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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Replies by: gopher38, Bubbles

Seeking input on best oncology center/Oncologist to consult on or manage treatment of liver mets from cutaneous melanoma. Rose just completed TIL and it worked miracles on her skin head neck lesions, but her liver mets spread badly during TIL. Very strange, TIL team was stumped. Now find us needing to address extensive liver mets. More BrafMek probably as interim step next, but she will need something else

In the PNW, but will relocate as needed.

Thanks in advance.

Chip

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Nicky's picture
Replies 1
Last reply 11/30/2020 - 12:05pm
Replies by: Bubbles

MPIP thank you so much. It’s been 20 years since I was diagnosed Stage3b. This board was a life saver through that time. There were very few treatment options then and I chose surgery and radiation for local control to my lymph nodes and surrounding areas. Making friends who were going through a similar experience was so vital to this journey.

I made it a life mission to expand my knowledge to help fight this disease. I am just so grateful I had a safe place to go even at 3am in the morning..

Thank you MPIP and to the many posters who helped save my life. I am forever in your debt and my condolences to those lost on that journey.

Please keep up the fight for those newly diagnosed and arm yourself with knowledge. It may save your life.

May 2021 bring some hope to you. Happy holidays

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MelanomaMike's picture
Replies 14
Last reply 11/30/2020 - 3:55pm

Alot has happened in the last 6 months, you all knw about my sigmoid colon surgery June 12th, but about a month after that, melanoma cells that wernt caught started growing and of course starts to give me pain over the span of 4 months, heavy pill regiment etc. All along doing chemotherapy of Paxel, Avistan and i forget the other but, just like all the other meds, Pembro, Opdivo, Yervoy then the Dr. Hamids 3 clinical trials i did, all didnt work for me like they may work for you. I have Mel tumors growing out my sphincter, its location isnt to feedable for radiation and surgery will cause unwanted grief and pain more then i need right now. Im currently in a Nursing facility and on Hospice, pretty much bed ridden till whatever the good Lord has for me, i can barely write, this has taken me probably an hour to do. I love you all just like before and always will..i will try to check in later ok? Stay warm its cold even here in So. California...xoxo

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

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Lilara's picture
Replies 9
Last reply 11/27/2020 - 1:21pm

After my mom progress on Pembrolizumab, her doctor suggested ipi. I told her why she does not do the combo. She said too much side effect . But I think ipi has lots of side effects . What do you suggest? Ipi or ipi/nivo or low does of ipi and nivo full does .
Thank

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tedtell1's picture
Replies 3
Last reply 11/27/2020 - 2:14pm

Hey everybody;
I haven't posted in some time. For good reasons! I was diagnosed in February 2018 (stage IV). After a short round of Opdivo, I have been NED ever since. While my body has not been the same since then, with many, many minor (and some bigger) health issues, I am still here. For that, I give thanks. I give thanks to the warriors on this website who provide caring advice, a virtual shoulder to cry on and sometimes just a sounding board when someone needs to vent. I mourn for those we have lost and the journey we have travelled, but rejoice in the battles won. I give thanks for the special people who have meant so much to so many on this site, Celeste (Bubbles), Ed W. and of course the inspirer in chief, Mike. I hope and pray that each one of you has a good day tomorrow and has been able to escape intact from the Covid scourge.
Love you all,
Ted

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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The immunotherapy appears to have destroyed my ability to make cortisol, aka. caused adrenal insufficiency. I’m taking hydrocortisone to replace it, and I now have to wear a medical alert bracelet because of it. Multiple sources, including my oncologist, suggest that endocrine adverse events due to immunotherapy are not transient and not reversible. Endocrinopathies are unique among adverse events caused by immunotherapy.  Anybody know of any cases of endocrine adverse events have been reversible??

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chipgoodhue's picture
Replies 2
Last reply 11/25/2020 - 12:52pm
Replies by: chipgoodhue, Bubbles

Rose got through her TIL trial at SCCA bravely, and saw complete and rapid reduction in her head, neck and lung tumors. Unfortunately, the 42 day scans showed major progression in the liver. Very puzzling for the trial team. We have been referred back to our on oncologist for next steps.

Anyone have similar mixed response with TIL? Thoughts on what next?. Pretty sure she will go back on braf/mek in short term.

We are scared and concerned about running out of options.

Chip

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Fortysomething's picture
Replies 1
Last reply 11/25/2020 - 11:22am
Replies by: JudiAU

Hi forum
Hope you are all doing as well as you can be.
Had first face to face 3monthly skin check since February,all was good apart from a spot/mole on my shoulder that’s started months ago as a reddish spot .Has spread out and is reddish/pinkish with light tan on on the edges of one side with what look like tiny clear globules in the middle.
Consultant kept looking at it with dermascope comparing it with another mole in the same region. She said it needed removing to be on safe side after previous diagnoses .So having excision biopsy just before Xmas, really hoping it’s ok but not convinced why they would remove if it was ok.

