Are you currently (or have you been) in a Clinical Trial?
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I think this is working! Both TMs were way down today. My onc is very happy. I’m glad I did not give up.
SUMMIT Basket Trial: Faslodex, Herceptin, and Neratinib for ER+ Her2 mutated mbc.
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SP,
Great news! Yay!
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Dear Shetland - that is the way o go! So happy for you!:) Saulius
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We are doing a happy dance for you, Shetland!!
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Fingers crossed that this isn't the case, but has anyone heard about changes to clinical trials due to COVID-19 and concerns about being exposed? If so, we'd like to hear about it. Thank you.
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Congrats Shetland!
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congrats Shetland pony! Yaaaaay
Moderators
I just called about the clinical trial that I am trying to get into and we are putting off my acceptance because of the “lock down”. I am ok with that since I would have to travel to Texas.
Meanwhile I have been in contact with NIH for my special cancer and they may have a trial for me open in six months. So the real key is my next pet scan to see how I am doing which has been changed from April to May. The Texas trial needs that before I can get in.
Hopefully I am responding to current treatment and waiting won’t be a problem.
Dee
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Congrats Shetland!
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M-I-C... see you real soon ...K-E-Y... Why? Because we like you! M-O''U'S-E! Yay Mickey!
For those of you not as old as I am, that is part of the theme to The Mickey Mouse Club that I grew up with in the 50s!
Thanks Curious!
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Good evening Ladies, just an update on my trial. I had my fourth injection out of five today. Same as all the rest, very painful. I can't wait for the injections to be over. So the Dr who injects measured my tumour for the first 3 injection but for whatever reason not this one, So I have no clue what's going on. (DANG). I do not scan until May. Bloodwork looks good and there has not been any talk of stopping the trials over the covid outbreak, so that's good.
Hope everyone is holding up and staying safe.
Kathy
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Yes, I have been reading her blog (https://barbigwire.com/) already for 2 years, and her story, along with her attitude, is simply amazing. Triple negative, in fact... Saulius
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Thank you for the congrats and dances, Bev, Saulius, Husband11, Dee, Simone, Cure-ious!
Kathy, will #5 happen before the scan? Make them measure it. Crossing everything for you that this will be worth it!
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Shetlandpony,
Yes number 5 will be before my scans in May. I was surprised they didnt measure this time. It makes the brain go crazy with thoughts of why? I was going to ask the Dr to tell me size next injection, already on the radar. Lol. Not sure he will, but may post the size to portal. Thank you for best wishes.
Kathy
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SusaninSF- How are you doing on the IMMU-132 trial?!! Supposedly it takes a couple months before you really see the benefits, and you mentioned that scans were coming up- really hope its working for you!!!
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Barbara Bigelow becoming NED through Keytruda happened years ago. She'd mutated to TNBC first and because of some genetic reason, went into a coma from Keytruda and emerged cancer-free. She has since had melanoma, though, which was excised.
A young woman on the JPCE trial just became NED after two years on Keytruda, Verzenio, and Anastrozole.
She's off Keytruda now. She did have her thyroid knocked out by it and also developed pneumonitis but worth it if she remains in remission.
Here’s her blog :
https://hannahincancerland.wordpress.com/2020/04/09/golden-unicorn-status-achieved/
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Hi everyone. Curious if anyone has any familiarity or experience with am investigational drug in clinical trial - 9-ING-41. I am considering a Phase 1 trial with it - NCT03678883. Would love to hear from anyone who knows anything about this.
Thank you in advance. I hope everyone is managing OK in this strange new environment we are living in....
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thrivingmama, thanks for sharing this. Our editorial staff will also look at 9-ING-41. Hoping you hear from others!
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re the sleep aids, just a quick reminder that I believe most studies require you clear all meds and supplements with them, even otc.
Melatonin is a big fat NO from my study. I got prescribed Zopiclone. they were ok with both diphenhydramine & dimenhydrinate but these stopped working for me.mods, Re Covid:
the BC Cancer Agency has not cancelled any ongoing trials as of their current info. But there are no new enrollments so anyone who didn't get in before they shut things down, has to wait till who knows when. I got in on Monday Mar 16; everything shut down on Friday the 20th. Eeeek.
