Mum has completed 5 rounds of carbo/taxol and is recovering from successful IDS (CC=0). She has 1 round of chemo left and we are waiting on the results of genetic screening prior to a decision on maintenance therapy. Her CA125 has dropped from approx 1500 to 17 prior to the 5th round of chemo and subsequent surgery. The overall feedback is that despite the extent of her disease on initial presentation she has had a very good response to chemo and the surgery resulted in no visible macroscopic disease being left which is wonderful. We all feel hugely grateful and know this was far from a given. Mum has been a trooper.
Until now it’s been a case of getting through the treatments and surgery day by day. Now the question of what to expect going forwards is coming up. Clearly defining prognosis is not straightforward and will depend on a host of factors some of which we don’t fully understand yet. That said I’d be curious to;
1) understand the range of peoples experiences and
2) get a feel for how patients and their caregivers interact with the uncertainty.
Has anyone experienced a complete and lasting remission? How successful have maintenance therapies been? In instances of recurrence how manageable have subsequent chemotherapies and surgeries been? What do peoples monitoring regimes involve? How do people deal with concerns over recurrence?
Apologies if this is a difficult topic and with thanks for any thoughts you might have.
Written by
Donnie21
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It depends on a combination of factors including but not limited to;
-the stage when diagnosed
-the grade
-the type of OC
-the success of surgery
-the effectiveness of the chemo
-the age and performance status
-the use of maintenance therapy such as Parp inhibitor
-And most importantly, the fact that you are not a statistic...
Stage will tell you the most about your stats.
The lower the stage the lower the chance of it coming back.
The more effective your response to treatment e.g. your surgery removed all traces, you completed chemo, the higher your chances of a longer /complete remission.
Please remember the current stats for OC are up at least 5 years out of date. So they predate the Parp inhibitor maintenance therapy.
Parp Inhibitors are prolonging women's remission longer than ever before. Even after it recurs.
They are even 'curing' some women. At the very least they are stacking the odds in everyone's favour.
Cancer is a mental battle just as much as a physical one. The reassurance you seek can't be found.
I did full debulking surgery.
And 6 months of carbo taxol chemo.
This month I have just finished 2 years of parps.
I struggle every day with the fear of how long do I have until it returns?
Will it return?
How do I plan for a future so uncertain?
The only thing that helps me if is knowing that today I'm ok.
Right now, I am good.
That's all any of us can wish for.
Hope this helps
R x
Please DM for actual stats and links to research papers
I was clear for 11 months and taking parps before it returned halfway through 6 rounds of chemo CA125 down from 600 to 249 after 2 rounds just going with the flow living life to the best i can and yep still fighting xxx
Hi Diana. I am just completing 2 yrs Olaparib and so scared to be without. Asked to remain on them but told ‘no. Too expensive and no data available. How do you now cope, being OGD the PARP?
Hey RoseMS, so the data shows that after two years on parps the recurrence rate doesn't change. So there is no benefit at all for continuing in most cases. Of course, there are exceptions and studies continue.
But what they believe the data is showing that any cells that might have escaped surgery and /or chemo by going dormant or 'sleeping' through treatment, and 'wake up' during the two years on parps maintenance treatment cant survive.
So, in a non-medical person's nutshell, two years is enough time for any stray cells to wake up and be destroyed by the parps.
So there are no more cells to create a recurrence after two years on parps. So there is no benefit in continuing to take them.
I have coped - it's been 10 days since I stopped - by knowing I've given it my best shot.
That these new drugs are changing the stats for OV.
That we are at the forefront of new survival rates.
That there is now more chance I will be one of the 'lucky' ones.
And even if I'm not, it has delayed recurrence for so long that I'm in a much better place now to deal with it if it comes back.
I'll know what to expect. How to deal with the side effects. The emotional highs and lows. I know I can get through debulking surgery and 6 months of carbo taxol. 2 years of parps.
Before being diagnosed, I didn't know if I could survive. Emotionally as well as physically.
And that was the most terrifying thing. That's what kept me awake at night and in a state of constant panic for the first year at least.
