Original Message:
Sent: 2/28/2025 2:07:00 PM
From: lbarr72
Subject: RE: Hello from BC
I am following a similar path with my cancer, although as I mentioned on the Teal Tea Feb 25th, while our treatment paths seem to follow the "tried and true" plans, our responses are individual.
I was diagnosed in Aug 2023 at 71 years, with high grade serous Ovarian Carcinoma ( stage 3C) with peritoneal carcinomatosis. (a huge amount of cancer cells floating in the peritoneal cavity). Genetic testing showed that I have no pathogenic variant in any genes tested (19). Somatic BRCA2 was restricted to the tumour only and not something I could pass on. (Phew !) I did not inherit this, just lucky I guess !!!
I had debulking surgery including removal of a section of colon and my appendix. The colon was resected. During the surgery I had a small stroke which has caused some small spots of vision loss ( for which I had to spend months fighting to get me driving license back, which I did ). I was in hospital for 2 weeks, home for a week, and then back in again for a week after throwing blood clots, one of which infarcted half of my left kidney. Once blood thinners were effectively controlling this issue, I came home ( north of London, Ontario) I started chemo ( PAClitaxel and CARBOplatin) in October 2023 and finished the 6th round on Feb 6th, 2024. I did not have major reactions, other than a couple of delays when my white cells were too low. I of course lost my hair ( Who knew nose hair would be missed !!!), had achy legs, fatigue and constipation and some neuropathy in my feet. The dose was reduced to minimize the neuropathy.
In April 2024 I started on olaparib ( Lynparza), but had to reduce the dosage after 3 months when my hemoglobin dropped ( another thing I will never take for granted !!) I was pulled off of olaparib in early November 2024 for 5 weeks as blood indicators for my kidneys were concerning ( don't ask me the details of that, as I count on my medical team to read these things ) I saw a kidney specialist as well as my oncologist with London Cancer Clinic each week for the 5 weeks as well as continual blood tests. By December we decided to continue the olaparib as this cancer is too dangerous to be allowed free rein. The kidney specialist agreed in early January 2025, saying that the kidney damage was minimal and my team would keep an eye on it. They did take me off my low dose of BP medication to allow more blood flow to the kidneys. I am back on the meds without any disruptive reactions. I noticed that my energy dropped a bit when I went back on, but the tongue sensitivity I had and neuropathy are not such a problem. I have not had nausea, nor did have at any time in treatment . If I did, I have been able to deal with it. The pain and nausea and appetite/ weight loss were all before my surgery when I was really quite ill.
I was given Senokot to use during chemo, and it along with Restoralax were needed to fight the constipation. I do take Restoralax daily now (but not Senokot) as it seems to keep my gut functioning well, and avoiding the fullness when backing up ! I get some pressure/discomfort in my upper left abdomen at times, which scares me, but my CT scan August 27th, indicated no evidence of disease or metastatic disease. My Dr prefers not to do constant scans to avoid scanxiety. I agree with this plan.
I am trying hard to be aware of my medical situation and care, but do not want to dwell on it all the time, or over study it. For me it defeats the ability to live my real life, you know, the one that doesn't have cancer.
I wish all of you hope and some joy along the way. We all still have a life to live beyond this disease. I am so glad to see Spring on the horizon. There is nothing like that first warm, green day with flowers popping back up to restore a winter tired soul.
A round of hugs to you all, 'cause that's how I roll !!
Linda, Feb 28, 2025 in Lucan, ON
Original Message:
Sent: 2/27/2025 8:02:00 PM
From: Alwayslearning
Subject: RE: Hello from BC
Hello @Me_jane. Welcome to the forum! It sounds like we have a similar pathway/diagnosis. I too was diagnosed HGS Stage 3C in Feb, 2024. I went through major surgery and also 6 rounds of chemo (Pac/Carbo). I finished my chemo in July, 2024. My diagnosis was also a complete and utter shock. We have no history of any type of breast, ovarian etc. cancer in our family and my misfortune was the result of the BRCA-2 gene mutation (which my father had no idea he was carrying and had passed along to me). We are well informed now following my diagnosis and genetic testing. I started Lynparza (Olaparib) in August, 2024 and am hopeful I will be able to take it for the full 2 years.
As for side effects, I have kept a very detailed online journal through my journey. For Lynparza, I dealt with nausea for the first three weeks. It was tolerable using Ginger Gravol. I also discovered that ensuring I had something to eat prior to the dosage (300mg twice daily) was very helpful. Since it needs to be taken 12 hours apart I tend to take it at 9am/9pm. I had to play around with timing to find what worked best for me with my schedule. The other side effect I had for almost 4.5 months was lower abdominal pain. It almost felt like period cramps (which of course would be impossible now - ha ha). I read that almost 40% of users experience abdominal pain (although there is NO clarity on exactly what/where that pain is...they just say "abdominal" so it's pretty generic). I had a CT scan in early February (my first in 6 months) and all was clear. The abdominal pain has subsided and my oncologist thinks it may have been linked to Senokot-S which I'd been taking pretty regularly since my chemo, to keep my bowels moving. So who knows if the pain was the Senokot or the Lynparza. I stopped the Senokot and the pain has reduced so that's good. I would say that in general, I have tolerated the Lynparza well.
As for efficacy, I remain confident, based on all the clinical research, that it will continue to keep any recurrence at bay for me. I hope it will do the same for you. I HATE that we can only take it for two years and pray that things may change and/or alternatives will become available as time progresses.
There are a few other folks in this forum who also are taking Lynparza. They may have experienced other side effects and will hopefully weigh in. Are you experiencing anything at this point? Let us know. I hope that your Lynparza journey will be a smooth one!! Talk soon.
#lynparza #Olaparib
Original Message:
Sent: 02-27-2025 18:01
From: Me_jane
Subject: Hello from BC
I was diagnosed last summer with high grade serous ovarian cancer stage 3. Went thru surgery and 6 rounds of chemo
I'm exhausted, as someone who has been healthy my entire life in my mid 60's this came as a complete shock
Next steps is olaparib for 2 yrs, does anyone have any insight on side effects and efficacy. I have a BCRA1 somatic gene mutation