What now?

It is 5 years since I was diagnosed with late stage OC. Went through 2 surgeries, 6 lines of chemo, and remissions are becoming shorter and shorter. I understand that it is incurable, but still have things to do and so I continue fighting, but somewhat reluctantly. Most recently my gynae-oncologist suggested one more line, starting with carbo-platins. On the second treatment I turned allergic - too much too often. So I was shifted to Cisplatins. Horrible result, sickest I've ever felt, with all the possible side effects and then some. Now he suggests weekly Taxol (3 weeks on, two off) for 6 rounds. I've had Taxol before and know its side effects well. Is there any experience out there willing to speculate on how long this is likely to be effective?

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  • I am feeling very like you. I think the 5 year stage makes us panic badly. We are so grateful we are still here are looking at deceasing odds and want to hold on to life which probably up until now has been good and manageable. I am so with you. If you are getting treatment its still really positive. I am off for  a scan half way through 4th line very nervous as I have spent most of it in hospital a very new thing for me and very upsetting but we'll get there we've lasted this long!!! xxxxx Trish

  • I'm feeling two things from your post, should you continue treatment or is there a less harsh alternative. I understood the purpose of chemo was to improve quality of life, if it is stressing you or making you so ill then I do question it's benefits. I hated chemo, am an absolute wimp, hats off to you for all the lines you have tolerated.  I read some research that used PARP inhibitors in patients who were not BRCA positive, with good results. Any thoughts along the holistic route?

    LA xx

  • Thanks for your insight. That is what I am feeling - the exchange rate between chemo and remissions is currently poor :)  I have a contact for cannabis oil and am considering going that route instead, although I find it makes me very drowsy, so only suitable at night.

  • Hi, please  keep us posted on the oil, so much info around on it and I have some for a last resort. Waiting for my scan results.

  • Im also interested in the oil ...dosage etc .I hope all goes well for you and all the lovely ladies on here xxx

  • I dont know if this will help ....but there seem now to be quite a number of us who have reached the five year line ....three years ago , two yeas after diagnosis , I was pretty much written off . Six lines of chemo on , pretty much six months on, six months off  , still here . I am very creaky , have been very post viral since New Year , but beginning to surface as the bugger does too ! That's been my pattern...I get better , it gets better !

    I had weekly Taxol and coped quite well , didn't lose my hair . Last year , until August , low dose , weekly Cispaltin ...the brain problem , for me , is being attached to the hospital ; the weekly blood tests , the day in chemo ( even if the drip is only an hour ) it's still a day .

    Last August , with shrinking tumours and dropping CA 125 we agreed a break from all the drugs and , the routine . Tomorrow , I will get the results from most recent scan and will see wht's on offer .  I am " through " the drugs , being allergic now , big time , to Carboplatin  and Caelyx , and gemcitibane .......Cyclophosamide has been mentioned , a possible re introduction to Taxol ....or a trial , but curretly I am not suitable for anything much . 

    I think that we have to keep pushing the Oncologists as long as we feel strong enough to cope ; not everyone has the support needed to keep fighting , of that I am aware .  I am lucky to have retired and not to have to worry about children . I do have an elderly ( 95 ) year old mother , a 25 year old son living at home with both parents not terribly well . 

    Reasons to keep going ....we all ahve our own reasons dont we ? 

    Humans are programmed to survive ...and in the best of all possible worlds , to help one another do just that .

     We will know when we have to turn our faces to the wall ....

    and for those of us still here after five years and longer , we are here to tell the rest of you , that it might just be possible to last a bilt longer than you imagined . 

     The terrors , the anxiety , for me never go ....they are there in parallel with dealing with the laundry , the shopping  , the inevitable ills of family and friends . 

    In the last two years , I have had eight " losses " , and often find it quite difficult to stay in this community on an everyday basis .

    So , apologies to you all for not always responding or being " away " in my head . 

    Thumbs up to us all xxx

  • That is a very inspiring post thank you I needed it xxxx

  • Your post is very inspiring and offers much food for thought. I'm a newbie to this, only had four chemos and my op so far but your post gives me great comfort  

    Thankyou

  • Yes me too.  I'm more or less on the same level as you Helen... Op next week. xx

  • Good luck with your op next week.  The thing I found most useful were wipes, body and/or baby wipes.  For days I couldn't reach most of my things, either because I was attached to things or because of being unable to stretch or bend.  

    xx 

  • Stocking up as I type!  How long did the op take?  xx

  • Keep a number of packs on your bed, under the sheet, under the pillow. I kept my toiletries bag on the bed and my make up bag (Im a small person so plenty of room) but I'd often find someone had helpfully moved them onto the trolley or to the bottom of the bed which I couldn't reach. If they are late in coming for you in the morning at least you can wipe over with the wipes and, if the toiletry bag still in place, brush your teeth.  Most awkward thing to do if you're not upright though, although I did have a gadget for adjusting the bed, I couldn't always reach it.

