English Community

Hello Teal Sisters,

   I just had an in-person meeting with my oncologist at the Victoria Cancer Centre. She pronounced me as having NED, which was great. I have been feeling almost like my old self again these last couple of months. 

   A quick recap about my health situation: diagnosed with HGSC stage 3 advanced in November 2024, 1 tumour over my right ovary that measured 16 x 8 cm, 5 cycles of platinum-based chemo, surgery in April to remove a shrunken tumour, full hysterectomy and removal of reproductive organs with no visible signs of cancer anywhere else, pathology report was 3/3 for response to chemo and finally 2 follow-up chemos this summer. I feel very fortunate. 

   I knew she was going to recommend that I start Lynparza asap, and she presented the pros and possible side effects, the latter of which caused me to become anxious and afraid once I returned home and thought about everything.  I will need an ECG and blood test before commencing, and then follow-up blood tests every 2 weeks to monitor my blood results for 3 months. I will do this and hope for the best, but for some strange reason I felt very sad again. These emotions are perplexing sometimes. 

   Today I looked at a Facebook support group for Lynparza and was troubled by a woman's post who declared that Lynparza was poisoning her body and she has quit. Another person wanted to stop or reduce her dose because she is going on holidays and wants to feel better. Ugh, so discouraging, but perhaps this is what happens on public forums. I don't think that support group will be encouraging for me, which is what I need right now.

    I know that some of you (possibly many of you) are on Lynparza. I also understand that reactions and responses to this drug are varied, as we are all different. Was there any routines that you found helpful for managing the side effects?   

Thanks gals,

Leslie 

@LeslieA congrats on your scan being NED.  I don't have any advice for managing the side effects, but I'm sure someone on here will.  I think I will go on Niraparib, if recommended for me.  I worry about the side effects, especially when I am feeling pretty good right now.  Can't wait to hear the girls advice here.

Hi Meinvan, 

   You and I are at a similar stage in our cancer journey (both post-surgery & heading towards maintenance). I am very pleased that you feel much better and have recovered quickly. 

Leslie 

@LeslieA thanks feeling good most days, trying to be active and get out walking everyday,  keep me updated on how everything is going on maintenance therapy if that's what you decide on.  It's such a hard decision to make.  I hope I will be offered something to keep the cancer at bay for a long time.🩵🙏🏻 

Hello Meinvan, 

I am quite sure you will be offered maintenance treatment. My oncologist provided me with some research regarding increased chances of survivorship from maintenance medication so I am definitely going ahead. I want to take every opportunity to be able to stick around longer! I feel much better about everything & far less worried from the support I have received from all of you on this site.

Leslie  

I am glad to know that you are able to do most things and you are managing well on Lynparza, despite some fatigue. I hope that my exercise regimen will help me manage fatigue, as it has helped you. I also tested positive for BRCA 2. My oncologist mentioned maintenance treatment after the surgery phase, so I was prepared for this. I asked her what happens after the 2 years of treatment and she said in so many words, "watch and wait."  I read somewhere that the medication can continue beyond 2 years, if the doctor believes it is in the patient's best interest to do so. We are very fortunate that this high cost is covered. It would be impossible to manage, certainly for me. 

A side note: I sustained damage to my ureter from the tumour as it was pushing on it, affecting my kidney function, so the urologist put in a stent to correct the flow. It works perfectly now, but the stent has to be replaced every 3 or 4 months. I have had several UTI's, possibly from the stents. So that is my only issue at this point!  

@LeslieA yes I've heard that there have been some situations where the medication continues beyond 2 years. I don't intend to broach the subject again with my oncologist until I am nearing my 2 year mark (next August). I'm hoping there will be advances and positive news about it's use well before then and so perhaps my asking will be a moot point.

As for UTIs - ugh!!! 😢😡

Thanks @lbarr for sharing your experience. It is interesting how varied the side effects are for this drug. I'm glad exercise is helping with the fatigue. I do recall that during my first 6 weeks. It was a strange feeling to always feel so tired. I agree of the help with the cost. I noticed it went up from $8200 to $9000 recently when I picked up my monthly bottle. It seems like such an outrageous amount to pay for a drug however I do know that years of research and development go into drugs and I guess they have to recoup the costs somehow. I too am thankful for the support of both the Trillium Program (Ontario) and AstraZeneca for helping with cost.

I'm always hopeful for what may be on the horizon. I read recently (not sure if it's fact or fiction so I'm trying to find out more information), that there has been a global study underway related to Olaparib, and the results are supposed to be released in October. Again, I need to find more information e.g., study purpose, but I'm hearing buzz through one of my Facebook groups from a few people who are supposedly in the study. So we shall see what that's all about. I'm hoping for nothing but good news!!!

Enjoy the day everyone.

Good morning@LeslieA please don't let the posts on that Facebook page scare you.  I have been on Lynparza since June 2024 and have had no adverse side effects.  Your oncologist will and the pharmacist will explain all possible side effects and how to minimize them.  Mine recommended eating a bit before and make sure to drink lots of water.  Your oncologist.will monitor your blood and reduce the dose if your levels drop.  I hope this helps to reassure you, we are all different so our response to the Lynparza can also be different.  Take care.