So far my study NCT04177108 has had no change of protocol at my clinical site. Regular - non study - pts have had as many of their appts changed to telemed as possible but study participants still have to attend in person for our check ups. Mine is a large international study so I think changing protocols will not be easy. I just hope they get enough people enrolled to power this study and do not end up abandoning it
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thanks moderators!
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Good Morning, I've had my fifth and final injection. Yay It went better than previous ones. Just before injection, the Dr asked if I wanted something in iv for pain. I said yes. Soooo much easier as I didnt tense up which I believe caused the majority of issues for last 4.
Dr measured this time and it is the same size but he also said ultrasound was not as accurate as ct scan.
My bloodwork this week showed a very large jump In my ldh which concerns me. This is usually a good tumour marker for me. It has been decreasing each week prior to this. Dr explained that this could also be a good tumour die off. Let's hope so.
I've developed some heart palpitations which I need to have checked. Hoping its anxiety and nothing serious looming.
I scan early May and will update then.
Stay safe
Kathy
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Kathy, yaaay to finishing your injections, boooo to heart palpitations and I hope you can get them checked out soon. May is just around the corner and I am hoping for the very very very best results on your scan!
I wonder what the next step in the trial will be after your successful scan?
xoxo Katty
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Thank you Katty, they have booked some tests for Monday. (After successful scans) I will remain on keytruda for 2 years. How are you doing?
Kathy
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Sounds like a good plan!
I'm doing fine, nothing new going on. My scan has been bumped until early June, but I'm cool with that.
Take care!
Katty
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I'm cross-posting an interview with Hope Rugo (UCSF) about sacituzumab govitecan (Troveldy) that was recently approved by FDA for triple-negative MBC and is in phase 3 trials for ER-positive MBC. Another tool in the kit!! but you do lose your hair (sigh) - however she says its already being tested with immunotherapy, so this may be a really good option-
https://www.cancernetwork.com/breast-cancer/hope-r...
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Thanks, Cure-ious.
Honestly, who is in charge in coming up with the names of new medications and why does every drug company insist on them being so bizarre? Do they follow some sort of pattern to name these drugs? Troveldy? Tukysa? Piqray? Balversa? (Balversa is not approved for BC but I did recently take this drug in a trial before it was approved for urothelial cancer) WTF?!! None of the names of the drugs we take seem normal or even seem to be generated out of the English language (nor any other language to which I am aware). They all sound like nonsense.
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Just wanted to bounce two things off others: I recently had progression (on a clinical trial) and I was putting some feelers out about other clinical trials.
1) One place I called told me that there is a fee that must be paid out of pocket, up front for the initial consultation which must be completed before even applying for the trial/before they decide whether to invite you to apply to in the trial. It's about $800 or $1000. It's not covered by/they will not accept insurance. It is a major cancer center and a listed clinical trial (not an obscure, 'shady' organization). I thought this was a bit odd (and expensive). Anyone run into this before?
2) I also reached out to NIH about one of their listed trials. They told me it doesn't work that way... that if I am interested in a trial there, I must submit all my records to a central trial desk and they will tell me whether they have any trials they think are suitable. And they want my records from my health care providers, not from me. It's not easy getting all my records pushed out the door, especially when I cannot "audit" what has and has not actually been delivered. I see the merits of a central desk but I was just hoping to get some idea about whether a trial there had a good chance of being suitable before fighting the medical records battle (and it is a struggle!).
Thanks for sharing your thoughts/expereince.
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The first question raises a red flag. Could it be you are looking at a web site of a third party trial search service, offering to facilitate enrollment for a fee? Even if the trial itself and the institution is legit, could there be a middleman here? Or is the trial at a for profit place like CTCA?
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no- I had out of pocket expenses just to be seen for my trial at UCSF. The truth is clinical trials are funded mostly by grants snd research money. They can’t pay fior everything do it’s not unreasonable they don’t pay for a doctors visit before you are officially in the trial. These are all things I learned while on Trisl. It was very weird at first when I had to pay for my echo and consult to get into the trial.
Situation #2 also doesn’t sound too ou of the ordinary. Trials are picky as to whom they take. A big institution like NIH probably had people on staff whose whole job is to check/match people and trials. It sucks to have to gather all the information they need.
Overall I found the Trisl process clunky at best. I expected they would do more and pay for more. Thss as t being said, I am glad there are trials and that they give us options.
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