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Hi everyone - I hope you are enjoying a wonderful day, enjoying some sunshine, the amazing fall weather and colours, and all of the things that bring joy into your lives! 

Looking forward to having you join the Teal Thursday chats for October by posting below. If you have any questions please let me know. 

All the best!

Hello all,

It's a sunny day here by Lake Erie. We live in a cottage area so this is the time of year where it gets very quiet. Not a bad thing 😁.  I saw this today and thought of all of you. Please be proud of yourselves for all you have endured. You are warriors ❤️ Anyone online to connect today?

Good afternoon@Alwayslearning and everyone.  It is a rainy day here in my part of Vancouver Island.  It was desperately needed and I was so ready for fall!  A sweet story from yesterday.  I was having a bad day.  Throwing a pity party for myself because I got put on blood pressure medication.  Sitting by myself thinking old age is a beotch.  Then I got a text from my Granddaughter that turned my whole day around.  My 11 year old great grandson's teacher had sent her an email with the following attachments.

@JoanEG … well THAT clearly says it all (I'm typing this with tears in my eyes by the way). ❤️

#Supportandencouragement

@Alwayslearning yes it had me crying like a baby.  He is an amazing young man who always "clears the clouds from my head" and fills my heart with love and gratitude.

Very touching Joan. What a lovely tribute to you!

@LeslieA I have a special bond with this kid.  

@JoanEG I was thinking you should print and frame it so you can put it in your house and remind yourself that not all hero's wear capes 🩵❤️

That's a beautiful story  Joan ❤️

@sherrygroenendyk it is isn't it.  Definitely heart warming.

@JoanEG so sweet, you are blessed 🙏🏻

@Meinvan thank you, I truly am!

I know it's only Monday but had my appt with my oncologist today.  She said we will repeat a ct scan in 3 months, so January just to monitor the lung nodules that have been present since first scan and so far look stable…she said one more stable scan then will go to every 6 months I think to monitor them.  She also said she is one that does like to monitor labs and ca125 every 3 months too.  She talked about getting me the info for HRD testing as we have to do it privately usually thru myriad, in the states I think.  So waiting to find out more on that.  I found out I did have 1 genetic mutation, but there is no real drug targeted to that one.  It's NF1, if anyone else had heard about it.  She did offer me to do Niraparib, so now I need to decide on that….its such a nerve wracking decision, I really worry about the side effects, but I also know we will be monitored closely, she said weekly labs at first and we can start at a middle dose and adjust dose if we need too, or go off completely if it's causing too many issues.  She has given me some time to decide.  What are the side effects most people have had from Niraparib?  Did side effects last long?  How long have you gone without recurrence?  TIA my teal sisters🩵🙏🏻

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Hello @Meinvan 

I had my appt yesterday as well. I have gotten funding to start niraparib - PMH is sending it to me tomorrow so I will start them Wednesday or Thursday.  I will let you know about my side effects.  I am being monitored every Friday for the first while (I have to look at my notes for how long)  i believe it's best to start on Zejula within 8-12 weeks post last chemo? I also had some input on HRD testing - maybe Myriad were just very busy and it's not the norm but my results took 2 and a half months to get.  But maybe that wouldn't be a problem for you if you started on the Zejula then you're covered if you are positive - obviously just my thoughts not medical advice.  From what I was told yesterday by my PA, the side effects were not as scary as what I've read on the internet - but she said people  reacts differently.   I will be following your thread as I'm interested in side effects as well.  I wish you clarity while making your decision - it's so complicated but I got such valuable info from the Teal ladies. 

