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 6
Last reply 2/9/2020 - 10:57am
Replies by: Bubbles, ed williams, Anonymous

AUSTIN, Texas, Feb. 7, 2020 /PRNewswire/ -- Elios Therapeutics, a biopharmaceutical company developing innovative personalized therapeutic cancer vaccines, today announced that the Company presented a subgroup analysis of the prospective, randomized, double-blind, placebo-controlled Phase IIb clinical trial evaluating its personalized tumor lysate, particle-loaded, dendritic cell (TLPLDC) vaccine, in patients with Stage III and IV resected melanoma.

In the study, 144 participants were randomized to receive either the vaccine or placebo to prevent recurrence. The vaccines were initiated within three months of completion of standard of care therapy at 0, 1, 2, 6, 12, and 18 months. The protocol was amended to allow concurrent treatment with checkpoint inhibitors once approved for the adjuvant setting. The primary endpoint was 24-month disease-free survival (DFS). This pre-specified sub-group analysis examined efficacy by stage, immunotherapy, and checkpoint inhibition. The analysis was performed on the intent-to-treat (ITT) population and per treatment (PT) population, which included all patients who completed the primary TLPLDC or placebo vaccine series at six months.

In the PT analysis, 24-month DFS improved among Stage IV patients in the TLPLDC vaccine group compared to placebo (73.0% vs. 0%; p=0.002) representing a statistically significant and clinically meaningful reduction in the relative risk of disease recurrence for these patients. An improvement was also seen in the ITT analysis (43.0% vs. 0%; p=0.098). Stage IV patients were more likely to receive checkpoint inhibitor therapy (50% vs. 26%, p=0.003). At the 24-month assessment, a difference in DFS between the vaccine and placebo arms was not observed in Stage III patients. Patients with Stage III disease often take longer to experience a recurrence than patients with Stage IV disease, therefore a 36-month assessment of DFS will determine the effect of treatment in this population.

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sks2019's picture
Replies 6
Last reply 2/7/2020 - 8:06pm
Replies by: sks2019, ed williams

Hello folks,
Those who have been following my posts can relate but I will give a summary again
Mom diagnosed with Vaginal melanoma Oct 2018 with metastsis to lymph nodes.
Surgery done to remove vaginal tumor.
Started Opdivo/Nivo Feb 6 ,2019 , Stable scans in May
August scans reveal two 1x1 cm lesions in liver
Sept 2019 started Ipi and Nivo combo.
Nov 2019 3rd dose of ipi/nivo
Severe colitis and hospitalization
dec 2019 scans again show tumor growth to 4 cm and more new lesions in liver
Jan 2019 , PET CT shows tumor grown to 7 cm
Melanoma doc at UCSF proposed trial Xmab20717 ( basically ipi/nivo with a different delivery way)
Radiation oncologist offered Y90 radio embolisation to liver
CPMC Melanoma doc is proposing another Trial basically a trial for Niraparib ( never heard of it before )

Now ..the real dilemma
Melanoma doc at UCSF wants to giver her ipi/nivo again with Y90 to see if it helps. ( Ipi/nivo gave her colitis and actually we saw disease progression after that )
Melanoma doc at CPMC wants to try the Niraparib as she hs a ATR mutation and Niraparib seemed to be promising for this mutation in Ovarian cancer patients and is more targeted.

As I have not heard of anybody on this board talking any of these. I am updating as well as seeking advice on what you feel should be a reasonable choice here.

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TimCT's picture
Replies 17
Last reply 3/20/2020 - 9:44am
Replies by: TimCT, casagrayson, Linny, Tsvetochka, RichInLife2, Bubbles, Anonymous

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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tkoss's picture
Replies 6
Last reply 2/11/2020 - 6:45am
Replies by: tkoss, Edwin, Anonymous

most of you know the procedure. infusion and blood draws. some have mentioned thryroid problems. I get to see the Onc less often than infusion, but I do get to look at test results thru my Oncologist patient portal.

what levels of what hormone or other indicator should I look for?

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hxcadam's picture
Replies 9
Last reply 2/8/2020 - 5:56pm

Hello everyone. I'm Adam. I joined years ago at first diagnosis but never posted. In Demember of 2016 I had a bleeding mole that wouldn't heal. Derm cut it off and found it to be Melanoma. It was on my upper right chest wall. 2.5mm deep. Diagnosed Stage3c. Went through the WLE which found the sentinel node had a trace amount of melanoma so they went back in and took all of my lymph nodes in my right arm pit. Thankfully no lymphedema. Had 2 rounds of ipi around June/July of 2017 but was taken off due to getting colitis. Was on 6 month scans until last week when on my CT showed 2 small spots (one being 1.5cm and one being 2cm) in my left lower lung and a small spot at 1.5cm on my spleen. Went for MRI this last Tuesday and was supposed to go for a lung biopsy today but the MRI showed 2 small spots so biopsy cancelled as that confirmed it was the melanoma spreading. Right now my oncologist at MSK Basking Ridge in NJ is suggesting radiation to the brain mets and possibly the lung/spleen mets and then start on immunotherapy. My reason for the post is to ask for advice/opinions and seek moral support.


