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Hello everyone, newbie here! I somewhat stumbled onto this site today and the timing feels quite right. I was diagnosed with Stage 3 HGSOC July 2024. 3 rounds chemo, debulking in Oct, 3 more rounds of chemo finishing in Jan 2025. Surgery went "mostly" well but they could not get everything. CA125 down to 6 when I finished (wish I had celebrated that more!) started 12 rounds of Avastin and finished end of August. My CA was normal but climbing from 6, 7, 10, 50 and then up to 290. The last 4-5 tests have all been in that 300 range so it is high but stable. My CT in May was clear but the last one in August showed some fluid and "opaqueness" in the omentum. I have tolerated treatment really well and, other than stiffness, feel quite good. I still have no symptomsI will be likely sent back to the gyno onc next week for a follow up and to see what is going on. I am a bit discouraged that I did not get longer "NED" before having to contemplate more treatment. They still don't know if it might be inflammation due to the Avastin as all the rest of my blood work is good and my other organs are fine (touch wood). I am trying some supplements, exercise all the things to try to stay healthy. I guess I am just wondering what peoples experiences were with 2nd rounds of treatment. Anyone have a longer "NED" after a 2nd round then they did the first? Guess I am just looking for some hope. (BTW I am BRCA and HRD negative which makes me happy for my family but a bit frustrated for treatments). Clinical trials were mentioned, including the Elahere one, but I thought clinical trials were more of a last option? Anyway, sorry for the ramble. I look forward to hearing from anyone!

I'm sorry you're going through this. I'm in a very similar situation. I'm 62 and was diagnosed with HGSC Stage IIIC on Oct 1, 2024. I started chemo on Dec 6, 2024 with Paclitaxel and Carboplatin (4 cycles), then had debulking surgery on March 5, 2025, followed by 2 more rounds of chemo, which I finished on April 25, 2025.

My CA125 went from 1430 before treatment down to 34.7 on April 30 after finishing. A CT scan on May 6 showed NED.

Unfortunately, by Aug 1 my CA125 had risen to 556, and a CT scan the same day showed ascites, peritoneal thickening, and a mass confirming early recurrence and platinum resistance. I'm negative for BRCA, HRD, and Fra.

I started weekly Paclitaxel with bi-weekly Bevacizumab on Aug 27, 2025. My CA125 was 553 on Aug 1, jumped to 1000 by Aug 26 (just before second-line treatment), 1090 on Sept 2, and now has come back down to 553 after 2 treatments. 

My oncologist is treating this as a long-term disease, focusing on keeping it managed and controlled as much as possible. 

It's definitely overwhelming to have things change so quickly, but like you, I'm trying to stay strong and take it one step at a time.

I wish you the very best as you move forward.  I hope you get a longer NED with your next treatment 🩵

Hi Cole, thank you for your reply. I am so sorry that you are experiencing this as well. it is too soon yet to know what the next course of treatment will be and when as the scan results were still somewhat inconclusive. I really did think and hope that I would have more time before having to deal with all this again. I still feel good and don't yet have symptoms so Iwould like to try to delay starting up again a bit if possible. Also exploring other natural options to support my system. I am 52 with no family history and none of the "red flags" so this whole journey has been a shock. Wishing you better days

@GoldenDaisy glad you found this group. The women here are true warriors.  I just finished my first course of chemo Pax and carbo only, I was do in Feb.  I'm brca and hrd neg too.  So I get the frustration around no treatments post to keep us Ned.  I haven't had this discussion yet with my oncologist but it worries me. Good luck.  Ask away they will answer.🩵💪🙏🏻

It's such a shock to face this when there are no family risk factors. It feels so unexpected and unfair. I'm in a similar place, I don't have symptoms right now and I still feel good. I walk briskly every day and do strength training through the EXCEL maintenance program.

I hope you get clearer answers soon, and in the meantime I'm wishing you strength and peace as you navigate what's next. Please take gentle care of yourself 🩵

@Cole so glad to hear your CA-125 has been headed downward post treatment. I hope you are doing well with any post treatment side effects. Thinking about you. 

Thank you so much. I'm relieved to see my CA-125 going down. It dropped again last week, down to 424 from 1090 within 4 treatments. I'm managing the side effects,  mild neuropathy just started a few days ago. Your kind thoughts really mean a lot to me.

