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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Can anyone share insight either about potential toxicity from the combo treatment or about getting treatment at Mayo? Or stories of success!

I finished radiation to the mets in my brain a little over a month ago and have been off the last reduced amount of (reduced a while back to 2 mg and then 1 mg) Dexamentasone more than a week ago.

Thanks so much again to those of you who've steered me towards this treatment. Very grateful.

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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AMcReader's picture
Replies 13
Last reply 8/13/2020 - 2:27pm

Well, I posted that last post when I was in a state of fury of the endless issues I’d had in trying to get the results of my recent scan which had to be moved up because I was dealing with some physical issues...

Anyways, because of that, I should not have been surprised to get a call a couple of hours later explaining that despite 1.5 years of no treatment and all good news I have some new lesions. This time, I seem to have developed multiple lesions in the lining of my stomach. I don’t have the full report yet so I don’t know how many and I will be asking them to do a biopsy to confirm that it’s melanoma (if anyone has had this before and had it not be melanoma PLEASE chime in!!). But, in an effort to be fully prepared, what treatment should I consider next? I’ve done brain surgery, brain radiation, Nivo as a single agent, then Ipi/ Nivo (only managed to do 3/4 treatments because my AST/ALT flew up to 1600/2300) and also had radiation to the lungs once we saw Ipi/Nivo was working. So my question is...do I retry Nivo (I can’t imagine they’ll let me retry Ipi)? Do I try the BRAF inhibitors (I’ll admit that those terrify me because of how the melanoma can mutate but I am BRAF+)? Do I try a Phase 3 trial? What about TILS or intralesionals?

All thoughts, advice and encouragement are appreciated. I have a beautiful 2.5 year old girl and my mind and heart are already racing with anxiety. I hate this damn disease.

Thank you in advance for your help. It is so, so, so appreciated.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Hey everyone,
I've written here a few times and found some great comfort and ideas. My husband Jason (43) was just diagnosed with Leptomeningeal Metastasis after 10 days in the hospital with a debilitating headache. He has been stage 4 B-RAF positive since March 2018. He failed ipi/nivo but did great on targeted chemo. Taf/Mek didn't work for him due to side effects but Braftovi/Mektovi has been amazing. He just got a clean PET 2 weeks ago and then tanked with this headache. No time to enjoy the good news, more terrible news. From what I've read, LEP is pretty nasty and invasive and doesn't seem to have a lot of hopeful treatments. We are at University of Michigan and love our doctor, but I wanted to ask you all if you had any experience with this disease and any ideas for treatments. As a mom of 2 young boys who adore their dad, I'm desperate to find any hope. Thanks to all you amazing people. This blog has brought me so much comfort the last few years.
-Shannon

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AMcReader's picture
Replies 5
Last reply 8/13/2020 - 10:48am

Hi all, I’m just curious, once you do your scans, how long does it take to get your results back? Also, how do you get the results? MyChart? Appointment? Phone call from your doctor?

Typically, I do my scans and then have to wait until the appointment with my doctor the following week. Sometimes, I will get them through MyChart before the appointment, but lately that’s been rare. Of course the wait time between scans and appointment is just agonizing and I’m wondering if other clinics have a better process.

Thanks!
Amanda

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Edwin's picture
Replies 1
Last reply 8/13/2020 - 9:36am
Replies by: Bubbles

OncLive Peer Exchange 2020 video with

Jeffrey S. Weber, MD, PhD, NYU Langone Health
Sunandana Chandra, MD, Northwestern Medicine
Adil Daud, MD, UCSF Helen Diller Family Comprehensive Cancer Center
Jason J. Luke, MD, FACP, UPMC Hillman Cancer Center
Ryan J. Sullivan, MD, Massachusetts General Hospital Cancer Center

They discuss melanoma treatments. These videos last several minutes.

https://www.onclive.com/view/advances-in-the-treatment-of-malignant-mela...

