@scaredpartner
Forum Replies Created
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- February 16, 2020 at 11:53 pm
Ed,
In the last 15 seconds there is a slide that lists TGFbeta as something they’re pursuing in clinical trials, which is what my partner is about to take part in.
Are there further clips of this video that happen to discuss TGFbeta specifically?
Thanks, -
- February 7, 2020 at 1:40 am
Thank you for sharing. I love seeing new hope. Now the key is living long enough to get to a trial on this. -
- January 9, 2020 at 4:19 am
I’m from Alberta. My friend go to the Cross Cancer and his primary oncologist is Dr.Smylie. We also see Dr.Walker about 1/3 of our visits when Smylie is away.
They have very different bedside manner, but both are incredible.
We are currently in a transition in our government, and with that came health care cuts, and yes, it has already directly effected the cross.
Most recently our scans were all delayed because they went from doing 40 CT scans per day, to 25.
It’s a problem, but I still feel very confident while in the hands of the Cross cancer team.
Smylie is also really good about reaching out to his fellow oncologists across the globe for insight, and trial info too.
The Cross cancer doesn’t have as much to offer as the Princess Margaret in Toronto in terms of technology and treatment (Toronto offers TIL, Edmonton can’t).If you have any more specific questions, let me know.
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- January 25, 2019 at 2:08 am
Hello!
I watched this exact thing happen to my friend going through his first treatment. It scared the crap out of him.
rhe nurses reacted quickly, and he was given Benadryl and Zantac and continued treatment later on. for every following treatment he took those meds ahead of time, and had no issues. He got all four ipi/nivo treatments and a few maintenance afterwards.
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- March 28, 2020 at 2:32 am
Thank you, Ed.
Those articles were great, and lead me to a few more.
I have so much hope for this treatment. It sounds like they’ve found a way around the toxicity.
I appreciate your time you put into finding those.
Thank you so much. -
- March 26, 2020 at 6:37 pm
The Study # is TCD14678
SARS439459 in combo with cemiplimab.
I’ve done a bunch of reading on the idea of tgf-b, and what they hypothesize will happen, but I am at a loss for finding actual trials results in human.
I hope to pass on good news from our experience soon. -
- February 12, 2020 at 12:41 am
Well, I still can’t find the actual trial anywhere, but after looking over the paperwork we left with on the trial, it clearly states this has more to do with TGFbeta.
This beta thing seems like a rather fickle character in tumor growth. It both aids, and suppresses based on how advanced cancer is?
Again, I can’t find much on the TGFbeta as it seems like most studies I’m reading are from around 2017, and didn’t involve any human trials yet.
The idea sounds interesting, but being one of the first human lab rats is a bit terrifying.Ed, or Celeste, do either of you have any insights or opinions on this concept?
Thank you again,
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- February 11, 2020 at 12:14 am
Thank you, Ed.
As far as I can gather it seems as if the CDK8 is something they are seeing expressed in aggressive melanoma, and so they are trying to target that.
The way it was explained today was that this trial is meant for people who showed response in some, but not all areas of the body within the first 12 weeks on something like an ipi/Nivo. The immunotherapy took down much of the tumors including all brain Mets, but he still had some progression in bones, and soft tissue.
We were told this is a trial that they’re using to determine if this new inhibitor combined with PD1 could be the key for the other 50% of people who don’t respond to immunotherapy.I really can’t find much information on CDK 6/8 in melanoma and how it was determined why it makes sense to target that in this trial, but since I hold no medical degree I am going to have to trust those that do.
I just wish I had more information. Information brings me peace of mind.
We are using this in hopes we won’t have to try TIL, but that’s a gamble too. The longer we wait on TIL, the worse off he’ll be when he starts that horrendous round of treatment. -
- July 10, 2019 at 3:43 am
Hey Don.
My partner had this with his treatment on iPi/nivo.
For him it was a sudden sensation like he wanted to simultaneously take a deep breath, exhale, and cough all at once. It would hit suddenly, and only last a second. It was very sporadic, and went away once he stopped treatment. -
- April 19, 2019 at 4:35 pm
Bill,
Thank you so much for your reply. This board, and it’s people are incredible. I’m sorry to hear that your treatment didn’t bring the miracle we all hope for.
Can I ask what forms of treatment you had gone through before you switched to TIL, and why the switch was made? Are you BRAF positive?
The trial he’d be going on also includes pembro afterwards. Was that the case for you?
Also, what’s next for you?
Thanks,
Erin
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- April 19, 2019 at 4:23 pm
These stories are what I’m afraid of. It’s the same doctor (Marcus Butler) doing the trial. I do not doubt his expertise, but I wish there had been a bit more positivity coming from results.
Thank you for all the info, and the link to David’s page.
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- November 13, 2018 at 6:06 pm
Thank you, Celeste.
The radiation was to the pelvic region as the pain had become crippling. The oncologist was trying to avoid radiation on the brain until we saw if they responded to the immunotherapy, which most have. A few have completely disappeared, others shrank. We are currently watching the last, and will have the radiation discussion again after next set of scans. We only have a gamma knife where we live, and are looking into the possibility of traveling for a cyber knife.
It’s all very overwhelming at times. I love the learn about all aspects of the treatment, and the cancer itself, but as much as I learn, it still won’t change the outcomes of the scans.
Thank you so much for all your information.
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