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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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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*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 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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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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Hi all,

After a whirlwind 2-months it seems like this isn't going to end anytime soon. Two months ago I had a 2b melanoma removed from my ear with WAE and SLNB. Negative on SLNB and margins were clear. About 5 weeks after surgery I had a skin check for a new mole that appeared on the ear that just had the WAE. The derm said it looked normal but because it was new we were going to remove it. He said that even if it was melanoma it would be small and a new one rather than a resurgence.

Results came back today and it was moderately atypical but not melanoma. I'm supposed to go back and get margins around this one. Derm said it was not much to worry about and would just be some more off my ear (what's left haha). I spoke to the surgeon and he seemed concerned that this could be a resurgence and would send me to stage 3. I'm guessing he was concerned that the pathologists missed that is was melanoma? or perhaps was turning into melanoma? but from the old one and not a new one?

I haven't received the pathology report yet but the internet is less than helpful on moderately atypical. That seems more often used to describe the mole itself. I think it would be a coincidence that I had a new mole that was unrelated, but it didn't look like resurgence from what I could find. Anyone know more resurgence/atypical versus melanoma? I'm confused from the different perspectives from doctors.

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Anonymous's picture
Replies 9
Last reply 5/2/2020 - 4:20am
Replies by: Anonymous, SABKLYN, Mark 2020

I have recently been diagnosed at stage one. I am so scared and it is affecting my day to day living. I feel frozen and keep researching on the internet which only makes it all feel worse. I am so fearful it will spread at some stage and I'm waiting for a lump in my nodes to appear.
Does this feeling ever subside? It has changed my whole life and I don't want to feel so scared all the time.

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Anonymous's picture
Replies 2
Last reply 5/3/2020 - 7:08am
Replies by: Anonymous, Julie in SoCal

Hi, I have read a lot of reassuring and positive replies by Janner. Is she still on this forum and able to help? I am hoping there is a support group for Stage One people as I am newly diagnosed and struggling with the uncertainties of this. I admire the strength and courage of everyone on this forum and need some help. There seems to be many people who were in my position and are now Stage 4, I worry about the cancer spreading as it seems like it happens a lot.
Thank you.

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Butterfly74's picture
Replies 15
Last reply 5/4/2020 - 11:33pm

I am new to this forum. I'm hoping people can help, I have recently been diagnosed as Stage 1a with a thickness of 0.7mm with no ulceration or zero mitosis. My doctor says we have caught it early but I am very worried about the Clark Level which is 4, meaning it is deep. I'm worried that this makes me more advanced than Stage 1. I am having a wider exercision of 1cm around the site in a couple of weeks. I am struggling to deal with all this.
Thanks for any advice.

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I was diagnosed with Stage 4 Melanoma in 8/2017. I have mets to multiple lymph nodes. I have been on the Tafinlar/Mekinist Combo since then and have responded very well. Mosty all of the lymphy nodes are now within normal limits. The side effects have been difficult and many. I am on intermittent dosing. In December of 2019 I was hospitalized for congestive heart failure. I was taken off the Mekinist as that seems to be the culprit. After consultation with a Melanoma specialist, I cannot resume the Mekinist until I have an echocardigram that is within normal limits. With the elimination of the Mekinist, the side effects of the Tafinlar seem to be more intense (nausea, vomiting, diarrhea, chills and now intense joint pain). I learned that the combo of the two drugs helps to control their toxicity.
Although the dosage of Tafinlar has been reduced, I still have significan discomfort from the side effects. My quality of llife.\ is not where I would like it to be. Anyone else develop cardiac problems with these medications?

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LH2000's picture
Replies 3
Last reply 5/5/2020 - 7:14pm
Replies by: Bubbles, LH2000

My wife diagnosed with stage 4 in Oct 2018, no recent primary but had small stage 2 in 2006 w clean scans for 5+ yrs and stopped by insurance and STD of care.

1. Ipi Nivo combo, 2 infusions and then grade 3 AE in hospital 2 days. 4 month taper on steroids, no treatment. Initial 25-30 pct shrinkage. Also SRS radiation for some brain Mets.

2. Finally resumed Nivo only for 3 treatments. Growth.

3. Due to NRAS mutation, tried Trametinib MEK inhibitor solo 4 mo. Initial some response, then growth.

4. Tried Nivo plus olapaparib due to ATM mutation. Growth.

5. Back to Ipi 3 mg solo plus Leukine injections to help reduce toxicity. Garde 1-2 AE. Oncologist wants to stop ipi.

6. Recommend TMZ plus Hydroxychloroquine, it works as anti- autophagy for cancer. Due to regrowth of brain Mets. We're doing more SRS radiation instead.

What do we try next?????

Need a good COMBO therapy, our doc doing too much single agent, doesn't work!!!!

Nktr-214, anti lag-3, IL-12 or 2, TIL, more NRAS focus with cdk46 or other inhibitor?????


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donna conn's picture
Replies 2
Last reply 5/5/2020 - 8:49pm

First of all I want to thank all responses to my post asking about issues with taking tafinlar/mekinist. The suggestion of watching you tube videos was especially helpful!! My Dr finally prescribed 10 mg of prednisone daily to help with the side effects and thankfully that has made taking the medication bearable. When I returned for my Pet scan the pelvic tumor had shrunk, however a new spot of intense metabolic activity showed up in my spleen. I just had a CT of my abdomen and pelvis and am waiting for results of that. I’m hoping it’s something other than the spread of melanoma. Has anyone had to have a partial or complete removal of their spleen? Just concerned as that compromises the immune system. Also I’m having difficulty dealing with these continual failures in combating this cancer as well as my declining mental and physical abilities. I’m already on an antidepressant, it just doesn’t seem to help that much. Suggestions appreciated.


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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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Beany's picture
Replies 3
Last reply 5/6/2020 - 1:00am
Replies by: STL Mike, Beany, KAP715

Hello everyone who reads this post,

I did three combos but liver enzymes, AST and ALT, went up to 353 and 658 respectively. They started dropping naturally down to 174 and 450 in two days without steroids. Now I am on 35mg of prednisone and the levels are 105 and 334.
Is 35mg a lot? The doctor said I will be on this dosage another week which will be a total of two weeks.

All the best and thanks in advance for any replies,


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MMH's picture
Replies 1
Last reply 5/6/2020 - 5:26pm
Replies by: SarahBug

Hi all. I was diagnosed Stage 1A in August 2018. I am constantly worrying, and try to channel that worry into vigilance. As you know, this can be exhausting. I have a new spot on my face and it does not look good. My initial melanoma was on my right arm, spitzoid, so amelanotic, looked more like a wart or pimple. Now I have something on my face that looks somewhere between an age spot and a slightly raised wart. So, the panic has set in. I am trying to get into my doctor at Johns Hopkins but I am worried that during the pandemic this will be challenging. Does anyone have experience with melanoma on the face, and if I had a prior that was amelanotic should I expect that for future melanomas that arise on my body? Thank you, these are tough times and I hope you are all hanging in there physically and emotionally.


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Just wondering if anyone has been on this treatment twice. My brother had great success and was off all treatment for two years after being on this for one year,. One spot returned and so now he has just completed his 4th double infusion treatment and will be getting scan later this month. Has anyone else had experience with this ?
Thank you

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