And now when I see others diagnosed. I recognize the overwhelming terror they are trying to cope with as they navigate a journey they never wanted to be on, but have no option but to take.
And I know that it gets easier.
That you learn to live with the cards that you are dealt.
That there will still be good days. As well as very, very bad ones.
That you can do it.
That you will sleep, laugh, and love again.
That life will feel more precious.
That I can rock short hair.
That it's easier to discern what really matters.
And you will have less patience than ever before for the things (and people) that don't.
Thanks Diana. Would like to keep in touch with you especially as we have both hit our 2 year PARP limit. I was diagnosed 3c HGSOC December 2019: carbo/taxol (6) with mid way debulking. BRCA2 somatic only. I have had nightly abdo discomfort for the whole 2 years on a PARP waking me up several times a night. Perhaps when off the PARP this may disappear?! I didnt have any problem otherwise or side effects, well tolerated. May I ask, what was your circumstances, and if you were also given AVASTIN with chemo? Thankyou.
31st December 2019 formally diagnosed with Serous Ovarian Cancer Stage 3b High grade
BRCA 1
Treatment
Full debulking surgery status R0.
6 rounds over 7 months of carbo taxol chemo - delayed twice due to low bloods
2 years of just Olaparib.
Two dose reductions on Olaparib. Joint pain, insomnia, weight gain, nausea, mouth ulcers, fatigue, indigestion, and a brief hospitalisation for 4 blood transfusions. Sounds much worse than it actually was. Much easier than IV chemo.
Was diagnosed in Brighton, but was in the middle of moving to London so transferred care to The Royal Marsden. And had all treatment there.
I transferred to the Marsden also after initial treatment by choice. Please can you tell me what ‘surgery status R0 is? Now on 3 monthly checks, moving shortly to 6 monthly. Ive been on full dose Olaparib 600mgs throughout, but have reduced my last months prescription to stay longer on the drug. Many women are on a lower dose so I thought I’d do this myself: didnt consult Onc on this as know what the response would be!
So we both hit the pandemic and cancer at the same time, what a year 2020 was for us! I was hospitalised with Covid 2 weeks after debulking in April 2020. I went back to work, but P/T by choice.
I have never seen that reference before and I even have my surgery report! My debulking was said to be ‘optimum’ no macroscopic left. How can they know there is no microscopic left at surgery: I thought it was only the naked eye to survey the surgery site? However in my case, the cancer was all over the omentum which was removed. Had tumours to both ovaries and also an appendix tumour type.
Thank you very much for your considered, thoughtful and detailed reply. Your comments about Parp inhibitors and current stats for OC is well taken. Wishing you the very best xx
Hi Donnie21Your Mum’s ca125 has fallen dramatically, so it’s probably a good thing that she being tested for genetic mutations. I had a similar drop and this was later linked to my BRCA 1 status…I am very sensitive to carboplatin.
In my experience it’s really difficult to call on a prognosis. If I had asked when I was diagnosed they would have said 18 months (stage 4 hgs) but seven years on I am currently well and on Olaparib after my first recurrence.
Living with uncertainty is more tricky but if you think about it we all live with uncertainty, but some of us know that better than others 😊.
Enjoy your time with your Mum, especially when she’s off treatment.
Thanks for your thoughts and advice. Yes it will be important to get the results of the genetic screening. As far as I am aware there is no history of breast or ovarian cancer in the family but that doesn’t rule it out and I gather that’s not to say the tumour itself won’t have developed a mutation of relevance.
Glad you are doing well and wishing you the best xx
That’s interesting, I knew of only one incidence in my family…my grandmother had OC but no BC history at all…I don’t think I would have been considered had it not been that there was a study in East Anglia of everyone who developed OC or BC that year xx
I had my debulking April 2021 followed by 6 Carbo/taxol like your Mom I had a successful debulking no lymph node involvement and my CA125 was 4200 when diagnosed went to 7 after chemo and has stayed there for my last 3 draws I’m 3B low grade Endometroid a bit rarer I had a CT scan when I finished chemo clear I am BRCA negative. I have my blood draw every 3 months see my GYNO and GYNO/ONC every 6 months I am currently No Evidence of Disease… For me it was an adjustment after chemo was done the fear I think is always there but I try to not over read stuff on the net luckily they have a lot of support for new survivors it’s getting a bit easier your Mom has been thru a lot have to give herself time to adjust physically and mentally abs seek support if she needs it.
