Its been a while but I thought I would update on my mums latest scan. A little bit of history. My mum was diagnosed with 3C in June 2018. She had Carbo/taxol for 6 rounds with debulking mid point. She had her final chemo at the end of Dec and has been been on Avastin since (it should have been her final one on Thursday but it was cancelled). She was never NED with the lowest her Ca125 being 49 (she had microscopic cells on her bowel) Long story short her CA125 has been going up with it now being in the 700's. Her latest scan shows a little fluid in her stomach (her main symptom was ascites) and microscopic cells on her lung, liver and bowel. As her CA125 has been rising we were prepared for to be given more chemo but at her appointment with her consultant she was told because she had no symptoms at present and because she was feeling well in herself they suggested putting her on Tamoxifen. My mum agreed but now she is wondering if she has made the right decision? What experiences have people had with Tamoxifen and has it worked? Should she have pushed for Chemo I'm so sorry for the long rant. I hope everyone is doing ok ❤
Sarah xx
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I have never had Tamoxifen, but it is usually prescribed for women with oestrogen related cancers and it can be very effective, but one would need to know that, before trying it.
My opinion, and this is only MY opinion, since your mother had been off Platinum treatment since January, is that she should ask for Chemo and the Chemo usually prescribed is a combination of Carboplatin and Caelyx- Carbo/Caelyx. This duo is usually easy to tolerate, if you plan on just resting for one week after Infusion and be up and around for nearly three weeks.
You do NOT lose your hair and you usually do not get Chemo fog, so you can think and work and drive, almost like normal.
With such a high CA-125, and fluid building up, I wouldn’t want to give those little buggers a chance to take over any other parts of your Mum’s body.
How are you doing? Thank you for replying. I agree with what you are saying. I think she had got her head around needing more chemo and was expecting Carbo/Caelyx as her CA125 starting going up in May which would have just been just under 6 months since her last round of chemo and that was the chemo a different registrar had mentioned 3 weeks ago but the registrar on Thur has said her consultant said it would be Carbo/Taxol again as she had a good response last time but they wanted to try the tamoxifen first.
My mum is a doer so I'm not sure she'll just want to wait either, they just caught her off guard and threw her a little because she wasn't expecting that as an option.
Thank you so much Laura as usual for your opinion and input. It means a lot and I'm keeping everything crossed for you as well xx
Sjg, Please get a second opinion! This doesn't sound right to me. FYI, there is NO "watch and wait" in US. The thought is that if you wait you'll have MORE disease to battle, chances of knocking it back get slimmer and ascites or pleuridesis can develop.
Hey thank you for replying. My mum has rang her CNS to see if she can actually get to see her Consultant as it was the registrar that she saw on Thursday, although the registrar got up and left the room to go and speak to my mums consultant so we are assuming he has agreed to the course of action. My mum has more questions now so needs to speak to someone as they don't want to see her back at the hospital for a further 6 weeks. We just got completely thrown on thur as it was the last thing we were expecting.
I just want to wish your mum all the best and I hope she manages to see her consultant sooner rather than later. I also had my appointment on Thursday which I had mixed feelings about and havent written about yet. We all need clarity and we deserve it. I hope your mum gets the answers that will put her on the right path. Take care
That you for taking the time to reply. My mum seems better today. I think it was just more confusing because she was expecting to be told that she is having more chemo (even though theres a 3 to 4 week wait to start 🙄) but then she was given Tamoxifen. I hope you get answers as well molly. Like you say you all deserve clarity.
I was really surprised that there is no Watch and Wait policy in the US. I can't stand watch and wait and think it's the cruellest thing to ask any patient to put up with . I always thought that we followed the US with regard to treatment etc. When did it change and can you let me know of anything I can pick up online on the subject.
I hope you are doing OK at the moment. I hope to finally put up a post this week. Take care
For standard of care in US google Seattle Cancer Care Alliance, MD Anderson Cancer Center, Dana Farber Institute, or Mayo Clinic. These are all highly respected Cancer treatment centers in US.
I first battled breast cancer in 2006. There was no policy of "watch and wait" at that time. I was diagnosed with OC November 2015. There is no "watch and wait" policy now either. I have never heard that term spoken in US in my 13 years of cancer vigilance.
There's no Watch and Wait with breast cancer here either. It's just with OC or PPC. As far as I'm aware the reason is that treating too early makes no difference to how long you survive. They prefer to act when you have new symptoms as the longer you put off chemo you have a better quality of life for longer, at least that's my understanding. I'm open to correction here. I have always found it an upsetting concept. Thanks for your replies. Take care. X.X 💚💕
Each of our cancers is unique. I am somatic BRCA 1 plus a couple of other mutations which makes my cancer highly sensitive to chemo. So, for me, since CA125 is a reliable indicator, treatment starts right away so we kill it faster so I don't get ascites or pleurodesis. Also, my doc says the farther it spreads, the harder it is to kill/contain.
Maybe it depends to what degree the recurrence is. I’m on watch and wait. I had recurrence 10 months ago with several small nodes to 8mm along my arteries and since then my CA has dropped from 128 to 96, report states marginal progression so my Oncol suggests that we wait until or if it shows up in major organs..it seems to be very slow growing. I’m happy with that. PET and bloods every 3 months. In your case I would definitely be looking for review of that decision... I wish you and all the ladies battling with recurrences well. I live in Australia.
I'm pleased to hear your doing well and thank you for replying. Your Onc seems like they are on the ball and that's great news. My mums Onc said she could have chemo but they would recommend her trying Tamoxifen first because she is feeling so well and treatment is also about quality of life?!? Like my mum said it's tough because you have to put your trust in the professionals because you assume that they know best and basically all she kept saying was that its microscopic, but sadly we all know it doesn't stay like that for long 🙄.
Watch and wait is often advocated when you haven't responded well to chemo. As your mom didn't reach remission, she is most likely platinum and taxol resistant.
You can get good quality of life during watch and wait. I am platinum and taxane resistant. I've had 25 months of watch and wait with active HGSOC, without tamoxifen or avastin. I have to have 3 weekly ascites drainages, but aside from that I get on with life. An ascites tap is much easier to handle than chemo in my opinion.
I am currently using repurposed drugs as per Jane McLelland's book.
I may use chemo again, at a point when my quality of life dips, but until then I'm enjoying bonus time!
Wow 25 months is brilliant (long may it continue) my mums last scan after she finished treatment showed stranding on her bowel and an enlarged lymph node (lymph node doesn't appear to be anything of significance) but at the time they couldn't tell if the stranding was scarring or remaining cancer. She has other health issues (graves disease) which affects her CA125 so they can't pin point when it started rising due to a recurrence. The registrar she saw 3 weeks ago said she would be having carbo/caelyx due to recurring so soon but then the registrar she saw on Thursay said her chemo would definitely be Carbo/Taxol.
I'm so pleased to hear things are going well for you at the moment.
Hi Sarah there is no watch and wait here in the US I knew my CA 125 was rising went to 64 and it is a very good indicator for me. I am with MD Anderson and was only in remission for 6 month. The pet scan indicated TWO enlarged lymph nodes. They did a biopsy on one to see if it mutated it didn't so straight to carbo/caelyx and by third session CA125 down to 15 and scan negative for cancer Did the next three sessions and was put on Olaparib Jan 2022 I am braca negative Best of luck and wishes get a second opinion and keep pushing so much has changed in the Ovarian cancer world
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