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ToughAsTeal

@BeamBlossom hi BB😀. Gemzar is not one i have heard of? I will have a read. Will you be on dexamethasone too for that? You and @Fearless - Vol Mod all wired up on dex.  And we thought only Red Bull gives you wiiiings!   Will it be every 3 weeks for you? Long time in the recliner? 

@Fearless - Vol Modvery very very happy to hears no h&f for you.  It really was unplesant. And very happy to hear of the echo results

BeamBlossom

@Fearless - Vol Mod Well today I feel great as I have not had any chemo for 6 weeks now. My new regime starts next Wednesday. It will be carbo/gemzar on day 1, then gemzar only on day 8, then a week off, then repeat. So the carbo ends up being once every 3 weeks with the gemzar more often. I'm enjoying my last week free of chemo, I've got a dental cleaning booked and tomorrow I get my 4th covid vaccine.  

Fearless

Question for anyone out there. I'm noticing this most recent series of chemo (started late November) is really affecting my brain function.  More forgetful, especially very short term memory.  Disorganized.  Trying to process more than one thing at a time overwhelming.  Is it the Caelyx/Avastin or perhaps just 5 years of treatment building up. I would have hoped that after this series and some recovery time much of it would come back to normalcy but I understand that as long as this combo is working there is no end in site.  They just continue for as long we're getting results and the toxicity isn't damaging my heart.  

Eileen

Good morning everyone sorry i am late joining in

BeamBlossom

@ToughAsTeal - I will have to wait and see, but I think I will get all those premeds, just like frontline.  I sure hate the insomnia but it is great for the housekeeping!

@Fearless - Vol Mod  Avastin messes with blood/oxygen delivery so I would expect that might slow down brain function. There also is the impact on our system overall in having to process and then dispose of such a high dose of toxic chemicals. Is it worse immediately following the infusion and improved as you get closer to the next one? 

Fearless

@BeamBlossom
Wow, didn't realize how tight your cycle times will be. Day 1, Day 8 and then only a week off before repeat. No rest for the weary eh? But you should find the Gemzar ( @ToughAsTeal aka Gecitabine and an alternative to Paclitaxel) easier to tolerate. How many cycles are they recommending? Six or would they expect they might go a full 9 if needed? I believe that's the max before the Carbo becomes useless.

BeamBlossom

@Fearless - Vol Mod  The number of cycles will depend on the response, there will be a CT after 3 cycles. If all goes well, there would be 6 cycles, then we might try Lynparza.  I was sure glad to hear this is not chemo in perpetuity. I am afraid for my bone marrow.

Fearless

@Eileen Welcome. I was hoping you'd join us today. You'll the way this platform flows for live chat a bit awkward at first but hopefully get used it.  We often overlap so it can seem a bit disjointed and refresh to catch the latest can be a nuisance. All process improvements I  hope to get addressed this year.  If you're comfortable, please share a bit of your story with our members today.  And no apologies for "lateness".  I'm always on at 1pm as host but our group join in as they are able anytime in the 1 - 2pm slot and many who aren't able to join just scan the discussions after the fact; an advantage we're able to provide over the Teal Teas where the conversations are lost once the session is over.

ToughAsTeal

@fearless i think, i have been compensating for changes in short term memory for a while now, by sending myself texts. I can search keywords... like... did i ask Paul to buy flour? Because its not on our grocery white board. I suppose with my work arounds i am not noticing the forgetful until family points it out. Sometimes, i just can absorb everything and i tune out but apparently nod my head. Selective listening?  I have also noticed change in my hearing (i was already wearing hearing aids, and, i think it was carbo?? That can effect hearing). So is it memory, or did i actually not hear something?  For anyone just starting out into treatment, or even into treatment, a hearing test at least gives a baseline if hearing has been effected by treatment. 

Its hard, coming from a career that required strong organizational skills, and listening skills, to suddenly be aware of missing things. Its frustrating. Be kind to you. 

ToughAsTeal

@Eileen hi Eileen😀😀 

BeamBlossom

@Eileen  Welcome!

ToughAsTeal

Well there is a new topic maybe for a webinar?  Chemo brain, hearing, and I forget the last thing.... 

Fearless

@BeamBlossom
That sounds like a reasonable plan.  I'll be keeping my fingers crossed you show responsiveness at the first scan. That would be a real good sign.

You could be right on the money about my brain function linked to the Avastin.  Truly no difference though between infusions but they are only two weeks apart so I would doubt I would have enough time to recover before I'm hit with the next infusion.  I've got a plan in place to get started on some aerobic exercise asap. When I realized my cardiac flow rate had dropped and one way to raise it was through aerobics it occurred to me my more recent sedentary existence might be the cause.  Now I have a second reason to get at it....some positive effect on brain function so I'll be watching for both showing improvement. That was a very helpful comment so thanks. 

ToughAsTeal

@Fearless - Vol Mod to your opening hello message... i think it would be a good webinar to suggest an update look at Parps... from the trials, to where things are now..zejula yes seems an increase of gals.. and some like me who were, but no longer are.. whats next.  

