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Post chemo follow up?

  • 1.  Post chemo follow up?

    Posted 8 days ago

    Hi ladies,

    as you know I finished my last chemo Sept 4th, and had my CT scan Sept 12th.  I go tomorrow for lab work.  I am wondering what to expect when I see my oncologist in October in terms of follow up care.  I don't think she will offer me any oral treatment, as she said i don't have any genetic markers.  And I know niraparib is now not being recommended.  When I asked her back in August she said they don't really do routine ct scans and such and just base things on symptoms…..that being said I felt like I'm not going to have any monitoring other then my own symptoms….which even when I was diagnosed I didn't link it all to cancer as the symptoms weren't constant and only occurred a few days here a few days there etc….so what has everyone found is the usual post care going forward?  What should I be expecting and asking for?  I thought maybe a ct scans every 3 months for the first year at least?  Lab work?    I'm in BC, if that makes a difference.  Those on PARP's and those that aren't what's your post care protocol?



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  • 2.  RE: Post chemo follow up?

    Posted 8 days ago

    Hi Meinvan,

       I also live in BC and just had my maintenance meeting today with my GP-oncologist at the cancer care centre in Campbell River. I am BRCA-2 + with no genetic markers. I think it is called somatic markers in my case. The testing indicated that PARP inhibitors are the maintenance route for me, particularly Lynparza. I was told today that they are probably not going to scan me regularly because my bloodwork (cancer markers) were reliable indicators of cancer in the past. So that is where it is with me. I haven't gotten the meds yet, but will start them this weekend. The procedure will be bloodwork every 2 weeks for 3 months, then taper down to once a month. This is to figure out the right dosage related to side effects.
       I hope this info helps. Are you BRCA-2 +? 

    Leslie 
     
       

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  • 3.  RE: Post chemo follow up?

    Posted 8 days ago

    @LeslieA I'm have no brca or genetic markers that I know of.  So I don't think my doctor will suggest any meds for me post.  That's why I'm trying to figure out if I just get symptom monitoring, or do I get lab work? Scans? At certain intervals like people taking parps would.

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  • 4.  RE: Post chemo follow up?

    Posted 8 days ago

    Hi I'm HGSOC 3A and just finished chemo on July 11. BRCA negative but still waiting for HRD results. My team is recommending Zejula, I need to follow up next week. My CA125 was never high but after surgery and chemo it went down (26 to 11). If I go on the Parpi treatment it's regular follow-ups, if not they told me that they would monitor me every 3 months (bloodwork and CT scan) for the 1st year. First scan post chemo is scheduled for end of October. I'll wait and see! 
    I would definitely ask for monitoring, even if it's just bloodwork. Good luck. 

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  • 5.  RE: Post chemo follow up?

    Posted 5 days ago

    @Dragonfly what province are you in?  Where did you get your hrd testing done?thanks

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  • 6.  RE: Post chemo follow up?

    Posted 3 days ago

    @Meinvan I'm in the province of Quebec and was tested at the Montreal Jewish General Hospital. 🙂

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  • 7.  RE: Post chemo follow up?

    Posted 8 days ago
    @meinvan  It sounds like we are at similar stages of our recovery and have similar questions.  
    As far as follow-up scans and bloodwork, according to the new OCC guide they don't work any better than our own sense of how our body is doing. I found the new guide had good information, some comforting and some unsettling - but at least I know.  I definitely recommend it.
    I will say that once I detected something 'not quite right', everything kicked into gear without delay, much more efficiently than for the first bout.  That was even though the symptoms were mild and I was basically feeling fine.
    I'd love to hear what your gyne oncologist says.
    FYI: I just posted my profile, which includes my health history for the last 6 years.





  • 8.  RE: Post chemo follow up?

    Posted 8 days ago

    @GGail. My booklet just arrived the other day, I'm partway through it.  Glad to hear you get prompt service when symptoms pop up.

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  • 9.  RE: Post chemo follow up?

    Posted 5 days ago

    @GGail thank you for the reassurance.

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  • 10.  RE: Post chemo follow up?

    Posted 8 days ago

    Hi @Meinvan I am also in BC.  I am BRCA2+ and following chemo and surgery I was put on Lynparza.  I had a CT scan every 3 months for the first year and now I have one every 6 months.  I had basic bloodwork every 2 weeks for the first six months and after 1 year monthly prior to my Lynparza being dispensed and CA125 screening every other month.  I think a lot depends on the individual.  

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  • 11.  RE: Post chemo follow up?

    Posted 8 days ago

    @JoanEG thanks for the reply.  I'm brca neg.

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  • 12.  RE: Post chemo follow up?

    Posted 7 days ago

    I was reading up on PARP-inhibitors (Jezula and Lynparza) from the Ovarian Cancer Canada site and found this: "But evidence shows that women who do not have a BRCA mutation can also respond to treatment with a PARP inhibitor.  The reason for this is not fully understood at this time but results are encouraging."  

