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Fearless

@Sylviequebecbc
Damn....sorry to hear about that. I can imagine that being on your mind until your next scan. Let's hope what was there last time is, at least, reasonably stable.  Any idea why surgery versus chemo ?  How are you feeling other than obviously worried..and I expect disappointed.  Anything we can do to help?

Fearless

@ToughAsTeal
Good news on the Covid result.  I have to admit hearing the nurse neglected to book your next visit made me giggle.  I can't help think about how many times this past year the ball has been dropped and were it not my being so process driven that I double check or confirm everything I would have had a few things really get backlogged or missed entirely. I can't blame anyone though.  When I do into clinic it seems busier than ever, and that's with so many appointments now telephone only. And everyone short staffed with double the work to cover.  Yesterday I arrived for chemo and the waiting area unusually full. Yet, when I went in only a quarter of the chairs were occupied. Realized quickly there were only three nurses on duty as opposed to the usual half dozen or more. Then had to wait while pharmacy mixed up my Avastin...they're understaffed so behind.

Taita

@Fearless - Vol Mod
Yes, things are still going well for me.  Having trouble keeping the blood pressure in check from the meds so just upped my Norvasc again again. 

Had a bit of a rough week this week. It is a bit of a story........Decided to drive to Toronto on Sunday instead of Monday morning because of the weather.  Blood work on Monday at 12:30 and treatment Tuesday at 9:30. Well "Snowmagedon" happened and suffice to say I couldn't drive to the hospital so I took the TTC.  Walked through two feet of snow on the sidewalk, flagged down the one bus operating and then it couldn't get into the station.  Finally got in and went down to the subway and the lines are shut down, snow on the tracks.  Buses are stuck all over the roads (didn't want to be stuck on those) no cabs. Uber was $65 and I booked it, but they kept saying looking for a driver.  So I waited standing in the subway for three hours hoping it will be up and running soon (I find a small cubby away from everyone and cross my fingers) because there really is no other option.  I am missing my window as blood work closes at 3PM.  Got some nice TTC staff who answered all my questions and I finally decided I would stand in the middle of Yonge Street and wave at whatever came by if I had to. Well someone was looking out for me.  I was still waiting for the Uber for over an hour and nothing and along came a cab out of no where. I flagged him and the lovely gentleman got me there on time!!  So 10 min for bloodwork because no one was there and now to get back!  I figured I was better on the northbound side of University (the cab companies were not answering their phones) and just wait at the corner. So I waited and after about 15 min, again out of nowhere a cab was coming up a side street.  I flagged him down and he was a very skilled driver and we made it!!! So after my five hour adventure (and NO wine the day before treatment) I got my treatment on Tuesday and drove home no problem! Sometimes you just have to have faith that the universe will take pity on you   Today I feel great!!

Fearless

@Taita there must be an angel sitting on your shoulder gal !  And you get this weeks medal for patience and persistence.  Halfway through your description of trying to get there for your blood work I couldn't help but picture myself as you, crumpled into a big crying heap in the middle of the subway station.  Some how, you were just meant to get there.

ToughAsTeal

@Taita that is an awesome story of resilience!  

ToughAsTeal

@Sylviequebecbc i would love to see a picture if your dog too for my pet therapy!  

Fearless

Question for you gals. In the course of your treatments, has anyone experienced the sudden emergence of persistent headaches?  Headaches never seem to be mentioned in the lists of side effects for the various treatments.  But this time around I'm finding I get them starting around 3am almost every day now.  But I"m also experiencing heavy duty post nasal drip, which I know is a possible side effect of Caelyx.  Perhaps they're sinus headaches?  I have mentioned to my oncologist and her response was...perhaps we should do an MRI on your head. 

Sylviequebecbc

@Taita oh my word!!!! What an ordeal! We also got more snow this year, but living in a small town makes things easier in a way: you go out or stay home! No buses here, if you can't drive or walk, well, plans change. I was just happy I didn't have to drive to Calgary (5 hours) during our storm! Cross my fingers that the roads will be ok in late February!

@Fearless - Vol Mod they told me my CA will never go away, that I will have surgery then chemo every few years (2-4) because of the nature of my cancer. I already had 3 surgeries, last one Aug  2019, and my last chemo ended abruptly when I reacted to the Carboplatin on the 8th treatment. They keep saying they will keep an eye on me, so far the cancer is staying in my abdomen (cross fingers it will stay there), but I know this could change. 

Taita

@Fearless - Vol Mod
I do believe I was meant to get there.  I am very fortunate, I drive myself in and home.  I kind of like a bit of solitude sometimes.  My poor husband was at home crying because he couldn't do anything.  My daughters offered to drive in from Kitchener to come get me.  It was sweet, but talk about stress worried about them on the road. .  

@Sylviequebecbc
CT Scans should come with a warning label, "it may be nothing, but in the meantime we are going to increase your stress levels"! Crossing my fingers things have stabilized. 