Glad to hear your CA is dropping! That is great news! Heads up for the avastin, I had a lot of joint stiffness with it so if you find yourself getting more stiff then usual, it might be that! 

Hi @GoldenDaisy and welcome to OVdialogue. Sorry for the delay in welcoming you to the site however I was travelling. 

I appreciate you sharing your story. As you can see from responses, there always seems to be someone in this group who has a journey with elements similar to our own. I am sorry that your CA125 has been climbing. It can be very frustrating as that marker is impacted by so many other things (as you mentioned, inflammation anywhere can be a contributing factor). Mine has never been lower than 13 and currently is sitting at 20. I tend to average around 18/19 and who knows why vs less than 10. Did you get any clarity yet from your Gyn Onc?

You are certainly doing all the right things ... supplements, exercise etc. It's just frustrating I know, when we are doing all that we feel we can to maintain our NED status. 

Please keep us posted on your progress and what information you get from your medical team. Continue to reach to this group and ask questions. The Teal Sisters in this forum are a wealth of information, support and wisdom. We are all hear to support each other as best we can. In addition, if you are interested there are also monthly Teal Tea's where you can connect via Zoom with other Teal Sisters. I always seem to learn something from someone in that forum when I am able to participate. You can find the information on the main OVdialogue page on the right side (under events).

Thank you again for sharing your story. I hope you will get answers soon and a path forward.

#Introductions #Supportandencouragement

Hi alwaylearning and thank you! I appreciate the kind words of welcome. I saw the gyn onc last week and it was not all "doom and gloom". I was mostly there to hear about a clinical trial (Not Elahere) and to see if I might be interested and to start testing my tumor to see if I would qualify. This would be down the road as it is Phase II and you need to have failed a treatment first. It was not the Elahere that I thought and, in fact, the gyn onc kind of dismissed the Elahere trial as not really relavant for OC which I thought odd as it was just approved. So I will be looking into that more too. She said if I don't qualify for this other study (forget the name) then they will keep looking as others come up. So I am glad that they are on the lookout. This team is very into research and I am so fortunate to have them as my Dr's. As for my CT, it shows striations and some fluid but some lymph nodes are smaller so it just says possible start of a recurrence. The gyn onc said I would likely start Carbo Caelyx "soon" but it is not a huge rush. I am feeling good and not symptomatic so I will meet at some point with my other oncologist and see how long I can safely delay. I am also meeting with an endocrinologist to discuss statins for high cholesterol and things like metformin and other repurposed meds. No idea what will come of that but I am open to anything at this point. If my CA125 had not gone up and I had not had that scan I would think I was doing great! Mentally sometimes you gotta wonder if more testing is always better? Anyway, at least I am ahead of it this time!

Thank You so much for reaching out and I will check out the teal tea! 

@GoldenDaisy you are most welcome. As you will learn from the Teal Sisters in this forum, we are very strong advocates or ourselves (and for each other). So it's great you continue to explore/research information. I'm convinced after reading so many journey's on this site that there is definitely no straight path AND no one's is identical.

If you have questions about clinical trials, we have a resident expert on this site @GloHo who has done an amazing job documenting so much of her journey as it relates to trials. If you use the search bar at the top right of this page for "clinical trials" I'm sure you'll find a lot of information she has posted. 

We also have engaged members coast to coast so if there is something going on in a specific province, you may find someone here who can be of assistance.

Please continue to keep us posted of your journey. I hope you continue to feel well and that this is a minor bump in the road.

#Supportandencouragement #Recurrence

@GoldenDaisy Never give up first of all, there is always hope! I had a recurrence 7 months after last chemo, so was borderline carbo sensitive. My CT and even PET CT lit up on a couple of places. I am a scientist, so can read the literature. There is a nice article from Hogen et al examining OC recurrence and outcome after 2nd surgery. They observed that when there are only few sites where the tumor grew and this can be operated completely, then the outcome chances start from this 2nd surgery. The trick is to know whether there is 1 or 2 or multiple sites recurrence. I had a clear lesion in the spleen, and then suspected area in liver and around my right sided colon. I got a 2nd opinion from Buffalo, as ai Have clear cell, and Prof Ziros there does a lot of research in clear cell. She said, she wouldn't operate. In the end my oncologist at PMH took the risk. I signed away more risks this time, and got lucky. It was only the spleen, all the other sites were just inflammation. Nevertheless, I learned that a) nothing is straight forward and sometimes you get lucky in life and b) for recurrence treatment the US Oncologists strongly recommend clinical studies. You may be eligible for Elahere if your tumor has folate receptor alpha. So, please talk to your Oncologist whether there is the option of another surgery, or Elahere or another good clinical study.

