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 

Hello @Ellen, @JoanEG, @LeslieA, @Courtenay, @sherrygroenendyk, @4grandchildren.  I am so happy to have found this thread!   I have not followed OV Dialogue very much in the past, but made a post recently and have been following the responses there.  If you are interested, that thread is Niraparib - Lack of Evidence. There's been great converstations there - I've learned a lot!  Women on Olaparib and Niraparib have joined the converstion.  

I too am on Vancouver Island, in Nanaimo.  I was interested to see there are a few of us.  

From the other thread I learned that @LeslieA is registered for the conference in Vancouver late May - early June.  I'm adding that here as there may be others on the island interested in going and could potentially go together or meet up at the conference.  I would love to go, but have another commitment at that time.  

From the posts on this thread, I've noticed that we are spread across the island, from Campbell River to Victoria.  Would anyone be interested in getting together as a group sometime, maybe somewhere central island?  It could lead to interesting discussions.  Just a thought.

It gives me great joy to see the connections that are made via OVdialogue! 🩵❤️

I am in Duncan and I would be interested in getting together.

@Ellen sending you a big hug as you head into your treatments. Hopefully you will be met with minimal side effects. Are you having Paclitaxol/Carbo?

#Supportandencouragement

Hi @Courtenay ... I am so excited to hear you've been on Olaparib for 8 years and that it's working. Out of curiosity and if you are comfortable sharing, did you start the Olaparib after your first occurrence or following your last recurrence? I've been doing a lot of reading about longevity of use. I've read that some doctors will prescribe it for an 'indefinite' amount of time following a recurrence however, are more stringent to a 2 year timeframe when a patient is taking it initially following their first line treatment. I'm assuming as well you are BRCA positive? I'm BRCA2+. I'm currently 18 months into taking it. August will be my two year mark. I appreciate any sharing you are comfortable with. 

#Treatmentandsideeffects

Hi @Ellen that was me who wondered what your chemo lineup will be. I am not familiar with the drug you mentioned. I am always curious as to how they decide what to use next.

I am very happy to hear that you feel great. What a strange cancer this is. You feel fine yet it's within you.😡 I hope the upcoming infusions will do the trick for you!! Sending prayers for success you way!!🙏

#Supportandencouragement #Treatmentandsideeffects

Hi Ellen. I live in Port Alberni so had to travel to Victoria to see an oncologist and to Nanaimo for my chemo. Finished chemoNovember 2024 and much to everyone)s surprise am still here. I am 78 and while not going string at least I am going. I hope all is well with you.

I forgot to say what type of OC I have. Clear cell at stage 3/4 which Dr Gagnon said was actually stage 4 as there was next to no difference. I had the main tumour and smaller tumours on the peritoneal lining. I had massive ascites, the first draining took just over 6 litres of fluid. That is why my prognosis was so grim. I had a radiologist tell me that my cyst was absolutely not cancer but it seems he was absolutely wrong because that was five years prior to my diagnosis. I had a giant hernia from a seat belt injury and had had surgery for that and thought all my abdominal pain was due to that surgery which had needed mesh and a hook implanted in my hip bone. I think I am suffering from adhesions as I have had three large abdominal surgeries..laparotomy after the car accident since amongst many other injuries I ruptured my diaphragm, the hernia repair and then debulking. Dr Cohen said I already had a lot of adhesions.p and I do have a great deal of pain but my last Ct and Ca125 were good. Best wishes to you.

Westwind,

   My heart goes out to you after reading your story and what you have endured. I am sorry that you are in pain. I hope you can get some relief from it. Despite all these surgeries and the after-effects, you have prevailed. It is amazing what our bodies can survive. 
   You mentioned Dr, Cohen; he was my surgeon as well. Considering there are only 3 onc-gym surgeons on the Island, the chances are good that most of us around here have had him work on us. 
 LeslieA 

Thanks for your good wishes. I really liked Dr Cohen, found him very cheerful and friendly. Dr Gagnon is friendly too but rather gloomy. He keeps reminding me I have an 80% chance of return…a statistic I am not likely to forget even with him reminding me. My son who is a doctor is gloomy too. I don't want false positivity but i made decisions because everyone seemed to expect me to die shortly that I wouldn't make today. Upon diagnosis like most I imagine I was in a state of shock and Home Care  kept asking do you have a will, do you have power of attorney, do you have a do not resuscitate form, do you have a form saying you have a fatal illness so if they find you dead they won't think the son who is living with you has killed you. I did have all those forms within the first month but I must say I resented not being able to absorb the diagnosis first. They meant well but it made the first few weeks more difficult than might have been necessary. My old bed needed replacement but because everyone expected me to die I just borrowed a recliner so as not to waste money. Ultimately they wanted it back so again I have been left in a quandary..do I buy a bed or not. I know they don't want us to make decisions based on false hope but no hope can lead to bad choices as well.

