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Eileen

Wow yes your right time does fly by. Yes ok everyone hope your week goes good. If anyone wishes to reach me as well through texts i am here to to lend a ear. Bye everyone

jmbarrhaven

@Basj43, I was also operated out of the Shirley Greenberg Women's Health Centre in Ottawa.  I did see my surgeon before and after my surgery.  He was the one that told me I would have to have chemotherapy.  Once I started chemo, it was and still is a revolving door of oncologists.  Some are good, some not so much.  Little continuity.  Communication was and still is poor.  My status changed from Stage 2 to Stage 3a at one point, but no one thought it important to tell me.  I stubbled on the information months later.  I now diligently read the doctors comments on MyChart after each in-person or telephone visit.  I then goggle the terms that I don't understand.  I wish that someone had put me in touch with Ovarian Cancer Canada at the time that I was told I had ovarian cancer, not 9 months after.  I did recently tell one of the oncologists this and to her credit she thanked me for the recommendation and said she would try to rectify this.  

Taita

Happy Friday everyone!!  So sorry I couldn’t make the call again this week but I always read the chats. Just too much going on some days. So happy to hear your update @Fearless - Vol Mod    Sounds like lots going on for everyone. 

Quick update of good news!  Had my CT on Tuesday. I have now been on the Clinical Trial since September 16, 2021. My first CT in early November showed a 25% reduction overall with some increase in a few spots. Preliminary results of my one this week show stable disease and additional minor shrinking and no new locations!! 💃💃💃. Overall doing really well. A few side effects that are being managed. The anxiety leading up to the CT scans is something else. Felt like I held my breath for days!  Now getting my 4th Covid shot today so I will probably sleep away Saturday. 😁. Hope everyone has a great weekend! ❤️

Fearless

HELLO TO EVERYONE ...IT'S THURSDAY MARCH 3 (WOW, March already!) and time for our weekly online chat.

Isn't it great to think we're getting closer to the spring? Although with global warming, I think we went almost straight into summer last year. I sure wouldn't complain about that.  I'm saying this as I look out my office window at a blanket of snow; the first fall two days ago and then again yesterday.  It looks so pretty against a backdrop of blue sky and fluffy white clouds.  

Has everyone else been following the news on the Ukraine?  What those people are going through sure does put my own complaints about life in perspective.  We are so lucky to live in this country.   Yet even Canada is being touched by all the unrest here and abroad.  We had intended to let our huge vegetable gardens go fallow again this year but last night decided we will plant.  Notwithstanding expected huge increases in cost of fresh produce, I think there will be lots of people out there we could share our bounty with this summer as the cost of living continues to increase.  We always plant far more than we can use ourselves so we'll go back to allowing our 'neighbors" to drop by and harvest whatever they might need.  And anything beyond that can go to our local food bank.  Guess I'm setting myself up for a more active summer than I had expected.....let's hope my health holds out but so far so good.    

Teal Teas are posted for this month as are the Speaker sessions for March and April.  Links for more information and to register to participate can be found on the OCC website under Local Events.  

@Eileen thanks for your note after last weeks meeting and offer to be available on private message to any members who might need some support or just want to chat.

@jmbarrhaven thanks for the insights into your experience, much of which is shared by many of our members.  Let's hope as the Covid impacts to our health care system begin to return to some normalcy, so will staffing and support increase. In the meantime you are doing all the right things to ensure you are informed and knowledgeable and able to advocate for yourself.  And yes, it's a big challenge to get awareness of OCC and what it offers to all of us at the outset of diagnosis.  I was a year and half into this disease before I connected with OCC the first time so I hear you.

@Taita great to hear from you even when you can't join us. So wonderful to hear how well you continue to respond to the clinical trial you're on. I sometimes think that success on these trials is part physiological and part attitude. I'm sure that positivity we see in you time and time again is playing some part in how well you're faring.  And if I recall, don't you have Italy to look forward to very soon?

Well ladies, 1PM and time to chat so whoever is out there, say hello and let us know 'waz up'........

Taita

@Fearless - Vol Mod Yes, we have Italy to look forward to in 16 short weeks (crossing fingers all goes well)!  In the meantime I got my 4th Covid shot on Friday and as usual, put me in bed for two days!  Went for my blood work on Monday and felt soooo tired which is not like me.  They were thinking of postponing my treatment until my Trial nurse suggested maybe I was dehydrated which I didn't realize and after a litre of Saline Monday at the hospital I felt like a new woman. LOL!  Treatment went ahead as planned on Tuesday. All good! We have to be are own advocates and it is great when your team are right there with you!

CountryLiving

Hello Ladies... been awhile since I have been on however I have read all your news. 

ToughAsTeal

Hi all,
my cousins are in Lviv and Ternopil, and surrounding areas. One cousin and her family have left for poland. I was sent a few pictures but no more word for past few days. My cousins sons and husbands will he conscripted, if not already. I know they are afraid. 

I have had hard week with post chemo, digestive type pains. Severe enough that I reached for the percocet. Things finally settling a bit today.  

I may have missed a covid conversation... sorry if i am re-asking. My dr told me no need for a 4th booster. Any of you? 

