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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fedupnurse67's picture
Replies 2
Last reply 9/11/2019 - 9:14am
Replies by: Linny, MelMel

Had my PET scan on Thursday, got the results the same day in my patient portal. Have not seen my oncologist yet, won't see him till the 18th, but have a few questions. Also have an appointment scheduled with a surgical oncologist to see about removing the cancerous lymph nodes. I'm thinking that because of location I'm not a surgical candidate.

1) report states that I have low level metabolic activity throughout the adrenal glands and pancreas. No pancreatic ductal dilatation. Is this normal? My mother died of pancreatic cancer in 2001 so I worry. But my genetic testing shows me as negative for anything to pass on to my kids.

2) report mentions 2 metabolically active lymph nodes, 1 on the left common iliac conglomerate lymphadenopathy, SUV 13. 6. 1 on the left external iliac chain lmyphadenopathy SUV 8.3. the metabolically active lymph nodes are the ones with the cancer?

Final impression: bulky metabolically active lymph node metastases involving the left common iliac and left external iliac chains. No metabolically active retroperitoneal lymphadenopathy .

Basically the melanoma is only in this area? Also where exactly is the iliac chain of lymph nodes located?


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Hello people,

Looking for some feedback/opinions on my situation, and particularly on CLNDs. Here’s the backstory:

Diagnosed IIIB 18 months ago. Resected and scans clear. Put on 12-month blind clinical trial of either opdivo or yervoy+opdivo. Scans clear through 15 months. Last month, ground-glass area in CT scan, which they thought might be a slow growing tumor, but they didn’t think it was melanoma. So I was starting to feel pretty good, and then … dermatologist visit finds three new melanomas on the skin. Lab report indicates probable distant spread from original primary, which would make me stage 4. Oncologist disagrees though. I had just done a CT scan, and other than the ground-glass area, which he DOES NOT think looks like melanoma, they didn’t see anything. Orders a PET scan, but says that - until proof to contrary - says that we are going to treat it as three new primaries. Should say that they have been pretty widely-dispersed on body. First, primary was on middle-upper back, the next three on left shoulder, right chest and left buttocks. PET came back clean (even ground-glass area wasn’t showing up-take).

So, last week, I had three simultaneous WLE/SLNBs. The people at Abbott NW in Minneapolis told me that was a record. Never seen three simultaneous WLEs, and I’ve now had 4 melanomas (perhaps all new primaries, but I’m not convinced that they know for sure) in two years). Bad news is that they found a small tumor in the sentinal lymph node for ALL three cases.

Wondering about next steps. I made it through my immunotherapy (whichever it was) with only moderate shortness of breath and dry-mouth. Assuming that the other three are unrelated, it appears that it was possibly effective and NOT uneffective (no spread). We didn’t do a CLND, partly because they said that there was a study that said that it didn’t improve survivability, and second because my tumors from the back were found in one lymph node on both sides, so they would have had to take out both the right and left side axillary.

I’m pretty sure that they will recommend return to immunotherapy, which seems logical to me. Here’s my question. I’m afraid that they are going to recommend the CLND this time around, and it would be three areas this time. Right axillary, left axillary, and left groin. For people that have had the CLND, how bad was it, and how did it affect quality of life? Has anyone ever had all lymph nodes from two areas removed? What about three? I’m pretty sure that - if it’s suggested - I’m going to refuse, but I would love to get experiences from people who have had it. Thanks for reading.

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Gene_S's picture
Replies 2
Last reply 9/10/2019 - 12:11am
Replies by: MelanomaMike, MelMel

Tumor-Targeting Gut Bacteria "Turn Off" Melanoma

A funny thing is happening in the world of cancer treatment. It’s subtle. People who don’t read about cancer on a regular basis may not notice it.

But ever so slowly, the pendulum on treatment is swinging back around from the mania for invasive drugs and procedures to a focus on the immune system.

Instead of coming up with weapons to directly kill cancer cells, immunotherapy helps the immune system do the killing. It seeks to arm the body’s immune system with tools needed to fight specific aspects of cancer.

Today I have an especially fascinating example of the new breakthroughs in immune therapy.

And in contrast to the most powerful high-tech and chemical medical creations the world has ever seen, this pivots toward the tiniest, most basic of all healing organisms: your gut bacteria.

The Jekyll-and-Hyde nature of your gut bacteria

One immunotherapy treatment uses drugs called immune checkpoint inhibitors, which are able to block proteins produced by cancer cells that protect them against immune cells.