Joan

Thanks for your thoughts on this Joan. It is encouraging to know that you have felt well throughout this process. The oncologist was hopeful that I might manage this medication fairly well because I didn't have any issues with the chemo, so we will see.

I just completed an Inspirehealth workshop called the Life Program, which delved into all the areas of wellness. It was very empowering and just what I needed! 

Best wishes,

Leslie 

You're welcome Leslie.  I was very worried about starting the Lynparza because I had such terrible nausea from the chemo but Have had none.  I started out with bloodwork every 2 weeks but now I only get labs done once a month prior to picking up my medication.  The hospital pharmacist requires the bloodwork be done within 3 days of pickup. The Lynparza is dispensed through the chemo pharmacy at Cowichan District Hospital so I'm sure yours will be made available close to home.

@LeslieA congratulations on your NED pronouncement. That is exactly what you want to hear so that's fantastic!!! 🙌

As for Lynparza, I was diagnosed HGSG 3C with 6 tumours (both ovaries, omentum etc.) plus deposits in my peritoneal cavity and 6 lymph nodes positive. So needless to say, I had a lot going on inside me. I had major debulking surgery (successful) in Feb/24. I finished 6 rounds of chemo in July/24. I started Lynparza in Aug/24 (I'm BRCA-2 positive). I agree with @JoanEG that everyone is different in their response. I am on the full dosage (600mg day) and had about a month of nausea (I never threw up) which I managed with ginger Gravol and ginger candies. I also had a fair amount of fatigue which also dissipated with a month. I try to drink a lot of water each day AND I always try to eat something before I take my meds.

I was monitored with bloodwork every 2 weeks for the first 6 weeks; then every 3 weeks for a few cycles; then I was moved to every 2 months. I will tell you that my oncologist was flexible in that she helped worked around my "snowbird" travel schedule. I've had some cycles where we went for 2.5 months. I didn't have my first CT until 6 months after I started the Lynparza. My on-going side effect has been abdominal pain. Like bad period cramps. Abdominal pain is a listed side effect, they just don't expand on exactly what that means. It is manageable pain.

As for Facebook groups. We may belong to the same one (Lynparza/Olaparib Support???). My advice is to be cautious when reading the comments. There are some "dramatic" posters on these sites. If we are on the same group, I can tell you there are people who have been on Lynparza for 10+ years and doing well!!! As well, if you choose to move forward with Lynparza and you are having a difficult time with side effects, they can change the dosage. They may start you at 600mg to see if you can tolerate it and if not, there is flexibility to reduce. Lots of people on the FB site I belong to are on reduced dosages and doing well. Please keep asking your questions to the Teal Warriors in this site. We will share what we can from our experience.

As well as a reminder...you have gotten to this phase of your journey with strength and resolve. Continue to apply both of those as you venture into the maintenance phase. You've got this!!!

#Treatmentandsideeffects #Supportandencouragement

Thank you Alwayslearning for your detailed response. I really appreciate knowing how you have managed the dosage and worked with the side effects. The nausea part must have been challenging for you, but thank goodness it dissipated after a month. I had one bout of nausea due to constipation after my first infusion and that was awful, so I figured out that problem very quickly so it wouldn't happen again. 
It is good to know that there is some flexibility with the dosage around tolerance and people are surviving well on lower doses, if needed. 
Eating a bit before taking the meds is a good tip, and also drinking lots of water. I can do that. I asked the onc about the positive impacts of exercise for delaying or even eliminating recurrence and she said there wasn't much research in this area. (I think there is some and I will look.)

 I plan on regaining my lean muscle mass through strength training, as I am sure it will help in some way. It certainly won't hurt! 

I didn't join the Facebook group after reading some of the comments. Perhaps I hit a negative comments day. Thank you again for your words of support and encouragement! 

Leslie 

@LeslieA you are most welcome. My daughter-in-law attended an OVC conference and there was a speaker (OVC survivor) who spoke positively on the impacts of exercise for healing - both cardio and weights. I too am trying to regain lean muscle mass and get my weight gain under control. I think the latter is due to the lack of estrogen that hit my body so quickly following my surgery. I agree with you that there have always been positive benefits associated with exercise so what's the harm!

Please keep us posted as you progress forward.

#Supportandencouragement

Speaking of weight gain, I earned mine fair and square from thoroughly enjoying ice cream, blackberry cobbler and other summer treats. I decided it was okay to enjoy anything I felt like having this summer. I am also blaming the steroids I had to take before infusions that gave me a wild animal appetite at times. It was crazy! I lost 12 pounds due to early satiety before treatment, but slowly got back to my regular weight. It's okay, but I have to be mindful. Now the rubber hits the road as I go back to fitness classes and curb the indulgences! It was fun while it lasted! 

@LeslieA I went from being skin and bones, 108lbs while waiting for treatment now my last few weigh ins my wieght is finally on the rise again. I joke I have to cut back on my food again so I don't gain anymore weight!  2 months I gained 8lbs, then this 3 weeks interval weigh in I was up 7.7 lbs again!