Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
recurrence
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@UnPickNot Good Morning. It has been a bit since you last posted and you were waiting on results and to make decisions re: treatment. I am curious as to where things stand today and how you are doing with it all. If you could update us and let us in to see how you are doing, I feel it would be great support for you and anyone who may be undergoing a similar journey. Hoping you will post soon. Will be continuing to think of you.
Take care
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@Strongwoman, it has been a while. Shanks for checking in.Do you may remember, I am a 10-year survivor with multiple recurrences. My last course of treatment was almost 2 years of weekly Paclitaxol in combination with Bevacizamab (Avastin). 4 weeks on, I week “vacation”
In December I chose to join the artistry-7 clinical trial and was randomized into the control group where receive standard of care chemo. in my case that means I am on Caelyx (LPD-liposomal pegylated doxorubicin), otherwise known as the Red Devil. I feel like I have my life back as chemo is ONCE every 4 weeks.
But caelyx is slow to act and my CA125 continues to climb. Ctscans show stable disease so we continue. I have another scan on Tuesday so we shall see. I want it to work. The and decision fatigue is real. And I know what my next options are and I'm not really in favour. There is recent evidence that given enough time those who are considered platinum resistant can become re-sensitive due to heterogenerity so that is going to be an interesting future discussion. And there are hopefully some new trials coming down the pipe, maybe immunotherapy!
So I'm riding the roller coaster, but I've got my seatbelt on and I'm trusting my Navigator. God is in control of the rest.0 -
@UnPickNot Thank you for posting your update. It is inspiring to see how long you have lived with this disease and a glimpse of your journey. It sounds like you have worked through a lot of things over the years. I don't think it would be easy. Some of it comes with time, or at least, that is my belief. The red devil eh? You ladies who do go on it, are inspiring. Sounds like you have learned to live despite what is going on which is admirable. You are also doing your research, preparing for what the "next" discussion may be instead of waiting which is smart. Immunotherapy sounds like you would "welcome" it.
Yes, the roller coaster ride, we are all on. All of us on different parts of it at different times.
I also agree that the "decision fatigue is real". We can sometimes fatigue of making the decisions when it comes to treatment and our journeys. Tire of the "what ifs" and "what next" that sometimes it is nice to live in the present, meaning each and every day, and enjoying it for what it is.
Thank you for sharing and imparting your knowledge and journey on this forum. I am happy when I see ladies like you posting that have not been on in a long while. It provides HOPE, for many and some may glean some knowledge that may assist themselves in their own journeys. I hope to see you posting again in the near future.
Take care in the meantime and I will be looking to see what your CT scan on Tuesday discovers for you.
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So I’m going into round 4 of treatment on April 3rd. My latest ct scan showed the lesions are shrinking and ca 125 is dropping. I’m not thrilled with my lack of energy. I am able to work a few hours each day but I do require nap times. My partner is so supportive through this. After my next treatment God willing I’ll get a break as we plan a fun trip to Europe. Then it’s on to more decisions about part inhibitors0
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@powderpuff 4 rounds of treatment. How many in each round? Sounds promising that the scan is showing both the lesions shrinking and the CA 125 level is dropping. Encouragement is what I think.
I bet you are not thrilled with your lack of energy as I don't believe any of us are. If naps are required to get through your day, then nap away for now. Glad to hear you have such a supportive partner and have been able to maintain some sort of work during it all. Inspiring. If they don't offer a break, can you ask for one? I wish for you to plan that trip to Europe and that it becomes a reality for you. Parp inhibitors....lots of info on that, on this site. How do you feel about going on one of those?
Thank you for sharing your journey with us. 0 -
@Strongwoman. I have one session per month. I’m also on the red devil combined with carboplatin. I’m also going through a mild depression as I try to cope with this recurrence. Trying to find the little miracles that come my way every day.0
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Ohh @powderpuff It is tough accepting a recurrence and all that goes with it.....mentally, emotionally and physically. I am saddened to hear that you are navigating a depression as well. Some days it is tough to find that silver lining or gleaning of hope when the day looks so dark. Sounds like you are doing what you can to find them though which is part of the battle. You have recognized and acknowledged it which is a big step to recovering from it. All in due time. It is a grieving process as we accept our recurrence....anticipatory grief. Allow yourself the time to heal and be kind to yourself.
We are all here for you whenever you need us in whatever way.
Thank you for sharing and hope you continue to do so in your own way and time.
Take care of you. 0