Eileen

Thank @Fearless - Vol Mod. Well ladt Valentine day i was diagnosed with grade 3c high grade ovarian cancee. After testing (as they kept me in hospital for few days) i started my chemo in march all went well until i developed covid back in june which delayed my surgery. By then i had to have a 5th chemo. To much of a delay. Had my surgery in august then 3 round of chemo but last 2 chemo i had delays due to drop in levels. But my chemo carb was lowered and i had my 7th chemo By the time my 8th chemo came around my ca125 levels were at 26.  but again another delay levels still too low. By 1 week later ca125 levels went back up to 40. So my oncologist just lowered my abraxine this time and had my chemo. Sorry long story. Had ct in dec showed i still had some persistant nodules in my pericolic gutter. By first week of jan my ca125 levels were up to 94 now i started zejula a week later 200mg. Minimum side effects if any 3 weeks later i had to stop zejula because my platlet dropped to 76 i think judt had blood work yesterday ca125 levels are now 198 i go see my oncologist this afternoon. Been expetiencing bloatness bowel issues pain in side a nit of nausua.

BeamBlossom

@Eileen Goodness that is quite a story! What a long first year this as been for you. I've known of some ladies who have a very hard time out of the gate, buy once things get under control they have had long periods free of treatment. I hope it goes like that for you too. 

Fearless

@eileen. I'm sure you're feeling pretty anxious about your appointment today.  I too am 3C high grade but in my sixth year of treatment. I know we all hope and pray for first line treatment to be fully successful, but the norm is recurrence at some point. For me it took a year and half to recur....just when I thought I'd had it licked. But the recurrence was caught early and while it's been a yo-yo of recurrence, NED, recurrence and clinical trials and chemo over the years I"m still here, plan to be a lot longer, and learning to live pretty well with this disease. So while I hope the answers for you are all positive and good, if they're not don't give up hope. Just keep looking forward and as positive as you're able to come here, on the chat or anytime when you need answers, encouragement or just a safe, non-judgemental place to vent or cry. We've all got big broad shoulders and a multitude of hugs when you need them. 

Eileen

Thank you @BeamBlossom. From reading everyone notes today i was worried about brain fog when i was doing chemo but i didnt get any but If i am reading everyone notes i guess the more u take chemo the harder it gets on your body. I am sure not looking forward to that. I do know i did develop a mild fatty liver by the end of chemo 8. 

Fearless

Well my my dear friends, time to go once again. Some weeks the time sure flies and thank you all for coming together this week.  Selfishly I got more than I could have ever hoped for in some new ideas to make life better..so thank you

As for Monday....fill you world with love and love will return to fill your heart.  Until next week.....

Eileen

@Fearless - Vol Mod yes when the nodules were found they were all under 6mm. I am not sure how many my oncologist seems to think their are 3 but my ct didnt say 

BeamBlossom

@fearless - Thanks Fearless, hope everyone has a good week ahead.

Eileen

Have a good week everyone

ToughAsTeal

Nothing says valentines like a red velvet cupcake in my life even if my chemo digestions argues back, it’s worth it. Have good appointments, treatments and results over the next week to all of you ❤️

Fearless

THURSDAY FEBRUARY 17 AND TIME FOR OUR WEEKLY 1PM ONLINE CHAT.  WELCOME.

Wow, it's been a very busy week for OVdialogue.  Not necessarily all new diagnoses. Many members have just found us and in various stages of treatment and even recovery.  So welcome to those new members of our community.  I hope you find here the support you're looking for.  

Reminders/Announcements
Teal Teas for February/March:  It looks like there were only two this month, both over now. And the same for March.  Just the 15th and 16th.  I'll have to check into that.  But registration is up and open for the upcoming March sessions.

A great speaker series event coming up on February 23: The 411 on sexual changes after cancer; a topic often difficult to discuss but so important for our emotional and physical wellbeing.  And March 23 is the reschedule date for the session Learning to Manage Your Fear of Cancer Recurrence.  More information and registration to participate are both available on the OCC website under Local Events.  

Other than hoping ToughAsTeal did get her red velvet cupcake on Monday, and that everyone had a wonderful Valentine's day celebrating their loved ones, nothing more to share.....so let's get rolling.  Anxious to hear how your week has gone, welcome any one new joining our weekly online chat so please say hello and let us know what's on your mind today.

Eileen

Good morning. My week went well. My lab requisition was suppose to be mailed to me just been waiting on those but so far never got them. I had to call nurse to get her to redo them for me now that i am back on zejula. 

ToughAsTeal

Happy Thursday😀 the cupcake is on hold until my digestion says so! Haha.  I know I am “off” when even my most favourite comfort foods are unappealing.  For this of us in southern Ontario, bracing for another dumping of snow, but pouring rain here now. How has the week been? 

Eileen

I also signed up for the March session for fear of reoccurance

Eileen

Question i am not sure if everyone is also having to do this. But when others comment i am noticing i have to refresh to see their comments is this normal or am i not doing something correctly.

Fearless

@Eileen, welcome back.  Good that you're giving Zejula another go. As for the lab requisitions, I've found from past experience it's those little administrative things you have to stay on top of.  I don't know how many times I was expecting something and , since no one else follows up for you, had to make the calls myself.  Just a minor inconvenience in the grand scheme of things. 

@ToughAsTeal at least you have the cupcake to look forward to. Hope it's not a long wait.  Yes, miserable here in SE Ontario....drizzling so everything looks dirty.  I hear we're to get freezing rain later and then a big dump of snow.  Of course not looking forward to it but at least it's mild here.  Almost spring like temps.  I expect it's nature way of teasing us.  

Fearless

@Eileen it's one of the issues with this platform that we've got on the list for the techies to look at and hopefully find a fix.  So no, not you.  I'm not sure if you get this but for me, when a new comment is posted I get a little black box notification on the lower left of my screen.  If I'm fast enough I can pull up the comment by clicking on the the box. But it only lasts a second before it disappears so I rely more on refreshing to make sure I'm not missing something.  Hope it doesn't frustrate you too much.