 Hi @GoldenDaisy I just wanted to check in and see how you are doing. I know you were processing a lot of information and wanted to let you know I was thinking of you. I hope you are continuing to feel well. 🩵

#Supportandencouragement

Oh wow! Thank you for reaching out! I really appreciate that. I am still in the same "holding pattern" as before. I have met with the endocrinologist and am waiting for a PETscan. Have not heard from my other oncologist yet about when I would be re-starting chemo. It is really hard to associate the scan findings with how I am feeling as I feel better then I have in awhile. My daughter asked this morning if I was still going back to chemo and I told her "eventually" and she just looked at me like, "how can you have cancer when you look so normal and are doing all the things you used to?". I am feeling very fortunate to be able to do these things but it is a real disconnect. So, for now, I am watchfully waiting and seeing, taking my supplements, exercising and trying to enjoy feeling good. Thank you again! 

@GoldenDaisy but of course! I know you had a bit of information overload. It can be a lot to digest as we all know. I'm so glad you are feeling well. Yes it is strange isn't it. I like to believe that's a positive sign from your body. 🤞 I also want to believe that if they aren't 'rushing' to get your chemo that perhaps that's a good sign too. I try to live in the optimistic side of the world sometimes. Please keep us posted. Sending you positive Teal Sister vibes. 🩵

I like to think the same….not needing to rush is a good sign. Makes it hard to plan things like going back to work when I have no idea what's going on but one step and one day at a time

There are so many thing to add to or ask about in the above.

To fill in more information about myself: I was diagnosed with HGS OV cancer at beginning of August 2022 stage 3b.  I had just retired from work in June.  I had immediate surgery in early September followed by 6 rounds of the usual carboplatin and taxiplacel...I had to change that to something else at one point due to allergic reaction.  Major side effect was constipation, also a little bit of neuropathy in thumb and index finger and possible a bit in right foot. 

I was NED after surgery and after the chemo which ended in Nov or December(?).  After 6-8 weeks I started Niraparib.  I knew I wasn't BRCA but did't know other status.  At some point, due to side effects (It's a while ago now..mostly I remember dealing with constipation; but also had a few recurrences of low platelets and hemoglobin but there were likely a few more) we were able to get me tested by the drug company and found I was hrd negative.  We decided to keep going with the Naraparib at the lower dose and I was able to manage the constipation.  That continued  for about a year.  At that time I had to go off for hernia operation, and when I went back on it, my platelets and Hemo fell again..at that time I thought maybe I should stop because that particular oncologist (my original one moved to Victoria)  wasn't very enthusiastic about it and felt it worthless for me.  As well, each time that happens your body doesn't get back to the starting position...so went off it.  My CA125 started to climb in March of 2025...and so it goes.  I have spots all over my peritoneum.  I haven't looked at the data myself as i think it might freak me out more.  The first go round of chemo went much better in my memory than this time around.  I've had 3 treatments of 6 so far (carboplatin and nab-paclitaxel) and various bad experiences - first chemo I tried fasting and ended up extremely fatigued; after 2nd chemo I got stung by wasp and had huge allergic reaction ended in emerge..but rash went away and recovered; both with 1st and 2nd did't have much problem with bathroom, was on loose side..but only went once in am so not an issue.  with 3rd chemo - day of after supper had gripping twisting cramps - went to bathroom twice and after that very bad costipation - by day 4 had tried everything (laxatives, powdered magnesium, double prune juice..suppository) and went to emergy.  Enema no luck and then had the pre colon. drink...Now I'm on that and seem to be working ok if take twice a day.  this am tried to back off and didn't take it but haven't gone yet...so we''ll see.  More breathless this time round too.  Was panting for those 4 days but generally more breathless.  Had chest scan yesterday.  On good side - abdomen ct scan shows cancer shrinking and last Ca125 was down to 15..

now relative to all the other posts:

Cole; what day do you do Excel.  I am on Tues/Thurs at 10 am Sk time.  I did Excel during my first go round with chemo (but stopped at a certain point to continue o my own)..and have started it again.  I thought I was on the program for people who have taken it before, but it seems at the basic level with lots of explaining.  I'm okay with that because the chemo is making me much weaker.  I do believe in the Excel program.  Unfortunately for me, I was doing really great with continuing with strength training for a while on my own and then that fell away.  I was active and walked and played badminton, and also some bellydacing; however, I found out this year that my bones have degraded and was put on high dose of calcium and something else....so KEEP UP STRENGTH TRAINING EVERYONE FOR YOUR BONES!

