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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sks2019's picture
Replies 8
Last reply 7/24/2020 - 9:17pm

Hello family,

Back here to seek help from you all. I posted in Jan for my mom diagnosed in Oct 2018. failed nivo, pi/nivo with mets to liver, lungs and vaginal area. She started on a trial of PARP inhibitor niraparib in feb , we thought her liver lesion was shrinking ( as the scan said there is less activity in the middle of tumor and it looks necrotic ) another scan in June released shows lesions back in the vaginal wall. She is kicked out of the trial for progression so we are back to choosing another trial out of two options provided. One being the XmAb20717 which as I understand is ipi/nivo ( I am concerned why she is being offered the same thing when we have only seen progression on it before. ) Can it do any good when ipi/nivo caused a significant progression in the liver ?

the second option is injecting a herpes virus into the vaginal lesions biweekly and scan after 12 weeks , i asked the onco will it help with the lesions in the lungs and liver and the reply is theoretically it should.
Please pour in your opinions and thoughts. I know ultimately we have to make a decision but would like to know what would you choose if you were faced with these two options.

I am really concerned with mom feeling very fatigued and low on energy.

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ThinkingPositive's picture
Replies 1
Last reply 7/23/2020 - 3:00pm
Replies by: ThinkingPositive

Hello,
Can someone supply the link to Celete's melanoma primer? I received crappy news today that an axillary lump was consistent with metastatic melanoma. I am awaiting a call from Hershey Medical Center to get started with care. In 2017 I had lentigo melanoma on my nose and had graft. Stage 2a.

November 2017- Stage 2A Lentigo melanoma excision and graft . June 2020- Stage 4 progression. Started Keytruda August 2020. BRAF not mutated. Zometa x2 for bone mets, then stopped due to persistent fevers

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Tsvetochka's picture
Replies 2
Last reply 7/22/2020 - 8:16pm
Replies by: Johnjk04, tedtell1

Or does it stay forever after immunotherapy?

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

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JudiAU's picture
Replies 6
Last reply 7/24/2020 - 11:29pm

I found out 355 days ago that I had a new brain met, suspected to be Stage IV melanoma. This was the same appointment when my unrelated vicious brain tumor was finally defeated. After a year of treatment, my scans are clean. I am too hopelessly scared and defeated to think I am done. Nobody used NED as a term applied to my body. But in fact, right now, there is nothing NOTHING showing up on my scans.

I want to express my gratitude to everyone who has shared their stories, research, support, and love on this board. Your compassion is endless, generous, and so needed. Thank you. You make the journey bearable.

Judi

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Dear MPIP Community:

I wanted to share a few opportunities for you to get involved in the fight against melanoma!

The first is with our partners at OncoSec. OncoSec is looking for cutaneous melanoma patients or caregivers, who have participated in a clinical trial, to share their stories and experiences. They are looking for people in the following cities/areas: Northeast/Boston, Northern New York, New Jersey, San Diego, Philadelphia, Houston and Chicago. The goal of the media tour is to increase awareness of and participation in clinical trials. If you are interested in the virtual media tour, please email my colleague, Lorrie Miley, at lmiley@melanoma.org

The second is with our partners at Pfizer. Pfizer is hosting a virtual advisory board on Friday, August 21, 2020 from 4-5:30pm ET. They are looking for cutaneous melanoma patients and caregivers to participate in a virtual discussion so Pfizer can learn more about the general patient experience. I will moderate. Participants can live anywhere in the U.S. After the advisory board is held, all participants will be given a $25 gift card for their time. In an effort to have a diverse advisory board, all interested patients and caregivers should fill out this survey ASAP:

https://www.surveymonkey.com/r/FMZ9LQN

If you have any questions about these opportunities, please don't hesitate to reach out to me at smoneer@melanoma.org. As always, we thank you for your time and committment to helping us better the melanoma community.

All the best,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 7
Last reply 8/27/2020 - 6:20am

My husband is a newly diagnosised melanoma patient.. This is so very scary and I am having a hard time with this.. our lives have changed and i feel lost at times.. the cancer has spread to two lymph nodes which they removed.. he had his first of 12 treatments of Nivolumb. Im trying to be positive an strong for him . but my mind is constantly thinking of all the what ifs... just looking for support through these difficult ahead for us.. remaining hopeful but still so scared... are there any other newly diagnosised stage 3 melanoma people out there? my husband has a positive attitude but he really doesnt want me to talk to about it or ask too many questions..

Phyllisd

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THMoore's picture
Replies 5
Last reply 7/19/2020 - 8:46am
Replies by: tedtell1, THMoore, caman

Looking for patients that are BRAF + plus No Primary that have had success with OPDIVO. Can you please share your story. I need a little positivity after receiving my latest scans. Thanks Trent.