Thanks for your reply. Sounds like blood draws for CA125 is a primary tool used to monitor along with repeat scans if warranted. Yes, as you say it will take some time for Mum to adjust both physically and mentally and I completely agree having some support is really important.
Glad you are Ned and wishing for it to continue. Xxx
Thank you! I wanted to add a CA125 is not always a good marker for certain OC subtypes but my Gyno/Onc said when it drops that much during treatment like mine and your Mom's is a good sign and a reliable monitoring tool. I found that I was pretty much on autopilot during chemo then I was on my own that was a hard adjustment more emotionally well meaning Friends said "that's great all behind you" eventually I'm finding the new normal I got involved with my local NOCC chapter I'm in the states attend monthly brunches and this past weekend did a Harley fundraiser first time on a bike its really helped me being among Teal Sisters who get it. Hope this helps.
Hi Donnie, As you say prognosis depends on a whole host of factors and we are all so different.
My experience is I was diagnosed with a high grade serous OC 3b in Feb 2016 and am BRCA2 positive.
I had debulking surgery followed by adjuvant chemotherapy Carbo & Taxol.
Had a recurrence after 9 months so had 6 x Carbo & Caelyx.
CA125 started rising again after a further 9 months and CT scan showed progression so started single agent Carbo.
Then, from Feb 2019, I had two and a half years of Olaparib maintenance therapy before next recurrence. Had single agent Cisplatin for 4th line treatment. Sadly this didn’t work as well as I’d hoped so now considered platinum resistant.
I’ve just started weekly Paclitaxel so keeping everything crossed.
Overall I’ve had loads of treatment over the last 6 and a half years but I’m still living life to the full and holidaying between treatments. I cope with the uncertainty by having my CA125 monitored every 3 months when I’m not in treatment. It’s a good indicator for me, lucky really as I’m usually asymptomatic but when it starts rising my nurse organises a scan.
If you’re in the UK I suggest you make friends with your Mum’s CNS. They are an invaluable support if you have concerns when treatment finishes. Mine attends our monthly gynae cancer group meetings at The Maggie’s Centre. It might be worth seeing if there’s something similar your mum could join.
Sorry this is such a long post, but I hope it can reassure you and your mum that it’s possible to live with OC even with having several recurrences.
I wish you and your mum the all very best for the future. Jan x
Thanks for your reply and all the information contained therein. It sounds like the Olaparib maintenance therapy worked well for you. Your advice about making friends with Mums CNS is spot on and they have been wonderful.
Thanks for the good wishes and hope things go well for you. Xxx
Fantastic results for your Mum going forward.This is, generally an unpredictable disease(both positive and negative) with each person' s journey being pretty unique . Yes group members can relate and advise on specific drugs or procedures that may well be will relevant to your Mum's next step when she knows what it is. We can retell our experience in a particular area of treatment with very wide ranging experiences and results.What I hear from your post is what we all go through 'wanting to know what the future holds ' There are too many anomalies to summarise for you.
My Oncologist from day 1 of diagnosis has only ever dealt with the next step as oppose to my desperate desire to know the 'but if this happens where do we go from here?' I understand why she does more than ever now because after reading posts in this group over 2 half years know it would be completely overwhelming to cover the possibilities.
For now celebrate your wonderful news that everything has gone so well.
Take life in the present and enjoy it with your Mum.
I have a wonderful family who like you in order to offer me support wanted to know all possible outcomes they now understand we deal with what 'stuff' when we know categorically what's next.
Once again I would say don't waste too much time looking to the medical future work with positivity on that score and live life in the present with plans for future good stuff.
Really appreciate your thoughts and experience. Great advice and makes a lot of sense. We are in a place of gratitude and as our little border collie tells us everyday living in the present is a good place to be.
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