TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)

CountryLiving

@MadBel Have you connected to U of Calgary excel program which is a virtual exercise program for people with cancer? I participated and found it to be very helpful in getting my strength and fitness back. Great program. 

MadBel

@CountryLiving yes I did. It was good. 

Fearless

Hello ladies....here I am only 1.5 hrs late. I do apologize for not being here to greet you and be a proper host. I found myself caught in a long line up in Kingston shopping and couldn't remember my user name or password to get online on my iPhone.   

@CountryLiving thank you for joining in today and providing some company for @MadBel.  What a shame, her first time with us and it was an unusually quite chat.  @MadBel we usually have more gals...generally anywhere from 4 or 5 to upto 15 some days.  Many sign in during the course of the chat timeframe so not all there at the very beginning...and some sign out early  as well. But everyone generally has something of value to share.....a good joke or two.....and it's a great way to form some ongoing friendships as you find some of our regulars in your own locale.   @MadBel if there was anything specific you had wanted to raise today, please don't hesitate to reach out to me in private message or start a Discussion Thread for the topic of interest or concern.  

I'll be back in my "host" seat next week.  Hope to have you both back with us. 

Fearless

THURSDAY MAY 19 AND TIME FOR OUR WEEKLY LIVE ONLINE CHAT.  

Sorry again I was not here last week, but "stuff" happens, eh?  Hopefully you've all been fairing well and if not, you're here to lighten up the day or reach out and let us know where we can help. 

I've just updated the events reminders in TEAL BY THE MONTH, and I'll keep adding as events for June and forward are brought to my attention. Hope this section is helpful.  There have been some really valuable sessions this month, many of which are recorded and posted on the OCC site for those unable to attend.  You can find them on the OCC site where all the videos are logged.  

And hopefully you've noticed I have posted for volunteers to help me with OVdialogue and supporting our community.  The role of PEER SUPPORT VOLUNTEER is not onerous. But it does require some time commitment, empathy for your Sisters, and the desire to 'give back' to a community that has likely been there for you when you were looking for support.  I'm at a  point where the work I do as Moderator for OVdialogue is becoming far too much for me and I may have to make a choice soon if I don't see some relief ahead. I'm happy to have a 'no commitment' conversation if you're interested in learning more about the role. 

And with all of that said, we are approaching the 1pm mark so welcome to anyone joining us today.  Let's get started by saying hello.........

BellaDonna1959

May 19th - hello - am I in?  I'm not sure I'm doing this right. Anyway, did you feel better getting your prognosis or before you got it?  I know my stats are grim, but I've previously asked them to not discuss my prognosis. Now, I'm wanting more information but am afraid I'll just get more down and depressed about the whole thing. 

Fearless

@BellaDonna1959 you are in the online chat.  You and I are the first today.  Just use the Comments boxes to type in your posts, questions, comments or anything you want to share.  The gals here join at various times within the hour so hopefully we'll have a few more shortly.

mjmck21

Hi everyone, I have a positive update I wanted to share today. My recent lab results show a decrease in CA 125 to from 220 to 130 between my fourth and fifth treatments and it has consistently declined since Dec from over 22,000 (thats not an error, I thought I was reading it incorrectly). I had carbo/taxol on Thursday, working through the side effects this week and they want me to do at least one more on June 3. Surgery eliminated all visible tumors so its the microscopic cells they are concerned about now which as stage four were spread extensively throughout my body. But my oncologist is very pleased at this point. The genetics test came back with no indication of hereditary BRCA 1,2 but  they are still waiting on the results of the tumor. The conversation is leaning towards PARP I for maintenance but it looks more likely that it will be Nirabarib rather than Olaparib or some other combo. Still its all up in the air. I am trying to take more control of what I can in terms of recovery. Nutrition, mental health, physical  health and understanding all the medical science behind it all esp targeted therapies and how the gene testing helps make those treatment decisions. I have a lot of sarcopenia, and my overall physical health is quite poor. I am concerned about bone health, and preserving the use of my kidney, liver, heart etc.  What kind of nutritional supplements I should be using with chemo and post. I thought there were more supports to help with this (I am at Juravinski in Hamilton) but things have been slow. I have used OCC webinars quite a bit to become more informed but it looks like there are more of these supportive resources in the Western provinces. I am meeting with a social worker this week hopefully to get connected to more supports physical social and emotional supports. 

BellaDonna1959

mjmck21  That is very encouraging news!  I read 'How To Starve Cancer' by Jane Mclelland and I tend to follow her protocol after checking every supplement against every drug and chemo chemical I'm on.  It's a lot of work, but I feel that I need to do everything I can to make my body inhospitable to cancer.  Who knows if it's working - I'm still waiting for chemo 3 - surgery to be determined. Stage 3C spread everywhere in the peritoneum and on many organs in there.  Very discouraged and down today - nice to hear some good news. 