    The op was five and a half hours but I had to also spend a long time in the recovery room as my epidural had to be redone. So we had to wait for my aneathesist to finish another operation and then get dressed up again for me.  All the beds had gone on the oncology ward by the time he'd finished with me, which is why I ended up on an ordinary gynae ward, not until about 10 pm. I had a great view with a big picture window. I didn't go to sleep until about four as I was quite pain free and very hyper for some reason.  Then I woke up early, very excited to be there, little did I know I soon wouldn't be able to move. I think my expectations were a bit too high.

    Good luck my dear!

  • Oh my ..five and a half hours ....oooer.

  • It seems like five minutes. One moment the anaesthetist told me he'd already put the stuff in my hand and I was joking that I'd better rush to count to ten like they do in films, and the next minute I was in the recovery room. No passage of time at all.  Weird. 

  • I'm such a wuss you know..

  • No, ask them to take your mobile phone and take pictures so you can give the tumour bad vibes when you come round. They wouldn't do its its my phone because they weren't sure if it was allowed, they weren't allowed to take their own phones in. But they took pics on their digital camera but I haven't seen them yet. So can't do my witch's vibes at it yet. You'll be so interested in what the pics will show, no time to be worried. 

  • Incredible and beautiful in equal measure. Xxxxx

  • Thank you angeladale. xo

  • Dear Angela

    You have said it all there and so much better than I would ever do. You are so brave and resilient and inspiring me to keep right on. I didn't quite make the 5 year mark without recurrence but I consider myself lucky to have never had to endure what you and lots of women go through. I salute you all.

    XXX

  • and many hugs too ...you have been through a lot : thank you for your posts .

  • Well, you are here and that is good, My ten year anniversary is September.    I have had  remissions between treatments so have been luckier than some.   I try to keep trying, I distract myself a little from time to time.  I have melt downs so its not all rosy in the garden.  In fact had apt with oncologist today as have been having aches and he did his utmost to calm me down,   He said he will always have a plan.  So keep on hoping and keep on with the treatment as much as you can manage. If your blood counts go down, they will pick up again.  Try and plan something nice for the good days, it does help

  • TEN years ! Wow , you are something !

    great start to the day knowing this . 

    I always say , " One day at  a time " ....

    and my wonderful father always used to say , " Never say Never " ...

    and these little cliches are part of my daily fuel along with the porridge !

    Have a good day everyone .

  • We have a saying here in Cork, " it is hard to get rid of a bad thing".  I said that to one of my gynae team a few years back and she didnt get it at all,

  • Thank you Suzuki. 10 years!  Amazing. Ann xo

  • Well I am lucky to have a very good oncologist gosh his ears must be red tonight.  I try to do the best I can but I do love sweets choc and cakes too.   I do get down days but try to pick my self up again

  • Somehow things are meant to be. Today I have felt really down I feel sick and tired from chemo 3rd line struggling with the fact I have 15 more sessions.  I felt really sorry for myself. Then I read angeladale's post. If that doesn't inspire you nothing will. Thank you all. I am a really private person and try not to burden my friends and family when I am in this dark pit but it is relief to know other people know how we are all feeling.  thanks again for all your posts. They do help.

  • Hi Airfemale, I agree sometimes it is a huge struggle.  I have thrown my wig around in frustration not in public though haha.  Sometimes I think a big cry is good to get relief and frustration off my back.  I also try not to burden my friends because they all have their own problems, one lost a child to cancer, the others husband is on constant watch but had a marrow transplant and is doing okay.    I have a cousin who makes sure I get out with her and she is very caring.  I have used Cancer support groups for counselling it was hard to make a move on that but a trained listener is worth their weight in gold

  • Thank you all for these responses. I know that I am indeed lucky that I have had such an unexpected extension of time - enough to allow me to see my grand children. One's body just takes such a knock from the treatments. I used to be a musician and dancer and now rarely have the energy to walk. But live in a beautiful place with super-loving family. Will remember to keep my head up. 

    Thanks again all!!

  • Hello. I changed to cisplatin due to carboplatin allergy but they have managed to control the sickness with Emend (aprepitant) and steroids plus some of the usual anti emetic, though it's still a tough one. I've not had weekly taxol but have read about it as it was suggested as one possibility for me and it's a lower dose so people do seem to tolerate it better and have a reasonable quality of life while on it. I hope it works for you. I passed the 5 year mark a couple of months ago.

  • Great , another one ! Well done you x

  • I also passed the 5 year mark last Nov just waiting to have 6th and last session of 3rd line chemo I also worry and have down days too,but I try and live life to the full in between and make most of the extra time I have been allowed,best wishes to everyone x

  • No, I don't have this experience..... Yet. Please God, Never.

    After initial diagnosis & surgery I investigated adjutant drug treatments & found Care oncology in London. You could look into what they are suggesting, as I did, & give it a try. I have stage 3c presently in remission for 3 months & I started their protocol (?) at same time as first chemo. Fortunately. I don't seem to have any side effects from these well tolerated drugs.

    Who knows what the future holds, but I feel that everything should be chucked at it whilst still recognising a cure is unlikely. Don't give in just yet

  • Absolutely !

  • Thanks all - for advice and comments. My new oncologist feels (as I do) that my body is resisting treatments, and that it's not worth treating raised 125 counts if you're not really feeling symptoms. So, another CT scan today. But we're postponing further treatments until symptoms become noticeable. So happy days - quality life. :))

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