Nearly three years on... reflections

[BellmoreBelle]

It's nearly three years since I had life-saving surgery to remove the pair of massive tumours that my ovaries had become, and a few other body parts besides. Up until diagnosis I'd been perfectly healthy, so it was shocking to suddenly be in this terrible state, and to then go on to have carbo/taxol chemo, and be enrolled in a clinical trial to boot.

Today I feel magnificent - I am still here, and I've picked my old life back back up, but with a new appreciation for the blessing of every day.

I don't take any particular talismanic supplements, I'm just back to eating the simple diet I love - loads of veg, high protein, low sugar, fizzy vitamin C+D, and getting out and about in the fresh air. All exactly as I used to before being through this nightmare.

And here's the thing - medically, I would be considered a positive statistic for chemotherapeutic intervention, and for that particular clinical trial, because I'm doing so well.

Except, here's the thing: I refused the mid-chemo (post third cycle) CT scan. When I said I wanted to stop chemo at that point, I was told I had a 10% chance of survival by my oncologist. So I endured a fourth, and then had an allergic reaction, so I stopped then. And I dropped out of the clinical trial before I even started.

But I'm still here. I might well have endured a further 2 rounds of chemo (and they would have been hell - due to my allergic reaction, they proposed slowing down the infusions even further - I was already on the ward for 7 hours every chemo day - heaven knows how much longer it would have taken!), and I might have gotten through to the end of the clinical trial successfully, and still been here - and in both cases, I would have been toted up as a success in the statistics - for chemo, and for the drug in the clinical trial. But I'm still here, and I DIDN'T go through all of that extra toxic exposure - for no good reason, as it turns out.

I can, and do, attribute my survival and current good health to the initial (brilliant, life-saving) surgery; of course, the partial course of adjuvant chemotherapy may well have also contributed, but I'll never know for sure (and my CA-125 had already dropped to 14 prior to commencing chemo).

Quite simply, I don't fit neatly into survival statistics - and maybe you don't either.

Just my thoughts.

Carol

[Katmal-UK]

Hi Great post. Can I ask what clinical trial you were offered? I have to say it sounds like you are doing great, long may that continue! xx Kathy xx

[BellmoreBelle in reply to Katmal-UK]

Thanks Kathy! To be perfectly honest, I was in such a terrible state when I signed up (sleep-deprived, nauseous and starving), I do not know what the trial was for! I have been trying to work it out from the timing (from what other ladies have said) but will ask the oncologist at my next check-up. xx

[Hidden]

Totally agree - none of us Teal ladies fit in to a stereo typical "statistic" we are all different, and react differently to chemo even if we are having the exact same type. Good luck with your remission, long may it continue. x

[marylondon]

We all seem to have our own individual pathway .

That is great news that you are doing so well . Long may it continue.

[BellmoreBelle in reply to marylondon]

Thanks Mary, lovely to hear from you! x

[Seasun36-uk]

Hi Carol,

You are doing well, long may it continue!

May I ask - did you decide on daily aspirin yourself or was it suggested to you? I like fizzy Vit C too!

Linda x

[BellmoreBelle in reply to Seasun36-uk]

Hi Linda, I always did take a daily low dose aspirin (a standard 300mg tablet broken into 4 = approx. 75mg/day) for years before diagnosis; stopped for the duration of surgery/recovery/chemo, then picked it up again. Everything I've read to date seems to indicate this does no harm, and may well do some good! x

[Seasun36-uk in reply to BellmoreBelle]

Thanks Carol.

I talked about this with my GP, and showed him an article on the possible good effects of aspirin on OC (prevention of recurrence). He said it was interesting but to ask my Oncologist.. Just to complicate things, my bowels aren’t great. Anyway I will bear it in mind & ask at my next appointment.

Lx

[BellmoreBelle in reply to Seasun36-uk]

Good luck Linda! I did find a paper on low dose aspirin which seemed to indicate it was useful, but we really don't know about how specifically useful they will be for us as individuals. Let us know how you get on! x

I can find a link if you are interested.

Carol

[Artgreen in reply to BellmoreBelle]

I do the aspirin and it is being trialled as an anticarcinogenic for many cancers. It’s also part of the “How to Starve Cancer “ protocol. It stops the cancer cells establishing a blood supply . A x

[Lyndy]

Really interesting and very positive post Carol! Thank you.

I think many of us will relate to not quite fitting the definition! As I understand it no one really knows what the ideal dose and number of cycles for chemo... and from what we know it is likely that the stats are worked out on the basis of the average male and titrated down for females!! I suspect that this is one of the areas of development for cancer treatment moving towards a bespoke approach using the least possible toxic agents.

No matter how you arrive at it... progression free survival is everyone’s wish...well done! xx

[BellmoreBelle in reply to Lyndy]

Thanks Lindy, once again, I agree! They don't really know what the most effective dose really is - we are all guinea pigs in this game. I do hope that immunotherapy becomes the go to solution as soon as possible, and everyone gets an immuno-specific, targeted therapy based on their individual genome. It WILL happen. Carol x

[Lind58]

What na uplifting post. Wishing you all the very best

[Lindaura]

You are truly one of the lucky ones.