But not all types of cancer respond to treatments using immune checkpoint inhibitors. Side effects from these drugs can also be severe.

So it’s fascinating and downright promising that a new study from Nature Communications documents the discovery of a link between gut bacteria and anti-tumor immunity. Building on this research, scientists should be able to pinpoint people most likely to benefit from cancer treatment through immune checkpoint inhibitors.

Anti-tumor immunity no longer wishful thinking

It all starts with the way gut bacteria interact with the immune system to fight cancer. In the study, multiple strains of gut bacteria were identified as helping to slow the growth of melanoma in mice.

The researchers were part of a large international team that included collaboration with three hospitals. They used mice that lack something called the RING finger protein 5 (RNF5), which helps cells remove rogue proteins. The research revealed that among the RNF5-deficient mice, those with healthy immune systems and intact gut microbe populations were able to stopmelanoma – a deadly, highly aggressive cancer.

Incredibly, if those same RNF5-lacking mice were housed with mice that did not lack the protein, the animals lost their ability to fight off the melanoma tumors. The same thing happened if the RNF5-lacking mice were treated with antibiotics. Both examples show the enormous role microbes play when it comes to antitumor immune defenses, and how susceptible they are to environment.

The investigators even highlighted a signaling pathway known as unfolded protein response (UPR) as the link between the gut bacteria and the antitumor fighting ability of the immune system. UPR appears to be a solid marker for selecting patients with melanoma who are more likely to benefit from immune checkpoint therapy.

According to senior study author Ze'ev Ronai, a professor at Sanford Burnham Prebys in La Jolla, California, the results of the study pinpoint a group of bacterial strains “that could turn on antitumor immunity and biomarkers that could be used to stratify people with melanoma for treatment with select checkpoint inhibitors.”

They concluded the components of the immune system in the gut, plus the reduction in UPR in both immune and gut cells, played a role in activating the immune cells.

Melanoma was targeted in part because it is the deadliest of all the skin cancers, even though it only accounts for about one percent of skin cancer diagnoses. Immune checkpoint inhibitors have already had a striking effect on boosting survival rates for melanoma. But of all the types of skin cancer, melanoma is the most likely to invade nearby tissues. Once that happens, the risk of death rises dramatically.

The investigators took the research one step further and identified 11 strains of bacteria in the RNF5-lacking mice. When they transplanted those strains to mice with no gut bacteria, an entire antitumor response was triggered and melanoma tumor growth decreased.

You’ll never replace the real thing

So, what does this mean for you if you’re worried about melanoma? If you’re interested in immunotherapy, at the very least start the conversation with your doctor about getting tested to see if your gut microbiome makes you a strong candidate. Such tests and routes to ideal-candidate treatment may still be in the uncertain future, but there could be studies you can join before a specific testing strategy is public.

In the meantime, this gives the rest of us further reason to eat a diet that supports a healthy gut. New findings presented at the 2019 Annual Meeting for the American Association for Cancer Research support the idea.

Researchers looked at patients just starting treatment and determined that a high-fiber diet, which leads to more diverse intestinal bacteria, is linked to a stronger response to Anti-PD-1, an immunotherapy that helps the immune system recognize cancer cells as dangerous.

In this study, researchers collected fecal samples from over 100 people receiving treatment for melanoma and compared tests for gut bacteria to a survey each participant completed about their diets. Their findings show a high-fiber diet, abundant in vegetables, fruits, and whole grains, was associated with the types of bacteria previously linked to better response to anti-PD-1 therapy.

Interestingly, the researchers also found that roughly 40 percent of study participants were taking a probiotic supplement, but that probiotic use was linked to a lower diversity of the gut microbiome. This may not be a bad rap on the probiotics themselves, as it’s possible those who took probiotics did itinstead of eating high-fiber foods, as opposed to taking the supplement withtheir high fiber foods.

Separately, the researchers looked at a group of almost 50 patients who supplied information on diet and gut microbiome and determined those on a high-fiber diet were about five times more likely to respond favorably to anti-PD-1 treatment than those who ate a low-fiber diet.

Better food = Better outcomes, always

I’m looking forward to findings from the follow-up research to the first study I mentioned. The upcoming results will be focused on distinguishing the antitumor molecules produced by the gut bacteria of the mice that fought off melanoma.

Researchers plan to run tests on the “antitumor powers” of those molecules to figure out which probiotics might increase the effectiveness of those same molecules in people with melanoma.

But at the end of the day, the truth is simple. A high-fiber diet, heavy on a variety of plant-based foods, leads to more diversity in your gut flora, and more diversity strengthens your immune system, and that gives you better outcomes in the prevention and treatment of cancer.

