My Ovacome
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The beast is back but we have a plan and I asked about why OC recurs so often as I promised I would x

CT has shown ‘cling film’ like tumour over a part of my bowel, I had a stoma during surgery and it’s still working ok but my Ca125 has risen again from a couple of weeks ago

Onc said no tumours in any organs, bones or infiltrating bowels and no ascites (phew) and had my daughter, sister and I in stitches when he said everything else looks healthy and normal!! I think he thought we were all mad when we burst out laughing at that statement!

Anyway plan is weekly taxol for 18 weeks and I may be able to go on a brand new trial as participant number 1 of 30 to take alongside the taxol which stops blood vessels forming in tumours and then a maintenance drug after the 18 weeks. I will find out Monday if I’m eligible for the trial x

Anyone out there had weekly taxol? I’d like to know what to expect as the muscle pains I got with first line carbo/taxol weren’t pleasant but were bearable knowing I’d have a 2 week reprieve every cycle! Not sure if they were caused through carbo or the taxol so any advice would be great ladies!

I asked why OC recurs so frequently and he basically said surgery is the biggest way to remove mutated cells but in some ladies microscopic cells remain and it’s these that cause the issues and start growing wherever they are left! He really didn’t explain why they don’t completely get destroyed with chemo in everyone but actually said OC is very chemo responsive and that confused me a bit!

So I’m a bit gutted that I won’t be able to go on holiday with my sister as planned next month, I’m going to be bald again and feel like poo until September but I’m determined I’m gonna give this beast a bloody good beating! I hate this disease!

I’ve had some wine tonight and planning a gin and tonic night with my bestie tomorrow! Somehow this recurrence is upsetting me more than I expected 😥 I’m scared xx

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Sorry to hear that you’ve to restart active treatment again - wishing you well x

Ps guess some people’s cells don’t get the message that chemo is supposed to put them to sleep - thanks for asking x

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Thanks for your good wishes x I will hopefully be seeing a Prof on Monday re trial so will ask him the questions about recurrence too x

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Hope you get good news about the trial x

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HI BeeWild. So sorry to hear that you have to go through chemo again. Wishing you the best...I had the weekly treatments (18 weeks of dose dense therapy - Carbo/Taxol) and found them to be tolerable. The day of treatment, I was fine (probably the steroids), the day after, I was tired but back on my feet again by the next (though slow). I did not have much nausea (took the meds to prevent), lost my hair (of course), had some neuropathy and varying blood cell counts but overall, found it very tolerable. I hope you do as well.

Sending you strength....

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Thank you that’s helped a lot, I was imagining I’d be feeling yuk the whole time with no good days xx

I just want a decent remission period after this chemo, how long did this regime get you ?

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I'm presently in remission - going for my six month follow up next week.

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That’s brilliant thank you for sharing with me x

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Hi

I’m so sorry it has come back. Unfortunately for many of us it does. Recurrence can be very upsetting. I recurred after eight months. I just finished second line in Feb and I’m having tests now to see if it’s back again already. Consultant felt fluid in tummy. I’m preparing myself that it is back.

Keep positive. Think of it as a chronic illness which has flare ups now and then.

Big hugs xxxx

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Thank you Suzanne and I will keep everything crossed for you x

I also felt mine was back once I got the first rise in Ca125 even though I feel well!

What chemo did you finish in Feb? I finished my first chemo course of carbo/taxol on 5th Jan so I’m gutted I have to start again! Just hoping I get a longer remission this time xx

Big hugs and fingers crossed for you xx

Bev

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Hi Bev. First line I had carbo and taxol and avastin. Second line I had carbo and taxol again. I reacted with the carbo though. Had an anaphylactic shock so just had taxol. I can’t have carbo again.

This time if it is a recurrence I’ll have taxol again my consultant said. He said I can have niraparib too which is a maintenance tablet. Gives longer remission time.

I’m thinking of you. Keep well. Keep positive xxxx.

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Thinking of you too and sending you a huge hug while you wait to find out xx

Hope you can distract yourself as I know the waiting is the worse time x

Good luck

Bev x

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I had weekly taxol back in 2015 the weekly dose is smaller than the dose they give you every 3 weeks and some people on weekly taxol were 3 weeks on then one week off.

