Morning ladies from rainy Lincolnshire, I think I've decided not to have my last dose of taxol, ,will have carbo on its own, started back in March with three cycles of both ,the taxol nearly finished me ,excruciating leg and foot pain ,given morphine with little relief , last cycle took two weeks before pain eased ,then weakness to get over ,then three cycles of carbo , tolerated better, then surgery ,must have been mad but agreed to have taxol and carbo again ( mopping up ) had two cycles ,second really bad again ,day 8 still painful so weak had three days in bed and husband has to help me in shower, really can't face it again, from past experience last cycle will be worse , my last one will be 10 December so getting near Christmas ,was hoping to be pain free ,sorry I'm rambling, the thing is I'm scared to have it ,but scared not to, any thoughts or wise words ,been unable to contact my can .x
Right decision ?: Morning ladies from rainy... - My Ovacome
Right decision ?
Hi. I missed my last 2 doses of Taxol and just finished with the Carbo back when I was first diagnosed (chemo after the op), Pretty much for the same reason and due to the fact that the Taxol was causing really bad perhipheral neuropathy in my feet which still exists to this day, although not as bad. I was scared at the time too but my Consultant said it was time to exclude the Taxol but he reassured me that the Carbo on it's own would work and it did. So.... whilst I understand totally why you are scared, try not to be. xx Kathy xx
Thank you Kathy ,that's reassured me a lot .xx
I would speak with your oncologist and explain the issues you have with the taxol. It is a drug that really doesn’t suit everybody, I was fine with it but still have the neuropathy from it to this day. I’m a great believer in quality and not always necessarily quantity. You’ve given it a really good go and it should have done its job so I concur with Kathy. I hope you recover from all the side effects really quickly. Take care ❤️Xx Jane
Thank you Jane ,I'm slightly better today so on the mend ,definitely decided not to have the last one ,thanks for advice .xx
I cancelled my last two doses of Taxol due to painful neuropathy and finished with carbo only. I recurred within 6 months and have often wondered if I would have not recurred so quickly had I continued with the Taxol, sadly I will never know. With hindsight I think I would have asked for a reduced dose and had the last two infusions. Good Luck with what ever you decide to do.
I will contact my csn and discuss the option of a low dose ,but even a low dose scares me at the moment ,but I should check it out ,thank you .x
Hi Cheryl, I was only thinking about you yesterday and wondering if you had come out the other side, so to speak. The taxol is a bitch, I've been suffering with the most horrendous pains in my feet and legs myself since Friday so I completely understand. I've only completed number two, so God only knows if I'm going to be able to complete six sessions ! You're not the first person not to finish all six cycles and you won't be the last. I seem to remember six is just a number plucked out and there is nothing scientific to say that having all six will make a difference, so if I were you I would speak to your Onc about this. I'm in Lincolnshire (Stamford) as well by the way, Kerry xx
Wow lovely coincidence Kerry , ,Lincolnshire yellowbellies , I'm Spalding , I managed three ,then three carbo then surgery now three more , will phone tomorrow but really don't think I'll be doing the third , I'm slowly coming out of it but still exhausted and wobbly ,how are you doing .xx
I always think of tulips when Spalding is concerned, as I remember rows and rows of them in fields when I used to visit Spalding as a child. Yes, I'm ok thanks. I had a grotty few days last week but have come out the other side and managed to go back to work yesterday. I'm not looking forward to the 10th December as that's the next one but I holding on to the fact it'll be number three so I'm half way there. in the meantime I'm going to keep busy and get into Christmas mode. The decorations are coming out of the loft at the weekend (haven't told hubby yet as he hates getting them down 😂) and I'm going to dust of Michael Buble, pour myself a brandy (family tradition which I invented many years ago) and get to work. Take care, love Kerry X
Good to hear you're up and running , can't beat a a bit of Buble at Christmas , I do Christmas music and sherry 😀 I'm struggling this time , day nine ,legs still aching badly and zero energy , wasn't even able to water the house plants without resting half way , but tomorrow's another day . xx
Hopefully your strength will return in the next few days xx
Xx
I have done this a couple of times - asked to forego my last cycle of carb/taxol and then my last dose of carbo/caelyx too. My reasoning was that we're all individuals and ideally the treatments would be tailored to accommodate how we were responding . I asked if the chemo had already done its work, would it from then on just be dealing with and damaging healthy cells - unfortunately no-one can really answer this. I've also had my doses lowered.
My oncologist is more bemused and interested by my decisions than against them. She says there's no evidence for or against these decisions because trials aren't run in this way (i.e. measuring whether less may be more) so no-one can actually say whether I'm right or wrong to do it. It's obviously not a major rejection of treatment but it still feels very frightening at the time
I don't advocate going against oncology advice in general and think it has to be an individual decision, but I would weigh up how you're feeling in the equation. In the end your body needs to be as healthy as possible in order to heal.
Thanks for that ,its helped a lot , there's no way I can do another ,day nine now ,legs still hurt ,zero energy ,struggle to get out of bed , feel I'm just existing ,keep hoping another day will be better .xx
I've already said next time I have chemo I'm not having the last doses once I feel grotty. My friend never has and she's done OK. Xx
That's reassuring to hear ,thank you .xx
Thanks for starting this discussion. I found it really illuminating. I totally sympathize with your experience of taxol. I tried to get my gyn onc to skip my last taxol on frontline but he wouldn’t. Now that I’m on Carbo caelyx I see how horrible the taxol was. It took me seven months to recover my strength after frontline and so far this time I feel like I’m not losing muscle or becoming overall weaker. You’ve had plenty of chemo. I’m sure missing the last taxol won’t hurt.
So nice when others understand ,I'm just not getting over it this time , thought I was picking up yesterday but back down today ,its day nine , I'm beginning to wonder about having the carbo now ,will have a chat with my csn. when she gets back to me .xx
Im so sorry to hear your worries.yes as you know the last treatments are the worse and can be fatal.my last one i was pushing myself to do in thought "i want to live,i need this" thank God i spoke up and said to chemo nurse can you check my blood pressure my chest felt
different.Dr said i could not finish it
I said but i need it.she said it will kill me.
When in doubt and you have time to.get another opinion and ...know your body!
Happy thanksgiving "we're here 💖
In my last occurrence I could only take 4 rounds of taxol as the neuropathy was too severe so I ended up taking 2 extra carboplatin alone. It worked and I have been in remission for 15 months, at this stage. I think listen to your gut feeling and you won't go wrong. Good luck with your decision.
Thanks for that ,I know I've made the right decision ,it feels right .xx
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