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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*NOTE* somatic mutations are within the cancer tumor and are quite common. It is believed that a BAP1 germline mutation is not common, but the overall incidence is currently unknown

Hello All,

I have quite an interesting cancer journey. I was diagnosed with uveal (eye) melanoma in June 2015. In August 2015, I had treatment, enucleation (removal of the eye). During recovery, I found out my sister had cholangiocarcinoma, also a rare cancer like uveal melanoma. Unfortunately, my sister succumbed to the disease in February 2016.

In June 2016, during one of my routine surveillance oncology appointments, I was offered to be tested for a BAP1 germline (within my entire body) mutation. Not so surprisingly, I tested positive for the mutation.

BAP1 germline mutation (BAP1-TPDS tumor predisposition syndrome) is a protein on the BRACA1 protein. The mutation is known to cause cutaneous melanoma, uveal melanoma, and mesothelioma. A laundry list of other cancers is also suspected to be caused by a BAP1 germline mutation.

I have participated in quite a few studies (Ohio State University, University of Hawaii, and NIH). Still, there is no known treatment for this syndrome.

I'm hoping to find and connect with anyone else who may have a germline mutation.

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Anonymous's picture
Replies 7
Last reply 5/6/2020 - 12:05am
Replies by: KAP715, Anonymous

Hi I have been diagnosed with Stage One Melanoma on my upper back. I am very worried. I have read that body site can influence prognosis and that when found on the back it does not have a good prognosis as compared with extremities. Can anyone explain this and also are there any Stage One people who have had no spread from a primary melanoma on their back to give me some hope?
Thank you for your help.

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S.lavelle's picture
Replies 3
Last reply 6/9/2020 - 11:15pm
Replies by: jrtufo, S.lavelle, sandyd77

Hi I am starting this treatment tomorrow. Could anyone give me and info on what to expect please?

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caman's picture
Replies 1
Last reply 5/1/2020 - 4:01pm
Replies by: Lucas

Hello friends, Has anyone else experience high sugar levels with keytruda. Mine is presently 150 and I been on medication for about one month. I understand in small percentage of people it can cause diabetes. Any concerns here??? All the best to everyone!

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Bubbles's picture
Replies 13
Last reply 5/10/2020 - 12:01pm

Ten years ago today, I had the right upper lobe of my lung removed three days after having radiation to a brain met, all due to melanoma, diagnosed at Stage IIIb seven years prior.
Today, I share these photos and my story, hoping that they provide some small joy, some spark of hope, a message of beauty and love, to those that are hurting. You are stronger than you think. And for all the pain and suffering - there is beauty ~ still.

Much love to each of you. les

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Tsvetochka's picture
Replies 4
Last reply 5/11/2020 - 8:03pm

I am waiting for confirmation from my doctor, but if I'm reading these PET scan results right, they mean NED!!! So, my first question is for those who have reached that point: how did you celebrate? One year from Stage 4 diagnosis to NED?!?!

And then: what kind of follow up should I be expecting after this. We did about nine months of Keytruda, and now I think we're DONE. What happens after this?

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

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Hello everyone,

Hope you are all OK during the chaos cuased by the virus.

Anyhow, my ALT (330) and AST (110 ) are stubborn and went up by 20 and 22 respectively, so the liver specialist will go from 35mg of prednisone to 55mg and then taper off by 5mg per week. It should bring those levels down, but I am disappointed at the prospect of another three weeks here. I have been here for two weeks already. I guess I am lucky to get admitted to hospital while the virus is going around. Ah well, at least the tumours are shrinking! I just hope the response continues.
Thanks in advance to Melanie for the warning! You were right.
I haven't really had side effects from 35mg but imagine 55mg will bring some side effects. I hope I don't get hungry as the meal portions here in Japan are not exactly big! No snacking either because of glucose level risks!

All the best,

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SRVilly's picture
Replies 6
Last reply 5/1/2020 - 1:15am
Replies by: Tsvetochka, Anonymous, Beany, Bubbles, Rob is grateful, JudiAU

Hello everyone,

It's been a while since I've posted, here is a quick recap:

May 2016 DX with stage 1b on right calf
June 2017 found a lump in right groin, biopsy shows melanoma
July 2017 CLND to right groin all clear
Dec. 2017 PET shows 10 "spots" on liver
Jan. 2018 started Opdivo only due to pre-existing Colitis
March 2018 PET shows no uptake or "spots" on liver (never showed again in 2 years of PETs)
Dec. 2018 Hemoglobin started taking a dive
Dec. 2018 PET shows two spots in small bowel
Jan. 2019 Had colonoscopy, endoscopy, camera endoscopy to try and find the source of bleed and take a look at small bowel, but it is in a spot that they couldn't see
Feb. 2019 Had surgery to remove two spots in small bowel...yep...Melanoma
March 2019 Restarted Opdivo
April 2020 after a year of clear PETs Onc says its time to stop Opdivo and only see her every 2 months

So here we are. My first month without an infusion or Dr. visit in 28 months. I am thrilled not having to go to the hospital every 2 weeks (especially now with everything going on), but there is certain comfort in getting blood work and infusions every two weeks. I knew I couldn't and didn't want to be on Opdivo forever...28 months is long enough, but I was lucky and had no side effects and, except for the two surgeries, I didn't miss any work due to the treatments. I'll still have PETs every 3 months for the rest of this year, then after all is well, spread them out longer next year.

I am so thankful for these results. I'm just hoping the Opdivo has taught my body to keep this disease at bay. I am excited for this next phase of my life. I know it will always be in the back of my mind, but I am hoping the lack of Dr. visits and infusions will keep me focused on the good things.

