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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Julie in SoCal's picture
Replies 7
Last reply 6/13/2020 - 11:44pm

Dear, Friends!

Here’s the short of it:

1) Having lung liquid drained is no fun. I don’t recommend it. I had 1200ccs drained and I nearly passed out it hurt so bad. But I am breathing much easier. And for that, I am very grateful.

2) The lung liquid was cancerous, lung cancer. The PET scan showed growth everywhere. The targeted chemo wasn't working.

3) Chemo treatment started last Wednesday afternoon. It’s a three-drug cocktail of Carbo-Alitma-Pembro. I’ve had all three of these drugs before and I responded to them at the time. I just didn’t have them all at once. I am certain that I will respond again (technically, this is a two-fer, as it will work on both Mel and Larry. The Rock Star says my cancer has “forgotten about this.” My body, unfortunately, hasn’t. It's kicked my backside!

4) I am going to do my darndest to go on Julie & Sheri’s Big Awesome Adventure 2020. It’s a nice long road trip to the Grand Tetons and Yellowstone National Parks, where I’ll meet up with many friends and see some of God’s best work. But it's going to require a bit of chemo scheduling creativity. We can do it.

Well, friends, that’s the news. It’s not what I wanted, but I’ll be ok.

Love you all,
Julie

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5dives's picture
Replies 2
Last reply 6/12/2020 - 10:02pm
Replies by: Treadlightly, Bubbles

Hello all! It’s been a while since I’ve posted here, but it’s been almost exactly 6 years since my 3B diagnosis, and I’ve had no treatment beyond being closely followed. All has been well!

For the past week, I’ve had a rather persistent muscle twitch that seems to be coming directly from my WLE scar. You can watch my scar jump, which is weird. Googling hasn’t given me anything to make a mild anxiety go away. Have any of you experienced this?

My WLE was just near and slightly above my right knee, on the inside of my thigh. Sentinel node came from my right groin.

Thanks for any thoughts you might have. One of those “probably nothing” but weird because it seems to be coming straight from my scar kind of moments.

Thanks!

Elaine

http://melanomadame.blogspot.com/

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TimCT's picture
Replies 4
Last reply 6/9/2020 - 7:47pm
Replies by: TimCT, ed williams

Hi All,

I began treatment for my melanoma in February of this year, initially staged as 3C/4. The disease was confined to my lymph nodes, though it was extensive - both axial and cervical on my left side and a couple nodes on my right.

The decision was made to start the ipi/nivo x 4 regimen, which I completed in May. There was noticeable swelling on the left side of my neck when we started, that shrunk noticeably after my first combo treatment, though it never completely went away, and swelling has steadily increased in that area since. My first scans post completion of the 4 infusions show overall disease progression. Some nodes appear smaller, some appear larger, but there is new progression as well, around my throat and under my jaw, as well as two very small (but very suspicious) spots in my upper lungs. We're continuing with nivo by itself for at least the next 8 weeks, and if the disease at my throat becomes a problem as far as swallowing solid food, we'll look at radiation in that area.

My hope is, of course, this is a delayed response to the drugs or pseudoprogression, and I may yet respond. However, the new disease under my jaw has me worried that whatever partial response I had earlier is it for me. Could I still have a delayed response, even if new disease is appearing? I thought that a delayed response was more seen in existing tumors growing post treatment, and then taking longer to shrink, and not necessarily a factor when new progression is brought into the mix.

As usual, looking for any positive news to hold on to!

Tim

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MLD1973's picture
Replies 8
Last reply 6/11/2020 - 12:39pm

Hello all,

I have had a ankle lump for the last 6 months, went for an ultrasound yesterday. The sonogrphy guy said he did not know what the lump was and would need to refer me. Two hours later the doc calls and said he would refer me on a two week referral. Looking at my notes after the call is stated suspected sarcoma. What is the relation to MM with sarcoma? I have had a dull ache in my groin for weeks and thought nothing of it, but feeling my inner thigh it feels swollen.

I am very nervous and anxious, has anyone else had the same experience?

Mandy

MLD

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/29/2020 - 5:18pm
Replies by: jjanekroll1, JudiAU

My husband is stage 4 but is currently not doing treatment. He's not had any treatments in several months. He's unable to eat very much and doesn't have an appetite what so ever. For some reason he's been gaining weight. We aren't sure what would be causing this and his dr's aren't quite sure either. He's not on any steroids or any medicine that has a side effect of weight gain. He tries to eat but has a lot of stomach pain so therefore he just doesn't eat due to that and the loss of appetite. Has anyone ever experienced this or know what would call the weight gain?

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casagrayson's picture
Replies 1
Last reply 6/10/2020 - 10:29am
Replies by: Bubbles

I just heard of another loss. The young man, Clint, was not on this board. He had melanoma several years ago, but had not had a recurrence. In March, he was taken to the hospital with pain and swelling in his legs -- turned out to be blood clots there and in his lungs. Unfortunately, due to COVID, no family members were able to be with him or to see him at the rehab facility when he was moved. He didn't have a medical POA (and was not married) so no family member was updated on his condition or given the results of the many scans and biopsies they performed while in the hospital. It turns out that he had an inoperable brain lesion and many other lesions throughout his body. He was moved to a hospice facility on Wednesday and his family was allowed to finally see him. He passed away on Thursday. He was 44.