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  • 13.  RE: Post chemo follow up?

    Posted 5 days ago

    @LeslieA I'll be interested to see what my doctor says about this

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  • 14.  RE: Post chemo follow up?

    Posted 8 days ago

    Hi @Meinvan ... as I am BRCA-2+ I was eligible for Lynparza (Olaparib) for maintenance. Mine started about a month post my last chemo. I had a CT scan right before I started. Then for follow-up, I was seen for bloodwork every 2 weeks for the first 2 months (this includes the CA-125). It was then extended to every 3 weeks (they were kindly working around some travel I had planned). It has now been over a year and I'm seen for bloodwork every 2 months. As for CT scans, my Onc/Gyn at PMH (I'm in Ontario), does not believe if doing them for "maintenance" purposes. If my bloodwork shows something "odd" or I'm demonstrating symptoms then she would request one. My first one following August 2024 was 6 months later in February, 2025. My bloodwork was all within acceptable ranges however she felt we should do one as it had been 6 months. Since then, I've had additional CT's in April and August as I was having a lot of unexplained abdominal pain. Both CT's came back all good. I do have access to 24hr oncology nurse helpline plus during weekdays can always get a message to my medical team so feel that if there was something that needed to be investigated, I could get the attention of the right people. My advice is to continue to advocate for yourself. If they want to only see you every 4 months let's say, ask what the procedure is if you want to speak with someone about 'symptoms' or 'concerns' and how quickly you would be seen by your medical team if needed.

    I hope that helps.

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  • 15.  RE: Post chemo follow up?

    Posted 8 days ago

    @Alwayslearning yes I do have a long list of questions for my oncologist especially who do I call if needed and what symptoms should I be reporting.  I find I still have some symptoms, not sure if they will ever go away or it's just my new normal….im one of these people that would not report every little ache and pain and doesn't like to complain  but then look where that got me.

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  • 16.  RE: Post chemo follow up?

    Posted 8 days ago

    @Meinvan who knows if symptoms ever go away. I think we all heightened sensitivity having gone through all of this. I tend to keep a journal via the Notes section of my iPhone. If I start to see a trend e.g., something odd that's happening more frequently and/or a pattern is forming, then I will report that to my medical team OR I'll make a call to the medical 'on call' folks. 

    I'm glad you are building your list!!!

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  • 17.  RE: Post chemo follow up?

    Posted 7 days ago

    Hi. I too do not qualify for maintenance drugs as I had no DNA mutations.  My last chemo was in August. 2024. 

    I was told to call when I'm feel sick.  It is a challenge not to have regular scanning.   If something does not feel right call your oncologist,  and have them investigate.  In May of 2025, I had discomfort in my lower abdomen.  I was able to get a CT scan.   No signs of cancer.   Remember a CT scan result is only good for a day. 
    Enjoy your life and not what is the cancer doing.  It's hard to do but you have this community to help you. 

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  • 18.  RE: Post chemo follow up?

    Posted 6 days ago
    HI,

    I am five years removed from my last chemo treatments and am not on any medication, however I did have routine follow up care as follows:

    I also was told the biggest factor is self evaluation which is difficult as some of you have mentioned as there can be many contributing factors and for me my symptoms before diagnosis came and went, fatigue was a huge change for me, but that is a constant part of my life now so that doesn't help a whole bunch in regard to what to watch for.

    The first two years I had a visit with the oncologist every four months with blood work done prior to each appointment.  

    I did have within the first  two year time frame multiple issues that required a scan to check out the source of the problems.  It turned out to be a nasty infection called HPylori which is challenging to get rid of and has lingering symptoms. This was not revealed in the scan, but we started with a scan and then moved on to what else it might be.

      I also developed  tachycardia arrhythmia which resulted in needing medication to control my heart rate (I will be on this for the rest of my life) and it causes fatigue as the heart rate is slowed down, another contributing factor.  This was diagnosed  during a physical within the first two years.

    Earlier on I had a bladder infection which as many of you will know can  cause a lot of pain and discomfort in the pelvic area.

    After two years it became every six months, but again if I had any unusual symptoms all I had to do was call the oncologists office and they would arrange for blood work first and then if needed a follow up scan it was done.  I have had ongoing discomfort and from time to time bowel irregularities, but thankfully each time the scans came back clear.  I would say over five years I have likely had four scans as well as an ultrasound and interestingly x rays as there was basically pain throughout my body which has been determined to be osteo arthritis in hands, feet and back.  How much of any of that can be related to chemo or just the luck of the draw is hard to say.