Best wishes to all of you. Stay safe.

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KAP715's picture
Replies 9
Last reply 4/30/2020 - 9:06pm

Had a recurrence in my neck 9 months after a neck dissection and adjuvant pembro obviously hasn't worked for me. I have a subcutaneous tumor right underneath the incision from my previous surgery. Can anyone share their experiences with T-VEC? That's what my onc is recommending for the next phase of my treatment. Unfortunately PD-1 immunotherapy isn't working for me.

Diagnosed stage 2 Oct 2014. Stage 3b May 2019.

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caman's picture
Replies 5
Last reply 4/29/2020 - 5:24pm
Replies by: caman, ed williams, Bubbles

Hi fellow warriors,

Just finished my first month on Keytruda, and results are real good. The tumor on my neck shrunk significantly, there's hardly anything left of that little animal.

But I been reading about on PDL1 expression and its use as a prognostic indicator. 50 percent and above is a real good indicator immunotherapy will be effective and the prognosis is much better.

Mine was 5 percent. My doctor said that's good enough. He also said depending when the expression was taken, before immunotherapy or after, the percentage would be different. If done after, the percentage would be higher. Mines was taken before. Anyone else here have any experience with this you can share? Thank you!

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boatski's picture
Replies 4
Last reply 4/30/2020 - 5:38pm
Replies by: boatski, sj, SABKLYN

Hey all,

You can see me last post for details on my brief melanoma experience. Basically I am 2b (ear) with Negative SLN. It was found in February and surgery was early March. These past several weeks I've had very mild headaches. They sound completely opposite of what I've read about, they typically are better in the morning and get worse in the evening. Advil doesn't seem to help, but I was on it for most of March because for some reason my body didn't like stronger opioids post surgery (couldn't sleep haha). Caffeine does seem to help some. I'm chalking it up to stress because there does seem to be a high correlation with stress/anxiety and headache intensity. It varies from about a 1/10 to 2/10 on the pain scale. I have no other symptoms. My surgeon and onc suggested that it was unlikely Melanoma in the brain. I am getting an MRI tomorrow (last one was less than 2 months ago).

I know this is pretty strong paranoia, since I just had an MRI, the symptoms don't seem to be typical of a brain met from what i've read, and I'm only stage 2. But I'm curious if others have experienced a quick just from stage 2-4. Partially just trying to stay engaged with something as my work is currently very slow with virus and I have far too little to do at the moment.

I've also tried numerous anti-anxiety medicines and they don't appear to have an impact. Even the strong stuff doesn't seem to reduce anxiety.

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Anonymous's picture
Replies 3
Last reply 5/1/2020 - 2:39pm
Replies by: Anonymous, THMoore, Linny

Is there anyone who was originally diagnosed as 3B, still 3B?

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Sdmotorcop's picture
Replies 5
Last reply 4/29/2020 - 2:18pm
Replies by: Edwin, Bubbles, sandyd77, BillB

After I advanced from a 3C to stage IV, my oncologist had me stop taking Nivo (I had 10 of 12 infusions). He then started me on IPI (first dose last Friday). I asked him why he wasn’t giving the IPI in combination with the Nivo. He told me it was obvious the Nivo had not done it’s job and wanted to approach it from a different angle.

My question is this... will I get the benefits of a “combo” without actually having both meds administered at the same time? Does the Nivo that I’ve already had continue to work without having more infusions?

Thank you for any insight



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boatski's picture
Replies 2
Last reply 4/28/2020 - 10:19am
Replies by: boatski, chrispl1974

Hey all,

I've been reading a lot on here but decided to enter the conversation. I had a whirlwind Diagnosis. In Nov I had a skin check and nothing was exciting. In January I noticed a new nodule on my ear. It grew pretty quickly and I finally got into the doctor in mid February. The Derm said it was not likely to be anything but did a deep shave biopsy (first biopsy ever as a 31 M, so had no idea otherwise). Got a call 4 days later that it was aggressive nodular amelanotic (not pigmented) melanoma. Was rushed to appointments with oncologist and surgeon who does a ton of neck dissections. Had an MRI, CT, bloodwork and chest x-ray. All came back good. Had a WAE on March 12 with 4 nodes in the SLNB. Got the good news that they all came back negative. Officially I am in 2b now. However I'm really quite on edge. My pathology (below) indicates that I just about as high risk as possible. That in combination with the ear location is making me paranoid (and I'm told rightfully so). Anyone been through this? I know that it could be that nothing else happens but it just seems like a very high risk situation. I'm looking at a nivo clinical trial but may not qualify depending on when it reopens from COVID. Being stuck at home is making me stew more than I should be. I'm working with a counselor but it's still hard to get over anxiety that has a legitimate source haha.

Mitotic rate -11
Depth - 3.5 (at least, I'm told it was 3.5 but I was told at least 3.5 with shave)
Ulceration - positive
Lympohvascular invasion - positive

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Wildcat99's picture
Replies 7
Last reply 4/28/2020 - 9:52pm

Hope everyone is doing well. I'm a newly diagnosed stage 3b. I had a neck dissection 4 weeks ago to remove a golf ball sized growth on one lymph node and had many others removed (all of the others were clean). Plan is to lay low another few weeks given Covid and then regroup to discuss treatment options again. After initial meetings, I'm probably headed down the Opdivo path. My question to this group is regarding the use of radiation in the neck prior to receiving Opdivo...the doctors tell me it helps prevent the melanoma from coming back in the same area but doesn't improve OS rates. So I'm trying to figure out if it makes sense to get radiation given the potential side effects. Any thoughts/advice would be much appreciative. Thanks for reading my post. Take care.

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