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/13/2020 - 7:50am

I am wondering if anyone has had luck with advanced stage melanoma using nivolumb and ipilimunab together? My husband was diagnosed in May , at that time it spread to nearby lymph nodes he had two treatments and was doing good , we thought. but yesterday he noticed a cluster of bumps on his stomach close to the first spot he had in may.. the melanoma is spreading... we are scared and anxious .. not ready to lose hope but could use some encouragement, we are not eating or sleeping.... any success story with advanced stage melanoma

Phyllisd

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MarkR's picture
Replies 16
Last reply 8/12/2020 - 3:08pm

Hi All
Thought I would give an update on current situation but also have a question that I can’t find the answer to.

In terms of TILS I have made contact with lots of US hospitals and at the moment Columbia and University of Colorado are looking the best option to join the Iovance TILS trial in the US. MD Anderson wanted $32k just to review my case and let me know if they could do anything!!!! Yale is also an option but means a 3 month stay in the US that would be quite difficult. However I have an option in Israel at the Sheba Medical institute and a couple of potentials in Europe. I have also been fortunate to have fundraisers $200k to pay for this so that side of things is going ok. My sister has been running the fundraising and even managed to get the story in the UK national press!! Link below if your interested:

https://www.google.co.uk/amp/s/www.mirror.co.uk/news/uk-news/dad-praised...

However I had SRS a few weeks ago to 14 brain mets (biggest 2.5cm) which seemed to go well apart from some patchy hair loss and have been on Temozolomide for 6 weeks now. The effect of the chemo has been quite dramatic and I have seen great improvements in all the tumours I can feel. My groin node was 45mm on my scan 7 weeks ago and is now about 20mm and I have had similar improvements elsewhere. I recall reading in here about people that had chemo after immunotherapy and went on to do well but can’t find anything now. Does anyone have any info as can’t find much online
Thanks
Mark

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Replies by: Julie in SoCal

Hi,
I am on this forum for 16 years! Thanks to this forum I found the best oncologist I could dream of (Dr. O'Day). Now with suspected to have lung cancer. Can anyone refer me to such a discussion group with many daily posts and quick responses from patients and caregivers.
Thanks!

Hadar Hannes

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TimCT's picture
Replies 35
Last reply 8/11/2020 - 9:48am

Hi All,

I was just diagnosed on Monday evening with metastatic melanoma. A little of my backstory before a couple questions:

Since August/September I've been having non-specific symptoms on and off: fatigue, chills, body aches, dry & tired eyes. At the same time, it felt like I had pulled a muscle in my armpit. After rest, both issues subsided after a couple days. But they would come back. Then I felt a sore lymph node in my neck that had swollen up, but it went back down. Then my armpit was sore again and it occurred to me that it wasn't a pulled muscle, but also a swollen lymph node. Again though, lymph nodes went back down, symptoms subsided.

In November I had enough of not being able to shake whatever this was so I saw my GP, who sent me for 31 separate blood tests over the course of November/December. Nothing came back as out of the ordinary except that I tested as ANA positive. The upshot of all the tests was that I was being sent to see a rheumatologist, because of the ANA positive result. The bloodwork also showed that I had an EBV infection sometime in the past, so perhaps that had been reactivated. The prescription was rest and vitamin C until the rheumatology consult.

About 3 weeks ago, my neck started to swell under my left ear, and it was quite painful. As the swelling increased I could feel the pain behind my left eye, up the back of the left side of my head, on the left side of my jaw, in my left ear. I called my GP to report my new symptoms and was told the doctor would call me back if he had any questions. A week later, his PA called to say wanted another CBC.

I had been voicing my frustration all along to my wife, who is an OR nurse. She had gotten fed up enough with my complaining to mention it to a surgeon that she works with, who asked her if she wanted him to order an ultrasound for me. She did, and the next morning I was having an ultrasound of my neck, which showed a bunch of enlarged lymph nodes. The day after that I was in his office for a fine needle aspiration, and the day after that I was at the hospital having the largest lymph node removed for biopsy. I think the surgeon was thinking this was going to be lymphoma, and we were all very surprised to hear on the following Monday (2/3) that the pathology report had come back and this was melanoma.

On Tuesday I was in an oncologist's office who gave me the rundown on the immunotherapy meds available, response rates, side effects, etc. He also ordered a PET scan and a head MRI for Friday the 14th, and a visit to a dermatologist on the 25th.

So after a long time of seemingly doing nothing, there has been a flurry of activity over the past week and a half that has resulted in this diagnosis.