Rad

Hi ladies, had my 4 months check up yesterday CA 125 went from 9.40 to 11,should  I be concerned, sorry at work

Sylviequebecbc

@ToughAsTeal here is Odin! 

Taita

@Fearless - Vol Mod
I have been having headaches like crazy and mostly in the middle of the night.  I think it is sinus but my OC says it my BP being high again.  I very, very rarely ever have had a headache in my life so this is weird.  I am on Avastin too and it can cause sinus issues and headaches so who knows.   My clinical nurse suggested a brain MRI.  We will see if the increased BP meds take them away. I did get a nasal spray from my family doctor to help with the sinuses.  It seems to help a bit but the headaches are still there.

Sylviequebecbc

@Fearless - Vol Mod sorry to hear that. I have not been on Caelyx for a while, and only had one treatment on it because yes, I had an anaphalctoid reaction to that from the get go....but I have had sinus infections in the past, and yes, they brought on headaches. Hope this resolves soon for you. 

ToughAsTeal

@Sylviequebecbc oh what a happy dog to be in the snow and what incredible view! 

@Fearless - Vol Mod yes for me some sinus headaches, and annoying drip.  Always a box of kleenex nearby! Soooo annoying.  I did take a migraine pill, it was a day or so before storm. And headache was gone in 20 min. So i just dont know anymore.  Was so concerned it was covid. 

Fearless

@Sylviequebecbc
we are in the same boat. I too have recurrent OVC. I"ll never be cured long term and the odds on even getting to NED for a short span are pretty well non-existent  Like you, it's still contained to my abdomen. No metastasis elsewhere yet (knock on wood). Surgery not a treatment option though.  My cancer formation is long striations of mega tiny cells, not distinct tumors so they can't remove it. Chemo, immunotherapies, PARPs are about all of my options but have worked so far.  I just focus now on living the best life ever with this disease, not worrying about being cured.  And I"m in year six of treatment so it works for me so far.

@Taita if there's something I really miss right now it's driving my car. I too enjoy those moments of solitude. Especially in the summer on a nice day with the top down and the "tunes" blaring. But fatigue hits me hard and without warning so I worry about caught out while driving.  Fortunately my husband is so accommodating driving " Miss Daisy" everywhere but hopeful I can get this fatigue in check before the nice weather hits again.

Fearless

@Rad great you could check in today. And, short of the usual referal back to your oncologist for an answer, I'll tell you what they'll say...NO.  CA's are volatile. They bounce around.  You're still in the NED zone. A couple of points mean nothing, up or down. It's only when a CA starts to climb, over time, in big leaps (like doubling each time) that there's a possibility more investigation might be warranted. Trust me, if your oncologist isn't concerned you need not be.  

Sylviequebecbc

Thank you ladies for all your kind words! Have a wonderful week, stay strong! 
Til next week! 

Taita

Have a great week everyone!  Stay safe and stay warm!!

Fearless

@tailta, thanks for the thoughts on the headaches. Seems something we share. We can compare brain scans LOL.  Seriously, my BP has been a bit problematic since the Avastin too and just started some BP meds.  We'll see if that helps and if not, the sinus thing sounds like the culprit to me. Think I"ll go buy some Fluonase and see if that helps.

ToughAsTeal

@Rad. I cant help but always be on alert watching my CA125 levels..yet how many times I have been told to not focus only on that.. easier said than done.  In past, mine would go up a little, maybe go down alittle... and was told that if if started to go up in like 10s, 20s etc PLUS i was having symptoms then it would be time to scan... which was how it went for me. But, and broken record, CA125 can change, rise, for so many reasons.  I dont listen to my own voice of reason. It is hard. 

Rad

Thanks @ToughAsTeal and a great weekend ladies 

Fearless

Ladies, that time again to say goodbye.

Great to have you back @Sylviequebecbc Love Odin. He's a sweetie and must be loving the snow out your way. Hoping you get a good solid treatment plan if it's needed, one that gives you some longer term relief.

@Taila thanks for sharing your travel experience.  We had no where to go on Monday so just hunkered down here at the farm and didn't venture out.  Hope you're test results are all positive and show the trial continuing to have the effects intended.

@ToughAsTeal good luck with restart of treatment now that the Covid scare is over. Hmmm, does seem the headaches may be a theme with those of us on Avastin.  

@Rad so glad you were able to interrupt work for a few minutes to check in with us.  We're here for you anytime, but you know that.  And worrying about an increase in CA score, no matter how little, is normal. Fear of recurrence is top on the anxiety level for survivors so we all look for every thing that might signal something amiss. 

