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.

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Hello All,

Grandma had her second infusion Monday. Today she has begun having the runs last night. She also has a rash (which they are treating with topical cream).

They have started her on Predisone 20mg, 3x a day and plan to have her on 10mg in a few days.

Someone tell me that this will not reverse the effects of the Immunotherpy.

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TBA's picture
Replies 2
Last reply 9/19/2019 - 9:52am
Replies by: Bubbles, TBA

Hello everyone

I have read quite some posts since a week on this forum. Especially the ones from "Bubbles", thank you !

My dear love has a melanoma stage 3., about 28 mm located at her right pelvic area.
It started with a skin mole, removed in 1995.
3 years ago, a ganglion was removed. She was then followed and checked every 6 months.

"Luckily", the last time she was checked, in April 2019, before going to a yearly checking protocol, a melanoma was detected.
She signed in May, at her first immunotherapy injection, a protocol from BMS (about 700 around the world, 70 from France)
combining Nivolumab and NKTR-214... (yes, Bubbles, we are also questioning this treatment)
Tomorrow is her 7th injection (every 3 weeks).

Our main concern for now is How to sooth the pain and secondary effects after injection.
The first day is OK. Then she has high fever, and a LOT of coughing. NO energy for 4-5 days.

Any advice welcome ! (are there any posts already on this forum ?)
We are thinking about essential oils etc... but a bit nervous about possible interactions with the treatment

Have a Great day ;)
Mike

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Hi All,
All of my melanomas have been resected over the past 3 years,but now I have a non-resectable progression in my lung. In 2018 hilar node was found to have mel, thoracotomy (ouch) to remove.
My last 2 scans (March and June) have shown some nodular pleural thickening , stable, and the one this week showed multiple new thickenings. Frightening, of course.
I had the ipi/nivo combo a little over 2 years ago, and have been having Opdivo alone since then . My onc at MD Anderson is sure this is mel and wants me to get back on the combo . If that fails might look at a NRAS targeted trial if there's one available. The thickenings aren't large enough to qualify for TIL. They aren't specific enough for radiation.
Has anyone experienced these pleural thickenings?
Has anyone had the ipi/nivo combo AFTER nivo alone?
Has anyone had the combo twice, 2+ years apart?
Thanks in advance for any insight. We are devastated.

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Join tens of thousands of people using Medivizor to stay on top of their condition.
https://medivizor.com/?login=2

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

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Mamashay's picture
Replies 1
Last reply 9/18/2019 - 8:33pm
Replies by: MelanomaMike

Hello. I have a few abnormal moles, for example they are raised and range from tan, to dark brown. A couple of weeks ago one of these moles turned black, fell off, and grew back within a week. I had this mole removed last week and got the results this morning via email.

I'm out of town currently so am unable to meet with my doctor for another 2 weeks and was hoping someone could help me understand this. Thanks.

Final DX
Skin, right arm, shave biopsy:
Traumatized/irritated compound nevus with occasional dermal mitotic figures, involving the margins. See comments.

Comments:
Deeper levels were examined. Due to the presence of occasional dermal mitotic figures, re-excision to ensure complete removal is reccomend.

Gross description:
Recieved is one container specimen in formalin, labeled with proper patient identification. Designated "arm right" is a 0.8cm skin shave with a 0.4cm pink-brown papule. Inked red and submitted sectioned through the papule, entirely in A1. MJG

Microscopic:
Microscopic examination performed.

Thanks again for any help.

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TexMelanomex's picture
Replies 4
Last reply 9/18/2019 - 1:50pm

Hey Warriors!!

I truly hope this finds you all taking the fight hard to the enemy and gaining ground toward victory!

I finished Pembro yesterday, the full two-year protocol in the PV-10 / Keytruda study is complete. All scans were good and this marked 2 years now with clear scans. At this point, I move into surveillance (or what I call reconnaissance) mode with scans every 4 months. Dr. Ross was good with 6 months, Dr. Amaria with 3 months, so they compromised with 4 months. Either way, I'll take it!

I have been an infrequent flyer here over the past several months and have selfishly been investing a lot of time in myself, my wife, and various interests. This does not mean that I have not thought of you all frequently and my prayers continue for all of you still fighting the good fight. Please don't give up, don't give in, and relentlessly fight this bastard of a disease by living hard and enjoying life every chance you get.

Warrior On!

Tex

Tex

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MelanomaMike's picture
Replies 5
Last reply 9/18/2019 - 1:06pm
Replies by: Bubbles, MarkR, Cindy Lou

Hello MRF Family, took a break from "Melanoma Thinking" for a few days haha, hope everyone is good? I hope so..
Ok, update, i have both Brain MRI & CT scans scheduled for next week, 26th MRI & 27th CT scan, ill do the CBC (bloodwork) a few days beforehand, that way i have everything done at once for Dr. Hamid, im ordering the scans to be burned on CD's for him.
Another one of Dr. Hamids coordinators (forgot his name, ill get use to everyone!) Sent me "another" Clinical Trial agreement form (PDF) to read & learn from, then of course when i come in this Thursday id sign it, the coordinator didnt know what happen to the prior Trial i signed up for, he thinks cuz this one would get started faster but he said Hamid will go over it when i come in Thursday about it. This new Trial is Phase 1b Study by the Incyte Corp. And of course Investigated by The Angeles Clinic using a drug titled INCMGA00012 (non-FDA in study)
INCB050465 ( Non FDA in study)
PART 1-Dose Escalation
Epacadostat in combo with one of above drugs.
Group A= INCMGA00012 w/epacadostat
Group B= INCMGA00012 W/ INCB050465
Part 2 of study is Dose Expansion.
Epecadostat is apparently in "Pill form" so thats a bonus, no sittin' in the chair for me for an extended hour or so!! Haha.. See? Look at all these Trials that are coming up for me!! That Jang cat is gunna eventually hear from me, hes a liar & a fat mouth telling me there isnt trials for me!! But i digress....Hope everyone is doing ok, gunna go browse our forum & see if theres folks needing some lovin' or info! :)

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

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nasullivan's picture
Replies 3
Last reply 9/18/2019 - 12:34am
Replies by: Baby_Girl, Cindy Lou

Hello All,

So grandma received her second treatment yesterday. They ran the nivo infusion over 30 minutes? I found the original guidelines online and it indicated it should be run over 60? Then the ipi.

