Hi Ellen, I have been following this thread.  I was diagnosed in September 2023 with stage 3 HGS ovarian cancer.  I am also BRCA2 positive.  I had 6 rounds of chemo followed by surgery (Dr. Mazgani & Dr. Cohen) then 2 more rounds of chemo.  I have been on Olaparib since June 2024 and feel good.  I do have a partial bowel blockage due to a small mass that was attached to my small intestine, my bowel and the head of my rectum that was deemed too dangerous to remove.  I stick to my low fibre diet and the Olaparib has actually shrunk the mass.  Low fibre means I can eat cookies but alas no spinach! 😆

Hi @Ellen .... so glad to see you've connected with some of the "local" Teal Sisters in this forum. Thank you for sharing your story. Sounds like your diagnosis was HGSC Stage 3?? You said you knew quite a bit about OVC. Did you have a family history? Or perhaps you are in the medical field? That comment struck out for me so I'm curious. Of course I'm glad you were able to get the help you needed. For so many of us it took almost a year, even more, to get a diagnosis. For the reason you stated, the symptoms can be so subtle. 

I am sorry you are experiencing a recurrence. As I think @LeslieA said so well, there is no rhyme or reason as to why some respond so well to treatment, maintenance drugs etc. and others recur faster. Were you experiencing some symptoms that led to the recurrence being diagnosed? Perhaps your bloodwork provided some clues. You said they are monitoring so I'm guessing there's a plan in place. I hope you continue to get the care you need and thank you again for engaging with this group. The Teal Warriors here can be very good for the "soul".

#Recurrence

You are doing well lbarr72. In relating to your story, my dose was reduced to 400 from 600 mg because of the creatinine issue with my kidneys. That is when the doc explained that a dose reduction wouldn't affect treatment because the drug wasn't flushing out properly anyway. At least that's what I understood. 
Do you think the olaparib caused damage to your kidneys? I thought my kidneys were functioning fine before the maintenance drug started, even with the stent. 
Are you feeling ready to go off olaparib in April? I wonder what the stats say about women's health post- maintenance stage? I am guessing that there might be some improvements in organ health (if organs were affected), but I am really speculating. 

@lbarr72 glad to hear the kidneys remain ok as do the BP. I'm going to be very curious as to what happens with you in April regarding Olaparib. I follow a Lynparza FBook page and there are people that have been on it for 5+ years. Some over 10 years. None, from what I can tell, are here in Canada however their doctors said if it's working, then continue to use it. One person on the site said that after 10 years her doctor basically said that it had done the trick and post 10 years to take a break from it. I'm not sure what that person ending up doing. I'm not sure if, with doctors support, we are allowed to continue on it here in Canada AND with funding. So, I will definitely be curious. I am glad you've been feeling good and my doctor is similar. Other than routine bloodwork, she does not do CTs or scans unless there are concerning symptoms and/or bloodwork is telling us something needs to be investigated further.

Onwards...as you say!

#Treatmentandsideeffects #Supportandencouragement

Hi Ellen.  I live in Duncan.  Where on the island are you?

Hi Ellen,    I live in Parksville. Where are you? 

@Ellen.  Yes it's a Dutch name, but it's my former husband's name.   Do you like to go for walks or are you interested in hiking?   I'd love to get together sometime if you're interested.   

Hi Courtenay,

   I was also shocked when diagnosed in late 2024, as I was in good health and had looked after myself well. The doctor told me that something switched on in my body to activate the cancer cells for unknown reasons. She assured me it wasn't anything I had done wrong. I needed to know that. There are always theories floating around on the internet about why cancer starts up, and much of it is probably nonsense (stress, past trauma, etc.). 
   How are you doing now? You have gone a long way since your diagnosis 11 years ago. That is wonderful. 

@Courtenay 11 years!!! That is amazing. You give hope to all of us that longevity is possible with this disease. How long were you on Olaparib for? I know you said you started it two years post diagnosis. I think you said in a separate post that you were on it for 8 years. I think you also said you are in B.C.? I guess we are trying to get clarity as so many of us have been told 2 years in the maximum. Plus we know there are inconsistencies in treatment approaches by province (which is very upsetting at times).

Like @LeslieA I was healthy and completely shocked by my diagnosis. I was on the Pickleball court the day before my world came crashing down! For me, the BRCA 2+ gene mutation was the reason for the disease. Of course, at the time of my diagnosis I had never heard of a BRCA gene nor did I know I had the mutation (we found out after the fact, through genetic testing that my Dad carried the gene mutation). We have no history of OVC in our family (of the records we know and we know quite a bit).

I'm so glad to hear you are doing well and that they do an annual check-up relative to OVC. Thank you for lending your voice to this forum and for giving us hope! 

#Healthandwellness

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Hi @Courtenay ... I am not a medical professional however in answer to your question on whether they will put you back on the Olaparib (Lynparza) if you recur. My understanding from everything I've read from OVC patients, is that if your recurrence occurs while you are taking Lynparza then no. They will consider that the Lynparza did not work. If however, you complete your two year course (which is the standard approved course, at least in Ontario) and you were to recur post completing the Lynparza, then yes, there is a possibility you can take it again. Again, this would require a medical professional to validate however as mentioned, I've read about people who complete the two years and unfortunately recur after that. In those cases, they became eligible to take it again (as long as their bodies were able to tolerate it again).

#Treatmentandsideeffects

@Ellen.    Hi Ellen, sorry I missed the post about you having a recurrence when I asked if you'd like to get together for a walk or a hike.   If there's anything I can do to help as you maneuver your way through treatment please reach out.  I found very slow walks at Rathtrevor really helped me when going through chemo.  ❤️

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@Ellen.  Looks like tomorrow is the only dry day of the week.  I don't have anything on the agenda so I can meet you at Rathtrevor at 11 AM or 12 or 1 PM 2 PM whatever works best for you?   My cell number is 250-710-2649 if you want to text me,  

cheers,  Sherry