I did lose my hair after 3 weeks and I did suffer with joint pain and peripheral neuropathy but it did take a few weeks for that to build up. I did not really suffer with any sickness and I found the treatment made my bowels loose.

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Thank you for that it’s helpful to know what to expect.

Hope you are ok now xx

Bev

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Hi Beewild,

Like Almalyffe, I had dose dense carbo-taxol (weekly for three then one week respite) with Avastin every 14 days; my body coped better than in the 21day cycle but did feel like a wet floor rag rung out in the bottom of a bucket at the end.

Re OC being so hard to kill with chemo my onc said pretty much the same on importance of surgery to get it all out as any remaining cells aren’t all killed by chemo as they go through their lifecycle. Any that survive develop a resistance to that chemo; plus our bodies can’t be repeatedly hammered with carbo & taxol as they kill too many healthy cells at the same time; they simply buy time while, hopefully new ways, eg immunotherapy, maybe developed which can kill the cancer cells by a difference mechanism.

If it helps, my GP told me my job was to focus on growing healthy cells...I found doing this made me feel happier & less exhausted than fighting the thing. My surgeon also said apart from the tumours I was really healthy inside & this helped my mantra of “this cancer is only a tiny part of me, it is not the whole of me.” Together with the focus on growing healthy cells this, for me, combats my ‘down’ & tough days.

Really warm wishes and good luck,

Lesley

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Thank you Lesley that’s a really good way to look at things and I’ll definitely give that a try x

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Lesleysage, Yours is the best statement I've read about how to think of the treatment process! Focusing on growing healthy cells is affirmative! Constantly thinking of KILLING the bad shit cells gets so very, very depressing. Thank you! I have to keep fighting hard to not let this miserable disease smother my sparkle! I will not let it define me. I will not become the residue of this wretched, heinous disease. AMEN! :)

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Here here I second that Tesla_7US we all need to keep

Our sparkle with this horrid disease!

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Hi BeeWild

I am having weekly Paclitaxel at the moment and finding it much easier to manage than previous chemos with no nausea. I have the cold cap every week which is miserable at the time but I have had a great deal of pleasure in keeping my hair - more than I was expecting.

I may be continuing with the Paclitaxel after the initial cycle as a maintenance dose - possibly with Avastin. Interested in your trial.

Mary X

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Hi Mary thank you that’s so good to hear and helps me with the anxiety and anticipation of starting chemo again possibly next week

I didn’t use the cold cap first time as I didn’t think it’d work but if you’ve found it ok I might ask about it 👍

The trial is only being run at The Christie at the moment, which hospital are you at?

It’s specifically looking at the response of tumours to the new drugs that could possibly cause a bowel obstruction and with mine being like cling film around a part of my bowel guess I’m a good candidate! The only doubt for the onc was that I’m on thyroxine already and this may rule me out but I’ll find out on Monday once he’s spoken to the drug company ! Got

My fingers crossed I can take part x

I’ll keep you posted

Bev

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Hi Beewild .i ask my gynaecologist why cancer can mutate and come back .the answer I got was the white blood cells travel through the body and some cells before killed off stick to the blood and blood travels hence can go somewhere else.i don't understand all of this but .suppose it was an answer.hope you are feeling well as can be expected..have a good weekend .

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Thank you feel a bit gutted but intend to eat and drink to excess with friends and family this weekend

This disease is not going to steal all my sunshine 🌞

Hope you keep well too xx

Bev

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I had weekly Taxol in 2016 and found it easiest of them all. I have had several lines of chemo. I did loose my hair but hardly any nausea.