So the total infusion time was 60 minutes? Seemed too fast to me.....

She had an adverse reaction during the infusion (muscle pain, chest pain) - they gave her benadryl and famotidine and checked her vitals every few minutes. She had the shakes and 8/10 pain. It was brutal to see.

Thankfully, we were able to get through the infusion with just the anti-histamines and she did not need the predisone. They let her sit for 30 minutes in between - made a big difference.

Also, we got her genetic sequencing back. She is BRAF negative.

Some positivity please! Ugh! This is so hard.

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Is this a result or side effect of immunotherapy /Yervoy??

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Cindy Lou's picture
Replies 5
Last reply 9/18/2019 - 12:46pm

Had my appointment at Winship Cancer Institute at Emory in Atlanta today. I think I have finally found “the one”. The one doc I have seen since my melanoma journey began 4 years ago who listens to me AND will coordinate my care. For some reason, one lump which is just under my jaw was not removed during my surgery earlier this month. Sooo she wants it out and biopsied. She had a surgeon in the room with me within 5 minutes for the surgery consultation. She also has me seeing a dr who specializes in skin rashes caused by immunotherapy. Get outta town! Can’t believe i might actually get relief from this itchy rash i’ve had for 8 months now. Three doctors in my hometown told me there was nothing else that could be done for the rash but today i was told that was not at all true. My advice to all is to be your own advocate and seek out the best care you can find! Keep up the fight, my friends!

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/18/2019 - 12:39pm
Replies by: Emerald18, MMH, Anonymous, LRS88, ohernan

Hi there. I was diagnosed with melanoma 2 weeks ago. It took 4 weeks to get my first results and I am still waiting to hear about an appointment for a WLE and SNB. I don't know how you all deal with the waiting. It's excruciating! My doctor told me my tumor was T2b. The lesion was on my upper left arm. I saw the doctor again yesterday to ask for a copy of my pathology report. I cannot see any reference to T2b on it just pT2.

Here's the specifics in the report:

Superficial spreading melanoma with spindle cell features
Breslow Thickness 1.1 mm
Macroscopic Satellite Nodule(s) - not identified
Ulceration - not identified
Clark Level III

Accessory findings:
Microsatellite(s) - not identified
Lymphovascular Invasion - not identified
Neurotropism - not identified
Tumour-Infiltrating Lymphocytes - Present, nonbrisk
Tumour regression - not identified
Mitotic Rate - 2

Margins:
Peripheral margins - uninvolved by invasive melanoma
Distance of Invasive melanoma from closest peripheral margin: 3.5 mm
Status of melanoma in situ at peripheral margins: uninvolved
Distance of melanoma in situ in peripheral margin: 2.5 mm
Deep margin - uninvolved by invasive melanoma
Distance of melanoma from deep margin: 4.5 mm

Pathologic Stage Classification: pT2: Melanoma 1.0 to 2.0 mm in thickness, ulceration status unknown or unspecified

My questions are when it says ulceration status unknown or unspecified what does that mean? No ulceration or they couldn't tell for sure?
What are spindle cell features and how do they affect my diagnosis?

I've been reading lots of posts in this forum and you are all so amazing and supportive to each other! Any insight anyone can provide would be much appreciated!

Thank you.

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Tsvetochka's picture
Replies 2
Last reply 9/18/2019 - 5:48am
Replies by: Tsvetochka, BillB

I've always been on the light side of average, but now I'm officially underweight. I'm eating really well; it's just not sticking. Each time I go to the doctor I see that I've lost a little more. Is this caused by melanoma or Keytruda?

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SOLE's picture
Replies 2
Last reply 9/17/2019 - 9:54pm
Replies by: SOLE, Bubbles

NED. Despite all the fears, everyday counts. Despite all the pain, every moment count. It has taken me 3 years to fully get it.

My heart is with you and I pray for us all.

Let’s hope for a brighter day tomorrow.

M

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Hanaln's picture
Replies 4
Last reply 9/17/2019 - 1:30pm
Replies by: lindy303, MarkR, Coragirl, JudiAU

If you haven’t read any of my posts before my husband was diagnosed with stage 4 melanoma found via a small bump on the side of his abdomen that wasn’t healing. He’s had another melanoma on his neck years ago but never needed anything except wide local excision. He’s made it through the first set of scans last month which showed very little of concern. Dr plans to keep him on Keytruda every 3 weeks for 2 years. We also want to expand out family. We have a 1 year old daughter who was 8 months at the time of his diagnosis. And I always wanted children close in age. But at this juncture does it make more sense to wait until Keytruda is over or not? We certainly have enough to worry about with keeping my husband healthy but when does he get the green light to keep growing our family?

Holly

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Coragirl's picture
Replies 13
Last reply 9/19/2019 - 11:04am

Hello all I just wanted to share some good news. My husband had scans today and he remains ned. He stopped treatment with Opdivo in March due to pnuemonitis. He had 2 rounds of steroids to control his symptoms from the pneumonitis, and that is improving as well. Hope everyone finds some happiness this week.

Amie Taylor

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