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@pepperbee thanks. What dose of niraparib are you starting on?  Can I ask what the cost of myriad testing was?  My dr said about $2k?  I'm hoping to go away on a 4 day trip with my hubby and son soon, once my son gets his passport….delayed due to needing new birth certificate and postal strike….so hoping it's before I start on PARP.  I hope I can make this happen…..let me know how you do on the PARP.  You can always dm me.  🙏🏻 

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Hello Meinvan 

I am  starting at 200mg. 
Yes, it was $2000 to have the HRD testing done.  I was told the government used to pay but they stopped recently 

I go to my first Zejula appointment next Friday (17) so I'll let you know what my blood work is like 

Wishing you well

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@pepperbee I'm so glad you got the funding. I also LOVE that PMH will send your medications to your home. I live over 3 hours from PMH so being able to have medication delivered to my door is an amazing service. For Lynparza (Olaparib), I was monitored every two weeks for the first 3 months. Then it went monthly and then every two months. I'm 14 months in and it's still every 2 months. While I can't speak to Niraparib I can say that the side effects from Lynparza (Olaparib) seem to vary a lot from person to person so expect this may be the case too with Niraparib. I am part of a Facebook Lynparza group where I watch and learn. The only "common" side effect seems to be fatigue/nausea which dissipated for most people after a few months. For me it took 2 months but it was manageable with Ginger Gravol. I don't know about Niraparib but I did learn that if side effects from Lynparza were too much, they were able to drop the dosage. My sense is that the majority of people in the FB Lynparza group are not on the full dosage. So perhaps for both of you it may be worth asking about dosage changes to offset side effects.

As an aside, I did a search on this site (search bar at top) and typed in Niraparib. A lot of threads came up. @Meinvan you may want to try that too. There may be some information from Teal Sisters that is of value/interest. You could also start a new discussion with that as a title if you want to get a more recent thread/discussion going. Good luck to you both and keep us posted as things progress.🤞

#Treatmentandsideeffects

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@Meinvan thanks for sharing your progress. Looks like you have a good plan in place relative to monitoring. My gyn oncologist is also not one to repeat CT scans unless there are "reasons" (e.g., bloodwork is wonky and/or other symptoms). It was 6 months following my last chemo and start of my Lynparza before she did my first CT scan. I'm monitored every 2 months for bloods/CA125 as part of my Lynparza plan and I'm 14 months into that. I wish I could speak to Niraparib however I know there are others in this forum who have experience with that so will leave that to them.

As for HRD testing, again look what I just learned. I did not realize the testing was not publicly funded in Canada (I did a google search on that one). That is so frustrating. It should be when you couple it with an ovarian cancer diagnosis. It's something we need to raise our voices for with health Canada. My search said Life Labs and DynaCare offer genetic testing in Canada. Not sure if that's the same as HRD testing.  For those who have had this done, where did you get the testing?

Please keep us posted as your decisions unfold and/or if you have additional questions. Strength and hugs. 🩵

#Supportandencouragement #Treatmentandsideeffects

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@Alwayslearning I did do a little browsing thru the files interesting to go back to 2017 reading comments about the new drug,side effects, drug trail. Etc…. I would like to know the ladies that had the med the first year it came out and how they have done….  Hrd testing, I was also told there is a blood test that does some kind of hrd but may give something else similar, my doctor was going to find out and send them both to me to decide what we want to do.  Maybe that is thru life labs or Dynacare?  I'll let u know when I find out more….

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I was put on Zejula at the end of my Chemotherapy treatment. This drug made me feel like I had cancer and made my brain feel very off. I went off this treatment after two months and felt like my old self….but not my old self before cancer. Many months after when seeing my Oncologist he said so I have new information regarding Zejula and they found it may cause cancer. I told him I went off it after two months and his reply was well then we don’t have to worry about that then. It was the same way with all these neuropathy drugs they tried me on. They all made my brain feel weird and didn’t give me any relief. I suffer with neuropathy and have done laser physio, physio and acupuncture. Used every cream I could find for relief but nothing really helps. Kalaya extra strength 6 x active relief cream and voltaren helps a little at least while messaging your feet. Keep the faith.
Sent from my iPad

@keep the faith thanks for the reply.  When did you take zejula?  Was it at when it first started being used for OC?  I know that it is closely monitored with lab work to watch for abnormalities and we can come off of it at anytime which is good, especially if not tolerated.  I think I have nothing to loss in trying to find the right dose and if it works and give me more time off of chemotherapy then it's doing it's job.🤞

