Hello all. My name is Wendy. Please bare with me as I seek any advice that may be available at a difficult time in treatment. I was diagnosed with Triple negative breast cancer Jan 18 this year. Scans etc showed no apparent spread. The advice was to get the portacath in and start neoadjuvant chemo which I did within 3 weeks. The follow up MRI after the AC and a couple of Taxol doses shows the tumour had "disapppeared". Three doses later (all up I had 7 doses with the last dose reduced by 25% ) as I had developed stage 2 peripheral neuropathy. That week the oncologist suggested maybe it was time to stop Taxol or at least have a rest for a week and see if symptoms decrease and carry on. The breast care nurse rang and suggested that this is the only "window of opportunity" based on research etc and that I should accept the peripheral neuropathy and take the chemo. All through my treatment I have changed my diet, taken supplements, hyperbaraks, hyperthermia and PEMF. This Thursday I have the option to resume chemo and Im not convinced it is the best thing... Im aware that 1% of woman are at risk of Leukaemia later on down the track ./ the peripheral neuropathy can become a permanent state not to mention the other less obvious side effects. I intend to continue the supplements etc So my big dilemma is whether to go on. Has anyone else been faced with this situation. Of course at the end of the day its "your" decision etc but i feel i need to compare notes if possible kind regards wendy

@WendyNev. I had (and still have) a terrible relationship with my oncologist who I call the Ice Princess. She is the most aloof and disconnected person I have ever had the displeasure to deal with, but I don't want her as a friend, just to treat my cancer. I mention this for a reason. During the AC twelve week nightmare I was hospitalised after each dose and after the third treatment, she told me that she was going to delay my final one by eight days and as well, cut the dose by 20%. I protested and asked if we could discuss it, but her words to me were "No...I will not be bullied by you, or anybody else regarding this...this is my decision and it is final". So it may come as no surprise that when I started on the Taxol, I was like Manuel in Fawlty Towers...."I know nothing...I say nothing..." Peripheral neuropathy started around dose five, but I said nothing. My personal choice was that I'd rather go into my coffin later with velcro, than sooner with buttons. They kept on asking if I could still do buttons as a yardstick for finger problems. When the very last drop of the last dose went in, I mentioned the increasing and by now bad neuropathy. She got the shits with me for not saying anything earlier, so I threw her own words back at her, and told her that I wasn't prepared to be bullied by her in that matter, that MY decision was MINE and that it was final. I realise that this was quite possibly not best practice, but for me having been diagnosed with Stage 3 Grade 3 cancer, I had one shot and one shot only before the horse bolted out of the breast and off to other parts. A year later, still with numb fingers and feet, I have no regrets. Given the same situation tomorrow, I would do the same, but I do realise that this is my nature...go hard or go home.

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I agree about tbe supliments. ..vut C in particular protects cells...which also includes cancer cells. The time gor supliments is after chemo to help tbe nody recover.As to the taxol. Have a further discussion with your oncologist of tbe risks if you do or don't continue or continue at a reduced rate. I'm unsure what stage 2 neuropathy is...I had foot numbness, balance issues and occasional incontinence on taxol. Most resolved within weeks of completing all 12. My toes (which felt like a bandaid was around them) also improved quickly except if very cold. 2 years on I notice nothing.. TNBC has no back up treatment yet, chemo is it. So yes...you get 1 shot at a cure. It's not an easy decision. Nobody goes into chemo with the plan of having less than recommended.

Hi @WendyNev, I'm not sure that I can give you any advice on this except to ask what your oncologist is recommending. Permanent peripheral neuropathy, as I understand it, is something you definitely do not want, but neither is a recurrence of bc.

Taxol side effects after 7th dose.... to continue or not continue

16 Replies

onemargie
Member
8 years ago
Hi there @WendyNev I was diagnosed may 2016 aged 43 with TNBC. Stage 2a grade 3 (3cm tumor) all scans clear no lymph nodes involved. Negative for the Gene took the affected boob off first then the other 6 months later as a preventative no rads either due to that. My chemo regime was different to yours and I’ve noticed since I finished chemo that more women are having your regime. I had dose dense chemo. 4 rounds of AC two weels apart and 4 rounds of taxol 4 weeks apart. I didn’t get neuropathy in my feet or toes just my hands and only after the last dose. It was manageable for me with pain relief and was only really sore first thing in the morning and this subsided as the day went on The symptoms virtually disappeared in July last year along with all my menopausal stuff and I’m just left with some osteo that I manage with exercise and panadol osteo. It’s totally up to you what your do. Do you have another 5 to go ? I’d continue if you can as long as it’s manageable as we dont grt to take any post treatment meds to help reduce recurrence like those with hormone receptive breast cancer and be careful with the supplements too. You can always discuss taking those post treatment if they aren’t recommended during chemo. Hope this helps. Margie xx
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WendyNev
Member
8 years ago
Hi Kombigirl thanks for your affirmation. i really appreciate it. Ive met a few women since who also stopped taxol early. kind regards and all the best to you. xx wendy
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Kombigirl
Member
8 years ago
Hi Wendy. For what it's worth. I'm Triple Negative and did stop Taxol at #7 due to neuropathy. After 3 months of stopping the taxol my neuropathy is no better, in fact it feels worse. I wished I stopped at 6 treatments. Even though this is my experience, you have to do what feels right for you. xx
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kmakm
Member
8 years ago
@Kattykit @"Kiwi Angel" Handy that you don't like them! I do like grapefruit. Bought a big bottle of grapefruit juice the week before I started the Letrozole and guzzled it. I think on the 1st June 2028 I will have several cocktails containing grapefruit!
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Kattykit
Member
8 years ago
No pomegranate when you are on Ribociclib, lucky for me I don't like it anyway, or grapefruit.
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Kiwi_Angel
Member
8 years ago
It seems like grapefruit affects everything!
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kmakm
Member
8 years ago
No grapefruit allowed if you're taking Letrozole.
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primek
Member
8 years ago
I agree about tbe supliments. ..vut C in particular protects cells...which also includes cancer cells. The time gor supliments is after chemo to help tbe nody recover.

As to the taxol. Have a further discussion with your oncologist of tbe risks if you do or don't continue or continue at a reduced rate. I'm unsure what stage 2 neuropathy is...I had foot numbness, balance issues and occasional incontinence on taxol. Most resolved within weeks of completing all 12. My toes (which felt like a bandaid was around them) also improved quickly except if very cold. 2 years on I notice nothing..
TNBC has no back up treatment yet, chemo is it. So yes...you get 1 shot at a cure. It's not an easy decision. Nobody goes into chemo with the plan of having less than recommended.
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Patti_J
Member
8 years ago
Yes. I was advised not to take any more than 500mg. of vitamin C because any more actually feeds my cancer.
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Harlee
Member
8 years ago
Please be careful taking supplements during chemotherapy either without your oncologist's knowledge or against their wishes. As Joannie said some supplements can react with the chemo drugs - causing worse side effects and/or reducing the effectiveness of the treatment.
Oncologists don't stop you from taking supplements just to be nasty - they do it based on evidence of what effects the supplements will have on your treatment. Please at least discuss your supplements with your doctors.
If they say that the supplement won't help but won't harm - then go ahead if you wish. But if they say that the supplement will effect your treatment please listen to them.
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