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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Rdcpt28's picture
Replies 2
Last reply 8/14/2020 - 11:33am
Replies by: Treadlightly, 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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MarkR's picture
Replies 17
Last reply 8/20/2020 - 9:52am

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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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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Hey! I forgot to pass this on...since I am new here mostly.
Anyway, here is a link to the fundraiser that I am doing right now to raise money for impoverished people / those without insurance as they fight cancer. There are more than 100 different types of cancer. This fight has taught me a lot so far; it's completely sad to see how resources are allocated (or rather, how they are not). I want to make our community better. Here. There. Globally. Anyway, if you can, please share and / or donate!
https://cloud.communication.conehealth.com/liftingtheburden

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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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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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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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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 5
Last reply 8/1/2020 - 12:35pm
Replies by: THMoore, Bubbles, tkoss

I just received my CT scan report today at MDA. I was stage 3B with 5 new active nodes in my neck. I have been on Opdivo for 3 treatments. The nodes have decreased and are no longer active on the PET. But now the CT shows small nodules in my lungs, all about 5MM. In BC addition, I now have a 2 CM mass in my liver. Had a PET scan this afternoon, and it showed nodules on the neck as smaller and inactive. The nodules in my lungs are inactive, but the 2 CM in my liver is active. I am trying to make sense of this. Seems like the Opdivo is working, but I also have more spots. I will be meeting with the oncologist in 10 days, but was really wanting some advice or encouragement. Thanks e everyone. Trent.

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sing123's picture
Replies 8
Last reply 7/31/2020 - 6:26pm

Hi all. I am still consulting with docs about going on BRAF combo meds or combo immunotherapy. I finished my radiation SRS treatment to my brain mets July 2 and July 5 stopped taking dexamethasone. I had been titering (Sp?) down from the steroid for 2 weeks due to side effects. I still had a very mild headache for about three weeks after I stopped radiation, then no headache. Today, July 30, I have a headache and was seeing auras and couldn’t read full sentences. The headache is on the same side of the brain as before. I have an appointment with my doctor early next week, and he is confident that the SRS was successful, although I have not had a follow up MRI yet as I am not scheduled for one until early September. He says I don’t need it and put me back on the dexamethasone to help with what he says is causing it, continued swelling. I am quite confused by the reappearance of symptoms. Does anyone have any thoughts or experience they can share? Thanks very much.

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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Anonymous's picture
Anonymous
Replies 2
Last reply 7/31/2020 - 6:37am
Replies by: tedtell1, JudiAU

My spouse has stage iv melanoma and insurance is giving us the run around delaying scans he needs. I am at my wits end and don’t know if there is a more appropriate place to vent. I’m really really angry that they are putting my spouse through this. I don’t know what to do.

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jjanekroll1's picture
Replies 8
Last reply 7/31/2020 - 11:24am

Hey Everyone!

I am not one to go onto social media very often, but right now I have a few questions...really looking to see if there are athletes out there who are combatting a stage 4 with anything additionally (other than standard treatment)? I was diagnosed last May and had it in my brain, left lung, lymph nodes and left ovary. After brain surgery, radiation several times and immunotherapy, visiting various specialists ...it exists still in my left lung. potential pericardial effusion there always. it's shrinking but not moving. Regardless, I am a single mom and continue to work from home, run a fundraiser for poor people fighting cancer and continue to weightlift, which is my favorite thing! I have been on Keytruda (did nothing but enlarge everything) and the combo immunotherapy (liver said no more after 3 times) and now just on opdivo every other week.
My supplementation is extensive but seems to be successful at combatting joint / muscle fatigue....just wondering what everyone out there is doing to remain athletic and active. Oh yes - plant based all the way.
Thanks for all advice and suggestions!
J

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TimCT's picture
Replies 4
Last reply 8/27/2020 - 9:54am
Replies by: TimCT, sks2019, Bubbles

Hi All,

Anyone have any info on this one? My doc is trying to get me into this one, after progressing while on ipi/nivo and before we try taf/mek. The intratumoral approaches are very interesting, I'd be very interested in seeing if any data from phase 1 has been made available. Thanks for any help!

Tim

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Tsvetochka's picture
Replies 5
Last reply 7/31/2020 - 10:06am
Replies by: Bubbles, Tsvetochka, tkoss, Edwin

Short history: May 2019 I was diagnosed with Stage 4. The biggest tumour was 9 cm on/by my adrenal. (? I think that's the right English word, but I'm too lazy to look it up again right now.) Started Keytruda. By January 2020 the cancer was mostly gone, and suspected colitis was getting bad, so we stopped. PET scan in February showed that all that was left was one slightly enlarged, slightly active lymph node, and 27 mm of the biggest tumour. That last bit showed no metabolic activity, though. So, my doctor had me do another PET scan in April. That showed nothing active anywhere, and the inactive tumour leftover was 25 mm. NED! :-)

Today I had a three-months-after CT scan. That 25 mm is still there. They think it looks soft and unthreatening. However, my doctor wants me to do yet another PET scan in three months. That would be the third this year! Not to mention the expense, I really didn't handle that last one well at all. I started throwing up in the machine. Ick.

My questions: would you do another PET scan so soon? What about waiting till next year?

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

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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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