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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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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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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TimCT's picture
Replies 28
Last reply 6/3/2020 - 8:19pm

Hi All,

I was just diagnosed on Monday evening with metastatic melanoma. A little of my backstory before a couple questions:

Since August/September I've been having non-specific symptoms on and off: fatigue, chills, body aches, dry & tired eyes. At the same time, it felt like I had pulled a muscle in my armpit. After rest, both issues subsided after a couple days. But they would come back. Then I felt a sore lymph node in my neck that had swollen up, but it went back down. Then my armpit was sore again and it occurred to me that it wasn't a pulled muscle, but also a swollen lymph node. Again though, lymph nodes went back down, symptoms subsided.

In November I had enough of not being able to shake whatever this was so I saw my GP, who sent me for 31 separate blood tests over the course of November/December. Nothing came back as out of the ordinary except that I tested as ANA positive. The upshot of all the tests was that I was being sent to see a rheumatologist, because of the ANA positive result. The bloodwork also showed that I had an EBV infection sometime in the past, so perhaps that had been reactivated. The prescription was rest and vitamin C until the rheumatology consult.

About 3 weeks ago, my neck started to swell under my left ear, and it was quite painful. As the swelling increased I could feel the pain behind my left eye, up the back of the left side of my head, on the left side of my jaw, in my left ear. I called my GP to report my new symptoms and was told the doctor would call me back if he had any questions. A week later, his PA called to say wanted another CBC.

I had been voicing my frustration all along to my wife, who is an OR nurse. She had gotten fed up enough with my complaining to mention it to a surgeon that she works with, who asked her if she wanted him to order an ultrasound for me. She did, and the next morning I was having an ultrasound of my neck, which showed a bunch of enlarged lymph nodes. The day after that I was in his office for a fine needle aspiration, and the day after that I was at the hospital having the largest lymph node removed for biopsy. I think the surgeon was thinking this was going to be lymphoma, and we were all very surprised to hear on the following Monday (2/3) that the pathology report had come back and this was melanoma.

On Tuesday I was in an oncologist's office who gave me the rundown on the immunotherapy meds available, response rates, side effects, etc. He also ordered a PET scan and a head MRI for Friday the 14th, and a visit to a dermatologist on the 25th.

So after a long time of seemingly doing nothing, there has been a flurry of activity over the past week and a half that has resulted in this diagnosis.

I have a couple questions. First, there is no obvious primary site. The surgeon who removed the lymph node looked me over fairly thoroughly and didn't see anything that looked abnormal. Will a PET scan show a lesion on the skin? I had an eye exam in September as well, and they didn't see anything of note then, either. Is the PET the be all/end all for determining all the places the cancer is?

Second, its been a long week of waiting and trying to wrap my mind around this diagnosis, and it'll be another long week of waiting for the scans on Friday, and then however many days until they're read and communicated back to me. Its sorta like this is the calm before the storm - is there anything I should be doing physically to prepare for treatment?

Thanks for listening, and for any help/advice!


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Replies by: 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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THMoore's picture
Replies 11
Last reply 5/27/2020 - 6:46pm

I am starting my OPDIVO journey tomorrow. I was wondering how many participating patients in this forum have had success with either OPDIVO or KEYTRUDA alone? I just had a neck node reoccurrence only one month after surgery and radiation. MDA wants me to leave the nodes in place and just start immunotherapy. I have been trying to read as many patient stories as possible within this patient forum. Now that's a task being a analytical person. It seems that most stories I read, patients here start on one immunotherapy drug and then end up on a combination. I know everyone is different. I appreciate any input and stories possible.

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Anni's picture
Replies 9
Last reply 5/26/2020 - 2:09am

Hi, I’m just wondering did anyone have a skin reaction from nivolumab and ipilimumab , opdivo and ketruda, my sister is experiencing raised psoriasis like rash pretty much all over, did anyone find any relief using any topical or other treatment?
Thank you

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chipgoodhue's picture
Replies 5
Last reply 5/25/2020 - 9:53pm

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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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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studiodad's picture
Replies 5
Last reply 5/24/2020 - 10:39pm
Replies by: BrianP, studiodad, MelMel, Edwin