Folks, get your affairs in order. Make a will, sign a POA (EVERY time you enter the hospital -- because each facility wants their own), talk to your family about what you want. They are hard conversations to have, but all of us need to do -- not just the melanoma patients! This pandemic has shone a light on the deficiencies in our medical systems, and this is one way you can protect yourself. Clint's dad spent a month in a city far away from his home begging to get information about his son, and to be able to see him. Don't let this happen to you or your loved ones.

Strength and Courage,

Susan

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marta010's picture
Replies 2
Last reply 6/11/2020 - 12:22pm
Replies by: marta010, Scooby123

Hi - anyone out there changing to the new Keytruda 6 week infusion schedule? Dosage is increased from 200 mg to 400mg. For those who have switched, have you experienced any increase in side effects? My husband, Larry, will be starting the new schedule in July. Thanks for any feedback. Take care.

Ann

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sing123's picture
Replies 17
Last reply 9/23/2020 - 8:52pm

Hello dearest Hero Mentors. Had a delightful brief reprieve but the cancer is back and in my brain. I’ve 3 lesions discovered recently on an MRI and am
going boldly into whatever I need to do. Starting with stereotatic radiation.

Can anyone please provide advice on this type of radiation? Is one preferable to the other, such as is cyber knife better than the generation of Stereotatic preceding?

Should I follow up with immuno again? Was on Opdivo am my oncologist told me the Opdivo has worked as it has not returned to the rest of my body, however the brain is very difficult to penetrate with immunotherapy.

Will I live? I have so many questions. I have so many hopes.

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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Ennis1234's picture
Replies 1
Last reply 6/14/2020 - 1:02pm
Replies by: Bubbles

Anybody from CO with brain Mets??? What have you done??

LauraCO

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Julie in SoCal's picture
Replies 11
Last reply 6/22/2020 - 7:33pm

Julie & Sheri's Awesome Adventure 2020 is on! And I only have one more sleep!

Subie Blue got a clean bill of health from the mechanic, I've been wrapped in bubble wrap by my doctors. This trip is on like Donkey Kong!

Today I just have the last minute things, like ice, and the cooler and hitching the trailer. Then we are off bright and blurry tomorrow morning. Have I told you I cannot wait?

See you again in two weeks!!
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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poppymac's picture
Replies 4
Last reply 6/15/2020 - 12:42pm

hi,i had 3.5mm mole removed from right cheek in jan 2018
WLE on april 10 2018 was clear
pet scan on june 1st showed node involvement
neck dissection in july 18 showed 13 nodes infected
started pembro on sep 13 stopped after progression showed on nov 30 brain met
dec 27 SRS on met and no treatment since but ned
my question is did pembro work despite being stopped early

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betsyl's picture
Replies 2
Last reply 6/15/2020 - 8:46pm
Replies by: ed williams, Bubbles

Hi there,

Been a long time since I was here. I have a question for you.

How often is melanoma less responsive after a recurrence as opposed to treatment-naive situations? Always less responsive after recurrence? Usually? Sometimes?

Does anyone have stories of:

1. Achieved NED through combination of surgery + Keytruda. Stayed NED for ~18 months.
2. Recurrence.
3. Back on Keytruda (or Opdivo).
4. Become NED again? Or rather than becoming NED again, has it stayed stable for a really long time (years) after going back on Keytruda or Opdivo?

My husband's recurrence is taking the form of multiple small subcutaneous nodules. Very scared.

Thanks for providing this space. Best wishes to you all.

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Affinity4Mountains's picture
Replies 5
Last reply 6/17/2020 - 8:37pm

I need some ideas or opinions on how to pursue continued treatment. I had my gallbladder removed recently and it had several small tumors inside the gallbladder. A recent PET scan shows no other evidence of disease in my body. In November 2019 I had one lymph node removed in my groin and went on Optivo starting in January 2020. A PET scan in January showed disease in the Liver area and a lymph node was biopsied and shown negative for cancer - apparently it was not this lymph node that had cancer but the nearby gallbladder (not sure how they mistakes this) so I had melanoma in gallbladder for 5 months! My recent PET scan in May showed that the tumors in my gallbladder grew in size from January to May.

Question - do I stay on Optivo since the tumors grew? Add another immunotherapy like Yervoy or move to BRAF /MEK inhibitors since my tumors are BRAF v600e? Or clinical trial?

Has anybody Taken and experienced BRAF /MEK side effects - what are those like?

Thanks

Affinity4Mountains Stage 4

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poppymac's picture
Replies 0

pet scans are not always accurate I had one 3 jan 19 and went for results on 22 jan 19 to be told that there was evidence of disease in both my appendix and bowel though very small and we would fight it aggressively
this was after my melanoma brain met in dec 18 so he was saying it had spread
to be honest I was nearly numb listening to him
he booked me in for more tests and said I would need appendix removed
heard nothing until mid march when ct scan was clear
had bowel scopy in april which showed nothing and appendix removed in june which showed nothing

fergal

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maryb-z's picture
Replies 6
Last reply 6/22/2020 - 2:21am

My local onc, not a melanoma specialist is recommending I continue Opdivo for another year. My recent PET showed NED as well as the one prior. I understand that all my recurrences the last 11 years are alarming but an article from Dr. Weber shows no real data to continue Opdivo 3 years. https://www.ascopost.com/issues/december-25-2018/optimal-duration-of-che...

Dare I share this with him? I'm handling Opdivo well now that I'm on 5mg prednisone daily but would like my life to return to normal. TIA

No One Fights Alone

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