Fearless

Hi @Taita, I'll be looking forward to some pictures of your trip.  Wow, those 16 weeks will pass quickly, lucky you.  
Getting my 4th vaccine on Monday, just before cycle 5 starts on Wednesday (or maybe it's 6...must look up when I started this regimen).  Hopefully no effects. I sailed through the first 3 with out even a sore arm.  I do have my blood work to do right after though but doubt it will have that immediate an impact to change my results.  

I sure know the value of hydration and what that really means.  Three months ago I was admitted to KGH with kidneys that were working at 25% and headed to failure.  Guess what.....hydration the issue.  I was drinking at least 3 bottles of water daily ,plus one at night and then added fluids with teas, soups, the odd pop and assumed I was doing a good job. Not so good when I had to be hooked to a constant saline drip for 2.5 days to get the level to borderline acceptable.  Now I drink at least 5 bottles of water daily, one at night, at least 2 full glasses of cranberry juice and whatever else liquid I intake and this last blood draw finally put me in mid-range normal.  I was just so fortunate the chemo nurse noticed the gradual decline in my Creatinine level over a three month period to look more closely and realize I was in danger.  And trust me...no symptoms at all, except when I look back I now realize the fatigue I had around that time was abnormal.  I do swear now that upping hydration an be the answer to lots our problems.

Fearless

Hi @CountryLiving
Great to have you with us today.  Yes, the advantage of OVdialogue is that our discussions, either regular or those in these online chats, are recorded and available to review at one's leisure if they can't participate at the time or are looking for discussions on topics that might be top of mind for them. So happy to hear you do check us out regularly.

Taita

@ToughAsTeal
So sorry to hear about your family.  These are such difficult times.  Hope everyone gets out safely and those that stay behind are okay. Regarding the 4th shot, I was encouraged to get it.  It just had to be at least 2 days after my treatment and 2 days before my next.  As I have treatment every 7 days I had a small window.  Everyone is different and while it wasn't mandatory I decided with the way Ontario is going with lifting the vaccine passports and soon the mask mandates I would get it.  Hope you continue to feel better each day! 

Taita

@Fearless - Vol Mod
I also found out that immunotherapy requires even more water in your system so to your point, more is always better just in case! The things we learn on this journey...........

Fearless

Oh dear, @ToughAsTeal, I am so sorry to hear you have family over there.  Half my background is Polish and Lithuanian but no idea what relatives, if any, may be over in the general area or ended  up in the Ukraine or even Russia.  To my knowledge my line all immigrated to Canada and the US many many years ago.

It must be so unsettling for you and your family hearing all the news, and the worry when lines of direct communication are broken, hopefully only temporarily. My thoughts and prayers go out to your family over there, along with the rest of the Ukrainian population, for health and safety.  I only wish there was more we could do at the individual level beyond prayers and donations.  

My understanding on the 4th dose/booster is that it is not necessary. The 3 should provide enough immunity that should you get Covid any symptoms are most likely to be mild. The 4th dose just an added precaution for those of us in active treatment.  Never one to miss a gift horse, since I qualified for the 4th based on time since the 3rd and being in active chemo I just went ahead and booked it.  My husband goes back to work at the winery this week and since he's in daily contact with tourists and customers from who knows where I figured having an extra dose wouldn't hurt in case he gets Covid.  So many asymptomatic cases these days he could bring it home with out even realizing it.  

So sorry though you've hit another rough patch with your chemo. Uggg....digestive.  I find I can handle most things but when it hits my stomach or colon that' the worst for me. I assume your oncologist knows and all you can do is grin and bear it until it subsides?  I do keep a handy little supply of hydromorphone beside my bed just in case I feel I need something more than the usual remedies.  So far I've only used a few for a Gout attack.  I hope the discomfort goes away soon. 

ToughAsTeal

Here is a positive. My next scan will be in April. Have been told that drinking the "Ready Ct" drink is no longer required! Oooohhh big thanks as the aftermath for 12 hours was awful!  

That is a good point re 4th booster and everyone else returning to a sense of normal. I will ask again. Or ask my family dr. 

Fearless

@Taita thanks for that tidbit.  No wonder the amount of fluid I was intaking  wasn't sufficient....Avastin is immunotherapy and is new to me in treatment as of early December. Sure would have been nice had someone suggested I might want to up my fluid intake.  

Eileen

Good morning everyone.  Just reading everyone post trying to catch up.  @ToughAsTeal my prayers are with your family.  Reading about the dehydration. Wow i drink 4 bottles of water daily use to think it was enough.
For myself i just had my ct their on Tues. And my mammogram. I went in to see my family Dr for a follow up and asked him about my ct as I dont see my oncologist till next week. The mammogram was fine as for my ct it shows that my cancer hasnt spread to other organs or areas but the little tumors that reoccured has gotten slightly larger. Biggest one is 2.3 cm. Which last ct on dec  after my last chemo in nov. Showed the biggest one was 6mm. So 4 times the size now. So it tells me that Zejula isn't working. Looks like i will be starting the Avastan i guess. My biggest concern is that just Avastan alone isn't enough. The size of my big one now is basically the same size as the first tumors in my perrectal gutter  when they found my ov last yr.