Thanks everyone for being with us today.  Until next week....ciao for now ladies. 

gaylestorm

good evening everyone.  I have been online keeping up but emotionally have not been in a good place.  I did feel joy for some of the news I've read.  A trip to italy!  good scans and bloodwork.  All the good memories of italy and travel!  Ive just finished 6 cycles of my second round of chemo. @Fearless - Vol Mod I have woken up at night with severe nasal congestion   Lasts for a bit at night then nothing till the next night.   weird.  I'm amazed that you can drive   For me getting out of bed is a huge struggle.  Even talking is just too much sometimes.  this is an invisible disease. we can look and sound normal but ....   For those friends and family not trained in health care, hard for them to understand.  @Rad. I'm sorry your ca counts are going up, slowly. Its impossible not to be concerned   Find whatever brings you joy. Last year, my father died and left me extra funds and i have spent that on holidays with my kids and grandchildren and numerous bikes and scooters wagons, trampoline etc.  I would never have spent money, but time and energy with them, but when the energies not there I have had to be resourceful, and what child doesn't like a gift. Thats it for now. Enjoy your night. Love the puppies. Ladies your strength is truly amazing.  

Fearless

THURSDAY JANUARY 27 AND ANOTHER TEAL THURSDAY IS UPON US.  WELCOME.

Did anyone attend the Speaker Series session last night?  If so, how was it? Any good takeaways to share with those of us who didn't dial in?  And if you didn't .....was the topic not of interest?  The time not work for you?  Prefer to access the video at your own convenience?  I had intended to dial in, specifically for Q&A and to ask about Avastin and it's use...specifically the 22 treatment maximum I keep hearing...why and what happens after that if the drug is working. But wasn't feeling up to it last night...these headaches are driving me crazy.

Reminders for this week....just that the February schedule for the Teal Teas is posted along with the links to register to participate.  Other than that nothing critical to share today.  So without further ado, let's get started. 

WELCOME to those who've joined us today.....say hello....let us know what's on your mind.  

ToughAsTeal

Happy Thursday. Ended up in chemo on Tuesday. CA125 jumped up again.  Caelyx reduced to 75% because of side effects. Also prescribed Betaderm .05% steroid cream, 2x/day for 7 days..hands and feet.  Feet already starting to hurt, reminiscent of how things developed last month.  Very tired but still managed to get a big pork roast into slow cooker last night for pulled pork for dinner tonight. 

I didnt do webinar (completely forgot i guess because chemo was on my mind).  Yes if posted i will want to view it too. 

Any minor relief from your headaches? 

Tinazzie

A warm Hello – from a bitterly cold afternoon here on the east coast.  How is everyone doing this week?

@Rad I see your message from last week about a slight increase in CA-125 .  I wanted to say that I had almost the exact same difference in my numbers following my 1-year post treatment exam in September.  I was told it was normal and no cause for concern.  But it did bother me a bit, because my CA-125 had always been a good marker.  I had my 4-month check up a couple weeks ago, but with no blood-work this time, so not sure what the number is now.    

Tinazzie

@ToughAsTeal, sorry to hear about the side effects and rise in numbers.  Great to see you hanging in there despite all that - pork roast in the slow cooker sounds perfect!

Fearless

@ToughAsTeal
@Tinazzie
Great to have you both here today. Tinazzie, it's been awhile. Glad to see you're keeping well.

ToughAsTeal I fully expect my oncologist to reduce the dose of my chemo too. Still very fortunate that I've had no problems with the hand /foot rashes and blistering so far. But these headaches are really a problem.  Wake me up at 3am like clock work and then takes the entire morning along with Tylenol to get rid of them. In the meantime can't function at all.  Have also developed an intense sore throat since my last Avastin treatment last week.  

I too have experienced an uptick in my CA125. Since starting treatment back early December it's dropped by thousands each time. Started at 9500 and now down to 2400, but the 2400 is up from 2200 two weeks ago. In the grand scheme of things it doesn't seem like much but like you, Tinazzie, the CA has always been a pretty accurate marker for me so can't help be concerned that perhaps the efficacy of the Caelyx/Avastin is diminishing. Oh well, all will be answered next week. Just had my first CT since I started treatment.  An echo on Monday, More bloodwork and another CA on Monday. Then my oncologist for results on Tuesday.  Wednesday will be the start of cycle 4 so we'll see what she has to say.  

Tinazzie

@Fearless - Vol Mod, I did watch the speaker series yesterday.  I have never interacted with a oncology pharmacist through my treatments - for both ovarian and breast cancers, so I was curious to find out more about the role they play.  I learned that the role is different across the board - it all depends on the cancer center, the province and the respective treatments.  Sometimes there is more of a direct interaction and at the others, the pharmacist is still there but working in the background.  Sounds they are a good resource to discuss things like side effects and drug interactions.
I always learn something new at these sessions!

Fearless

@Tinazzie
it sounds like a  good session and glad you got value from it.  Yes, the models for everything seem to differ Province to Province and even region to region within a province.  At my cancer centre the pharmacy team has a foot in both camps. They basically work behind the scenes but ocassionally as meds are changed they will come around to discussi them with you. I have little doubt that if I wanted a meeting to consult with one of them about the bigger picture or side effects they'd be quite accommodating.  I've found there's just about nothing you can't get if you just ask for it.