Hi LeslieA Thanks for taking the time to respond. I know those people meant well it was just so overwhelming at the time. I signed up for MAID myself because my husband died in agony from multiple myeloma and I want a choice at least. They say they will keep you pain free but they have all these protocols they have to follow. I am not sure if I would ever want to use MAID but I want it there in case I do.

@WestWind it sounds like so much of your trouble could have been avoided if you hadn't received an incorrect diagnosis five years earlier!  Dr. Cohen did my surgery also along with Dr. Mazgani both are amazing!

I was diagnosed in September 2023, stage 3, HGSC I am also BRCA2 positive.  I had 6 rounds of chemo, surgery then 2 more rounds of chemo.  During surgery they discovered one of the tumours was attached to my small in, my bowel and the head of my rectum causing a partial bowel blockage.  They brought in a bowel specialist who deemed it to complicated to remove so I have been on a low fibre diet ever since. I started on Olaparib in June 2024 and will be finished with it June 2026.  I'm 74 and and some days I wonder whether my aches and pains are old age or side effects of the olaparib, lol.  
As a side note my sister and her family live in Port Alberni.  
Joan

I was very very angry at first but then realized my anger only hurt myself and made absolutely no difference to my ultimate diagnosis. Yes it might have nipped it all before it got more entrenched. When he said it definitely was not cancer I replied I guess I can sue you if you are wrong and he said You can try. He is retired now and gave his opinion to the best of his ability so there would be no grounds to sue and only lawyers would profit anyway. I am a medical lab tech and worked when he was first hired. No one found him easy to get along with but I never heard that they doubted his work. Just one of those unfortunate occurrences. If you read the book How to Starve Cancer her diagnosis seemed to follow the same type of path. I do nit have any genetic anomalies that predispose me to ovarian or breast cancer or any other known cancer marker. Luckily.

@Ellen I was so fortunate to have a great support system.  My son took time off work to take me to appointments in Victoria and always made time to drop me off and pick me up from my chemo sessions here in Duncan.  My daughter-in-law who cooked and delivered delicious food.  My sister from Port Alberni who came and stayed with my dogs when I was in the hospital. My other sister who came and stayed with me for a few days when I got home then took care of cleaning my house until I was strong enough to do it myself.  My daughter who flew out from Saskatchewan to make sure I was ok. My grandchildren and great grandchildren whose visits brought me so much joy.  My weight watchers members (I'm the coach) who visited and brought me gifts.  My friends who visited and brought food.  I am truly blessed.

 Today of all days I reflect on those people I call my "squad".   Nine years ago today my husband passed way and my squad has been my lifeline ever since.

Joan

@WestWind @Ellen @LeslieA ... I've been following this thread and shaking my head at the same time when it comes to the negativity some of you have experienced. I cannot believe that some individuals in the medical profession, whether RN's or doctors, don't stop to understand the power of their words. It just boggles my mind. While I don't want anyone to lead me down false paths or lie to me, I also want balance when someone is speaking to me about my medical situation. So, I'm so sorry that you have experienced the more negative side of people's words and actions.

As @Ellen said, you never know when it truly is your time. So, as the saying goes..."wear the new shoes you bought and eat that slice of cake". I would suggest that if you need a new bed, then you decide if you want to buy it @WestWind. This is your life and your decisions are what matter. If it helps with your mental and physical health, how can that be a bad thing!!

@Ellen you asked how cancer has been a positive thing. An interesting question. Not to be trite but it did bring me to all of you...a group of strong supportive warriors. As well, I have learned how strong I am, physically and mentally. It has also shown me who my 'true' friends are and helped me shed myself of those that live too much in a negative space. It also led me to volunteering. I had been trying to figure out where to lend some of my "retired" time. My diagnosis introduced me to OCC, then OVdialogue as a Community Champion and now as the Moderator. I found purpose within my diagnosis. I hope to be able to engage with the forum for many, many, many, many (to infinity) years to come 💙

#Supportandencouragement