Taxol

Good idea, I dipped my tofu into my green tea the other day, and today I was talking to a lady and put a pair of sunglasses on over another pair already on my face. FFS!

I found it to be really helpful as I’d forget some of those details, and when they occurred, especially with chemo
fog brain! It’s actually interesting reading back through it, I can now recall the details I otherwise forget. 

wow @MKitty68, thanks so much for all of that! You have inspired me to write about my own symptoms as I seem to forget mine as soon as they have passed!!!

@kezmusc i only had it that first time, it didn't return after that thankfully

Hi @MKitty68,

Your the only other person I have heard speak of the skin rash.  I had it as well all up my arms and knees and had to stay on prednisone the whole way.  My onc said it was "not normal and very odd",  I just put it down to my dodgy skin but maybe not it seems.

Hi @Spiv1803  you may notice that most have Paclitaxel once a week for 12 weeks, however some of us have it DD (fortnightly x 4 infiusions) - it's a long day isn't it... I made myself comfy, they generally put me into a bed rather than a chair as I was there for so long! With the phenergan, dexmethasone & flushes in between, it's around a 4 hour infusion.
I got comfy, rolled over & went to sleep (the phenergan does that) the first night as i'm sure you have already experienced, you won't sleep due to the bag of Dexmethazone. Don't worry, it's normal. I did have trouble sleeping a lot though. 
I found the neuropathy set in from the first day or so. i still have some in my feet now, and i had my last taxol infusion on 26th October. I found just keeping my feet warm at night helps, as they feel cold - although not cold to touch. It's a weird sensation. I had a lot of ankle aching, however this could have been from arthritis as it was QLD's storm season & we had a lot of rain. 
I detailed most of my first two weeks in a word document, hopefully this may help. I found that just knowing what is going to happen each day helped me a lot, i just planned my life around it really. 
I did have vaginal dryness & loss of libido as well. 

Day 1. (Thursday) Including the bag of phenergan (Promethazine) and the bag of dexmethasone, the infusion took just short of 4 hours.. i slept through half of it, likely due to the phenergan. Felt sleepy on my 1 hr bus ride home, but i'd also been in the hospital all day. However, tried going to sleep that night with not much luck, i suddenly had energy LOL. 

Day 2. (Friday) whoah, i had energy to burn, felt great. I hung curtain rods (up on ladder with drill/driver) & curtains, did housework, put up a privacy screen on the end of our deck, did washing, etc. apparently that's the effect of the dex. Slept okay with taking phenergan tablets to help. (my partner snores!) 

Day 3. (Saturday) Still feeling good, no bad effects it seemed, more tired than the day before though, but then late at night my legs started to ache a bit. I've been on panadol osteo for years for osteoarthritis, so just took my usual dose that night. We had a big day out going to the RNA showgrounds big adopt-out, specifically there to meet one particular dog, so not a lot of walking around, but there was some. Then we went to a BBQ on the other side of the city for a friend who is dying of brain cancer (likely his last birthday party), so i thought perhaps i'd just overdone it a bit. 

Day 4. (Sunday) OMFG the pain... my body hurt from my hips down, muscles, bones, i went searching online to see if this is what I should expect, to find that yep... basically 48 hours of it, and i was soooooo tired, i slept most of that day & that night, instead of my panadol osteo i took some panadeine xtra that my partner had, it dulled the pain but didn't take it away. 
I was in so much pain & so very tired I was barely able to make it down & back up the stairs (high-set house in QLD). My temperature was also high (37.8) so i wasn't doing anything more than get myself food & drinks. 

Day 5. (Monday) (temp 37.6) Not quite as bad as the day before, and i could barely make it up & down the stairs. (my dog has insecurity issues & doesn't like to go wee unless i go with her - i found i had to just put her out & let her sort it out LOL) There's no way i'd have trusted myself to drive though. Had a very restless night. I also found i was constipated. I'm too scared to take anything for that as i'm told that taxol causes the runs... i'm guessing i was a bit dehydrated though. 

Day 6. (Tuesday) (temp 37.4) Bone pain gone, still a little achey, but no energy, and almost pulling myself back up the stairs... i stripped the bed, (clean sheets help me sleep better) just putting on the fitted sheet & i was having hot flushes, I had a friend visit, so just a chilled out day. made the rest of the bed in stages as i'd get too flushed. 

Day 7. (Wednesday) (temp about 36.6) no bone pain, but my lower legs and my right hand and arm have a fine itchy rash, like dermatitis. I do get flexural psoriasis (in the skin folds and is raw skin rather than crusty spots) i had been warned that this could act up more during chemo but antihistamines help. I have used some of the cream i have for my psoriasis on the rash as well as sorbolene, which seems to help somewhat, as do the antihistamines. Went up & down stairs, did 2 loads of washing, hung out & back in, cooked dinner. 

Day 8. (Thursday) (temp 36.4) I feel fine, i'm eating fine. But this damn rash! It's on both hands & lower legs now. it's itchy, but tolerable. I have a little energy now at least. I have started to get some neuropathy in my fingers, I had tingles at times previously due to pinched nerves in my spine, but this is different. 

Day 9. (Friday) I’m struggling to get to sleep at night, neuropathy in my fingers and at times my toes is annoying, but not much more than that. At times I get hungry during the night, so I get up & have something light to eat. At times I feel irritable when I’m trying to get to sleep, not sue if that’s his snoring or just me being restless & unable to settle. Energy levels are okay. No leg pain, except late at night when I’d been sitting for a while my legs ached a little.

Day 10. (Saturday). Some things taste different to how they did before. I have moderate energy levels, not hyper but not really lethargic either. Hung out washing during the cooler evening so I was not exposed to the sun. feeling a bit restless. Not seeping well. Insomnia getting worse.

Day 11. (Sunday) Mild neuropathy, just annoys me at night time. Insomnia is bad. Pills not helping so tying to sleep without taking any.

Day 12. (Monday) Libido is coming back. Mild neuropathy seems to be really affecting my ability to fall asleep at night, partner’s snoring is not helping! Slept on the couch for a little while again last night.

Day 13. (Tuesday) – feeling fine, mild neuropathy in my fingers & toes.

Day 14. (Wednesday) – energy levels are fine, eating well. Slept great last night after sex, then stretching before sleep.  But tonight I’m struggling – it’s now 2.44am (Thursday) and I am tired, but struggling to fall asleep.

Revitanail varnish sounds good ! I’m going to look that up :) 

I was given carboplatin because of brac1 mutation. Mine is weekly for 12 weeks with the taxol - I’ve read that some people only have it every 3rd taxol but I think this is at a higher dose so the side effects are worse :( 

@Jen79x , @RachelG Any specific reasons why were you recommended carboplatin along with Taxol / Pacitaxol? Also is carboplatin being administered every week or is it every 3-4 taxol cycle?

I started my first weekly pacitaxol and carboplatin yesterday. Was a bit nervous as to what effect this medication would have on me. Felt really tired and spaced out afterwards but think this was from the pre-meds. Had a good sleep though and feeling pretty good today. I have shellac gel polish on my hands and feet so will see how this goes with the effects on the nails