I’m have trouble with my feet and hands after the forth treatment of Paclitaxel. My oncologist is talking about stopping it altogether. I still have 8 more treatments to go and was wondering if anyone has any idea what treatment they would give as an alternative. I was diagnosed with triple negative. Any thoughts would be really appreciated.

Hi @WeenI had my first Paclitaxel treatment yesterday. I asked my oncologist about ice therapy and he said he is getting a lot of questions about it and hasn't had a patient do it. I told him I was going to try and he said he will be interested to know how I go with it for the 12 sessions I am meant to have. I was given some socks and I had ice packs in the top and the bottom of the socks and I double gloved my hands in ice jugs for the whole time and so far so good. I have attached a photo to show you. The nurse was lovely and got me the jugs of ice. Sending hugs xxx

Hi Locksleyyou look very well set up. I did ask my Oncologist about the ice treatment she said they are experimenting with the treatment at the moment. Unfortunately after only 4 treatments they decided to stop my treatment. I had trouble with my feet and hands. I finished three weeks ago and still have the skin on my feet peeling and nerve damage in my shins and feet. I still had 8 treatments to go. I have a follow up review with my Doctor on Tuesday and then on to Radiotherapy for 5 or 6 weeks. Hope all goes well for you. Take care

Hi Locksley,I can answer this one. I've just finished my first 5 sessions.You will see the frame that they use on your planning session for R/TYou are on your back, but elevated slightly. Your arms are both above your head, well supported in a frame with padding.Your arms are not straight but gently curved.From the time you start to lay down, it would be 15 min. All of that time you need to stay still.The first 5 min the staff are with you getting you into your precise position.A few milimetres up, down and sideways etc.If you are able to put your arms above your head with fingers touching, perhaps while on a recliner chair.You would be ok.If that is really uncomfortable or difficult for you, perhaps a physiotherapist could assist with some stretches.Definitely discuss this with your Radiation Oncologist at your planning session. This seems to be 3-4 weeks prior to starting.That is when I got my 3 tiny tattoos, and was put into the frame for planning.I had a couple of consults with Radiotherapy a month or 2 prior. These were only phone consults, due to COVID.But you could also mention your concerns then too.Good luck.

Hi @PV123, Please do a general search on this site for peripheral neuropathy. Several women have described, with pix, their DIY solutions instead of buying via the US. Although I did ice therapy from the beginning, I understand that it can still be effective even if start after chemo has started. xx

Good stuff @Locksley, good on you for trying. It will hopefully give you the results you want. Power on 👊🏻🍀❤️

Paclitaxel | Online Network

Jennim
Member
5 years ago

Nikkilee said:

Hi @ween,
i too was diagnosed with triple negative but I didn’t start suffering with peripheral neuropathy until week 10 so I only had 2 cycles left so they continued the paclitaxel but I mainly suffered in my hands but they are all back to normal now , I finished treatment in sept 2019 . I agree with other replies talk to your care nurse and explain your feelings/concerns etc and they will give you all the information you need . Good luck and take care xx

HI Nikkilee....This is my second time with TNBC. first time 2013 and did 4 x AC + 12 taxol and 20 rads.
I did get the PN pretty bad but just with sensation and pain - not skin or nail issues. This time around they are doing AC x 2 (can only have 6 in your lifetime) and due to last time on taxol they want me to do EMF instead- I am a little worried that this may not be enough to keep it coming back a third time....have your PN issues resolved themselves? thanks...
Ween
Member
5 years ago
hi nikkilee
Thank you for your input into my post. My oncologist stopped my Paclitaxel at week four I was having an awful time with my feet the skin was peeling off my toes and toenails dying. My blood count dropped right down to. I did ask if there was another treatment I could have. She said the treatment would be too harsh on my body at my age. I’m into day 10 of radiotherapy now. I’m looking forward to finishing only 15 more treatments to go. Stay well and take care.
Nikkilee
Member
5 years ago
Hi @ween,
i too was diagnosed with triple negative but I didn’t start suffering with peripheral neuropathy until week 10 so I only had 2 cycles left so they continued the paclitaxel but I mainly suffered in my hands but they are all back to normal now , I finished treatment in sept 2019 . I agree with other replies talk to your care nurse and explain your feelings/concerns etc and they will give you all the information you need . Good luck and take care xx
Ween
Member
5 years ago
Morning Locksley
If it isn’t bad enough getting Cancer, the side effects are worse. So sorry you are having trouble with your feet. I’m lucky I think I will only lose my big toe nails. Still have very tingly legs. It’s a shame you have to stop your ice treatment on your feet. You were doing so well.
My hair is starting to grow back after finishing Chemo (very slowly). Unfortunately hair is growing very fast all over my face-it’s black and my hair is grey. Oh dear the side effects will they ever end.
On the up side my Radiotherapy is going well, so far. Were you able to sleep well before you starting all your treatments? My oncologist always asks if I’m getting tired. I respond with I’m always tired. Lack of sleep is a bummer. You take care, hope you have a better week. Talk soon.
Ween xxx
Locksley
Member
5 years ago
HI @Ween
Thanks for thinking of me. I'm wide awake. Podiatrist said chemo is killing my toe nails and the 2 big toes are lifting. So they have been cut and I am putting betadine on them and putting a dressing on them. Cant do the ice therapy on my toes now. I have painted the rest of the toes with black nail polish to perhaps try and help them. I have been getting a couple of pings of pain in a couple of other toes now. Sending hugs xxx
Ween
Member
5 years ago
Hi Locksley
How are you going with your ice therapy? Were you able to get treatment on your split toenail. Hope you are still feeling well and positive.
Ween
Ween
Member
5 years ago
Hi Locksley
So sorry you’re feeling so chilly with your treatment. Let’s hope the toenail recovers. Not sure how I would have gone with the ice treatment. I loved being able to have someone with me at my treatment. My three grown up children and two friends took turns. Unfortunately I can’t take anyone with me to radiotherapy. Finished my third treatment today the shoulder is holding up okay. Only 22 more to go. Let me know how the podiatrist appt goes.
Take care Ween
poodlejules
Member
5 years ago
Another one out of the way ...yay! Glad your husband can go along too . Always great to have someone with you, especially when you have your hands and feet tucked in ice! My friends (the ice maidens :) ) would take it in turn to come with me along with my husband and big kids. Good luck with the podiatrist .
Locksley
Member
5 years ago
Hi @ween and @poodlejules, yesterday was my 4th taxol session. It's chilly with the ice but I grin and bear it. I am seeing podiatrist Saturday morning to look at toenail that looks like it is cracked or split. Yes I am still able to have my husband come to sessions. He usually reads his book but it's nice knowing he is there. Sending hugs xxx
Ween
Member
5 years ago
Hi Locksley
I have not been able to get a decent nights sleep since I started with my treatment. I feel your pain. My saving grace is I don’t have to get out of bed early so get some sleep from about four onwards. Sorry about your toe nail please keep an eye on it. Both my big toenails are dark brown so I imagine I will lose them. One of my fingernails is split as well. It makes you realise how potent Paclitaxel is. Especially after only four doses. Let me know how your treatment goes this week. Are you able to have someone with you? Take care Ween