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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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.
Steve

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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
Anonymous
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

Bruce

Bruce

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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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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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Replies by: Beany, MelMel, ed williams

Hello everyone,
I am still in hospital waiting for my liver enzymes to fall while taking 35mg of prednisone daily.
AST has dropped down to 95. However, ALT is is stubborn and holding steady at 354.
Could the nivo/ipi be winning the battle keeping the level high?
I have achieved good tumour reduction in lungs and liver.
Regards,
Adam

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doragsda's picture
Replies 16
Last reply 7/2/2020 - 8:35am

I was able to contact Mike's wife. The good part is most of his tumors are shrinking from the clinical trial he's been on.

The less than good news is the tumor in his sigmoid colon continues to grow (it's currently at 7.1cm) and is causing Mike a lot of pain and distress. She said he is really struggling right now.

That is all the news I have, but Mike is still fighting. I told her that he has been an inspiration to so many on this board, and he is often asked about.

Please turn your thoughts and your prayers toward Mike and his wife, Hillary.

Dave

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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,

Adam

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/28/2020 - 9:58pm
Replies by: Anonymous, Butterfly74, ed williams, doragsda, chrispl1974

Hi I have recently been diagnosed as Stage 1a with depth of 0.7mm, no ulceration and zero mitosis. But my Clark Level is 4 which I am so worried about. From everything I have read this is a high risk factor for it spreading at some stage. I probably shouldn't read so much on the internet as it makes me so anxious and I am really struggling to deal with everything. There seems to be a lot of people who were stage one and are now stage 3 and 4. I'm hoping some people can help me please.

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