Hi everyone
I have just had ct scan results and unfortunately I have progression in the liver. I have been ob ribociclib, letrozole and zoladex for 10 cycles.
Oncologist wants me on Paclitaxel ASAP. My liver function is really good at the moment and I feel really well in general. He doesn’t want to chance putting me on another hormone med incase the cancer grows further and affects my liver function.
I am devastated by this news but will dust myself off and keep going.
Would love to hear from anyone who has been or is on Paclitaxel? Side effects?? Is cooling cap worth it? How long before hair falls out?
This is my first line of chemo so really scared. Any tips and comments on what to expect please.
Thank you - this forum has given me great support since diagnosis.
Xxx
Daisy
Hi Daisy,
same here I’m starting the same chemo next Wednesday and am really nervous about it. I’ve had a good 7 years with mets to bone and liver on hormonal/ targeted treatments but just had progression. I believe the cold cap can work very well and you should ask about it with your chemo nurses. I can’t have it because of the skull involvement so today I’m off wig shopping as want to be prepared.
Let’s stay in touch on here and swap tips etc
keeping everything crossed for us
Debs x
Hi Debs and Daisy,
Sending you both a hug as I can remember how very scary it was being told I needed chemo the first time around back in 2018!
I’ve spoken to my chemo nurses and heard lots of anecdotal stories from people who have been on Paclitaxel. Apparently its a well-tolerated chemo that does a good job and many people have few severe side effects. The main effect will be hair loss and generally some nausea and peripheral neuropathy. Oh and nails, I think nails might turn a funny colour or start coming off over time.
I’ve also heard anecdotal stories that Pax has done such a good job for some people that they were able to come off it and go back onto hormone treatment or tablet chemo again.
Having been through FEC-T chemo at my primary (which is reported to be the harshest chemo treatment you can have), I had hair loss, some nails coming off, metallic taste in mouth and tiredness. Never had any nausea, mouth problems or any other noticeable side effects. I found it was actually not as awful as I had been expecting and was still able to go out and about and do stuff, so long as I paced myself. The only thing that bothered me about the hair loss was the lack of eyelashes and nose hair, as it really set off my allergies in the spring. I found wearing wigs pretty cool and was more than happy to don a bandanna or hat when I didn’t want the wig. My head used to get really cold at night so I had to buy a little sleeping cap, which my family thought was really cute
I think the main thing to remember at the start is if you really don’t feel well, tell your Onc straight away and consider a dose reduction. You want a good quality of life, not feeling rubbish all the time. Your Onc can also give you loads of meds to combat any other bothersome side effects. Drink plenty of water at all times and if you can, do some light exercise. I used to walk a mile day whilst on primary chemo and although hard at times, it made a massive difference to me.
I’ve known ladies who fast 12 - 24hrs before and after chemo who said they hardly experience any side effects. I think there is some clinical research that supports this but I can’t remember where the link is.
I plan on still working full time from home whilst on Pax and having discussed this with the chemo nurses, they’ve said most ladies still manage to live an active life and they rarely see very poorly patients with it, which I thought was very positive. So let’s hope its the same for us and does a good job xxx