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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Anonymous's picture
Replies 2
Last reply 7/29/2020 - 5:18pm
Replies by: jjanekroll1, JudiAU

My husband is stage 4 but is currently not doing treatment. He's not had any treatments in several months. He's unable to eat very much and doesn't have an appetite what so ever. For some reason he's been gaining weight. We aren't sure what would be causing this and his dr's aren't quite sure either. He's not on any steroids or any medicine that has a side effect of weight gain. He tries to eat but has a lot of stomach pain so therefore he just doesn't eat due to that and the loss of appetite. Has anyone ever experienced this or know what would call the weight gain?

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MLD1973's picture
Replies 8
Last reply 6/11/2020 - 12:39pm

Hello all,

I have had a ankle lump for the last 6 months, went for an ultrasound yesterday. The sonogrphy guy said he did not know what the lump was and would need to refer me. Two hours later the doc calls and said he would refer me on a two week referral. Looking at my notes after the call is stated suspected sarcoma. What is the relation to MM with sarcoma? I have had a dull ache in my groin for weeks and thought nothing of it, but feeling my inner thigh it feels swollen.

I am very nervous and anxious, has anyone else had the same experience?



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TimCT's picture
Replies 4
Last reply 6/9/2020 - 7:47pm
Replies by: TimCT, ed williams

Hi All,

I began treatment for my melanoma in February of this year, initially staged as 3C/4. The disease was confined to my lymph nodes, though it was extensive - both axial and cervical on my left side and a couple nodes on my right.

The decision was made to start the ipi/nivo x 4 regimen, which I completed in May. There was noticeable swelling on the left side of my neck when we started, that shrunk noticeably after my first combo treatment, though it never completely went away, and swelling has steadily increased in that area since. My first scans post completion of the 4 infusions show overall disease progression. Some nodes appear smaller, some appear larger, but there is new progression as well, around my throat and under my jaw, as well as two very small (but very suspicious) spots in my upper lungs. We're continuing with nivo by itself for at least the next 8 weeks, and if the disease at my throat becomes a problem as far as swallowing solid food, we'll look at radiation in that area.

My hope is, of course, this is a delayed response to the drugs or pseudoprogression, and I may yet respond. However, the new disease under my jaw has me worried that whatever partial response I had earlier is it for me. Could I still have a delayed response, even if new disease is appearing? I thought that a delayed response was more seen in existing tumors growing post treatment, and then taking longer to shrink, and not necessarily a factor when new progression is brought into the mix.

As usual, looking for any positive news to hold on to!


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5dives's picture
Replies 2
Last reply 6/12/2020 - 10:02pm
Replies by: Treadlightly, Bubbles

Hello all! It’s been a while since I’ve posted here, but it’s been almost exactly 6 years since my 3B diagnosis, and I’ve had no treatment beyond being closely followed. All has been well!

For the past week, I’ve had a rather persistent muscle twitch that seems to be coming directly from my WLE scar. You can watch my scar jump, which is weird. Googling hasn’t given me anything to make a mild anxiety go away. Have any of you experienced this?

My WLE was just near and slightly above my right knee, on the inside of my thigh. Sentinel node came from my right groin.

Thanks for any thoughts you might have. One of those “probably nothing” but weird because it seems to be coming straight from my scar kind of moments.



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Julie in SoCal's picture
Replies 7
Last reply 6/13/2020 - 11:44pm

Dear, Friends!

Here’s the short of it:

1) Having lung liquid drained is no fun. I don’t recommend it. I had 1200ccs drained and I nearly passed out it hurt so bad. But I am breathing much easier. And for that, I am very grateful.

2) The lung liquid was cancerous, lung cancer. The PET scan showed growth everywhere. The targeted chemo wasn't working.

3) Chemo treatment started last Wednesday afternoon. It’s a three-drug cocktail of Carbo-Alitma-Pembro. I’ve had all three of these drugs before and I responded to them at the time. I just didn’t have them all at once. I am certain that I will respond again (technically, this is a two-fer, as it will work on both Mel and Larry. The Rock Star says my cancer has “forgotten about this.” My body, unfortunately, hasn’t. It's kicked my backside!