Lee Euler, Publisher

“Gut microbes can spur immune system to attack cancer.” By Catharine Paddock, Medical News Today, 2 April 2019.
“Gut microbiota dependent anti-tumor immunity restricts melanoma growth in Rnf5−/− mice.” By Yan Li, et al. Nature Communicationsvolume 10, Article number: 1492 (2019).
“High-Fiber Diet May Help Your Gut Battle Melanoma.” By Serena Gordon, 27 February 2019.

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

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Rdcpt28's picture
Replies 14
Last reply 9/11/2019 - 2:10pm

Hi everyone! Brand new here, and this might be a bit of a lengthy post.

I went to the derm Aug 27 for a strange looking mole to get checked out. The PA did a shave biopsy (it’s on my upper abdomen) and found another suspicious one on my upper back so took that one too.

I got a call back one week later saying that the one on my abdomen was fine but I had to come back in to get the one one my back removed. I didn’t ask questions because she seemed really unsure (kept putting me on hold to decipher the report) and I didn’t really understand the terminology she was using. She scheduled my excision for October 18th so I was assuming this wasn’t a big deal since I could wait so long to come in.

She calls me back an hour later asking me to come in earlier but I declined because it was on a day I had a work event. I made sure that it was okay that I waited and she replied YES!! You’re fine!

She called me back the next day saying I needed to come in the following day to get this done so I agreed now slightly freaking out.

I go in my for excision and the Doc explains the spot is severely dysplastic and the next step would cancer so they need to take it out and get it to the lab and I may need to come back so they can take more out.

when I checked out I had received a copy of my procedure and it read that I had an excision of a malignant lesion done. I don’t have a copy of my path report but if they can code malignant lesion for the procedure doesn’t there have to be mention of actual cancer in the pathology report? If it was only dysplastic wouldn’t it be benign?

Now I’m nervous that the doc didn’t really give me all the info- should I be scared? Will I get some different news once the excision results come in?
I just need some reassurance because I think I’m panicking for no reason!

Thanks to all who took time to read this’

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Cindy Lou's picture
Replies 8
Last reply 9/8/2019 - 9:19pm

Good morning. I had surgery yesterday to remove multiple lumps which had appeared over the last few weeks in my neck by my scar from the previous selective neck dissection. The fine needle biopsy had failed to provide a good enough sample. The unofficial result from the doctor: “obviously melanoma. clusters of mel cells in soft tissue”. Official results next week. Has anyone experienced this? Keep up the fight, my friends.

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19

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MelanomaMike's picture
Replies 4
Last reply 9/8/2019 - 8:22pm

Hi guys & gals, just checkin in with ya and to re-post my GFM link, i guess i should have been doing this whenever i posted here on MRF after we launched it, i dont know, our sister Cindy Lou explained it as being to "Humble", im thinkin thats it is again for those who may have missed it, if ya can ya can, if ya cant ya cant, just the Support & Love is whats keeping me going since everything stopped (surgerys & Opdivo) back in early you guys...

Melanoma Will Not Beat Me or my MRF Family!

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Cindy Lou's picture
Replies 2
Last reply 9/6/2019 - 1:00pm
Replies by: MelanomaMike, Suzana65

Hi, everyone, if you can donate $5, or any amount to Mike’s Go Fund Me account so that he can be treated by Dr. Hamid, it would be much appreciated. It all adds up, you know. My husband and I have suffered the financial burden of seeing an out of network doctor also so I empathize greatly. Just wanted to send out a reminder because Mike seems to humble to do so. Here’s the link If link does not work, please copy & paste.
Thanks to everyone! Keep up the fight, my friends!

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19

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GerryG's picture
Replies 4
Last reply 9/6/2019 - 3:49pm
Replies by: GerryG, lkb, Bubbles

October 2017 two consecutive doses of Combi, stopped due elevated Liver enzymes . Treated with high dose steroids followed by another 2 immunosuppressive drugs, course lasted approximately 6 months. To date no other treatment.
Scan today showed NED, which highlights you don’t always need lots of doses of these drugs, also immunosuppressants for AEs don’t prevent drug efficiency.
My primary was removed in 2001, became stage 4 2017, Mets to lung Liver and neck Lymph-node.

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Tsvetochka's picture
Replies 4
Last reply 9/6/2019 - 9:35pm

Does anyone know what Keytruda does to the immune system, other than helping it fight cancer? I caught a cold, and it seems like my immune system is going into overdrive about it. The rest of my family was mildly sick. I feel absolutely awful! Related to Keytruda, or just coincidence?

