clinical trials

i was just wondering if anyone out 5ere has perhaps a good website in understanding clinical trials
alot of women I talkdont really u derstand the ins and outs
is there an advocate around that could help some of us understand them


Comments

  • Hello @maryk - you can try this site   http://www.canadiancancertrials.ca/  - thanks @CurlyHair
    As each province is different as to what may be offered locally, you could discuss with your health care team about what is available.  There is some really good information at the above site and you can search by province. Hope this helps.
  • Thank you Flower Girl 
    I hope the Caylex and avastin works 
    this on going dry hacking cough is getting to me
    whats your p,ands for. Ew Years eve?
    in gonna watch it on the tv
    my fav CNN Anderson cooper is ringing it in New York 
    Happy New Years!!!


  • Hi @maryk .  Welcome to OVdialogue.  @Flowergirl has suggested a great site for further information about clinical trials.  There are a couple of other resources you might like to look at too.  The Ovarian Cancer Canada website has some information and there is a relatively new site called It Starts with Me that is geared to patients and written in lay language to make the topic easy to understand.  Here are these 2 links:
    http://ovariancanada.org/Research/Clinical-Trials
    www.itstartswithme.ca

    Another resource for help is the Ovarian Cancer Canada Regional Director in your area. Please feel free to reach out to them too for information and support.

     Here is the link where you can find that person based on where you live in Canada.  
    http://ovariancanada.org/about-us/our-team?lang=en-ca

    On another note, when you use the "@" symbol in front of someone's name you tag them and then they are notified that someone has mentioned them in a post.  Otherwise, they might miss it.

    Hope you find this information helpful!
  • This is an old conversation, but one I think is worth continuing and updating...so here goes...

    I am looking ahead at potential clinical trials to share with my Dr so she can take them to the tumor board to see if they are appropriate for me. I am not sure when I will be participating, just waiting to see if my current drug cocktail is going to work and for how long. I do know that my next step is a clinical trial, hence my current research and many questions.

    My background (2019-present):
    HGSOC
    Diagnosed via hysterectomy pathology 
    BRCA negative
    Platinum-resistant after two rounds of SOC followed by PARP-inhibitor maintenance (Niraparib: ZEJULA) (which did not work)
    2nd recurrence: Currently on Caelyx (PLD) and Avastin (Bevacizumab) (just finished the first cycle)
    London and/or Toronto are possible sites for participation in clinical trials

    Potential trials:
    • NEMVALEUKIN Alfa + Pembrolizumab (Phase 3) 
    • Pembrolizumab/Placebo plus Paclitaxel with/without Bevacizumab (Phase 3)
    • Batiraxcept/Placebo in combination with Paclitaxel (Phase 3)
    • Alpelisib plus Olaparib with no BRCA mutation (Phase 3)
    • Using Genetic Profile to Determine Treatment for Patients who previously received PARP-inhibitor (Phase 2)
    • Immunotherapy Platform Study (IPROC) (Phase 2)
    • Maintenance treatment with Bevacizumab and Atexolizumab (Phase 2)
    Has anyone reviewed/considered any of the above trials and/or spoken to their oncologist about them? If considered but did not follow through, why?

    Does anyone have experience with biopsies? (I've never had one)

    Some of these trials require confirmation of certain gene mutations or expressions...I have no idea about how that would be determined - probably thru biopsy or bloodwork - will discuss with Dr if considering one that requires further determination.

    If you have participated in any trial, what did you find to be the most difficult part of the commitment for you? (travel, time, side effects, waiting, not knowing if placebo or not, follow-up commitment, etc.)?

    Has anyone discontinued their participation in a trial? Why? If you withdrew from a study, did you go back to chemo? Did you consider another study?

    What happens after trial completion? I have seen some roll-over studies for continuation if the drugs have been successful. But I don't know if that is true for all, the majority, or some. I have also heard that, where successful but no roll-over study is available, it may be possible to find out which drug you were receiving. I imagine that would not be easy to find out and maybe impossible in some cases. Does anyone have any experience or thoughts on this? Do they just stop treatment, even if it has proven to be successful?

    I think any feedback regarding your experience with a clinical trial would be welcome by many of us who are just at the stage of our journey where we are now considering "what next?" 

    THANK YOU!
  • StrongwomanStrongwoman Peer Support Vol
    @GloHo
      So many questions and looks like a wide array of trials. I, sadly, can't answer most of your questions but perhaps other ladies may have some input based on any trials they have been on.
      I will say, that although you are questioning or believe feel you haven't had a biopsy, your tissue from your hysterectomy would be used (the diseased part). That is how they would come up with the pathology and diagnosis as to specific type and what they call histology.
     My determination for the trial drug was approved by London requesting a piece of my tissue from Hamilton to do their own testing etc. There is usually a document to sign for release by you if the tissue is at a different institute than where the trial or alternate oncologist resides. 
      Does that help clear up that part of it?  Also, if you do go to a new institute for medical care, although they may have a history of your case I have found they usually like to do their own bloodwork the day of your appt with them.
     Hope that helps and keep us posted 
  • @Strongwoman
    Ok. That makes sense and definitely helps with the pathology part. Thanks!

    Good to know about blood work too. I just had a port implanted yesterday and am hoping that will come in handy when I do head to a trial. I know only nurses can do the port needle stuff so it will depend on who is doing the draw. I still have to get vein draws at my Dr clinic appts. I’m sure I’ll appreciate the port even if it’s only used for infusions. My veins are a challenge!

    I have a CT at end of Feb that will determine the direction I’m headed. I’m hoping drugs working and I can wait on the trials for a bit. I try to listen to my body but this round I’m getting mixed messages. Some days I would swear the drugs are working, yet other days my body sends me a message and I think “oh oh, what was that?” I’ve also read that it can take 2-3 cycles for these drugs to start working…so just waiting. 
Sign In or Register to comment.