Golden Daisy: I used ice mits and boots when taking chemo to reduce neuropathy.  I have it a bit again in same place as before but quite mild.  I started using them after I just started getting neuro. after 2nd or 3rd treatment the first time.  I think Caelix is the one you have to be careful to moisturize your hands and feet or they can get red and raw.I've been told that "Bag Balm" (used on hooves) works really well.  Put that on a night with gloves.

Did your issue requiring an endocrinologist arise because of chemo?

I'm very interested to know what clinical trial your oncologist was looking at.

HGTV: how long have you been taking Ivermectin.  Were you NED when you started or not?  Any results to tell us?

For everyone:

What are the natural options you are looking at?

What supplements do you take?

At the recent conference I attended via Zoom there was an integrative oncologist that said the data points to anything that is antioxidant and some others...may help alleviate side effects, but that they can interfere with the chemo and lessen its effects.  That really screwed with my head because she said it as data points to negative result and not as theoretically and I stopped...so would like to hear from others.

Hi @brendalee thank you for sharing your story. You have certainly been through a lot. I'm glad to see that your cancer is shrinking and that your CA125 is down in the normal range. Those are definitely positives and clearly news you needed when you consider the journey you've had.🙌 I do however hate to hear about the constipation issues. It's such an issue for so many. I know I am a fanatic now when it comes to monitoring my pooping. I've recently tried to eat more of a 'low fibre' diet per a discussion with my gyn oncologist. During my routine colonoscopy they discovered my sigmoid colon had narrowed likely due to scar tissue forming around it from surgery. So I do get some cramping in that area on a regular basis. As for the "low fibre diet", I haven't gone all the way to bright however have eliminated some bad culprits such as raw veggies and nuts. I miss them both but will do what it takes to keep my poop moving. I hope you will find the right formula soon. 🤞 

It's interesting when you mentioned getting stung by a wasp. I know I'm not allergic to bee/wasp stings however I got stung by a wasp around the time I was in chemo and my hand swelled up about 5x it's normal size. Plus it was sooooooooo itchy. It took almost a week to settle down. I actually had to put my arm in a sling as it hurt so badly for my hand to be down so I kept it raised and supported.  

Thank you for the reminder on strength training. I for one, appreciate it. I've been lax. Thanks as well for some of your other advise relative to peripheral neuropathy  (I too used ice - I just put it in ziplock bags 😁). Also the "balm" suggestion was a good one. 

I hope that you will continue to progress forward positively. Please continue to keep us posted. Thinking of you 😊

@Cole  @hgtv @GoldenDaisy 

#Supportandencouragement #Treatmentandsideeffects

I met with the endocrinologist as my bad cholesterol was high for the first time right before my diagnosis. My GP said it could wait as the good cholesterol was "fine". I went through my 6 chemos and then my GP retired so there was no one to follow up. So I met with the endocrinologist about taking a statin and its secondary effects on cancer. He is also a big believer in metformin. I am waiting articles from him to see if that might be something I am interested in. This was not as a result of my cancer but since both my cholesterol and sugar levels were high for me before diagnosis I am thinking of things to help look for a cause.

As for the supplements, I work with a naturopath who also did blood work. I currently take Vit D, B12, Curcumin, quercetin, reishi mushroom and a probiotic. I still use a bit of lax-a-day to keep things moving! I have gone back to swimming once a week, enjoy walking, biking, workouts at home…all the things I can do while I feel good! 

Sounds like a similar journey to mine. Are you doing the Vit C infusions? 

@Tanja I hope that the "pause" is just a blip in the road and that you will be back on the treatment plan soon. I recall when my neutrophils plummeted during my chemo and they had to "pause" my infusions until my body could catch up. I too felt a bit depressed. I had to do Lapelga injections for every remaining chemo infusion to keep my neutrophils boosted, which did work. So I hope that the blood pressure meds will have the same positive effect for you so that you can get back on the maintenance track. Stay strong!!!