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I started Zejula about two months after chemotherapy was completed. I had chemo then complete hysterectomy and my gallbladder removed at the same time. Then had further chemo and then was offered to try Zejula. I was able to get it covered by extended pharmacy in Ottawa. I was told it was close to 9thousand dollars a month. It didn’t work out for me but I would try anything that may give me extended time. It wasn’t worth staying on it due to side effects. I am monitor with ct scans of lungs and abdomen every three months. I also would have the c125 blood test done that same day. My cancer metastasized and now lymph nodes are growing so doing radiation to treat. Radiation to abdomen has side effects but mostly bowel issues and some back pain. I would do a thing to stay well and I keep doing what my oncologist and radiation Doctor recommend. My Oncologist says your cancer is not curable but treatable. I feel like it’s a dark cloud over my head all the time and I keep praying for good results and will do what’s best for me. Living with neuropathy you never seem to get a break. I can remember when I didn’t even know I had feet. Keep the faith, never give up hope.
Sent from my iPad

Hello @meinvan. I have been thinking of you and your Zejula / HRD testing  decision.  
I waited to update you on my Zejula experience- I've now been taking it for 7 weeks.  So far, I've had a bit of constipation but, thanks to Restoralax, that is fine now.   My BP has gone up a bit - at my appointment yesterday, they said they were not too concerned about my numbers  yet.  I do take a diuretic for borderline BP so I take my BP a lot and know my numbers.  I expect I am still new to this drug and I will experienced more side effects.  I don't feel too tired.   For now, I will continue on with it.   
I hope you worked through your decisions.  I also hope you got to go on your trip.   

Wishing everyone well 

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@Meinvan

when will I learn to proof read before I press send!!! I have not been on it 7 weeks - it's been 17 days!! Sorry - that's a big difference!! 

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@pepperbee. I do it all the time lol.  Then wonder what people must think of me!  🤦‍♀️. What dose zejula did you go on to start?

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200mg per day 

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@pepperbee glad to hear things are going fairly well so far for you.  Keep me updated.  I haven't got the info for hrd testing yet, I guess I will get it on my appt on the 14th or I'll have to remind her.  Still trying to plan the trip….its in the works 

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Hello all. I'm posting this as I prepare for some upcoming travels. My hubby and I are off to Europe for some adventures. I'm feeling good, so we are taking the time to get some vacay in! We are taking a 9-day cruise with some friends and then spending some time in Portugal. I'll be checking in to see how everyone is doing whilst I'm travelling and of course, will do my best to stay connected with everyone. I hope you are all finding some joy, as big or as small as it may be, in your corner of the world. We are all fighting our personal battles but I see each of you lending so much support to each other. And for that, I'm truly thankful. 🩵

#Supportandencouragement #Anythingbutcancer

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That's fabulous.  Have a great time.  Hubby and I spent 5 weeks in Portugal last fall and loved every minute of it.  Beautiful country.   Our favourite things were the old forts and all the history surrounding them ❤️

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Thanks @sherrygroenendyk … any favourites in Porto?

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@Alwayslearning have a wonderful vacay!  

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@JoanEG thanks!!

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@Alwayslearning oh Portugal and cruise sounds wonderful.  We are hoping to do a short trip soon with our son, after all we have gone thru this year we deserve it.  Big vacay for him will be going to Japan at some point, it's his dream trip.  Talking vacations, do you get health insurance for travelling?  Do we even qualify for insurance when travelling?  Send lots of pictures from all the ports!

its thanksgiving 🦃 weekend, and im so thankful that i found this group and for each and everyone of you being here even on the hard days.🩵🙏🏻💪

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@Meinvan you definitely deserve a vacay!!

I did a post last year I believe, about travel insurance. If you search for it on this site I'm sure it will pop up. For myself, because I'm "stable" per the definition of my health insurance/emergency travel policy, I'm covered under my existing policy. That was not the case last year when I was travelling and thus I sought out other insurance. Those learnings  are what I shared in that post. 
I will post pics as I can. 
Happy gobble gobble weekend everyone 🦃. We are travelling but the rest of our family are gathered at our cottage for some family time.

