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LGSC and trials

Strongwoman
Strongwoman Moderator
in Encouragement and Support
I am wondering if anyone with LGSC has looked at or trialed any of these:
GOG 3026
RAMP
BOUQUET 
Does anyone know if they are available in Canada as well?

Comments

  • Strongwoman
    Strongwoman Moderator
    Good Morning!  
      For those ladies with LGSC, I am writing to report any progress I have had thus far with trials.  I have an appt on Jan 15th at PMH (Princess Margaret Hospital) with a Gyn Onc as a consult and to go over anything that may be on the table for myself.  Going in, I know in my heart of hearts that the criterium I want met are:
    what is the overall success rate if I go on trial compared to if I do nothing?
    what are the side effects of what I will be put on?
    will trial stop the abdominal pain I experience daily?
    will the side effects out weigh the outcome in the end?
    how will I be monitored and how many visits etc am I looking at?
    oral or IV therapy for trial (the BOUQUET trial has so many options that I currently think there are only 2 viable for myself but am unsure)
    what their general knowledge and demeanor is when in the appt and would I like to work with them?

    In the end, anything I learn, I will post and share for everyone here.  I will be discussing at length anything on the table for myself with my Palliative doctor.  I am at a point now that I am not willing to give up how I feel (most days) and the things I am able to do in order to going back to feeling rotten UNLESS there is a definite rainbow on the otherside type of thing.  That is me though and what I want personally.  Everyone is different.  I am on a mission to get some of my Legacy projects completed no matter what I choose to do.  I am very thankful and grateful that my neighbour is coming with me as she is a retired vet and will be a good advocate for me and will ask some questions I may not think of.  Plus it also gives me another person to help me decide if I want to work with the team at PMH.  

    I will keep all updated as I go along.
    Currently, I am waking with abdominal pains daily no matter if it is water, tea or food I eat or drink.  I am more fatigued than before Christmas for sure.  I take things as they come on a daily basis and rest when I need to.  Above all else, I take time for me to make sure it is me that comes first.
    Take care of yourselves and I look forward to chatting tomorrow with as many that can make it to the Teal Thursday chat!

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