Fearless

Hey @ToughAsTeal I had had to question my last CT when they just went straight to IV and dye without my having to drink the contrast fluid.  I really became a pest asking "why" the change in protocol but am still waiting for someone to explain it to me.  If I ever find out I'll let you know.  But yes they've discontinued the need for the "drink" for me as well.  Not complaining mind you. 

Taita

I hear you @Fearless - Vol Mod
I wasn't told either, funny how we find things out along the way. The other thing I was told by my nurse about 4 months into the weekly treatments was nothing cold during treatment (ie no ice water) or for 24 hours after.  After they told me I checked and sure enough it was the case all along, just no one told me!  Have no idea the reason all I know is no ice cream for me that day!

Taita

@ToughAsTeal
@Fearless - Vol Mod
I had my last CT a couple of weeks ago and I still have to drink the contrast. Weird!  My next one is April 20th, maybe it will have changed at PMH by then. Sure wouldn't break my heart not to have to do it!

Fearless

@Taita very strange.  For me, when on Olaparib it was no grapefruit and no seville oranges or anything made with them. I'd heard about the grapefruit before....but Seville oranges? I had to look that up only to find they're spanish and used to make marmalade.  Any other oranges were on the OK list.  But it did give me cause now to always ask, with any treatment, if there are any special foods, etc. that I need to be aware of....along with my standing ask about whether or not I can still have my pre-dinner martini LOL. 

ToughAsTeal

Alrighty... i need to drink way more water.  Wishing you all a good week, and, if you have good energy thoughts to spare please send them through the "cloud" to all who are impacted by current events.  

слава україні

(Slava Ukraini)

Glory to Ukraine. 🇺🇦 

Fearless

@Eileen so sorry to hear the Zejula isn't working.  Like all of our drugs, not all of us respond to them.  I assume your oncologist has confirmed that and that Avastin is your option?  I'm not sure where you are (I think you told me but my brain matter isn't what it used to be) but in Ontario you can not have Avastin alone. The treatment has to be in combination with a chemo drug like Carboplatin, Caelyx, Gemcitabine etc.  

Eileen

I live in bc. She only mentioned about avastan @Fearless - Vol Mod when i saw her 3 weeks ago. But i did see mention about that in some research i did. Been having some pain and bloating back tg no acities or fluid.

ToughAsTeal

@Eileen i am caelyx+avastin

Eileen

Yes i watched a old semenar about reoccurance and platinum resistant where the dr from vancouver mentioned amd showed charts. That was back few yrs ago. He said chances of a parp inhibiltor working was like 23 percent

Fearless

@Taita strangely PMH seem slow to change protocols so you may be stuck with the "drink" awhile longer.  Is yours still that chalky whitesh drink?  I know when I had my first CT here in Kingston I was shocked to get the huge cup but filled with a cold clear tasteless solution.  When I asked about it they told me they had started with it versus the old chalky one for some time.  Back to PMH a few months later for another CT and got the chalk again. You'd think theyd' all be using the same protocols....or maybe PMH overbought the chalk and had more to use up than Kingston LOL.  

Eileen

I never had to drink any chalk with any of my contrast ct.

Eileen

My oncologist wanted to wait till she saw my ct and recheck my ca125 levels as she didnt want to give up on zejula after just 1 month. This way she will have a better idea she mentioned. But i am defenetily going to ask her.

Taita

@Fearless - Vol Mod
Luckily I have only ever had the clear liquid.  Will let everyone know what April brings.

Eileen

I know being that my tumors reoccured just as i finished chemo. I think mainly because of my delays due to my blood levels and reduction in the chemo. But i know my oncologist didnt want me to retry any chemo for 6 months at least the carboplatin i think i did respond really well until they stsrted lowering dosage and my chemo got delayed by 5 weeks after my last 7th chemo. Thats when my levels started going back up my 5th week after my 7th chemo. Then of course my oncologist did let me have chemo but just lowered the abraxane that time but the carboplatin was still at a lower dose too.

Fearless

@Eileen you are correct. Once we become platinum resistent (I am as well now) there is less available to us and what there is has lower rates of responsiveness if you look at the statisics. But over my six years in treatment, half platinum sensitive and half resistent I've learned to ignore the statistics. They are just normalized data and don't reflect the anomalies that occur with each of us.  I was on a clinical trial, while still platinum resistant, for Olaparib the sister drug of Zejula. But not being BRCA positive I was given very low odds that there would be any response to the drug and if there was it would likely be for a max of 3 months. Guess what. My tumors didn't stabilize, they actually shrank by 75% which wasn't supposed to happen at all, and once the shrinking stopped the drug kept me stable at that level for another year and half. So much for statistics eh.  I'm now on Caelyx/Avastin since early December.  Less than 30% actually respond to treatment so say the stats so I wasn't given much hope.  But here I am again with my cancer shrinking again.  I'm not one to encourage false hope but with cancer, it's so individual, that I strongly believe there is always hope....some new development or even a little miracle out there.  It's kept me going into six years of treatment when the "statistics" gave me a prognosis of a maximum of three years.  So hang in gal.