Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 Community Champion. 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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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@Fearless - Vol Mod - my CA125 has risen to 40, so recurrence is suspected, as much as I wish there was another reason causing it to rise, I can't find one.
@Albertan - a neuropathy cream for diabetics is worth a try, but you'd be taking a chance as to whether or not it would help. I have had good results with a healing balm of Frankensense and Myrrh. It takes a long time, I have noticed a reduction in the mild neuropathy I ended up with after frontline, just these past couple of weeks, it is I'd say 98% gone in my left foot and about 90% gone in my right foot. I was also faithful to icing during the infusions.1 -
So sorry @Tinazzie for what you went through , being diagnosed with two ...at the same time.It seems that the gen.counsellor talks to the patient ,regardless of result.Someone called me to book an appt.to talk about results but I am thinking of delaying that till the end of my chemo treatments in Jan.I think it would stress me too much now and cause too much anxiety .From what I have been told a positive result would mean mamograms every 6 months and I wouldn't need one till March so I would definitely like to discuss results before that.
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@BeamBlossom thanks for info0
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@albertan I was on a unique Olaparib trial. I am not BRCA positive so Olaparib would not normally have been available to me and if it was it would have been for maintenance. But my cancer recurred two years ago just when they were looking to see what Olaparib might do for a recurrence in a patient who was not BRCA but had an HRD biomarker, was Platinum sensitive, and had High Grade Serous advanced OVC. I met all the criteria so instead of putting me on chemo and then the PARP, I went right on Olaparib as a treatment, not maintenance. And it worked pretty well for almost two years. My tumors shrunk by 75% in the first three months and then remained stable up until recently. So off the drug and going back to chemo in two weeks.1
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@BeamBlossom a CA125 of 40 shouldn't necessarily flag a recurrence. The test is too volatile to make any assumptions on it alone, especially in the absence of persistent symptoms over reasonable period of time. I really counting on your CT being clear and would be really surprised if they note anything "remarkable". But please do let us know. Hoping we'll be doing the happy dance for you gal.2
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@Fearless - Vol Mod - So, if the Olaparib trial had not been available to you 2 yrs ago, you might have been headed back into chemo at that time for the recurrence, is that right? How much time passed between your frontline chemo and that recurrence?1
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Hello Ladies
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Anyone on here today that has side effects after treatment?0
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@albertan dang, I knew you'd ask me that. Its the acronym for Homologous Recombination Deficiency. I'm no genetic expert but it has something to do with a genetic instability in patients with advanced OVC who are platinum sensitive...that meaning recurrence has happened no earlier than 6 months post chemo that used a platinum based drug (Carboplatin usually).1
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@Fearless - Vol Mod - re my CA125, it is the consistent upward trending that is a concern and so triggered the CT scan. I will be relieved to find out what it shows, better to know, than to be tortured by wondering every day. It is important to note, but admittedly counter intuitive, that there is no correlation between amount of cancer growth and CA125 level. As for symptoms, I'm still not sure what it would feel like, I do get some pangs and twinges in my upper abdomen, but don't know if they are significant or typical scar tissue tweaks.0
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@BeamBlossom yes, that's what we were all expecting until our medical oncologist (who is now my primary oncologist) threw the trial out as a possible option. I had to have another CT, my tumor tissue has to be assessed and few other things to ensure I qualified so it took about a month before they accepted me into the trial...and one hour before AstraZeneca closed it to more patients. So I got in just under the wire. As for recurrence timelined. I finished chemo August 2017 and was considered NED until October 2018 when I started to notice some bowel issues. My CA at that time jumped to 150 from normal range. A month or so later it was 400 and we did a scan which did show two very tiny tumors and I began the assessment process for the trial. I started the Olaparib January 2019. So almost two years ago.2
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Hey @BeamBlossom - yes, I know what you mean about interpreting symptoms. I too get some 'pangs and twinges' in the abdomen and wonder the same thing - scar tissue, or the new normal for my new insides. The same with fatigue - is this amount of fatigue normal after chemo, or are there other things going on inside, etc.0
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@CountryLiving. So nice to have you back this week. Side effects? I think just about everyone here can list some during, after and continuing. For me fatigue, some cognitive issues (brain fog), neuropathy in my feet. Are asking about effects during chemo or after?0
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@Tinazzie - I was overwhelmingly fatigued until mid October, finished frontline July 30
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Thanks everyone !Special thanks to @Fearless - Vol Mod and virtual hugs1
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@BeamBlossom That is so helpful to hear. I finished just over a month ago and am still very fatigued.
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Side effects of chemo while on it:fatigue, rash, low blood pressure, fast heart rate, mild neuropathy, constipation0
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@beamblossom @tinazzie Just a reminder that the pangs and tweaks you feel could well be from either scar tissue or adhesions. So many of us do get these weird little pains every now and then. For me, it did turn out to be adhesion related...I am full full full of them apparently and they don't show up on CT scans. And yes, @BeamBlossom is right. There is no corelation between CA score and size of growth. My CA has gone from mid 100's to close to 2000 in three months, but the one tumor that's started to grow again is still less than a cm in size.1
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@Katie666 for me it was the worst in August, when it resolved in mid Oct it was kind of all at once, one day I just bounced out of bed in the morning, instead of sliding out of it wondering how I'd find the energy to make it to the couch lol1
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@Fearless - Vol Mod - I sure hope it is scar tissue or adhesions, I feel it every day, but it is not worsening. Would you say you feel those pangs daily?0
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@kattie666 I think if you were to survey most of us who've been out of treatment for an extended period we'd all say it was the fatigue that took the longest to get rid of (and some of us never got rid of it totally) but was the one we all assumed would go away overnite. Just be patient with your body. Eat well, get a bit of exercise every day, and you'll see improvement over time.2
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Hope everyone has s great weekend and anyone having scans or testing all the best and as always it's a pleasure to on this group chat!!!0
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Have a good week everyone!0
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Signing off as well. Have a good and peaceful week.0
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@BeamBlossom every day and especially if I twist my body or bend too far. I had the same worries you have until I had that little botched attempt to fix my hernia in September and they found all the adhesions. So something good came out of what I thought was a total waste of time. Now I don't worry when I feel the twitches and pangs and pulling sensations. My new normal I guess.0
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@CountryLiving - I've had 2 unusual side effects, one - I cannot tolerate digestion of my beloved Panda Black Licorice, and two - I suddenly became allergic to the face moisturizer I've used for 10 years, but not on my face, only on my neck. Other than that, neuropathy which I am working away at and is slowly improving as well the fatigue which is also improved.0
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Wow, our longest chat so far. But time to say goodbye for this week. Thanks everyone for the support around what lies ahead for me. And I hope today everyone got a new bit of info, or felt less alone, or is leaving today uplifted. You're always a wonderful group in the way you not only have your own challenges, you're so quick to support the rest of us with your own experience and your encouragement. Have a wonderful week ladies. We'll catch up next week!
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