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ed williams's picture
Replies 5
Last reply 2/7/2020 - 11:43pm

Nice interview of Dr. Allison and his work in discovering Ipi and his on going research at MD Anderson!

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texasgirl's picture
Replies 2
Last reply 2/7/2020 - 3:46pm
Replies by: Threefitty, Bubbles

My mother was diagnosed with stage IV melanoma in July 2018. She's been on Opdivo since and has been doing well - her first two scans looked promising in that most of the tumors had shrank or altogether disappeared. On her most recent scan, they found new nodules on her lungs. She said her doctor doesn't seem worried and that they're small. I've not seen the report yet. They'll do another scan in three months (instead of the usual 6) to check on them.

Has anyone had something similar happen? Was it indeed nothing? Why would new nodules develop now?

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Affinity4Mountains's picture
Replies 4
Last reply 2/8/2020 - 9:22pm

Hello! I am new to this forum and would appreciate any advice you can give me. Here is my back story:

Received stage 1A diagnosis in 2008 on left ankle with no recommendation for SNB. Treated for skin checks every 6 months. They were on the fence wether it was a abnormal spitz nevi but categorized it as melanoma.

Fast forward 11 years! Noticed lump in left groin in November of 2019 and diagnosed with stage 3B for one large 3cm lymph node that was removed in Dec 2019. They took out 3 other nodes in area and all were negative. There was no indication of a second skin lesion or tumor so the doctors think my recurrence is related to my 2008 tumor on my left ankle. Was put on Optivo every two weeks for adjuvant therapy and have had 3 doses that started early Jan 2020.

I received second PET (late Jan) showing a small (slightly less than 10mm) inflamed lymph node in the Porta Hepatis region behind the liver. The rest of my scan shows clear. My oncologist recommended to wait out another scan (3 months) to see if it’s status changes. His thought is that It is a possible reaction to the Optivo immunotherapy I am on that can cause inflamed nodes OR It is cancer in the node and hopefully the Optivo will start to treat it. I understand his thoughts but I was only on the therapy for 1 month and typically people don’t start reacting till 8-12 weeks but it is possible based on others comments online having early reactions.

It’s in a tough spot to get to but I have a gastro ent/ultrasound scheduled for next Tuesday where they think they might be able to biopsy it. My issue with this is if it is cancer and it is even possible to have surgery to extract it? Also I would most likely have to go off my immunotherapy treatment for at least two months (2-4 weeks before and 2-4 weeks after surgery) and is that worth it?

It’s like a game of chess. Is it worth knowing? Stress if I know/stress if don’t! Seems strange that Melanoma would possibly jump between these two locations and show only one node indicated now. I also know by talking to the PET scan technician that my second PET scan machine has a better camera and more sensitivity than the one I used last November.

Appreciate your candid thoughts!

Affinity4Mountains Stage3B

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Liro71's picture
Replies 9
Last reply 2/7/2020 - 3:50pm
Replies by: Liro71, Bubbles, tkoss, Anonymous, casagrayson, Edwin

My adult son's biopsy came back positive for Melanoma. The only information he was given was that it is Melanoma and that he would need to see an ENT Surgeon for lymph node biopsy, followed by a Plastic Surgeon to remove more of the ear.

I should preface this by saying he lost his Grandma, my mom, to Melanoma that metastasized to her brain over a decade ago. I had reached out to this community at that time and the advice and experiences that I received was invaluable. He had to witness his Grandma's decline and in home hospice.

He had a new mole on the top of his ear for the last three years. His PCP didn't feel it was suspicious, but referred him to a Derm. The Derm didn't think it was suspicious, but gave him the option to biopsy it, which he accepted. The Derm cut the entire mole off. I'm not sure what, if any margins there were included in the sample.

The Derm is out of town this week. Pathology referred him to an ENT surgeon, to remove lymph nodes for biopsy, whom he's consulting with next week. The surgeon's office also indicated that he would need to consult with a Plastic Surgeon to have more of his ear removed after the lymph node biopsy.

He contacted another major hospital in our area with Melanoma specialist and was told that both of their Melanoma specialists were out in maternity leave. He gave them permission to access his records in order to have other cancer specialists review and potentially provide recommendations.

He contacted the major Melanoma clinic in our state (WI) and was told to have the lymph node biopsy and then contact them once the results in so they can refer him to either the Dermatologists or Oncologists at the clinic.

Is it typical to be referred to a surgeon without even being explained the results of the biopsy and the next steps, other than go to an ENT surgeon to have lymph nodes removed and then they can give you information?