I also appreciate your discretionary comment on the supplements and their effects. I think everyone has to do what makes most sense for them however it's always a good reminder to do the research and go in with "eyes wide open". I know for instance that while I'm taking Lynparza (Olaparib) that there are foods I cannot eat and there are some supplements I have been asked to avoid as both these things can interfere with the absorption of the drug in your system. I tend to always ask my gyn-oncologist for her advise PLUS I like to speak to the pharmacist at PMH. It there is anyone who knows about interactions, it's them and they ultimately are the experts. So knowledge once again, is our power in making decisions.

#Treatmentandsideeffects

It was a suggestion for me as well but I am in QC and our naturopathy coverage sucks so I would have to go to Ont to get it. But I was told1-2 a week for about 3 months so that is a lot of travel time and I am not sure what the cost is either.

Hi! Yes I was on supplements during chemo! Now I’m going to be honest here / I listened to my integrative oncologist over my PMH oncologist who told me I couldn’t take anything really - and I’m not recommending that at all but the stats on my survival honestly were good enough that all I could think was … what do I have to lose? If you’re telling me there is a strong chance I won’t be here in 5 years why wouldn’t I get a second opinion?? I have babies!!! I have complicated feelings on why physicians need to prescribe just SOC options and avoid recommending alternative treatments. Anyway rant over / happy to share my list and doses - I’ve attached below - can you see them?
Juicing recipe has been the same almost since diagnosis
3 or 4 organic beets
8 pounds organic carrots
2 green organic apples
Big hunk organic ginger
8 ginger of organic turmeric
Store in fridge in mason jars and will last 3 or 4 days - I give my kids a small glass daily too - I have a med glass daily (I drank a larger glass daily when in active chemo)

Daily smoothie
1 banana
1 cup organic blueberries frozen
Throw in tbsp pomegranate seeds that I have in freezer
1 kiwi with skin
Handful organic spinach
1 avocado
Tbsp or 2 of organic brocolli sprouts I store in freezer
Tbsp chia, hemp, flax, green tea powder, amla berry
Scoop protein powder
Blend it up!!

My juicer is a Nama but I stated with a breville which was a little more cost effective.

I don’t talk about my cancer journey publicly yet but I’m here if you have any questions or want to chat xxx

@hgtv thanks for sharing your journey and information. I would really like to ask more questions about your integrative oncologist and your alternative treatment. Can I I text your phone number directly, my name is Silvie. Thanks 

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@hgtv et al… I love all this sharing. It's what makes this forum so valuable!!

#Healthandwellness

Hi everyone - for the privacy of hgtv and all on OVdialogue, I have removed hgtv's person contact details from the above post. This is not something we do regularly or take lightly as this is your space to share and connect. We do want to ensure privacy for all on the site - which is also why we utilize the usernames for profile names.

If you would like to reach out to hgtv about their experience, you can send a private message to exchange personal contact details. 

If you're looking at how to send a private message, you can see the 'how to' by clicking: How to send a private message. 

Thanks so much! 

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Hi everyone!

Thank you so much for sharing your experience and for being open about what's been helping you - that kind of sharing really helps others feel less alone. 

We know many people explore different ways to support their health during and after treatment. It's important to remember, though, that sometimes, supplements or non-prescribed medications can also interfere with cancer treatments or cause unexpected side effects.

If you're thinking about trying something new, it's always a good idea to check in with your gyne-oncologist, nurse, or pharmacist first. They can help make sure it's safe and works alongside your treatment plan.

And as always, if anyone has questions or is looking for credible, evidence-based information, Ovarian Cancer Canada is here to help. 

Greetings, Teal Sisters

I've been metaphorically sitting on my hands the past few days, debating whether to reply to the message above, but the professor in me has won the debate.  I'd like to suggest further caution to the post above from @Tanja.  Although I don't use any AI tools myself, I can see their appeal.  For example, wouldn't it be wonderful someday if AI could help detect ovarian cancer early? I would, though, like to urge caution in using ChatGPT to find information.  ChatGPT has gotten "smarter" in some ways, but it still makes things up, including realistic-looking journal citations.  Tools such as ChatGPT trawl the internet, which I suspect everyone in this forum knows is full of credible information, misinformation, and disinformation.  ChatGPT doesn't necessarily "know" the difference.  All of us Teal Sisters deserve the best evidence-based treatments available, and I hope that anyone who uses ChatGPT (or "Dr. Google"!) reads with a healthy dose of skepticism and checks the credibility of sources.