Andrew

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Jw2457's picture
Replies 1
Last reply 11/23/2020 - 2:54pm
Replies by: Daisy2018

Hi there internet support system :) I just wanted to pop over and give you an update. In an earlier post I mentioned I'd initially been diagnosed with .9mm melanoma of the scalp, at least 1b. When that path/slides were send to the hospital that's performing my surgery/treatment, their dermatopathologists weren't convinced and wanted to run more tests and stains. Welp, as expected, I got the second path report back and it IS melanoma. My new surgery date is 11/30 (next Monday).. (it was originally supposed to be 11/17 but they post-poned to run these additional tests).

There was more detail in this path report that was just uploaded to my patient site and I'm wondering if anyone can help interpret..

"There is a proliferation of enlarged melanocytes arranged as solitary units and as nests within the epidermis, at the dermo-epidermal junction and there are occasional solitary units above it. Additionally, there is focal crowding and confluence of melanocytes at the dermo-epidermal junction. Within the dermis, there are nests of melanocytes that show maturation, however, there is also a large collection of atypical enlarged melanocytes arranged as sheets. Within this area, there are several atypical mitotic figures, and there is lack of maturation of melanocytes. A MART-1/Ki-67 stain performed at the Washington University Dermatopathology Center shows an increased proliferative rate within this area, although the remainder of the lesion does not show significant Ki-67 staining. (C43.9)"

This last part below I pretty much know how to interpret, but just including for anyone curious!

"Histologic Type: Malignant melanoma, NOS
Breslow Depth: At least 0.9mm
Ulceration: Not identified
Mitotic rate: None identified
Microsatellitosis: Not identified
Lymphovascular Invasion: Not identified
Neurotropism: Not identified
Tumor-infiltrating Lymphocytes: Present, brisk
Tumor Regression: Present
Peripheral Margins:
Involved by invasive melanoma
Deep Margins:
Involved by invasive melanoma

Pathologic Staging:
Primary Tumor (pT): at least pT1b"

Ultimately I'm just hoping for some positive vibes going into surgery next week.

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I started immunotherapy for metastatic disease in mid-July 2020. My scans in October showed a favorable response. Call me impatient (because I am) but when will this end? (I’m tired of going for infusions, tired of my port, etc.) I know that the prescribing info says “until unacceptable toxicity or disease progression” but absent those criteria, how much time does immunotherapy take to do its job? Also, does a patient with metastatic disease need scans after immunotherapy is finished? If so, for how long? Finally, in general, how much survival time does immunotherapy confer?

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balmany's picture
Replies 1
Last reply 11/22/2020 - 11:33am
Replies by: MelMel

Hello! My name is Bria. This past Friday I went to the dermatologist for the first time to get an annual skin assessment done. I was more concerned about getting questions answered on my eczema. When the dermatologist started to do a head to toe check she was looking for any unusual moles. On my chest there is a dark brown 1 mm mole that she pointed out and commented on saying “that mole looks dark, have you had any changes to it?” Not thinking much of it I told her not that I am aware of and that I have had this mole for years. She then didn’t have any more questions and moved on to the rest of my body. We then went into detail about my concerns for my eczema. She said I had atopic dermatitis, gave me a script for some ointment and sent me on my way. After I left I started dwelling on how she mentioned my dark mole.. I have bad anxiety and have been thinking all weekend that I have melanoma. She didn’t ask for a follow up and didn’t seem too concerned about my moles since she didn’t even pull out a microscope to evaluate further. I then called the doctor office later that day and spoke with a nurse because I was concerned. The nurse looked in my notes and said that the doctor pointed out the mole on my chest but then said that I have similar moles on my back and wasn’t concerned. In my patient portal she noted “benign appearing nevi.” I have been so nervous and stressed now. I have started picking at it (which I shouldn’t do I know) and noticed that it is pretty dark and is shiny when I shine a light on it. Should I be concerned? If my dermatologist thought anything, wouldn’t she have asked for a biopsy or looked at it more closely with a microscope? I am planning on calling tomorrow to see if I can get a same day appointment to have her look at it more closely.. hopefully I can get in because I am a nervous wreck! Thank you so much for taking the time to read my story. I am just very nervous! I have used tanning beds in the past but it has been about 3-4 years since I have used them. I also got a pretty bad sunburn this past summer when I went to Florida. I don’t have a history of melanoma in my family although my grandpa did have some spots removed on his face when he was older. Thank you again!

