Preparing for Taxol/Paclitaxel

Hi Phia,

I hope today went well. I’ve just had week 9 of this same treatment. Prior to this i had 4 rounds fortnightly of AC (the red devil). My hospital doesn’t offer cold caps or gloves so I’ve lost all my hair. It’s already growing back though. My doses have had to be tweaked as I’m getting nerve damage in my fingers. I also found out today that my accompanying Herceptin will continue every 3 weeks to round out a year, I wasn’t told this previously, my advice would be to make sure you write down everything your oncologist tells you as it’s hard to take it all in. 

Hi Phia,

This is the first time I’ve posted on the forum, although I have received a huge amount of comfort and information from it over the past 18 months.

I finished 3 months of Taxol chemotherapy in September 2022 after a diagnosis of early stage HER2 pos IDC in May 2022.

I was quite apprehensive about losing my hair, but my oncologist recommended I try the cold cap and I’m so pleased I did. I kept most of my hair.

I didn’t find the cold cap painful at all on my head after the first few minutes, but my body did get very cold, so it wasn’t particularly pleasant. Having said that, the oncology nurses and staff were fantastic, supplying hot drinks, and heated blankets and heating pads.

The cold cap went on half an hour before the taxol started, and stayed on for an hour after it finished.

I estimate that I lost about 20% of my hair in the end, most of it after the treatment finished! It didn’t start to shed at all until week 7, and this was preceeded by a prickling sensation on my scalp. The fall from my head was minimal during the taxol treatment, but increased after it had finished, and 1 month after treatment ended I was surprised by all my eyelashes and eyebrows falling out! In the end I had a thinner area on my crown which was barely noticeable, and some hair loss around the top of my ears and nape of neck. I have medium length hair and wearing it down meant that I could disguise this.

It appears to be very important to get a good firm fit with the cold cap so that the cap is in contact with your head in all places. I think I had a week or 2 where mine didn’t sit as closely as it could, hence some more loss in those places.

In case you may find this useful, this is what I did to ‘baby’ my hair throughout the chemo.

I cut a bit of length off before treatment – to just above shoulder length.

Only use a super wide tooth comb and support the hair when combing to make sure that it is not pulling on the scalp at all, just combing from the ends.

No hats, or ponytails, headbands etc.

I washed my hair once per week after chemo, because my head was covered in conditioner from the cold cap. Over Winter this was easy, in Summer I may have needed to wash more often.

When washing, I used tepid water only, and Moogoo baby shampoo. I didn’t rub, just ‘patted’ the shampoo on my head and rinsed off. Gently press dry with a towel, some leave in natural conditioner, and then the ‘au naturel’ look with no blow dry or straightening.

I’m a bit of a ‘kitchen chemist’, so I also prepared a hair mask on some days – a cold espresso coffee mixed with an egg yolk and a few drops of castor oil. Leave that on for a bit, then shampoo gently out.

I didn’t start blow drying or colouring my hair until 3 months after chemo finished, just to help it along.

My hair started growing back quite quickly, and I’m now proud of the sticky up wavy new bits, and the extra fullness I didn’t have last year 😊

For those times when I was feeling a little ‘thin’ in places, I found ‘Toppik’ Hair Building Fibres which I purchased online from Chemist Warehouse were fantastic – I’ve since tried to encourage my husband to use them on a thinning area too… They were very easy to use, just a sprinkle on, then gently brush/comb through and they disguised small areas beautifully.

Re the taxol chemo – in general I found it very easy to tolerate – I know this is not the case for everyone though. I had a bit of facial flushing, some fatigue, and some cramping occasionally in my feet and calves, which still persists infrequently. I was able to work throughout, but I was very careful to avoid catching colds/covid etc. Chemo induced menopause happened, and the flushes continue to this day. Ce la vie.

Being HER2 pos I also had 12 months of Herceptin (trastuzamab) treatment. 1 x injection 3 weekly. The only side effect I am attributing to that is my inability to grow some fingernails! 5 of them continue to split vertically, and I have to keep them extremely short. A very minimal problem.

On a positive note, I didn’t mind the loss of body hair at all, my skin was incredibly soft. And when the eyebrows went, I was able to give myself a temporary eyebrow lift by drawing them on a bit higher lol. I struggled to work out fake eyelashes, but some eyeliner behind my glasses was pretty ok.

I know this is long, but I was searching for info such as this before I started my journey.

I wish you all the best for your upcoming treatment and beyond, and I hope you find support and comfort from the wonderful, generous people on this forum, as I have.

I didn’t have the option of cold cap or ice treatment for hands and feet eleven years ago, with hindsight I would have opted for anything to reduce peripheral neuropathy. For most people, neuropathy is limited and people recover quite well when treatment ends. But effects can linger for others, my feet were very painful for a month or so and even now I have quite distorted feeling (but no pain). I’d like to have normal feeling feet again!

Cold cap results seem variable but it’s worth trying. 

Taxol can be hard on soft tissue - so often affects the mouth, eyes and nose. I lost most of my taste buds and also was prone to nose bleeds and crusty nostrils. Both of these side effects cleared up quickly when the treatment stopped. 

I had no nausea or fatigue with either A/C or Taxol, worked throughout chemo treatment and my hair started growing back before I finished chemo, which was a nice surprise! 

Best wishes. 

How you will go is so unpredictable. I used and recommend the Cold cap. I've heard of cold treatment to the hands and feet, but were not offered or used. The Cold Cap alone adds 1 1/2 hrs to time spent at chemo suite. I thought it was worth it. I had Epirubicin and Cyclophosphamide, before Paclitaxol. If you use the Cold Cap, you do need to be gentle with your hair. I normally blow dry and straighten my hair. This was not done while on Chemo. So I had a shorter curly hair style during Chemo. If you try it, you will probably know within 2-3 Chemo sessions.  I was very lucky and had no nausea. My bloods stayed stable.
If you have poor veins, you may be offered an Infusion Port or PICC line.
These make Bloods and Chemo easier, and save your veins for life after initial treatment.
I had Mastectomy with Axillary Clearance. That meant that that arm should not be used for Chemo, Bloods, needles and BP's.
After Chemo I still have one good arm for future surgeries etc. (which I have had ie Breast Reconstruction, and 2 knee replacements)
I had odd taste changes, and food didn't taste as good. I did get some Peripheral Neuropathy to the soles of my feet, started just after all 12 sessions. You do need to be honest about any changes you notice, so that the Onc can make adjustments if needed.
I didn't do anything special with food. I could have done more exercise eg walking.
You should be given EviQ sheets of information about your Chemo. It is available on the internet too.
Sorry for rambling.
All the best with treatment.