Hi Carolyn, I haven't had paclitaxel, like you I also have only a few options left, am currently on Vinorelbine which I'm finding hard to tolerate and I'm not sure is working.
I could be wrong but I think several ladies who have posted have had paclitaxel for primary, could it be that the dose is lower for us?
I was talking to a lady in the pharmacy queue at my hospital and she had had MANY cycles, and had managed a 2 month break as well, with tolerable side effects.
I have also had thoughts about stopping treatment, it's such a difficult question! Wishing you all the best xx
All the very best with your treatment on paclitaxel. I managed 28 weeks of paclitaxel from June '18 to March this year! Have bone & liver mets. Worst side effect for me was peripheral neuropathy in my toes for first few weeks before a chemo nurse suggested resting my feet on a cold cap wrapped in a towel whilst I was having the IV. Amazing results! Neuropathy virtually cleared up! Otherwise I found paclitaxel pretty tolerable.
Currently on capecitabine having worked my way through 3 hormone therapies, docetaxel, eribulin(23 cycles), EC, paclitaxel, Herceptin and Kadcyla (when I was found to have changed to HER2+ & have now reverted to negative again - whole new story!) in nearly 7 years. Hoping for a good spell on cape as there aren't many chemo options left available to me ......
Keep us posted as to how you get on.
I just wanted to jump into this and offer you some reassurance on the effects of Paclitaxel. I've recently finished chemo and had had 12 weekly Paclitaxels followed by 4 fortnightly EC's.
I can honestly say that the Paclitaxel was so much more tolerable than the EC. Yes I may just have been lucky in terms of side effects, but I would say that it didn't restrict me anywhere near as much as I had prepped for. I had slight nausea immediately after treatment and had painful ankles on the 3rd and 4th days (hot water bottles and painkillers dulled this enough though), but the fatigue didn't kick in until week 10 or so. Lasting effects wise I did get peripheral neuropathy in my thumbs and tips of index fingers, but after a little bit of adjustment its just like being a bit clumsier than previously.
In comparison the EC floored me - zombie like, weak, flushes, lost loads of weight etc. I don't therefore think that I'm weirdly tolerable of chemo or anything....if that makes sense!
It's such an impossible situation that you're in, facing making decisions that nobody should ever have to make. I know we're strangers, but sending you all my love for your continued journey.
Hi Jan, Thankyou very much for telling me of your experience with this drug. It was very helpful.
I am beginning to wonder if it's worth carrying on with treatments or just let the cancer take its course. Is it better to feel well for a few months or feel worse under going treatment but have a bit longer to live.
I havent really felt ill all through my different chemos and tablets and today I feel fine, but I just got the feeling my Onc was emphasising quality of life over length of life. It's hard to comprehend that although I feel fine, I may actually only have a little longer left. Maybe I'm just feeling negative today at the thought of starting on the chemo wagon again and having it every week until they know if it's working or not. I dont usually let it get me down, but I do feel a bit teary today.
Thanks again for your reply, Carolyn xxj
I’m sorry you’re in this situation. It must be incredibly distressing for you. I’ve been treated for primary bc but I had 9 weekly paclitaxels after 3 EC treatments. It’s meant to be better tolerated than docetaxel and there’s no chemo trough so you apparently can go on with daily life more easily. I was told I would definitely lose my hair by week 2 but it held out to the end with no cold capping! I did lose it everywhere else of course.
You have the same prep and then an hour for the treatment (so, if your hospital is like mine, that will be a minimum of 4 hours gone). You need a blood test no more than 24 hours before so, if you want to save time, try to get bloods done at your GP’s the day before. I experienced no nausea and my appetite improved a bit. By day 5, I usually was mobile and ready to face the world.
I’m sure you want honesty but I can’t say much more. I was told I was ‘one of the unfortunate ones who doesn’t respond well to chemotherapy.’ I was laid low most of the time, weak as a kitten, more like a zombie at times, but I believe that’s not the usual reaction. One of the risks is peripheral neuropathy, so this has to be monitored closely. I only have it mildly.
Hopefully someone else will add to this and put a more positive slant on it but I will say that it did its job, in conjunction with my other treatments. My MRI was clear 🙂 I hope you have similar success.
Take good care of yourself,
I've recently been taken off Capcetabine as no longer working and had 3 cycles of Vinorelbine but unfortunately that hasnt worked either. I'm now due to start intravenous chemo again with Paclitaxel. My secondary is in my liver. I think my options are running out as I've already had chemo and a variety of chemo tablets. Just wondering what other chemo buddies have experienced with this drug.
Love Carolyn xx