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Thank you that’s so reassuring x I intend to rock head scarves and baseball caps for the summer look as opposed to the woolly hats I had on through my first chemo 😁

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Hi Beewild

Try the cold cap. I'm on taxol and carbo and avastin and not lost ANY hair. So give it a go you feel so much better with hair and within 15 mins you get used to the cold. To combat future cancers look at your diet. It's important to monitor what goes into your mouth. Salt and sugar are cancer feeders and alcohol isn't helping the liver your first line of defence. Be strong hope will get you through. Big hugs xxx

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I watched a presentation on line yesterday where it said weekly Taxol is quite well tolerated by patients when compared with the higher dose every 3 weeks, which backs up the experience of the ladies in this thread who have had it. As for why it comes back, well, since the discovery of the so called 'Interstitium', which is a system of fluid filled tubes or canals throughout the whole body which no one realised was there until this year, this might be another route that cancer cells take to circulate through the body, as well as through the lymph.

I'm interested by the idea that many people with cancer view the cancer cells as the enemy or an alien invader; I view mine differently. I actually feel a bit sorry for those mutated cells; they are my cells, its just they've gone awry and are causing me problems, but I sort of feel its not their fault they've gone rogue, almost as if they've simply been getting the wrong instructions. I know that sounds ridiculous on the face of it, but what I've been doing is thinking about them in a kinder, more tolerant way and issuing gently chiding, correcting instructions as persuasion, rather than thinking of those cells as the nasty, evil invader. Maybe I'm nuts as well as afflicted by OC...

As for being scared, well yea, I'm sure we all get that feeling... the worst thing is, its a recurring feeling, because the thing keeps recurring.... hopefully you'll feel less scared as time goes on. Wishing you well with the treatment.

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You have a great attitude and you seem very strong. Funny too! My first time around I seemed much more complacent as I was in a bubble and moved through life like I had pillows on my feet. Guess that's called shock.

My recent recurrence since 2015 really theew me on my ass. I was more scared than the first time. I have 2 more chemo sessions left. A nodule appeared on CT SCAN ADJACENT TO MY LIVER. 5mm. When I asked the same question you did, I don't believe I absorbed the answer. Apparently it's too small to operate and too big to ignore. It's the damn microscopic cells! You would think that the carbo/taxol would destroy these little monsters.

Well, tonight is going to be a vodka/tonic night for me. Spring has finally arrived in NY!

Good luck and I just know you will be fine!

Marisa

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Hi BeeWild,

I really hope you have a great weekend with friends & family! 🥂🍷☀️

All the best with the weekly Taxol; the cold cap may be worth a try?

Thanks for asking the recurrence question.....like you, I can’t see WHY the chemo doesn’t kill off those microscopic cells!! And some ladies do well without surgery....I will ask a few people (they’ll get tired of me pestering them 😂).

Love & hugs,

Linda xoxo ☀️🥂🍷☀️🥂🍷☀️🥂🍷

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Lol I will ask the Prof I am seeing on Monday too and if anything makes sense and he doesn’t go over my head I’ll let you know xxx

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Hi - I hope your weekend celebrations are going well! Good luck on Monday, we're all behind you. Getting on a trial is a question of ticking lots of boxes. My advice is don't feel bad it you don't get on that particular trial because there are others and you don't want to waste time on one that's unsuitable. I'm on weekly taxol in combination with a trial cancer growth blocker down in London. It's my 5th line attack which started back in 2010 with Stage 1a fallopian tube cancer. I'm having very few side effects although now I've just finished the 5th cycle I'm struggling with a rash (shingles???)

Before you commit to the cold cap ask the nurse how much longer you have to sit there with it on. I find it's a long enough day as it is - 4 hours travel, 4 hours waiting for bloods, 2.5 hours chemo and on the trial I'm on, I have to see the oncologist every week too. It's a big ask but doable. If you get on a trial, they monitor you very closely and getting a slot for tests (eg CT scan) is much easier than if you are just on the NHS. The downside is you can feel like a guinea-pig at times! But worth it, in my book - Gina xx

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Thank you so much for that Gina it’s very helpful and reassuring

I’m glad the weekly taxol hasn’t been too harsh I was imagining having joint pains for most of the 18weeks eeeek!

I’ll let you know how I get on with my trial assessment on Monday x

Bev

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Sorry Bev. Recurrenxe sucks but hopefully you will tolerate the weekly dose well, and the clingfilm disappears.

Let us know what that trial drug is when you get a chance.

Fingers crossed you get access to that trial. Wish you well with chemo and sending hugs. Maus

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