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gopher38's picture
Replies 10
Last reply 7/24/2020 - 2:48am

So Bubbles frequently says this (be patient WTP) , quoting some melanoma big dog, when someone asks how long until immunotherapy starts working. I think the point being that it can start working quickly for some people, but sometimes takes much longer, so hang in there. I've got another data point to add.

To recap previous episodes, I started opdivo in ~ Feb 2018 and went for a year on that. Aug 2019 (so about six months after ending opdivo and having been NED to that point), I had 8 new skin melanomas pop up all over the torso, from neck to butt. Started combo therapy in Oct going to roughly end of Dec 2019.

Had a PET, CT scan in Jan (so just after stopping the combo), and they found multiple spots in the lungs. They also did a brain MRI and found one lesion in the brain. Just after that, I started getting severe pain and numbness in legs and feet, to the point where I couldn’t stand for more than short periods of time. Doctor thought that it might be spread to spinal cord or leptomeningeal fluid (apparently they had seen some suspicious - but not conclusive - things on the PET, and the spot on the brain was near the fluid). Things weren't looking good at this point. We talked briefly about going to targeted therapy, but both him and I wanted to give the immunotherapy some extra time. Things have been looking up since then.

First, I had the gamma knife for the brain lesion, which went well. Then, spinal tap came back (much to my surprise) negative for cancer. Full spine MRI came back negative also, and neuropathy - while still present - started lessening.

March 2020 was the next CT, so about 3 months after ending combo therapy, and it started out like this:

** IMPRESSION: Interval resolution of nearly all pulmonary nodules, with one of the dominant left upper lobe previous nodules now is a small groundglass opacity. This likely indicates near complete resolution of this nodule. Close attention on follow-up again recommended to ensure stability/complete resolution. No obvious therapy-related toxicities. Etc. etc.

My doctor admitted that he was very surprised. So somewhere between Jan (just after end of combo) and March (3 months after end of combo – 6 months after begin) I showed great improvement. In retrospect, I think the pain that I was experiencing at the end of Jan might have been the combo starting to kick in. Didn’t want to get too excited, because … I’m a pessimist, but I just had by last CT scan, which began:

** IMPRESSION: In this patient with a history of melanoma:
1. No evidence of metastatic disease within the chest, abdomen, or pelvis. There is resolution of the previously described groundglass opacity within the left upper lobe. No new pulmonary nodules.
2. Thickening within the distal esophagus, the differential includes immune mediated esophagitis vs. mass. If clinically indicated, consider upper endoscopy.
3. Ectatic ascending aorta.

I don’t know what 2 & 3 mean, but I think they’re not overly worrying. We’ll see where this goes, but I’m feeling much better about my prospects than at the beginning of the year. Last brain MRI came back with the same spot still present, but not growing, and nothing new. The doctor thinks that’s normal and positive. She said maybe it will absorb over time.

I think the plan is to continue with opdivo for some time and keep the fingers crossed.

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Hukill's picture
Replies 1
Last reply 7/17/2020 - 12:09pm
Replies by: Bubbles

It has been 4 years since PET scans found 7 tumors in my lungs, Started the ipi/nivo combo and was NED at 1 year but continued on maintenance for 14 months and decided to stop as new evidence was showing maybe no improvement. This month is 3 years NED which is great but still fighting multiple side effects with fatigue being a never ending thing. My oncologist prescribe me Ritalin today as some research has shown this helps some patients with severe fatigue. Will see in the next couple of weeks. Good luck to everyone dealing with this nasty monster.

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Julie in SoCal's picture
Replies 9
Last reply 7/23/2020 - 10:38am

Good Morning, Friends!

I've been back from Sheri & Julie's Awesome Adventure 2020 for a few weeks now. But I went straight into Chemo (talk about a rough way to end a historically amazing trip).

So here are the stats:

Miles: 2800
Flat tires: 1 on Chubbs the tiny trailer coming home
How many times people said "Sweet!" or "Cute" or somehow praised Chubbs.:36.
Ave MPG: 26.7
Camping mishaps: 4 Forgot the tent poles, forgot my wallet, had to fix the stove, set up the portapotty on an incline- I couldn't get up without spilling it's contents all down the floor of the tent. Yes Sheri came to my rescue, but not before a good laugh or two.
Friends we meet along the way: 10 (priceless)
Animals we saw: Bison, white tail deer, moose, horses, blue heron in a nest with two (ugly) chicks, squirrels, chipmunk, prairie dogs and a bazillion mosquitoes. We didn't see any bears, but we know they were around. We also didn't see any wolves or bald eagles :-(. We will have to go back!
Times we looked up, saw something amazing and said "WOW!": Lost count!