I am stage 4 metastatic melanoma being treated with Nivo. I have had 9 treatments. I have been very fortunate to have experienced very few side effects: varying degrees of exhaustion, occasional rash, some gut pain, and that’s about it. I have read other patient entries and I am fully aware how luckyI have been in my treatment. I had an original mole on my upper back that was excised five years ago and I thought it was resolved. About two years ago a tumor was discovered in my back and a biopsy confirmed subcutaneous metastatic melanoma and it was excised. About six months later a small amount of bone cancer was discovered in my right scapula and this was diagnosed as a further metastasis. It responded well to radiation. During my 9 months of Nivo there has been no further metastases— no tumors, no obvious spread of cancer. Here is my question: Because my melanoma is subcutaneous with cancer cells flowing through my lymph system or fatty tissue undetected, am I at risk of dying within the time estimates on the longevity charts even though there are no positive cat scan or pet scan results of new tumors or organ involvement. I do not feel well and can’t point to any new event that explains my rundown condition. I am a young 75 year old experiencing a lifestyle change that is very frustrating. It clearly is not age that is causing this. When cancer takes a victim, can it include someone who has no persistent tumor growth or organ deterioration? The doctors tell me my scans and bloodwork are ok My body says otherwise. What do you think?
(I know many of you have experienced significant medical challenges with your melanoma treatment and may view my concerns as trivial. I do respect your courage. I am trying to formulate some end of life plans, but I simply cannot understand my true status given the subcutaneous nature of my melanoma..) I look forward to your views.

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Mark_DC's picture
Replies 4
Last reply 5/24/2020 - 10:23pm
Replies by: BrianP, MelMel, Brian j, Mark_DC

I think its from a February presentation, but Dr. Hamid just posted a link to it. There are a couple of other videos too.
This seems a great survey of treatments but at the end he also started mentioning new trials, which sound promising.

Hope this is useful and that it was not already posted.

Good luck to everyone

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I'm reaching out for some suggestions (or maybe encouragement) regarding managing the side effects of Dabrafenib (Tafinlar) + Trametinib (Mekinist). I have been on this targeted therapy for over 2.5 years and it has worked well to manage the metatises to the lymph nodes in my neck, chest and axila. For that I am thankful. Unfortuately, I have very much struggled with side effects that include nausea, vomiting, diarrhea, lack of appetite, chills, night sweats, heart failure and so on. I have taken breaks from treatment which have helped to restore my strength, malnutrition, etc. After being hospitalized for congestive heart failure in December 2019, I was put on 1/4 dose of Tafinlar and the Mekinist was eliminated. I will stay off the Mekinist until I have an echocardiogram that is within normal limits. I'm finding that even on the 1/4 dose of Tafinlar, I struggle with nausea, chills, night sweats and have devloped several wart like growths on my skin.

I am getting very discouraged and am having thoughts of giving up on treatment completely. Anyone out there have similar side effects? If so, how are you managing?

Thank you in advance for your responses.

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Replies by: THMoore, Bubbles

Hi everyone, I'm new to this forumn. My name is Lee Parsons and I was diagnosed with Melanoma in summer 2019. In September 2019 I had a cancerous mole removed from my right lower leg. In April of this year, I had a second cancerous mole removed that was near the other removed mole. At that time the doctor recommended that I have a CT Scan. From that scan I found out that the melanoma had spread to the lymph nodes in my pelvis, as well as some other area in my body. Normally I would have had those lymph nodes removed, but because I have respiratory issues and lymphedema that wasn't a possibility. Found out that the treatment for my melanoma would be immunotherapy called Pembrolizumab (Keytruda). It is risky for me because of the chance of severe side effects, and I'm already at a disadvantage because I'm immobile in a wheelchair with respiratory issues as well as liver issues. Has anybody with similar issues had this treatment and how were your side effects?

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THMoore's picture
Replies 9
Last reply 5/22/2020 - 10:39am
Replies by: Bubbles, THMoore

I was diagnosed 3B after I was diagnosed with Melanoma of the parotid gland in Feb. I am a patient at MD Anderson in Houston. I had no primary. Just woke up with a swollen neck. I had surgery Feb 26 to remove 48 nodes and a partial parotid. 1 lymph was melanoma. All others clean. I then had radiation to the area. Finished April 15th. I was rescanned Friday and have 2 lymph nodes in the same area that are positive. I was shocked. Nothing else was found. My question is why not remove the nodes while they are 2 mm? The Dr wants me to start Opdivo On Tuesday. Has anyone else had a recurrence 2 weeks post radiation. I feel like I wasted 2 months. I would truly appreciate any guidance and advice

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MLD1973's picture
Replies 3
Last reply 5/21/2020 - 5:10pm
Replies by: MLD1973, Butterfly74, Anonymous

Hello all,

Or the past couple of months my leg by my ankle is sore and I have noticed a swollen small lump just by my ankle towards the Achilles’ tendon. My MM is lower front same leg. I’ve called my doc who is sending me for an ultra sound scan he knows my history. I am so scared now.

M x

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