4) I am going to do my darndest to go on Julie & Sheri’s Big Awesome Adventure 2020. It’s a nice long road trip to the Grand Tetons and Yellowstone National Parks, where I’ll meet up with many friends and see some of God’s best work. But it's going to require a bit of chemo scheduling creativity. We can do it.

Well, friends, that’s the news. It’s not what I wanted, but I’ll be ok.

Love you all,

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Edwin's picture
Replies 9
Last reply 6/25/2020 - 5:37pm

I had a PET scan Friday and saw my oncologist today. Since the PET scan showed no cancer, she has stopped my immunotherapy. I will have a PET scan in October and see her after it. I began Keytruda immunotherapy in November 2015. and switched to Yervoy+Opdivo on April 1, 2016. My last Opdivo infusion was on May 27. I feel well and ran 10 miles Saturday morning.

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Anonymous's picture
Replies 4
Last reply 6/8/2020 - 3:08pm

My spouse has stage 4 melanoma and has decided to discontinue treatments. It has been 6 months since his last treatment. I do not know what to expect. We haven't asked the doctors or nurses what time line we have and I feel like its just a waiting game. I understand his reasoning in not wanting to find out but I am one of those people who needs to know so I can plan and know what to expect. I want to take care of him and make sure he lives with the best quality of life as possible. He is still semi active but has a lot of pain. Could anyone give me any insight as to what I can do, expect or survival rate at this point? I do not want to go behind his back and ask his doctors because I am afraid that will upset him. I am turning to you guys for this support and knowledge. This has been a very hard time and I know its just going to get harder physically and emotionally.

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Ennis1234's picture
Replies 6
Last reply 6/28/2020 - 11:04pm

Just had brain surgery to remove large melanoma in brain followed up by gamma knife for 2 smaller tumors..... recommended I do immunotherapy with Yervoy and opdivo combo... anyone else doing this???? Side effects... did it work for you??


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MelMel's picture
Replies 7
Last reply 6/8/2020 - 2:04pm

This article will briefly examine the role vitamin D plays in viral immunity and present the evidence that proper levels of vitamin D may decrease the severity of COVID-19.

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A recent study from University of California, San Francisco looking at different tumors including melanoma and their influence on the immune system and specific immune cells. Hopefully, it sheds more light why some patients respond and others do not.

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Replies by: Mark_DC, jbronicki, gopher38

For those interested, Dr. Hamid posted this video link on his twitter account
As I understand it, three promising new developments: (i) TiL therapy generating good results for those PD-1 non responders (and I think they may be seeking FDA approval for this based on the results; (ii) mucosal melanoma and (iii) those with leptomingeal disease

I am not an expert but I know Dr. Hamid is good so thought I should post

Good luck to everyone, these days life seems to be ever more difficult, sadly

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This interesting article was just published yesterday however there is a fee to view, so I have posted below what I could find on the internet. The scientists had looked at seven types of tumors including melanoma and the bacteria found to be associated with them. Breast cancer tumors were found to have the most diverse bacteria associated with them whereas melanoma was found to have the least diverse bacteria. The study looked at 1500 tumor samples. It is believed that this tumor associated bacteria has implications in immunotherapy.

The human tumor microbiome is composed of tumor type–specific intracellular bacteria

Deborah Nejman1,* et al.

Science 29 May 2020:
Vol. 368, Issue 6494, pp. 973-980
DOI: 10.1126/science.aay9189

Bacteria are well-known residents in human tumors, but whether their presence is advantageous to the tumors or to the bacteria themselves has been unclear. As an initial step toward addressing this question, Nejman et al. produced an exhaustive catalog of the bacteria present in more than 1500 human tumors representing seven different tumor types (see the Perspective by Atreya and Turnbaugh). They found that the bacteria within tumors were localized within both cancer cells and immune cells and that the bacterial composition varied according to tumor type. Certain biologically plausible associations were identified. For example, breast cancer subtypes characterized by increased oxidative stress were enriched in bacteria that produce mycothiol, which can detoxify reactive oxygen species.

Science, this issue p. 973; see also p. 938


Bacteria were first detected in human tumors more than 100 years ago, but the characterization of the tumor microbiome has remained challenging because of its low biomass. We undertook a comprehensive analysis of the tumor microbiome, studying 1526 tumors and their adjacent normal tissues across seven cancer types, including breast, lung, ovary, pancreas, melanoma, bone, and brain tumors. We found that each tumor type has a distinct microbiome composition and that breast cancer has a particularly rich and diverse microbiome. The intratumor bacteria are mostly intracellular and are present in both cancer and immune cells. We also noted correlations between intratumor bacteria or their predicted functions with tumor types and subtypes, patients’ smoking status, and the response to immunotherapy.

