Paclitaxel

@Mkitty68 I found with Taxol, the pain hit about 48hrs later, and mine lasted a few days with the first infusion and then as they went I was in pain right up to the next infusion, it was relentless. Muscle, Nerve and bone pain all of it! I had the rash on both hands, nothing helped it so I just kept it moisturised. It stops when you finish, so that's good! Never heard anything about condoms through Chemo at all...this is the first Ive heard of it. I had FEC first time round, lost libido started to creep in and through taxol too...due to induced menopause 21 months later libido is still really low...all part of it so I'm told. Things change alot but have learnt to adapt. Hang in there xo Melinda 

I started to question my decision to go with the dose dense paclitaxel on Sunday when i was in so much pain & so very tired, but today i seem okay, hopefully it just get's easier for the next week, then as long as I can get some decent pain meds, i know i can push through it... 1 down 3 to go! 

I have just had 3 taxol out of 18  (1 cycle down) after 4 lots of AC....had lots of issues with AC, neuropathy, burnt hands, restless. Now on taxol still neuropathy, diarrhoea,  week legs , breathing issues. My onco said that this would be kinder to my body...don't know bout that...also neuropathy around mouth, sensitive teeth, mouth ulcers....god, is it worth it, honestly!

@MKitty68 I did TAC chemo for 6 cycles. I had nuelasta shots the day after every cycle. I only got bone pain the first cycle and never again. I took half an endone every few hours and my gp was more than happy to prescribe it for this purpose. Btw I'm not a sook either, the bone pain was horrendous.

One thing I am curious about - I was told that i am not allowed to have any NSAID medications (ibuprofen, aspirin, etc) yet i noticed that some of you have had nurofen for the bone pain... ? Is it only with AC chemo that i can't? I must remember to ask my oncologist next week! i do know that i need better pain relief though

I know this thread is about a year old, but i thought i'd comment here rather than starting a new thread. 
I had skin-sparing mastectomy on 23rd May, followed by DD AC (2 weekly x 4) I had a delay halfway through AC due to being run down from moving house and had that god-awful injection Neulasta twice, which gave me the dreadful aches & pains, the 2nd time was swelling either side of my tongue, so told my Oncologist I do not want to have that again, my levels were fine afterwards, so he was okay with that. Then I ended up with a bacterial throat infection (GP thought it was a virus, even though I told him it felt like the beginnings of tonsillitis - he had bloods done, my oncol put me on AB's the following day for a bacterial infection as that's what came up in the blood tests... i was right!) luckily it was all over & done with before my next infusion, so no delays!

Re: the condom question above - they said to use condoms to protect my partner from my bodily fluids as they would be cytotoxic and toxic to my partner, problem is my partner cannot orgasm with one on, he has enough problems due to a hormonal deficiency he was born with. I was told that on AC i was toxic for around 4-5 days, and on taxol only really for around 3 days, with infusion day being day 1.  Anyone who is still fertile, is supposed to use condoms for the entire time of treatment, however I went through a very early menopause 10 years ago and had a hysterectomy 13 years ago, so my oncologist wasn't over concerned. Basically we just abstain for the first few days then both wash well afterwards. The cancer council book recommends using barrier protection for 7 days as a guide. 

I had my first dose dense Paclitaxel a week ago (doing 2 weekly x 4), I am counting infusion day as day 1. and this has been my experience so far;

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. 

My libido has dropped a lot, although if he starts, he get's me aroused but i'm dry - i didn't have that issue with AC.
I had a cold sore on my bottom lip, the cold sore healed but the broken skin is taking it's time to heal. I still have red marks on my arms from the adhesive tapes from blood tests 1 week & 2 weeks ago. I'm allergic to adhesives, latex, sulfur & nickel. The tape I can normally tolerate for an hour or two, then need to take it off. It seems now i cannot leave i on for as long, if at all. 

Later you might find that your nose gets very dry.  There is a product called Nose-oil which can be a huge relief.  I had 12 Taxol treatments and my oncologist suggested it about half way through.  Over the counter at chemists. Just a spray in each nostril.  Michelle x

Today is day 3 after 2nd round and i am definitely better than i was last round.  Still have some joint pain but it is bearable

Hi Tarnya,
i finished my 12 of 12 Taxol today yay.  I did not have any other chemo treatment beforehand, so cannot compare side effects. I did not get one day of nausea.
i had an allergic reaction to the first dose so everything slowed down. I had my Taxol over two hours every treatment and extra pre Meds. The pre Meds have side effects like blurriness especially under lights. I found it very difficult to do grocery shopping in Coles/ Woolies the first few days after treatment. They also kept me awake the first night so I found that not even trying to sleep was the best solution. Just set myself up in front of the TV or with a good book. Aching knees and ankles also stopped me from sleeping. Panadol and a hot wheat bag helped a bit. As previously commented the next day is great but get tired by night time, probably from no sleep the previous night. Third day is a complete washout. I just gave in to the fatigue and slept. 

Side effects from the Taxol had an accumulated effect.  As the weeks went on I did get more fatigued and tired and it took me 4/5 days to feel somewhat normal. I had to have a nap every day. Any housework etc had to be done in small stages. I found keeping up exercise helped even if it was a short slow walk. I have tried to do this every day. 

I found the worst side effect is to my taste. All food tastes horrendous and I find I have to force eat. The dietitian suggested small frequent meals and supplement with hospital grade sustagen. Even drinking water tastes bad. 

Stomach cramps and gastritis also became a slight problem. My oncologist recommended probiotics for gut health and gastro stop if it got too bad. Always check with your oncologist before taking anything. 

Mouth ulcers and cold sores. I have never had a cold sore but got one and it took ages to heal, about 4/5,weeks.  It was recommended to me to wash my mouth out with salty water every three hours to prevent ulcers. It must work as I haven't suffered from them.

i have had nose bleeds every day and congestion. I found a nasal spray helped especially going to bed.

Sorry, this has become a bible.  I will stop now. As you have probably guessed, I will be wide awake tonight.
hope all goes well with your ongoing treatment
love and hugs
Bev 

Hope things improve.