I only became involved in my mom's care after she had several surgeries and was in an advanced stage. I recall she may have had the wrong lymph nodes biopsied which may have delayed treatment. So, the lack of information concerns me.

Any help or guidance you can offer would be greatly appreciated!

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Lucygoose's picture
Replies 2
Last reply 2/5/2020 - 4:52pm
Replies by: ed williams, Bubbles


One of my melanoma friends is stage four and not responding to combination therapy. He is going to try a clinical trial for ALKS 4230. Is anyone familiar with this? I would appreciate any data you can share or links to data. Thank you



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Replies by: Bubbles, ed williams, tkoss

Hello All,

My grandmother has stage 4 with multiple brain mets and a few in the body. She had 2 doses of immunotherapy - with a partial response - followed by 4 months of predisone and 2 immuno-suppresion infusions due to colitis. The colitis has resolved mostly - although she does have new onset Afib from long term predisone use.

Nevertheless, her latest PET scan shows: " Since November 6, 2019, hypermetabolic pulmonary, nodal, adrenal lesions, suspicious for metastases; overall demonstrate increased hypermetabolic intensities on PET but unchanged sizes on companion CT."

The Doctor said let's follow-up and recheck in 3 months with another PET and "not to worry."

However, the above means an increase in metabolic activity - which means they are alive and likely to grow?

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ed williams's picture
Replies 5
Last reply 2/6/2020 - 8:40pm

When melanoma patients choose TIL's they normally get IL-2 after chemo depletion to rev the immune system up so that when they get the TIL's infusion, the IL-2 will help prime the immune system so the T-cell will get into the melanoma tumor cells. NKTR-214 has been in clinical trial (Pivot 02 trial) for a couple of years in combination with Pd-1 Nivolumab. They now called NKTR-214 "Bempegaldesleukin" which is old school IL-2 with a twist of being pegylated which reduces the toxicity compared with old school IL-2. Now, while we are still waiting for data on NKTR-214 + nivo to see if early trial results hold up, it does make sense to use it in TIL's. Here is a new research article from UCLA and Dr. Ribas, where they are developing a new twist to TIL's and hopefully in the near future it will be available for those who fail Immunotherapy or targeted therapy or maybe even a first line treatment approach one day.

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Casitas1's picture
Replies 10
Last reply 2/8/2020 - 9:56pm

Still kicking! 10 years post diagnosis stage 2b Desmoplastic Neurotropic Melanoma (amelanotic) ( Stage 4 - 4.5yrs.) (NED 4yrs.) and post treatment 3.5yrs. My new profile pic is my bucket list Bucket Mouth I caught last fall. 10 pounds 2 ounces.(released unharmed). Been fishing for one 30+yrs. Melanoma has a way of lighting a fire under your ass to accomplish stuff quick! I love everyone on this forum... and to those deep in the fight? YOU WILL BEAT THIS!

Best, Paul

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Lori0529's picture
Replies 8
Last reply 2/12/2020 - 8:28pm
Replies by: Bubbles, Lori0529, JudiAU

Dark “skin tag” on upper right thigh observed in November, 2015
11/12/15 Melanoma Diagnosis
Breslow Thickness 2.85
Clarks Level: Four
Ulceration: Present

12/1/15 Wide Excision Surgery
Sentinel Node Biopsy
At follow-up visit the doctor indicated that Sentinel Node Biopsy was negative, but in reviewing some of the report details it says “faint focus of additional activity”

Thankfully, I have not had any health issues since the surgery.

Have continued regular dermatology visits as well as CT scans of the Chest, Abdomen, and Pelvis/ follow up visits with a Melanoma specialist every 6 months.

All has been well …. until today.

Had a doctor visit today following CT scans last Friday.
The scan report indicates there is a 19 mm suspicious lymph node in the right groin.

Within the next 2 weeks he wants to proceed with:
Brain MRI
Whole Body PET scan
CT Scans of Chest, Abdomen, Pelvis
Surgeon Consultation

He indicated that if this lymph node is positive for melanoma, he would recommend:

Immunotherapy followed by surgery

I have an appointment with the surgeon tomorrow.
Are there specific questions I should be asking?
The possibility of a complete lymph node dissection sounds very scary.

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JudiAU's picture
Replies 12
Last reply 2/8/2020 - 9:42am

I thought this article in the New York Times was really interesting? It discusses new research related to melanocytes/stress/hair color. I had not developed any grey hair prior to medical problems and we don’t have a lot of grey hair in our family. My mother at 76 still has most of her natural hair color. My sister who is five years older has three grey hairs. But after the stress of the last three years plus brain radiation twice I have at least three hundred grey (regular texture) and white (coarser) hairs. All new. Often the same hair will change color visibly on the same strand. I cut my hair really short prior to surgery so it usually new growth.

So, we all have problems with melanocytes? Do you have grey hair? Do you think it is from stress? Treatment? Radiation?

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