 8:30am
Replies by: Edwin, BillB

Hi. My name is Gail. I am a 55-year-old female. I was diagnosed with melanoma in 2017. The surgery was successful with no treatments. I have just been diagnosed with it again. I need to know what can I eat or drink before my PET Scan? I am hypoglycemic and need to make sure I keep my sugar up the day of the scan. Thank you for anyone who is willing to reply.

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ScaredPartner's picture
Replies 5
Last reply 3/27/2020 - 10:32pm

Partner started a new phase 2B trial today. TGF Beta, combined with a PD1.
The required 3 week washout period was really hard on him. The targeted drugs had started failing hence the change to the trial, but once he completely stopped taking them the subcutaneous lesions grew fast. 3 weeks ago he was riding his bike for miles through Hawaii, and yesterday couldn’t make it from cab into hospital without assistance because of the pain.
After the pain was under control they went ahead with treatment one.
In hospital over night for monitoring as this drug is hard on the heart.
We are hoping for a miracle/miraculous science.
The idea behind this trial was that it was meant for people who for some reason had some progression within the first 12 weeks on immunotherapy, and to find a solution for that group of patients.
I post this in case anyone else is currently looking into this trial, and have questions about our journey to get there, or if someone has been through it in phase 1, and has any insight on the treatment. No results are posted anywhere yet. It just got approved for 2A (in Canada anyways) about 2 weeks ago
I hope my rattie is the on the way to a cure.
Best to all.

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marta010's picture
Replies 2
Last reply 3/28/2020 - 9:58am
Replies by: gopher38, Bubbles

My husband Larry, had his 6th gamma knife on Tuesday.....boy, are brain mets persistent. We're very thankful that he wasn't exhibiting any Neuro symptoms and that his team was able to get him in for treatment quickly. This met was new but near an area where he's had two prior gamma treatments and two brain surgeries. Hope this is the last time we need to deal with this area. This was not the way we wanted to celebrate his 8 year "anniversary" but what can you do! Stay safe and our of harms way!
Ann

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caman's picture
Replies 10
Last reply 3/30/2020 - 10:44am
Replies by: Bubbles, caman, ed williams

I have two choices..keytruda first then remove the cancer node then go back on keytruda or remove first then go on Keytruda.

Anyone with suggestions, advice or experience would be greatly appreciated.

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Rob is grateful's picture
Replies 12
Last reply 3/30/2020 - 3:24pm

Hello friends, I was recently diagnosed stage 3. I had a primary tumor that was 1mm with ulceration. My surgical oncologist, the medical oncologist and of course I were very surprised that 2 of the lymph nodes came back positive. They pulled 5 sentinel node and 1 had .2mm and the other a 3mm tumor that both were still encapsulated. My dermatologist ordered a test from castle bioscience that showed I was a 1a with least chance of recurrence. I go back on April 22 for all of my scans and discuss treatment. I’d love to know how people managed to get over the initial shock and stress. I’m a positive person and I’m looking at this as just another hurdle. Thank you in advance for your replies and motivation. Glad I cam across this forum. There are a lot of negative statistics out there and I’m hoping they are based on old data and not showing the results of more recent breakthroughs. I hope everyone is doing well
I’m praying for all of us. Rob

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gopher38's picture
Replies 2
Last reply 3/31/2020 - 4:11pm
Replies by: gopher38, MelMel

So I think that some numbness and weakness in hands and feet is pretty common with both nivo and ipi. Wondering if anyone - other than myself - has had it go beyond that to significant pain? Up until a few weeks ago, my melanoma hadn't had any substantial impact on my physical abilities. I started to notice a little numbness in the feet, and then almost overnight, it exploded into severe pain in the legs, mostly in the calf muscles on both legs, along with numbness in the feet. It was like having a charley horse in both calves, but it never went away. Especially bad at night, which caused me to go 4-5 nights with truly almost zero sleep. Finally had to call the doctor, and they initially gave me some pain killer that did nothing, and then a combo of oxycodone, gabapentin and steroids, which eventually got it under control. Eventually the pain in the muscles went away, but now it has moved just to the feet and toes. Still very painful, but not quite as bad. Only doing the gabapentin and over the counter to control the pain. Kind of shuffling around now. Anyway, still haven't identified a cause, be it adverse reaction to treatments or spread of mel somewhere or something else. Just wondering if anyone else has had something similar.

By the way, I mentioned in another post that I had a gamma knife recently. They specifically said that they didn't believe the two were related, because the area of the brain where I had the gamma knife has nothing to do with my legs. They said it was near and area involved in vision.

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Coopshow's picture
Replies 2
Last reply 4/1/2020 - 10:43am
Replies by: tkoss, JudiAU

My wife started the opdivo with yervoy trial infusions yesterday. Seemed to go well. I brought her home today and checked her temp randomly. She has spiked a 103.1. I got ut down with Tylenol and of course called the doctors for advice. Simply to watch it over night and if it returns to head to the er which is normal response to that fever. My question is this. Of the people out there who have had this combo have any of you had this sort of reaction so quickly? Is this a common reaction? Yervoy says that a fever can happen but nothing ive found online has mentioned it with opdivo. Im just extremely worried that something is very wrong. She says she feels fine which is crazy in my mind for a fever so high. I am just reaching out to see if anyone else has had this experience or jf this is really a rare occurrence that I should be more concerned with. Thank you in advance for any words of experience.

Worried Hubby

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Beany's picture
Replies 2
Last reply 4/2/2020 - 12:02pm
Replies by: Beany, ed williams

Hello everyone,
I am just about to get my third infusion and here are the blood test results. Could you please tell me what you think of these levels especially AST, ALT, and LDH/LD.
I am not sure why LDH is not registered whereas LD is. I will ask the doctor soon.
AST (GOT) 39
ALT(GPT) 60
LD(IFCC) 235
Sincere thanks in advance

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tkoss's picture
Replies 1
Last reply 4/3/2020 - 12:40am
Replies by: Tsvetochka

After being refused infusion 2 weeks ago because of high liver enzymes, i was accepted today.

it would seems that doing recommended dosage of Tylenol for a week or so prior to infusion caused a liver enzyme rise. so stopped taking them and enzymes came down.

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

I received my first Opdivo infusion on Thursday, and within 30 seconds of the drip starting I became hot and flushed . . my chest tightened and I felt like I was getting SOB. They immediately stopped the drip and hit me with some Benadryl. I got super upset and started to cry, thinking I wasn't going to be able to get the treatment but the wonderful staff assured me to not worry. They began the drip again a little while later, but this time I was on a hourly drip as opposed to the half hour. I felt super tired the next day but am alright today. 

Have any of you ever had this happen?

What caused it?

Will this get worse?

Does this mean that Opdivo won't work for me?

Maybe I'm just super sensitive? I get a weird feeling and can taste it every time they do a saline flush, so maybe it's just me? Thank you all in advance for your insight and experiences. :)

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Beany's picture
Replies 4
Last reply 4/5/2020 - 1:46am
Replies by: Beany, tkoss, Bubbles

Hello everyone,

I looked on the web but couldn't find anything. My liver enzymes fell which apparently is good.

Pre Infusion 2 Pre Infusion 3
AST (GOT) 77 39
ALT(GPT) 204 60

Could it be a sign the combo is working?

Sincerely appreciate you all and this forum,

Adam

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