I have a couple questions. First, there is no obvious primary site. The surgeon who removed the lymph node looked me over fairly thoroughly and didn't see anything that looked abnormal. Will a PET scan show a lesion on the skin? I had an eye exam in September as well, and they didn't see anything of note then, either. Is the PET the be all/end all for determining all the places the cancer is?

Second, its been a long week of waiting and trying to wrap my mind around this diagnosis, and it'll be another long week of waiting for the scans on Friday, and then however many days until they're read and communicated back to me. Its sorta like this is the calm before the storm - is there anything I should be doing physically to prepare for treatment?

Thanks for listening, and for any help/advice!

Tim

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Jubes's picture
Replies 13
Last reply 8/10/2020 - 11:32pm

Hi All.

Since we're probably not going to see each other personally for maybe years, I wanted to dedicate this performance to Bubbles who is so helpful , knowledgable and tireless on all of our behalves. (Plus I'm trying to get more likes than my colleagues hehe)

Hope you enjoy it.

Love to all and stay safe

Anne-Louise

https://www.sydneysymphony.com/backstage-news/article/anne-louise-comerf...

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Rdcpt28's picture
Replies 1
Last reply 8/10/2020 - 6:16am
Replies by: tkoss

Hello everyone!

Almost one year I posted for the first time seeking advice about a severely dysplastic nevus removal. I was supposed to go back for regular check ups every 3 months, but have not been back to the derm since the removal 1 year ago due to losing health insurance and COVID. I have to now switch Derms and I am very nervous about it. The derm I initially went to was pretty good and was definitely the “go to” in my area. The place I will be going to now is more of a clinic and I haven’t heard great things. The reason I’m nervous is because I now have pigment regrowth in a different spot (that was only moderately dysplastic), and I have a spot on my arm that has changed significantly over the last few months. I thought it was an ingrown hair, but it’s still there. It’s 2 different shades of pink, slightly raised and has been growing. My question for everyone is how do I advocate for myself? I’m usually a push over and if the doc won’t biopsy then I’d probably just go with it. I hear some scary stories and I don’t know if I’m being too worried for nothing? If the doctor says it’s fine should I just say okay and trust her or should I push for biopsy? Thanks for reading!!

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AmyM's picture
Replies 5
Last reply 8/9/2020 - 3:36pm
Replies by: Summer S., lkb, JudiAU

Hey,
I just wanted to give an update on my dad. I got great news today that we are aiming for stereotactic radiotherapy next week. I was wondering what the common side effects are? Would you usually be on steroids for a time after it? Would they usually stop targeted therapy while under going SRS?
Thanks so much for all your help,
Amy

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TimCT's picture
Replies 7
Last reply 8/5/2020 - 5:17pm
Replies by: THMoore, TimCT, MelMel, Edwin

Hi all,

I had a CT scan the other day because of the amount of disease around my neck, and because it had become painful overnight.

Ever the optimist, I took the inflammation and pain as the tumors being attacked. My doctor, however, wanted a CT.

We haven't directly discussed the results, though I've been set up with a head and neck cancer surgeon tomorrow for a consult, to evaluate my swallowing as a result of the CT.

In the meantime, the CT was released to me, and the official findings note that several of the tumors show "central necrosis".

Is this good or bad? Is the tumor dying, or it actively killing the lymph node its taken over?

Tim

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Pat-Wife of Carl's picture
Replies 7
Last reply 8/4/2020 - 8:27pm

I have not been on this board recently. My husband was diagnosed with melanoma in 2009 and passed away in 2013. Today our only child was diagnosed with ocular melanoma. I am devastated at this news! I am located in Wisconsin. She is going to UW Madison for a consult on Tuesday and we will know more at that time. I am looking for someone that might be able to point us to the best location for treatment of ocular melanoma since it is a rare form of melanoma. Perhaps there is someone that has this form of melanoma and has had a successful treatment.

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THMoore's picture
Replies 7
Last reply 8/4/2020 - 6:16pm
Replies by: THMoore, MelMel, Anonymous

My scan showed a brand new 2.5x2.0 CM tumor in my liver. Wasn’t there : months ago. Should I ask for surgery, TVEC or continue on immunotherapy. Thank everyone. Trent

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