Paclitaxel advice please

Hi, I had a different type of chemo myself,  but this thread might help you Chemo chat

good luck, hope your side effects are mild 

Hi Munchkin

I also had four cycles of EC then four of fortnightly paclitaxel.  I don’t have much advice.  Just wanted to say that personally I found paclitaxel much easier than EC, and my oncologist said most of his patients are the same.  I had none of the nausea and indigestion I got with EC.  I just had a couple of days of mild aches and pains - a slightly flu-ey feeling - around days 5-6.  I also took tablets for constipation (just bought them from the supermarket) and tried to eat lots of fibre and drink lots of fluids.  But overall I felt pretty good.

best of luck xxx

I had the same regime as you. I preferred paclitaxel to EC though it has its side effects like all of these drugs. 

I wore dark nail polish and read all the nail advice I could as the nail damage is sun sensitive. Regular moisturiser to the nail beds, file don't cut, wear gloves for chores, don't use your nails to pick at anything or open anything etc. It takes many months after chemo for the damaged nails to settle/ grow out so this all becomes quite routine.

The nerve damage to the fingers and toes is common. I wore ice gloves and mitts from amazon and had a change of ice packs per hour and a huge cool bag with ice packs to keep them frozen. I looked like I was going for a family picnic not a chemo session! 

The premeds make you sleepy especially the piriton, so you may well not be safe to drive yourself home. The sleep was gratefully received! 

The day after chemo I had joint aches that could last about a week, but it really varied from cycle to cycle and was sometimes not really noticeable. I had quite a lot of steroids each time so I had the usual steroid ache in my thighs. But my taste came back quite a bit and my head was clearer. As chemo accumulated I did need to pace myself for the tiredness but I imagine you are already doing that a lot.

You are halfway now and on that countdown to the finish line. Good luck today xx

Did the ice gloves really make a difference? Oncologist didnt mention it. I might be running out of time for those anyway. Were they for the EC or paclitaxel? Or both? 

They were for paclitaxel. The first time, I didn't realise I needed an ice set pack per hour, so I had neuropathy. I found I couldn't tie shoe laces, open handleless cupboards in the kitchen and I dropped a lot of mugs/glasses. Thankfully it settled over the 2 weeks and I was ready with replacement ice packs the second time round. I only ended up with pretty minor neuropathy and it settled mostly within 3 months. I am not sure really why they aren't supplied as they really help and neuropathy can be very annoying/debilitating long term. I got some neuropathy from EC, but think I was perhaps more susceptible as I already had a neuropathy before getting cancer. xx

Hi Zephyr how's it going? I've just had one of 12 weekly paclitaxel and already have some neuropathy at night on day 5. I did have some pre existing neuropathy in my feet (sock like feeling) pre chemo that would come and go. Vascular related I think. Got worse with all thd sitting around I was doing during AC chemo due to deep fatigue.. . Am a bit scared of it getting worse. Doing the ice thing. Not sure how bad to let it get before pulling the plug on it since it only gives me 3% over the next 10 yrs. Such small gain for possible lifetime of neuropathy. 

Hope your blockers are being nice to you

Hi-

So lovely to hear from you. I am sorry that you had such awful fatigue. I can relate to being too tired to chop a carrot or to stand to cook a meal or do chores. It is really tough. I hope you are feeling better on paclitaxel - I know I felt that I got my brain back! I was well and truly fatigued by the end of chemo, but it does get better gradually. It just takes time and patience, and walks and then exercise to get there. Keep eating protein as its energising and good for your body on chemo (so my dietician said). I was snacking on nuts and houmous amongst other things. My fatigue was worse when I forgot to eat, or felt too tired to eat. Its hard to motivate yourself to go for a short walk when you are so tired, but it will make you feel a bit better if you can force yourself to. Its not easy but it is doable. I wish I could send you an energy boost in the post!

I am doing OK at last - I did follow the 2 months per month of treatment in order to recover. I know some are quicker than me. I feel much more myself these days, albeit with some pacing!  I did wonder if I would ever be me again, but it does happen in the end. I tried to notice what I could do now that I couldn't do a couple of weeks ago, or a month ago, and in that way I could see that I was recovering even if I still felt tired alot of the time.

I found the ice thing does limit neuropathy. I still got it to my wrists and ankles, but it has recovered now, back to what I had before chemo. I must admit I took melatonin for a few days around chemo as someone told me it helps limit neuropathy too. Can't remember who told me though.  You could ask for a 25 percent dose reduction if you are worried about neuropathy progressing. Hopefully the ice is holding it off and limiting it. My neuropathy was there all the time and was evident on the first day after paclitaxel. It did improve a bit in between each two week cycle but did get slightly more with each one. It was so frustrating, and worrying at the time - I can really relate to worries about what the future might hold if it didn't recover. I am glad to say it has recovered though.

Hormone blockers are OK. I had to fiddle around with brands and have settled on teva brand of anastrazole as I get least side effects with that. The main issues are all the things you read about people having with menopause. I try to see each one as a sign that my oestrogen is low and therefore lowering my recurrence risk, rather than as a battle/ problem. I have a whole list of new things to help with dry skin, dry elsewhere, hair, nails, mood etc, but its manageable and worth it for the benefit. And then theres good diet, exercise, no/limit alcohol, limit caffeine, limit sugar which help with reducing symptoms. And CBD for its anti-inflammatory and anti hot flush benefits! Something I never thought I would take, but I can't do without. 

How much longer do you have to go on paclitaxel? Is it 12 weekly doses, or 4 every 2 weeks? Will you be finished by Christmas? I really hope so. Its hard when you are so near the end, as you just want it to be over, but you have almost done it now. 

Sending much love and strength to you to get to the end, to reduce dose, or to stop, depending on what is right for you. Whatever you decide, be at peace with it xx

So glad to see you recovered from your chemo well in the end. I'm heading for number 3 out of 12 paclitaxel in a couple of days. 1 and 2 had mild neuropathy which came at night when lying down. I am wondering whether to do one more full dose before dropping to 80%. Studies show that an average of 85% of the dose is no difference in efficacy. My fingers are ok but my feet feel like they have socks on and tingle and burn sometimes. I dont notice them when I walk so I guess its not too bad yet. 

I wont be finished by Christmas but thats the way it is :)