Paclitaxel side effects - Struggling and feeling rubbish

Hi Hwh

I had paclitaxel chemotherapy for my endometrial cancer in 2022.

Your experience at the moment sounds very familiar to me. 

I did feel wiped out by it and really tired. 

The aches and pains can be common with paclitaxel- I had it particularly around my lower back and hips and was told it was where the medication is affecting the area where red blood cells are made. I was given medication for it. 

I had the horrid taste in my mouth- sort of metallic and food that I would normally fancy, tasted off. I found citrus flavours more palatable. 

I had sore toes- mine was neuropathy starting- so sore, tingly, painful. 

The best thing I found was to fill out your booklet (I expect you have been given one by the hospital) and put how you are feeling each day and any side effects and medication you have taken. I found it helped as there tended to be a pattern to how I was feeling. Also you should have a 24 hour hospital number to call and it is well worth giving them a call and telling them how you are feeling. I found a lot of what I was dealing with could be helped by medication and if it wasn't just the reassurance that it was normal and would pass- did help. 

My tummy was disturbed for mainly the first week of each cycle but the nausea persisted longer. Again there is medication they can give you and I found sometimes it was as much about how you take the medication rather than just the actual medication.

I split my meals down and ate little amounts. Eating my main meal earlier in the day helped and also taking anti nausea medication 30 minutes before. 

I did feel quite low and fed up at times and I think this is pretty normal really. Where I did not feel up to walks, I found just sitting outside in the fresh air helped. Also moving around. If I sat in one place or on the sofa too long it felt worse. I also made sure I got up and dressed each day- even into t shirts and joggers after a shower- helped. 

Mentally it helped to try to think that although the paclitaxel was making me feel really unwell- it was because it was blasting any cancer cells.

It is not an easy treatment and it will pass. 

Good Luck with the rest of your treatment

Jane

I found paclitaxel a challenge which surprised me as everyone said that EC was worse. For me it was the tingling in my feet and fingers. Throughout my treatment I felt fatigued and so this was more of the same. My oncology physio had said that if I found the  treatment too much to speak with the oncology team. My concern was nerve damage which to a degree I still have.  treatment ended in November 2022.  They reduced the amount I was being given half way though the treatment.  I would encourage a discussion with your team. Ultimately they will  make any decision. In those discussions I was always factual and described my symptoms.  I never elaborated to get their attention.

I had people who I called chemo walkers.  They would call and we would go for a walk together. It helped for me.

All the very best on your journey

Hi. How many sessions deep are you in? I have done 8, last one is next Monday. I know it’s so hard. I have just been in tears tonight with neuropathy. I’m scared they will reduce my dose as surely that will make it less effective and more likely to come back in the future. I know it’s so hard but i am just trying to muddle through, keeping active every day is helping, using my trampoline, rushing around the house doing housework is really helping. 

I’ve had the some foods aren’t tasting great but finding sucking on a mint or a lemon sherbet helps.