    This all sounds a bit daunting, but I am doing very well and enjoying life, grandkids, traveling, cooking, baking, etc. etc.  I break tasks down into parts and find I can manage quite fine that way, short naps when possible are also a big help.  I have zero complaints about anything and am immensely grateful for every day.  I hope that helps you a bit in regard to how self monitoring may or may not work.

    I live in Alberta and had my care in Calgary at the Tom Baker Center which is an amazing place with excellent staff.

    P.S. I was 64 when diagnosed.







  • 19.  RE: Post chemo follow up?

    Posted 6 days ago

    @Gratitude123 thank you for sharing your story and monitoring experience. As well, congratulations on reaching 5 years post chemo with no recurrence.🙌

    I'm sorry however that you've continued to experience other medical challenges. It doesn't seem fair sometimes does it however I LOVE your positive attitude. That's the sign of a Teal Warrior!! I hope you remain cancer free for many more years to come!!!!!

    #Healthandwellness #Supportandencouragement #Treatmentandsideeffects

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  • 20.  RE: Post chemo follow up?

    Posted 5 days ago

    @Gratitude123 thank you for your answer.  I love that you got over 5 yrs no recurrence.  That's great. I wish you continued good health.

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  • 21.  RE: Post chemo follow up?

    Posted 4 days ago
    @Gratitude123 can I ask what stage you were diagnosed? I think that's great that you've been clear for 5 years; it's encouraging to hear that. 
    Thanks






  • 22.  RE: Post chemo follow up?

    Posted 3 days ago
    Sure. It was high grade  serous 2B 

    There was cancer on my left tube and ovary and it had spread to the right ovary. 

    Lymph nodes were negative 

    Omentum fat was negative 

    Cancer had not left the pelvis.

    Maybe more details than you wanted to know

    ����

    On Mon, Sep 29, 2025, 9:49 a.m. Dragonfly via OVdialogue <Mail@onlinecommunity.ca> wrote:
    @Gratitude123 can I ask what stage you were diagnosed? I think that's great that you've been clear for 5 years; it's encouraging to hear that. ...
    Ovarian Cancer Canada

    English Community

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    Re: Post chemo follow up?
    Reply to group | Répondre au groupe
    Sep 29, 2025 11:48 AM
    Dragonfly
    @Gratitude123 can I ask what stage you were diagnosed? I think that's great that you've been clear for 5 years; it's encouraging to hear that. 
    Thanks



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  • 23.  RE: Post chemo follow up?

    Posted 3 days ago

    @Gratitude123. Thank you! That's what I was looking for. 
    I'm 3A, tumor on right fallopian tube/ovary

    • 0.2 cm cells found on omentum
    • BRCA 1/2 negative (cell and tumor)
    • waiting for HRD results
    • Diagnosed Jan 2025 

    they want to give me PARPi but it's 50/50 

    I'm 50/50 too and wanted to discuss if we monitor and see how it goes. 
    Thanks again for sharing, so nice to hear that you're doing great and very encouraging for me!  
    Good luck with your daily health challenges and keep up your awesome spirit. 😊

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  • 24.  RE: Post chemo follow up?

    Posted 3 days ago
    Thankyou. Happy it was helpful information for you. 


    I had 5 chemo treatments, 3 weeks apart. I was scheduled for 6, but my body couldn't handle any more.


    I had Dexamethasone about 45 minutes.

    Followed by Paclitaxel about 3 hours

    Followed by Paraplatin about 1 hour.


    With the flushing between each one it took 5 to 5.5 hours per treatment. 

    Different medication before and following each treatment to assist with nausea etc. 


    I was negative for any genetic markers.

    Again not sure if this is helpful or not, but was the course of treatment prescribed for me.

    All the very best to you as you travel these unfamiliar roads.

    ����

    On Mon, Sep 29, 2025, 5:46 p.m. Dragonfly via OVdialogue <Mail@onlinecommunity.ca> wrote:
    @Gratitude123. Thank you! That's what I was looking for. I'm 3A, tumor on right fallopian tube/ovary 0.2 cm cells found on omentum BRCA 1/2...
    Ovarian Cancer Canada

    English Community

    Post new message | Publier un nouveau message
    Re: Post chemo follow up?
    Reply to group | Répondre au groupe
    Sep 29, 2025 7:45 PM
    Dragonfly

    @Gratitude123. Thank you! That's what I was looking for. 
    I'm 3A, tumor on right fallopian tube/ovary

    • 0.2 cm cells found on omentum
    • BRCA 1/2 negative (cell and tumor)
    • waiting for HRD results
    • Diagnosed Jan 2025 

    they want to give me PARPi but it's 50/50 

    I'm 50/50 too and wanted to discuss if we monitor and see how it goes. 
    Thanks again for sharing, so nice to hear that you're doing great and very encouraging for me!  
    Good luck with your daily health challenges and keep up your awesome spirit. ��

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