I hope you all have a restful weekend in whatever form it takes. Enjoy the calories!! You've earned them.❤️😊

#Supportandencouragement#Anythingbutcancer
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Have a wonderful time Always Learning. I love knowing that people are travelling and feeling good. 

 I am planning a trip to Vietnam in February. The tour is all-inclusive (Approach Tours) with travel/medical insurance provided by Manulife. I believe I qualify, as they require medical stability for 3 months prior to the trip. I listened to the travel insurance presentation by Blue Cross and noticed that they had coverage criteria about taking PARP inhibitors that I didn't see in the Manulife document. I had better check about this. 

I hope my health continues to be stable as I adjust to using Lynparza (day 12 and no symptoms that I am aware of). I am back at the gym 3-4 times a week.  

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@Alwayslearning thanks I will have a look at travel posts.

@LeslieA glad to hear lynparza is going well for you. Great for getting back to the gym.  I'm trying to get out walking everyday keep thinking I need to look into some kind of training to help my overall health and wellness.

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Yes, walking is certainly good for us. Another area to consider is building more muscle through resistance or strength training. The treatments have no doubt messed with our bone health, so I read that these types of exercises might offset this issue. I have started back to the gym doing strength training classes using free weights and plates to bring back some strength and tone I lost over the months. It is not easy, but so beneficial. And I actually feel energized and stress-free after a session. I will be interested to see my bloodwork as I go along with Lynparza, hoping that this form of exercise keeps my red & white blood cell levels healthy.   

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@brendalee I am.

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Yes BRCA 2 positive with no genetic links to family. 

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Hey@LeslieA. I'm very happy to hear you are doing well on the Lynparza.  I haven't had any issues with it other than some weight gain but I lost so much during chemo that I needed to put it back on.  

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Your body was probably recalibrating and trying to get you back to your original weight. I know that I have gained back the 12 pounds I lost during the illness phase. 

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@LeslieA that trip sounds fun!! Yes each travel insurance provider has their own exclusions and rules so always important to double check.

I'm thrilled you are day 12 of Lynparza and no side effects  - that's awesome.  👏. Are you on full dosage (600mg day)?

#Anythingbutcancer#Treatmentandsideeffects 

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Yes, I am on the full dosage (600 mg). I get a bit of heartburn from time to time, but otherwise I don't have any other issues. 

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@LeslieA … that's amazing if you are side effects free at full dosage. 👏

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I have been on full dose sine June 2024 without any adverse effects.  I'm so happy you are handling it well also!

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I remember that you said that you were feeling fine on Lynparza which gave me encouragement that I might be as fortunate. My oncologist said that she had patients who got back to their regular life while on this medication, which was also helpful to know. 

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@LeslieA even with some side effects (and I'm on full dosage too - 14 months in), I had no issues getting back into the swing of things. It was not debilitating. So you are doing great as usual @JoanEG ⭐️⭐️

#Treatmentandsideeffects

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@JoanEG 👏👏👏👏👏

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Thank you yes, I am so relieved to have no bothersome side effects. 

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Hi all,

Just a reminder, if you get a chance, if you can lend your voices to one or all of the questions that I've posted on behalf of OCC. The questions relate to your experience with OVdialogue. As of today, there are THREE questions posted. You can find them in the Discussion Feed. There will be one more question posted next week.

Thank you to those that have taken the time already to respond. Your feedback is appreciated.  

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Bonjour and bienvenue from sunny Bordeaux, France. I hope you are all doing well. I'm sorry I'm late for yesterday's Teal Thursday but I was at sea and didn't have wifi. We are enjoying our European adventure. How was everyone's Thanksgivings? Did everyone over eat? Were you able to gather with friends & family? 
I'm wearing my teal bracelet through my travels. Hoping to bring some increased awareness to our cause. Stay strong Teal Sisters and I hope you get a chance to laugh today. It is after all, the best medicine. 

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