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Selle7's picture
Replies 12
Last reply 11/20/2020 - 6:00pm

Hi all,
I posted on here years ago about my mom's stage 3C melanoma prognosis. She had a wide excision After 4 years with some local recurrences, our world came to a crashing halt when my mom was diagnosed in the emergency room with melanoma in her brain (and likely lungs). The melanoma in her brain was advanced. 3 significant tumors and one small spot. Since then she has had 3 craniotomy's after two separate incidences of them bleeding. Although the surgeries were successful, and she does not have any apparent major neurological deficits, my mom is weak and defeated physically and emotionally. She has been struggling with stomach issues/pain due to the steroids and isn't able to stand up as she's been bed ridden for 6 weeks. We are in Canada and dealing with B.C. Cancer. Throughout the years I have continued following this forum, and have read a lot on Celeste's blog (what an amazing resource). My mom's neurosurgeon seems to know a ton about Melanoma treatment, but the oncologist and radiologist seem just ok.

The current plan is:
1) Radiation. The radiation oncologist would like to do WBRT rather than stereotactic on the 3 cavities and 1 remaining spot. He said he is willing to do both. The neurosurgeon did not like the idea of WBRT and is phoning today to ask why this is being suggested. Thoughts? We have an MRI booked for next week and then we are hoping to get her strong enough to do the mapping required to do the stereotactic radiation.
2) PET Scan which is booked for middle of December. There are 2 spots on her lungs they want to get a better look at, as well as assess the tumor burden in the rest of her body. The oncologist said then he will determine whether to use the ipi/nivo combo, single agent nivo, or BRAF drugs (My mom is BRAF positive) as the next step of treatment.

I think this all aligns with what I've read here and on Celeste's research regarding Brain Mets. But, looking for any extra insight into what I may be missing, other things I should be asking, etc. Any feedback, comments, hope, would be welcome :)

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kannevans's picture
Replies 1
Last reply 11/19/2020 - 5:50pm
Replies by: Daisy2018

I know it has been a while. I never really posted much but read everyday. All of the posts are what helped me get through the toughest times of my life. Reading posts everyday from people who know exactly what you're going through was the best therapy! Melanoma Mike, I think about you often. You helped me so much early on, more than you know. I see how you are a fighter and it gives me so much hope. We are all fighters, and I pray for each and every one of you for the strength to keep moving forward …what choice do we have? I have a scan Monday and lord knows my anxiety goes out the roof until I get the results. .I stopped treatment of Nivo in November and have since been okay. I still have a small liver spot that grows very little so we will see if it has progressed after my scan.
But...I am grateful to still be here and able to fight another day. I hope you all have a great holiday and I will check back in soon. <3

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THMoore's picture
Replies 11
Last reply 11/22/2020 - 6:03pm
Replies by: Mark_DC, THMoore, Daisy2018, Anonymous

I have a question for all my warrior friends, I received my scan reports from MDA last night, here are the results as follows

1. The 5 nodal tumors in my neck are displaying no cancer.
2. The MRI shows 2 lesions in my brain but are not cancer.
3. The CT continue to display 5 lung nodules. Not Cancerous.
4. The 2.5 Centimeter tumor in my liver has stayed the same in size but is still active. (STABLE DISEASE)

iIt’s been 4 months since my previous scans. The IPI/NIVO has been rough. I am deciding on if I should take the 4th dose of just move on with NIVO. MDA is leaving the decision to me. I am currently waiting for Colitis results.

My question is, does Stable mean the immunotherapy is working,? MDA just explains, nothing has progressed, and the activity everywhere except my liver has totally disappeared. Basically my lungs and neck are good now. My liver still has a 7.0 pet scan uptake. Same as 4 months ago. So it’s still active. Previously I went from no tumors to a 2.5CM in 2 months. Now it’s been 4 months and it’s the same.

I was wondering if you can share your thoughts based on your stories fighting this disease.

Much Love
Trent

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Mk517's picture
Replies 5
Last reply 11/27/2020 - 8:49pm

So about 16 months after brain mets, craniotomy, Srs, opdivo/yervoy x 4 and opdivo alone x 4, getting to NED, I now officially have LMD.

I have 2 obvious, visible tumors in my spinal canal. One has been "debulked" by my neurosurgeon because the pain was so severe. Now going to be treating both the tumor targets with radiation.

I am Braf + (I attempted taf/mek when I was first diagnoses stage 3 in 2028 but didn't tolerate Mek at all and did a lower dose of tafinlar for a year) so I am being started on braftovi/mektovi.

My neurological symptoms currently are mostly manageable. I was hospitalized about a month ago with severe headache, dizziness, leg weakness, nausea -- at the time they couldn't find anything but now more clearly symptoms of the LMD.

My neuro-oncologist in NJ did his fellowship at MD Anderson and is suggesting IT topotecan. I can't find much data on it used in melanoma (although it is documented that it has been used) but it's well documented that it's effective for LMD from breast cancer. My primary melanoma specialist does not like this idea and has put the idea in my head of a trial they are doing at MD Anderson with IT opdivo. It's only a phase 1 and has less than 50 people in the study so there's really no information about what is the "best option".

I am 37 years old and have a 6 and 4 year old and will do EVERYTHING that I possibly can to be around as long as possible. I know LMD is so rare and I am very lucky that it was caught while I am functional and able to fight. Any personal experiences in this area are welcome!!!

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