Truly it was amazing if it wasn't the beauty surrounding us, it was the fun and fellowship of the friends we were with. Often it was both! My heart is full and I am so grateful for my friends -- especially Sheri. I couldn't have done it without her. I knew the altitude would be hard 5-8,000' but I didn't realize how hard. If I had to climb any incline I was toast. And everything is on an incline. Every breath was a reminder that I have stage 4 lung cancer as I ran into one limitation after another and needed help. But my friends were there with me, seeing my struggle and helping me. I really have no words to describe how this makes me feel- the closest thing I can think of is that this is grace. Thank you friends for extending grace to me.

If you're interested: Here are a few pix from the trip: https://drive.google.com/drive/folders/1AcDPYPeLLFOEhEJOr9RS2N4obplCaO-R...

Ok this is plenty long, so I'll quit for now.

Wishing you all peace!
Julie

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boatski's picture
Replies 4
Last reply 7/15/2020 - 1:03pm

Hi all,

I'm still in the relatively early stages of watching out for recurrence. In march I had a WLE and SNLB (negative) for a 2b melanoma on my ear. I'm vigilant about watching for signs of melanoma but am still so confused. I've been to numerous doctors and oncologists. I'm trying to learn what to watch for and what to worry about. They basically all say that anything can be a sign of melanoma, which is not super comforting. I've been worrying over red spots as now I am getting them due to summer and covering my skin more when I exercise. I have a derm appointment next week but was looking to get some early thoughts. I have a newer red mark below my collar bone near the center of my chest from late last week that is very slightly raised - much smaller than a grain of rice. It seems to react to hydrocortisone cream and becomes less red until I irritate it exercising. I had another bump like it somewhat near by that I can still kind of see but is no longer red and has drastically shrunk in size.

I'm going to ask the derm next week but I was wondering
1. would melanoma react to hydrocortisone and become less red?
2. could in-transit or distant metastasis become smaller?
3. is raised the big cue for melanoma recurrence? It's tough because my skin is so sensitive that i get lots of red irritation marks that are not really raised.

Thanks all.

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chipgoodhue's picture
Replies 6
Last reply 7/23/2020 - 9:29am
Replies by: MarkR, chipgoodhue, Bubbles

Anyone know someone who was enrolled in the LN-144 Tils trial? My wife has preliminary acceptance into the LN-145 trial, god bless, and we are curious to hear anyone's else's experience in LN-144. The results look very promising, though the trial processs itself looks quite challenging.

Thanks in advance for any help.

Chip

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MelanomaMike's picture
Replies 6
Last reply 7/15/2020 - 4:54pm
Replies by: MarkR, ed williams, Anonymous, gopher38

TIL PROTOCOL IOVANCE C-144-01 - Phase 2 Study of Cell Transfer Therapy Using Autologous Tumor Infiltrating Lymphocytes (LN-144) Followed by IL-2 for Treatment of Metastatic Melanoma [NCT02360579]
"Please go to TheAngelesClinic.com and read this, it sounds like they may take you Mark, it reads brain mets are under exclusions but then says the following":
Patients with symptomatic and/or untreated brain metastases (of any size and any number)
Patients with definitively treated brain metastases may be considered for Enrollment, and must be stable for ≥ 14 days prior to beginning the NMA LD preconditioning regimen.
"I didnt catch if your BRAF positive but heres what it says"....
Patients who have been shown to be BRAF mutation positive (V600), but have not received prior systemic therapy with a BRAF inhibitor alone or a BRAF inhibitor in combination with a MEK inhibitor
I hope you can get over here to the US no matter what state, Texas has great doctors to!, just as world renowned as my doc Dr.Omid Hamid!

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johntmcdonnell's picture
Replies 1
Last reply 7/14/2020 - 10:06am
Replies by: Gene_S

Eight tumors completely wiped out by Yervoy. Still in remission nearly a year later. First course of Opdivo prior to Yervoy produced vitiligo. on arms, hands, and legs. Yervoy caused white eyebrows and lashes. I started getting what looked like age/liver spots on hands, arms, and legs about 8 months ago. These spots are now so prevalent that they cover everything but my trunk and face/neck so completely that I look like a mutated giraffe. Both oncologist and dermatologist think that this is re pigmentation of previous vitiligo areas. Personally, I think that they have no idea what it is. Has anyone heard of this condition (or experienced it)? Both docs agree that the spots, which now number in the thousands (no exaggeration and many areas have merged into large light brown patches of skin) aren't dangerous. While certainly grateful to still be in remission, i certainly wouldn't mind my skin going back to "normal". Thanks for feedback.

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maryb-z's picture
Replies 7
Last reply 7/28/2020 - 6:28pm

My district is returning to face-to-face instruction in September. I asked my nurse practitioner if there were additional precautions I should take as I am currently on Opdivo as well as low dose prednisone daily. She advised the same precautions as our health department suggests. I'm a bit anxious to say the least. I'm 52 years old and will be in contact with many students daily as I am a specialist teacher. Any thoughts? TIA

No One Fights Alone

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