Clinical trials

This topic has 9 replies, 4 voices, and was last updated 5 years, 7 months ago by Bubbles.

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- January 29, 2020 at 5:52 pm
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Bubbles
Participant
I wish we were at a place that no melanoma patient needed to consider clinical trails as a treatment. However, despite the great strides made with the FDA approval of multiple targeted therapy and immunotherapy drugs starting in 2011, there are still those who need additional treatment options. I recently posted some of my thoughts on what clinical trial jargon means, how to gain access, and what is actually involved – on this forum in response to a poster’s questions a while back. However, today, I put together a post on my blog that included those remarks as well as some research articles that I had been cogitating on over the past several months. If you are interested ~ http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/01/clinical-trials-lies-damn-lies-and.html

Here’s to the ratties! Best of luck to each of you! – celeste

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- - January 29, 2020 at 8:25 pm
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  jbronicki
  Participant
  What a great synopsis of all the issues! I love the debate on statistical significance too 🙂 THANK YOU Celeste, you are invaluable and truly define the words “empowering” and “advocacy”. HUGS! I’ve been going to presentations on Adaptive Designs in Clinical Trials and Patient-Centered Clinical Trials, that may be a way forward…..I saw this incredible Patient Advocate at the Pulmonary Fibrosis conference, she was a keynote speaker about participant inclusion in development of trials (and believe she was a participant in one as well that folded), you might like her stuff, her name is Bray Patrick-Lake, she was so phenomenal as an advocate, really put together a strong debate on behalf of including patients in clinical trial design (I immediately thought of you since you have both the medical background and the personal background) : https://www.pulmonaryfibrosis.org/pff-summit-2019/program/keynote-speakers https://dcri.org/patrick-lake-stakeholder-engagement/
  - January 30, 2020 at 2:05 pm
    
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    Bubbles
    Participant
    
    Thanks, Jackie! Thanks for the link and info! Bray seems really cool! Glad she is there for those in need! Hope you have a great day! c
- - January 30, 2020 at 1:48 pm
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  gopher38
  Participant
  Thanks for the post. Very helpful for me and I’m sure several other current and future forum-goers.
  - January 30, 2020 at 2:07 pm
    
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    Bubbles
    Participant
    
    Perhaps it will help those in need. Wishing you my best. c
- - January 30, 2020 at 4:56 pm
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  ed williams
  Participant
  Great post Celeste!!! One thing to consider when doing a search these days is that a lot of the trials for new immunotherapy drugs and combinations are grouped in “solid tumor” category not just melanoma any more. Here are four different centers in the US and some of there trials that are showing today and you will see solid tumor used a lot in the language. So many options and how to select what is right for each patient, really shows the need for trust in the Oncologist and if possible one that specializes in Melanoma. https://www.mdanderson.org/research/departments-labs-institutes/departments-divisions/melanoma-medical-oncology/clinical-trials.html http://www.theangelesclinic.org/Home/ResearchClinicalTrials/ClinicalTrialList/tabid/19278/Default.aspx
  - January 30, 2020 at 4:58 pm
    
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    ed williams
    Participant
    
    Here are the other two locations, first in Boston and second in NY city. https://www.massgeneral.org/cancer-center/clinical-trials-and-research/search-clinical-trials?cancerCondition=Melanoma https://www.mskcc.org/cancer-care/types/melanoma/clinical-trials?keys=&disease=All&phase=All
  - January 30, 2020 at 5:03 pm
    
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    ed williams
    Participant
    
    One more for those folks on East Coast, can’t forget Mario Sznol at Yale. https://www.yalecancercenter.org/patient/programs/melanoma/trials/
  - January 30, 2020 at 5:07 pm
    
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    ed williams
    Participant
    
    Some times if you can see a leading expert like Celeste did with Dr. Weber, it can make all the difference, here is one at Yale that is well worth seeing. https://www.yalecancercenter.org/profile/mario_sznol/
  - January 31, 2020 at 9:35 pm
    
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    Bubbles
    Participant
    
    Very good points all, Ed!!! Yes….looking for treatment options via institution can be extremely helpful as is looking under other descriptors in the clinicaltrials.gov search and indeed ‘solid tumors’ is certainly one!! c

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