BellaDonna1959

I would love to hear some accounts of people who have outlived their date(s) given in their prognosis.  I feel like I need an infusion of good news today. 

BellaDonna1959

Am I able to check for answers here after the chat ends today?

Taita

@Fearless - Vol Mod quick update as I sit in Emerg waiting for blood work and a chest X-ray. Have been fighting what we think/thought is a viral infection for two weeks but it is getting worse and I truly feel awful.  Three weeks ago I was taken off the clinical trial for very very minimal progression but those are the rules. Short break and then two weeks ago started what was the other side of the trial, standard of care weekly Taxol and bi-weekly Avastin for my 4th line.  All good and while I am disappointed, I had almost 8 months of excellent quality of life on the trial. The treatments are going well but this infection has me flat on my butt!! So frustrating!! The silver lining in all of this is that I am going to Italy with my family for 3 weeks!! So, my normal upbeat self is on a bit of a hiatus till we get this infection under control.  

Fearless

@mjmck21
Wow Wow Wow. What great results and you're not even finished chemo yet.  But what amazing results so far.  Definitely happy dance time.  Yes, maintenance if that's the route they intend will likely be Zejula.  Olaparib targets BRCA 1 and 2 and is not usually effective unless you carry those genes.  Lots of discussions this year on Zejula so you can research some of them in preparation.  Sounds like you're doing all that is within your control to increase the odds of success too.  And yes, when it comes to alternative practices, like nutritional supplements etc. the West is far more advanced than we are in Ontario. That said, Juravinski should have a nutritional counsellor who can provide some guidance.  The social worker should be able to arrange you a referral there or your oncology team. 

Keep up the great work, and keep us posted on your progress.   

Bojenka

Congrats mjmck21 on the good news. I had tumour shrinkage on last CT scan as well. Very happy to hear the chemo is working.  Since it’s my second time around there was possibility I might be resistant to carbo/taxol but so far so good.

mjmck21

Thanks @BellaDonna1959 I will look that up! Its certainly complicated to figure out how to support treatment and recovery in this context. I feel like I need to throw out a lot of what I did and knew for health before my diagnosis. I'm glad my update is helpful. Its was everywhere six months ago lungs, liver, lymph nodes. I did not think I would make it to the xmas holidays but I have had a good response so far. I did not think that was possible. I also looked for those with my staging who were living years and I found several here   

mjmck21

Thanks everyone! It feels good to let you all know!

BellaDonna1959

I have my first post-chemo scan on June 10th - very nervous because 1) my CA-125 only went down 12% after chemo 1.  And 2)  They didn't see a lot of the tumors on my previous scans - they only saw them when they attempted debulking, which was terminated as soon as they saw all the spread.  So how can they know it's doing anything good  like shrinking - if they couldn't see a lot of it to start with?  I am trying to keep my hopes up, but it's a struggle sometimes. 

Fearless

@BellaDonna1959 I've been at this almost seven years now.  My original oncologist at PMH who was also my surgeon told me he didn't like to deal in prognosis that early in diagnosis since whatever he'd say was only based on old statistical data.  First actual prognosis I got was in December from my current medical oncologist and as  result they are putting me on anxiety meds since it's affecting my BP and my treatments are now getting aborted, which in turn causes even more anxiety.  She asked and I said yes...sure...tell me what I have ahead.  The answer was 3 mos to a year.  Well, that was end of November 6 months ago, so I"ve beaten that odd like I've beaten all the others these past six years.  And in the meantime, my scans show the two tumours shrinking by leaps and bounds so it looks like I'm going to beat the one year mark too.  If I were to go back, I should have said no. I was reasonably content taking my life in short bursts, celebrating each time we put a recurrence to bed, and relying on how I was actually feeling to live my life.  That prognosis was like attaching a time bomb to me so I've decided to ignore it and when I beat that one year mark, never say yes again.  

BellaDonna1959

Well, I am going for a walk in nature now.  I will check back later on.  Thanks for some upbeat news and it was nice to meet you all.  Hoping we all have a good news week.  

Bojenka

Fearless…wondering if you are still in treatment ? 

CountryLiving

@Fearless - Vol Mod I am sorry that your anxiety set in but it is understandable. As your PMH dr said the statistics are old and out dated. Keep that in mind and keep content in living like you did prior to those words.

Fearless

@BellaDonna1959
yes, this is all recorded like all posts on OVdialogue so you can go back and read the historical info any time.  

Now did you get a copy of By Your Side from OCC? If not, order one. They come soft copy (faster) and hard copy and you can order both.  The booklet does cover some of your questions, helps one from getting way ahead of themselves which does create unnecessary anxiety and is great as a tool for preparing for your oncology consults.  