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MelanomaMike's picture
Replies 5
Last reply 9/5/2019 - 8:35pm

Hi guys!, hope everyones doing good and or at the least, stable, i really cant believe im finally seeing Dr. Hamid! Thank thank thank thank thank everyone!!! Do you know i gotta call from Dr Jangs nurse asking if im gunna let Jang treat me or go back to my reg onco! Can you believe that? Am i on a time limit i said?! She asked that Instead of maybe; " Get yer ass in here what are you waiting for!"..
I dont know, maybe im to sensitive? Iv had it up to here with Jang insensitivity! (Im motioning my hand up high)... whatever, Dr. Hamid cant come sooner!!i said i was seeing a 2nd opinion doctor, she asked if he/she was "Outside" of Kaiser to! Haha...i said HELL YAH the doc is!...

Melanoma Will Not Beat Me or my MRF Family!

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MarkR's picture
Replies 21
Last reply 9/9/2019 - 3:09am

Went for CT / MRI scan results today and not great news again. At 3 month scan was told stable but a little growth in some nodules that could be prior to a response. Today told that Liver nodules (didn’t know I had any!!) had grown and concerned about disease progression. Evidently some small spots appeared on my last scan but too small to be considered of significance. Overall my tumour burden is still very low and bloods are all normal.

We had a chat about things and I mentioned the suspected vitiligo on my face, which he was interested in and confirmed it was. As it only appeared 6 weeks ago he feels I may still respond and said that he has not known someone to have vitiligo and not have a response.... (please if you know different on this then I really would sooner not know!!) He was involved in all the major trials and was lead author on the first report on the Ipi Nivo trials so hanging a fair bit on his words.

Going to continue Nivo for another 3 months but if progression again then it will need to be clinical trials. He isn’t keen on adding Ipi again as I will likely have another severe reaction and thought could jeopardise trials that might be more promising. He spoke about trials where the immune system is extracted, upgraded and re-administered as his preferred option (can’t remember the term he used!!)

Pretty worried about all this but I know response has been seen as late as 10 months in some trials so am trying to remain hopeful!!

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amberstewart's picture
Replies 8
Last reply 9/8/2019 - 10:39pm


I was diagnosed with a stage 1A primary melanoma in June. I’ve been going for my quarterly check ups. Yesterday I had a biopsy of an abnormal spot on my posterior hip/butt cheek. I was cleaning the wound this morning and it looks like there’s still some pigmentation in the biopsy area. Is this a certain sig. of melanoma? Or could the area just have deep pigmentation and be considered abnormal? It wasn’t a scrape biopsy, but I’m not sure if it was a punch or excisional.

I’m sure nobody can say for sure, but I just hate having to wait for results over the weekend.


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Cindy Lou's picture
Replies 9
Last reply 9/7/2019 - 3:03pm

I recently had a fine needle biopsy of a lymph node in my neck and a suspicious lump under my jaw bone. The biopsy was botched by the doctor. I could tell he didn’t know what he was doing. He hit a nerve which brought me excruciating pain. This ain’t my first rodeo. I had biopsies before. This man was not familiar with the procedure. I was told by the phone nurse last week that the biopsy was negative for melanoma so I had a good weekend thinking I was in the clear. Nope! Wrong. I went to my oncologist today for the actual results. Guess what. He did not even get a sample from within the node. He missed the node. This southern belle is losing her patience. Now, I am to have the lymph node removed for biopsy. The lump under the jaw is ok but there is concern for the level 2 lymph node. So, slice and dice on my neck again. More anxiety. Oh, joy. I hope you are all having a better day. Thanks for “listening”. Keep up the fight, my friends.

Cindy Lou

Stage 3C resected; Primary cheek 1.9 ulcerated Clark lvl IV WLE neg SNB 7/2015; Satellite met cheek WLE 3/2016; Mets sentinel nodes SND & Parotidectomy 10/2018; 12 treatments Opdivo disc. in May 19; surgery mets in neck 9/19

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BKPmax's picture
Replies 15
Last reply 9/5/2019 - 10:33pm

Stage 4 Melanoma to current remission.
Total Infusions: 1 of Nivolumab & Yervo, then 14 Nivolumab alone.

It's been 4 month after being taken off Nivolumab (Opdivo) and I still get rashes, numbness, etc. It feels like Opdivo is still racing around my system. Some symptoms are even more strong than before!
(Numb / weak hands). What's the knowledge base of side effects post Nivolumab treatment?

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