I was certain I was going to be also.

Vegetarian for 38 years, daily aspirin and vitamin supplements.

I went Vegan after first line treatment and felt like a million bucks, with curly blonde hair and a CA-125 of 11, CT scan showed no visible disease.

I ran around town like super woman, took the reins back for my business, began the re-edits if my novel with my daughter’s help and thought I had it licked.

Still recurred with in 6 months.

Just the luck of genetics, I now believe.

BRCA1 positive.

Oh well,

Best wishes for your continued good health,

Laura

[BellmoreBelle in reply to Lindaura]

Hi Laura, genetics definitely does come into it. I am still waiting to hear my results as part of the 100,000 genomes project. I am germline BRCA-negative but I don't believe my tumour tissue was tested. I most likely have the TP-53 mutation but the rest, I don't know yet!

All the best, you sound amazing.

Carol

[mrstadpole]

Very interesting post Carol.Would you be able to send the link for aspirin and OC as I would like to mention this next time I go for my check up?

I take it that your dose of Vit C is something you decided on or was it recommended by the OC?

Thank you and all the best

Ann x

[BellmoreBelle in reply to mrstadpole]

Hi Ann,

There's a summary:

hsph.harvard.edu/news/press...

And here's the actual paper:

“Association of Analgesic Use With Risk of Ovarian Cancer in the Nurses’ Health Studies,” Mollie E. Barnard, Elizabeth M. Poole, Gary C. Curhan, A. Heather Eliassen, Bernard A. Rosner, Kathryn L. Terry, Shelley S. Tworoger, JAMA Oncology, online October 4, 2018, doi:10.1001/jamaoncol.2018.4149

Here's an additional data analysis:

academic.oup.com/jnci/artic...

I am not sure if you will have access to the academic papers - I am at a university, which subscribes to these journals, but I can always download the PDF for you, please let me know!

Carol x

[BellmoreBelle in reply to BellmoreBelle]

Oh, and I've always taken the megadose of vitamin C (1000mg/day). It may well be placebo effect, but I rarely catch colds, so I'm with Linus Pauling on this one...! (There is no harm in this, it simply passes through the body.)

[mrstadpole in reply to BellmoreBelle]

Thank you Carol.I musty admit I had never really been ill or visited the GP until I had cancer.May give it a try.

Ann x

[mrstadpole in reply to BellmoreBelle]

Thank you for the reply.x

[Lavender2016]

Very interesting that - I had life saving surgery which was caught early stage 2 b and am doing adjuvant chemo - started off on carbo and taxal but had a severe enough reaction just to be having carbo which seemed to bother me at first as I thought I’d need both but assured not be medics - my ca125 after surgery was 19 coming right down from 455 - still in recovery as only 8 weeks post op and 1 chemo down 5 to go but nice to hear you feel well again xx

[BellmoreBelle in reply to Lavender2016]

(I love lavender!) Well done you for getting through that first chemo. I do think they hit us with the highest dosages they calculate we can tolerate, and then adjust downwards (or withdraw) based on how we tolerate/react. I had my final (i.e. fourth chemo) taxol dose reduced because my digital neuropathy was growing steadily worst and I was scared of the possibility of it becoming permanent, which is not unknown, unfortunately.

2B is very unusual!

Hang in there, good to hear you're doing okay!

Carol x

[Lavender2016 in reply to BellmoreBelle]

Thanks carol you too xx

[Cropcrop]

I’m so pleased your so well and living a happy healthy life.

It’s so true that no two of us are the same and one size does not fit all, what works for one doesn’t necessarily work for another. Whatever it takes for each one of us is what’s needed but hopefully this is being addressed more and we will see a day when there will be a treatment regimen that suits each individual and works for them.

I hope you continue being well and disease free.

Take care, big Friday hugs ❤️Xx Jane

[BellmoreBelle in reply to Cropcrop]

Thanks Jane, Friday hugs for you too. xx

[bluepeterella]

Very interesting to read, thank you.

I think the 'less is more' approach to chemo suits quite a lot of people better, but it's hard to go against what you are being told. I started out as a well-behaved patient but I am not so much any more! I have had my cycles reduced both times now, as well as having my dose reduced 2nd line. When I asked the oncologist 'why do I need to have 6?' the answer is simply that it's because that's how the studies are carried out. Post-chemo I've now decided against Niraparib as the stats alongside the side effects just didn't look worth it for me.

I'm only just 3 months out of 2nd line chemo so I'm not claiming any kind of 'success' here, but for now I feel great. I'm running and horse riding and off ski-ing in December. It can feel like a great risk going against the mainstream advice, but as long as you have a balanced outlook and not rejecting all treatments, I don't think it's a bad thing at all.

[BellmoreBelle in reply to bluepeterella]

Love it! I was well-behaved to start with as well, but I very quickly started to question the "six rounds" protocol, as the side-effects grew worse with each cycle. I could find nothing concrete in the literature about it, and I second guessed exactly what response I'd get from the oncologist when I asked the question - sadly, I even guessed how he'd misquote stats to try and scare me into continuing with chemo (Using his maths, if I did 10 cycles I'd be 100% cured!!!). And, like you, after reading up on the side-effects of the clinical trial, it was the list of side effects that put me off.