As for your CA and your scans.  Don't look at the percentage your CA125 moves, only where it's moving....up (not good necessarily), down (like you) a very good sign your cancer may be responsive to treatment.  But do also remember that CA is very unreliable.  Readings can result from other things going on abdominally that have nothing to do with cancer...bowel inflammation etc.  And the score has little to no relationship to the size or amount of cancer. When I was diagnosed my CA was 900 and my primary tumour was the size of a huge grapefruit.  In December my CA was 7500 but neither of my two tumours were more than a few millimeters in size.  Think of the CA score as only a means for the doctor to decide if scans or more investigation might be warranted and that's seldom done based on one score, but on a trend of 2 or 3 or more scores.  Finally, I am the poster child for things not showing up on the CT.  Until I had an attempt to close a hernia last year, no one knew I have a mass of adhesions all through my abdomen, many of which are covered in dormant cancer cells.  None of it has ever shown up on my scans.  Apparently they are microscopic in size so the scan doesn't pick them up.  So are they reliable? Better than a CA 125 but nothing is perfect I"m afraid.

CountryLiving

@BellaDonna1959 I go to PMH like @Fearless - Vol Mod did and I asked for statistics and life expectancies. My Dr would not give them to me and I never have received any outcome numbers. Being a math person I was originally bothered by not having any statistics. However I realize now that was not important. My Dr stated that life outcomes are general and are based on all types of ovarian cancers. So that being said my Dr would not give me any numbers. 

 I have just had my check up with my Oncologist and I am happy to say that I am 2 years with no evidence of cancer.! I will still be followed closely for the rest of my life but am thrilled to be NED.

Fearless

@Taita I'm so sorry you've come off the trial and after feeling so great for so long you're faced with this viral thing.  Hopefully they can get to the bottom of it and get it addressed quickly.  I just went through my fourth aborted Avastin treatment yesterday...my BP is still out of control and if it not under 160 they won't do the treatment. Yesterday after a week of totally stable BP they took it before infusion and it was 180.  Looks like anxiety is getting the better of me so onto some anxiety meds to add to my collection.  In any event, be careful with your BP.  I'm also going back to meditating daily.  And for you, just stay focused on that wonderful trip you have ahead.  

Eileen

Good morning everyone.
Congrats @mjmck21 on the wonderful news.
@Taita i hope you get better soon.
@BellaDonna1959. I understand how fustrating you must feel. I was the same when i was told I am platinum resistant. I am stage 3c myself and it went to my upper abdoman and pericolic gutter. But now I am on another treatment Avastan and Caeylx. On the great news my CA 125 levels continue to go down my last blood work showed it reading 32. My mouth thrush got under control and the little bit of hand and foot syndrome has improved almost gone. They did lower my caeylx by 25 percent. They wanted my side effects to have a chance to go completely away rather than giving me a full dose and then having to stop it later. So we will see how it goes.

Fearless

This is for @mjmck21 and @Bojenka Looks like happy dance time is appropriate today

mjmck21

@Fearless - Vol Mod I'm always so grateful for your insights into prognosis, scans, CA 125. It really helped me to balance my expectations from diagnosis to where I am now. Thank you @CountryLiving for your insights as well. I too wondered why I wasn't given a prognosis in terms of 'time' but didn't request one after joining this forum. Thinking in terms of life outcomes rather than months or years is how I am going forward. 

mjmck21

Loving the Happy Dance !

Bojenka

Thank you Fearless…how are your puppies ?

Fearless

@Bojenka
Yes, still in treatment. I am on my fourth recurrence for which I'm receiving Caelyx and Avastin as the regimen.  Other than missing several Avastin treatments, it's been working well.  My CA is significantly declining month by month and the scans show one area stable and the other with shrinkage.  Best news is that the cancer that was there from the beginnig is still the only cancer sites I have.  It hasn't spread beyond since 2017.  If you are asking historiclaly, the first recurrence, 1.5 years after completing first line treatment was treated in a clinical trial which was intended to stablize my cancer but actually shrunk it 75% and kept me that way for almost two years before I began progressing again.  Next recurrence was treated with my 'go to' Carboplatin and Gemcitabine.  And then repeated when I recurred another six months later but the last one failed mid stream as I'd become platinum resistent. Hence the Caelyx/Avastin since early December and which is working just fine.  

mjmck21

@Taita hope they figure out the infection but amazing that you are going to Italy! I assumed I might never travel again due to covid and infections. ( I don't go anywhere at the moment or near anyone for fear of infections so I assumed overseas travel would be out of reach). As well as travel insurance. I just assumed I would not qualify. Any thoughts on how to navigate this would be welcome.