My dear melanoma peeps. I hope the coming year finds you and yours as well as possible and brings forth much peace, love and a zillion small joys.
- January 1, 2022 at 12:33 pm
It is with some trepidation that I share my recent blog post. It is largely an update on me- which seems rather narcissistic, but is POSITIVE – in a good way! HA!!! And therefore may bring some hope to others. It is also about appendiceal cancer which is something I hope none of you visiting these pages ever need learn of. But, there is information included about melanoma, immunotherapy and the uses of ctDNA. So if you’re interested:
Then there’s melanoma, GCC and me – Study shows increased secondary cancer risk after immunotherapy!!!!! Adjuvant treatment of Stage II GCC = no improvement in OS!!! Well! Isn’t that nice???
Either way, much love to you and yours in the coming years. les
Well that was interesting stuff. On the topic of what is coming like CT-dna, I thought you might like an Australian view of the melanoma research from Dr. Long. Second part of presentation gets into path Cr stuff from neo-adjuvant trials. Thanks for the update, and I did like the stage 2 survival data for that second cancer of yours. any thing in the 90% range must be reassuring! https://www.youtube.com/watch?v=LPhuuC4QnTw
- January 1, 2022 at 7:11 pm
Thank you for sharing the video, Ed. I watched the whole thing. Interesting stuff! The only negative part for me was the OS predictor tool. I was reminded of my reality as I checked almost every box on the tool. I had to have a pep talk with myself and give myself the same advice I give my patients. We are all different and can beat the odds! Having you and Celeste to keep us educated is priceless as well as your success stories. Keeps folks like me motivated to keep fighting no matter what the statistics say.
- January 3, 2022 at 2:28 pm
Christinad, I have given up on stats when looking at my own mortality. Last January my oncologist along with some other Dr.s from the Ottawa hospital published a retrospective look at melanoma patient with brain met’s treat over many a 17 year period at the Ottawa hospital system where I was treated and now do my follow scans with. 260 out of 276 melanoma patients with brain Mets were dead in their retrospective paper. 9 months survival if SRS radiation plus immunotherapy, 4 months for patients before immunotherapy and just whole brain radiation or surgery. Doesn’t give much hope, but then again most dead occurred in symptomatic patient since scanning is an issue, or I should say lack of early scanning is an issue in Ontario health care system. My advice about Dr. Longs new predictive tool is not to give it too much power over how you view things. One it is new and in development, and each health care system has different levels of detection and expertise. If I was at MD Anderson and they wanted to do genetic screening of tissue and tumor staining for TIL’s and interferon gamma levels of tissue, I would say sure let’s do it. But that is not the norm for most hospitals and inferior levels of screening are the norm when compared to research hospitals. Why am I here more than 8 years after SRS treatment to brain met’s? not sure if paper from Ottawa hospital will copy but if it does give it a read if you want to see socialized medicine stats. https://www.mdpi.com/1718-7729/28/1/45/htm
- January 3, 2022 at 4:46 pm
Hi! I read your blog….thank you for sharing. I read you still suffer from neuropathy. Just wondering if you’ve ever tried acupuncture? It helped me a great deal. My neuropathy is pretty much gone now and at one point it was excruciating pain to put weight on my feet. It continually improved after each acupuncture session. Coincidence or placebo, maybe, but I’m a believer now.
- January 2, 2022 at 10:10 pm
Dear Warren and Judy, I do not mean to be a Debbie-Downer – and did ponder whether or not to share. Just keep in mind that it is one study with many caveats to consider. But, I figure knowledge is power! And I know you both do as well.
- January 3, 2022 at 12:46 pm
Yes, Cindy! I hold out a great deal of hope for the usefulness – and general use of – ctDNA in the coming years. It won’t cure us – but it can help guide the direction we need to go to reach that end!!
You are the second person to give a good recommendation for acupuncture to ameliorate neuropathies, Christina. Right now I have it under basic control, but it is good to have that process in my back pocket should I need it.
Thanks for sharing the great presentation by Dr. Long, Edster! B and I both watched the whole thing!! I highly recommend it for the rest of you. She really puts our past and future in perspective and does a very good job of comparing treatment outcomes from various therapies in the most accurate possible way. As someone who has worked to do that for over 10 years – it’s not easy!!! So many variables differ in studies – you can’t just throw them side by side willy nilly!! I found the nivo plus relatlimab combo VERY interesting – with a response rate rivaling ipi/nivo (at least so far) and fewer side effects – what’s not to like??!!! Like most of us have been yelling for years – eating good bacteria, omega 3 and fiber rich foods – while giving a pass to high fat/fast food – is important for all kinds of reasons. Glad the neoadjuvant trials are so promising. Such a shift from when I was diagnosed in 2003. But, most of all, my hope lies in the work folks like Dr. Long are doing to understand NON-responders!!! Figuring out who will respond to nivo as a single agent. Determining other ways to evaluate patients at the start, during and after treatment. Finding answers to those things will really make melanoma world a much more inhabitable place!!!
And, yes! Stage II GCC having a 5 year OS of 96.9% is certainly a good thing – esp compared to some of the stats I have already faced. I am lucky to have had my disease discovered at that stage. The symptoms (and I had absolutely none) are usually nonexistent until patients are already Stage IV. So, yes. I am blessed indeed.
Thanks to all of you here for being you. The world is a brighter place for each of you being in it. – c
sing123ParticipantWow so much to catch up on in these 3 weeks since I’ve been off the forum. The brain mets/low survival study sounds heavy (as a symptomatic brain met survivor). The loss of MarkR. Celeste’s news about increased chance for other cancers. But good news as well with new and promising treatments. All goes in the compost heap, doesn’t it? Happy New Year, all. Celeste and Ed, thank you for keeping us educated.
- January 3, 2022 at 6:53 pm
BrianPParticipantHappy New Year Celeste!
- January 13, 2022 at 9:55 am
I am so happy to hear that you are still getting after it despite so many challenges that have come your way. I wanted to say that my oncologist Dr. Tawbi at MDA is also very positive on the nivo-lag3 combo. He’s been very involved with that combo and thinks it will get FDA approval in 2 to 3 months. Nice to know there’s another good option if needed. Best to you and your’s.
SOLEParticipantFor what it’s worth, a few months after my initial diagnosis of July 2016, after extensive research, I ordered a ctDNA test from Guardant360 through some very intricate medical channels. I had no idea if this test would prove helpful in melanoma but I was so desperately looking for answers. Result was no mutational residual disease found and they were all sorry they could not identify a genetic target… Anyway, here I am NED 64 months after the WLE and SLNB. Some days I think I really got lucky so far and some days I think this test has proven valuable for me. Les, you are a beacon of hope and a model of resilience. My very best wishes to you and yours for 2022 and to all people of good will.
- January 14, 2022 at 11:39 pm
It really is a mixed bag isn’t it, Cindy? Still, I like to think though we sometimes take one step back, we then take two steps forward! Good to hear that Tawbi finds the combo promising, Brian! So glad to hear of your NED run, Marc! May it long continue. Thanks for your kind words.
- January 17, 2022 at 9:15 pm
Hang tough guys, les
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