I do believe it's very important to "own" your treatment and actively engage in it. I admit to having a science background and also access to medical literature which means I can research on my own and come to an informed decision, which may not be as easy for some others.

To me it's very clear that while the NHS is utterly marvelous, there are way too many of us going through this for them to sit down with us individually and actively tailor the perfect treatment regime - they are working with tried and true protocols which are their best guess at what will work in a generic sense, at least for this moment in time. We are, in a very real sense, the guinea pigs for the next generation of cancer-sufferers.

[bluepeterella in reply to BellmoreBelle]

What I also feel is that the outcomes are presented from the outset in such a negative way. I have been told I am incurable, that my treatment is purely palliative and that my remissions will be shorter each time between recurrences. For me this meant I had to question everything and find my own path.

By the way I take dipyridamole on a daily basis, so I don’t use aspirin regularly, but I think they work in similar ways.

[BellmoreBelle in reply to bluepeterella]

This is exactly my point. We get pulverised by negative statistics when we are in a very vulnerable state, reeling from surgery and treatment, when its easy to be pressured into accepting and going along with what we're told. But it's OUR body, and we have the right to decide for ourselves. None of this intervention comes without a cost, and it has to be trade-off - what we will, as individuals, accept and tolerate. I saw in another post of yours that you had the same creeping digital neuropathy and tinnitus that I experienced, and that's what made me finally decide to stop. They could not guarantee that it would reverse. But it was doom and gloom all the way from oncologist, registrars, and CNS, every time I pushed back. Always quoting survival rates, sometimes stern, sometimes scared! I knew it was a risk, but I still chose to take it. It's my choice. Time has proven it to be a good one, but it may well have been a different story. I am kind to my body because it has been good to me all these years, and chemo was utterly brutal. I remain convinced that in the future, hopefully sooner rather than later, we will look back on this barbaric practice and wonder why the hell we subjected people to this torture, in the same way that we look back at historical medical treatments and shudder.

The only thing I regret is that, as a drop-out, my survival is not in there helping to drive the collective survival rate up - that ultimately meaningless single number which can't possibly represent every single woman's experience - nor even a generic woman's journey - because there's no such thing.

[Mary1122 in reply to BellmoreBelle]

I completely sing off your hymn sheet. For me going through the trauma of diagnosis and treatment made me very strong. I am well researched and I am a strong believer in individualized care. (This is after the event. )Now I question protocols that don't make sense to me, I have challenged my Oncologist on chemo dosing and don't believe in their one size fits all. I am currently moving to a new gynaeoncologist as I am sick of the doom and gloom. I come out of each visit feeling down. In reality I am doing brilliantly. (But never encouraged by my Dr. ) I have a full purposeful life. Heading to 4 years post surgery with no evidence of disease . Onwards and upwards.

[BellmoreBelle in reply to Mary1122]

Lovely to hear this Mary! Challenge everything! I really had an issue with my first oncologist, who was definitely of the doom and gloom variety, which was especially terrifying when I was first told I must have chemo. My first question was, what if I don't? And then the misapplication of scary statistics commenced. Three chemos on, a little older, and much wiser, I was ready to question the need to continue - and had figured out exactly how he would misquote the statistics at me. What was incredibly interesting is that, once you stand your ground, that's it. It is your right, and they let you do it. It was a scary but liberating moment when I turned up for my pre-chemo blood test, but then told them I was declining the next day's chemo. It was the "Do not put in the request for the chemo," which was the defining moment. In the meantime, that oncologist has moved on into research and the new one is much better. She listens. Plus, by now, I've proved my point!

[Jo-Jo1-UK]

Lovely to here your doing so well. I’m 3.5 years along the line too with no recurrence 🙏🏻. I did endure the dreaded chemo 6 times with all the horrible side effects (sepsis twice plus other things!) Have to say I never thought to challenge the protocol, quite brave of you, I just focused my mind on getting through it! Hope you continue to stay well. Best wishes, Jo xx

[Artgreen]

Wonderful. Owning your own approach to treatment seems more and more important to me. I was encouraged to have the chemo which I did but still wonder 7 months on if it was the right decision as my low grade serous carcinoma is pretty chemo resistant. On letrozole now as it’s strongly oestrogen receptive but throwing everything I can at it using the How to Starve Cancer (Jane McLelland) protocol.

My oncologist and GP are open minded and tolerated my request for them to read it as other oncs and GPs are prescribing everything and finding it a very interesting approach. NICE however aren’t interested in it.

It would be so great if we had a consistent attitude from those we trust to save our lives.

Asking opinions rather than insisting is better obvs 🙄 but some are vehemently against it.

So glad your approach is working for you. It’s my first cancerversary next week.

Love

Alex x

[Mptelesca]

Good for you! With all this information thrown at us when diagnosed we are so afraid to miss a step or treatment here and there. I live that you took matters into your own hands and proved you are not a statistic. I hate statistics. Our fingerprints alone tell us we are as unique as snowflakes.

Keep going! Thank for for sharing your positive news.

Xox

marisa