Also a connected article in Medical press talking about the above research article

Hope you find this as interesting as I have.


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aquamak's picture
Replies 1
Last reply 5/25/2020 - 8:42am
Replies by: Bubbles

Hello all:

2020 update – Just had my 7 year PET/CT scan on 5/4 and it showed a foci of FDG avid attenuation in the parotid surgery bed as well as 4 enlarged left neck FDG avid lymph nodes. The lymph nodes are not large (i think 1.5 CM the largest) and the SUV relatively low (2.1-3.9) compared to the 7.7 I had 6+ years ago when I had my 1st occurrence. My Melanoma specialist is at a loss for words as I have been NED for 6 years and have had no recurrences. I had a left neck dissection and parotidectomy with 60+ lymph nodes removed and only 1 Lymph node involve with no extra capsular spread. I also participated in a dendritic cell vaccine trail but no other adjuvant therapy.
When we had our video-visit after my test I asked her if my infected left eye had any bearing on this and she said that having the infection was reassuring so instead of immediately going in for biopsies, etc. she decided to wait and re-scan in 3 weeks which will be on 6/1. In the meantime, I had a face-to-face (w/mask) exam by my eye MD and what was though to be bacterial pink eye turned out to be viral herpes simplex in my left eye which he said could definitely fire up the lymph nodes especially with reduced # of lymph nodes and altered lymphatic drainage due to the past surgery. So i sit and wait with extreme anxiety. I am hoping and praying for a positive outcome but I am very worried about it as I have a bad feeling.


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Julie in SoCal's picture
Replies 10
Last reply 6/3/2020 - 11:43pm

Hey there, Friends!!!

Just want to give you a quick update on what's going on here.

In April I had scans that showed a bit of mixed Larry the Lung Cancer progression- some stable stuff but a new lesion on my hip and some new lymph nodes lighting up. I had radiation to the hip and continued on a targeted chemo.

Then about 3 weeks ago I started to get a very mild but insistent back/shoulder pain and a changing cough. I tried to go the pulmonologist but had to take a COVID 19 test first. It took 10 days for me to get the results. UGH! I am COVID negative, though. So, when I saw the pulmonologist yesterday, he looked at my pet scan and said I have water in my lungs and he'd like to drain it out. :-0. The plan is to have my lungs drained and a CT Scan on Wed. I'll also see the Rock Star, but at that point in time, we won't have any results from the CT or the fluid cultures. Pneumonia is sounding good right now.

On the brighter side, I'll start Julie & Sheri's Grand Adventure 2020 (Grand Tetons, Yellowstone, and Glacier NPS) in 24 days! Yes friends, in just a little over 3 weeks we'll hook Chubbs (the tiny trailer) to Subie Blue, say goodbye to the dog (she's old and a long road trip like this won't be fun for her) and hit the road! I can't wait! Can ya' tell!?! I'll post pictures when I'm back,

Thank you, friends for your love and support.


Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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chipgoodhue's picture
Replies 8
Last reply 6/15/2020 - 8:29pm

My wife was diagnosed with Stage IIIB in December, had WAR on scalp and one small satellite tumor on neck removed, sentinels clean. Melanoma is Braf mutant, with high mitotic rate (10). Started Nivo in January. Small surficial skin lesions cropped up near surgery site in Feb, quickly followed by multiple subcutaneous tumors near the original satellite site. Ipi 3mg was added to the Nivo at the 4th infusion. She has now had 3 nivo only and 3 combined Ipi/Nivo infusions, unfortunately the neck tumors continue to progress and have coalesced into a area perhaps 1-1/2 inches across. Worse still, MRI and CT scan last Monday, brain clean but small tumors now present in liver (5) and lungs (2).

We are struggling to believe that a delayed immunotherapy response is possible given the rapid progression. We are reluctant to wait several months for another ipi/nivo infusion and more scans, thinking we need to push for switching over to BRAF/MEK targeted therapy now.

Would appreciate any insight others may have on this?

Thanks in advance!


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