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Best Of
Re: Recurrence - next steps
Cheers for now
Re: Recurrence - next steps
Thank you for your update and it sounds like you experienced a lot in that time frame. From my understanding, every time we have chemo our body "remembers" and it hits us a little harder each time due to this. It sucks for sure and is definitely awful when you go through it. I see you have "put it behind you" and are now on a new road (whatever that looks like). Our journeys are difficult emotionally, mentally and physically as we navigate through our own unique treatments and how our bodies respond to them.
I wish you the best as you start going forward and healing from the journey your body, spirit and mind have been through.
Stay connected and maybe join one of our Teal Thursdays to chat.
Take care
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Yes…I am extremely grateful that I had the opportunity to participate!!
The trial title is…
A study of the PKMYT1 inhibitor RP-6306 in combination with Carboplatin and Paclitaxel for treatment of recurrent TP53 ovarian and uterine cancer (GYNEREP)
I have not been on the trial site for a while but I believe this drug is being trialed in several different formats for ovarian cancer. I have heard positives from another in one of the other trials. I believe some of the trials are now closed to new participants but am not certain. In preparation for my next steps meeting with my Onc at the end of the month, I will be going back into the trial site to see if there is anything else for me at this time.
I am very interested to hear what my PMH Onc is going to propose as my move forward.
Re: Let's get started! Come and introduce yourself
@BennieTBear sure can. They changed my aprepitant to Akynzeo and the breakthrough ondansetron HCL to Olanzapine
huge improvement
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@melissa you did not rant at all. We all have so many things impacting our lives and that's what we all bring to this forum. Having said that I'm terribly sorry to hear about your brother and the impact it's had on you and your family. It takes a lot of personal strength to reach out to resources such as a hotline and I'm glad it was helpful. We so often feel we can 'solve it ourselves'. I have a therapist through PMH and I value that time. I often think I don't have anything to say and then the hour flies by and I realize how helpful and important it is to speak with a professional.
I hope you will continue to be well and yes, that your remission is very long. Please continue to take care of yourself.
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@melissa I feel for you! As a mom of a son who has struggled with psychosis and addiction issues, believe me when I say that I can relate to stress caused by the actions of a family member. He also refuses to accept help. You will find a way to cope, but it is heartbreaking to watch the people we love self-destruct. I hope that you are able to find a way forward through this difficult time, and don’t lose sight of what’s best for you.
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@melissa I’m so sorry you are dealing with so much right now! You must be feeling really overwhelmed. I’m glad you are sharing this with us here. As we all know stress is not good for our health!!! You need to just focus on yourself. Do what you need to do to take care of your mental and physical health. Remove yourself from anything negative. I know this is easier said than done! Praying for you and your family 🙏❤️🙏❤️
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
@Sandi6 my results were great thanks. No sign of anything new and a slight shrinkage of the mass causing the partial bowel obstruction. I am back to my goal weight and feeling good. I hope your scan results are positive! Keep us posted!
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Good afternoon ladies. I had an appointment with my oncologist on Monday and based on my recent bloodwork and CT scan I only have to go for bloodwork every 2 months instead of every 2 weeks, I only need an appointment with her every 2 months instead of monthly and my next CT scan will be in 6 months instead of 3.
Thank you @Alwayslearning for reaching out and connecting with so many of us lately. We seem to have lost touch with each other over the busy holiday season. I am really missing @Strongwoman she was the glue that held us together and I appreciate your efforts to fill that gap. I will not speculate on her absence but I must admit I am fearful.
Please take care everyone and remember just because we have been given a cactus, doesn’t mean we have to sit on it!
Re: TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Geez…it has been awhile since I’ve been on Teal…but I have kept my clinical trial notes updated 😊.
I just finished Cycle 6…the final treatment for my trial.
Emotional on some levels since the treatment has decreased my CA125 by 90% and my tumours, according to last scan, by 23%. I have another CT this Friday, so we’ll see what’s happening.
I had some issues with reactions to Carbo but the allergy test was negative. So we went with increased dosing of pre-meds and longer infusion time for Carbo for my last dose. Good grief…I had every conceivable side effect you could get!! I am just getting back to normal but still a bit weak and tired.
Next will be to meet with my Onc, review bloodwork and scan and decide what will be best for me moving forward…another trial or one of my last two standard of care options. Fingers crossed there is something that can hold me stable for a while!!