hope all goes well for you Joodles.
1 Like
Hey @sam1204 I wondered if I could ask for some advice for a friend whose about to start 12 weekly paclitaxel in a couple of weeks? Anything that helped you get through weekly, sheās really struggling mentally with the thought of it every week and not helped by being mid way through EC so is feeling abit rough anyway!! Did you find you got any major side effects? I know you seemed to sail through the majority of them (and I will of course tell her about the cocoa!!)
I had a good chat with her this morning but Iām on 3 weekly cycles of docetaxel so I know mentally itās abit different than having to go and do it every week! But yeah if you get a min and have any words of wisdom for her please do let me know, I know youāve been busy with various appointments, hope all went well xxx
@katie91 no problem at all. I didnāt have the EC up front but I can certainly tell you my experience of weekly Paclitaxel. First thing is it kind of takes over your week/life as every week you have to go in for bloods then 2 days later for chemo. So not a lot of respite. However, generally if all goes well you can be in and out in 2.5-3 hours if the team are efficient! So thatās a bonus. In terms of side effects, I wouldnāt say I sailed through but what I did have came on around half way through or even later, so the first 6 sessions or so did feel quite easy. My main side effects were:
Allergic skin reaction, mainly on my face but which was controlled using a strong antihistamine (and steroid cream which they gave me but I didnāt use in the end). I used La Roche Posay Effeclar Duo for the breakouts of spots and lots of Aveeno calm and restore oat moisturiser for the dryness. It all worked well.
Nosebleeds, especially in the mornings when my nose had crusted up overnight and then bleed when I blew it. At the worst points I did have a couple of bleeds during the night. Best advice is use steam (head over a bowl with a towel around it, I also bought a cheap humidifier to use in the evenings and at night when it was worst), and a bit of Vaseline to keep it moist. Not much else you can do. I think itās a combo of lost nasal hair and weakened/sensitive tissue. Itās definitely improving since I finished chemo.
Hair loss and thinning - I never lost all my head hair (though a lot fell out and I did shave it), Iāve kept eyebrows and lashes (though they donāt grow and if some fall out they donāt get replaced), but otherwise my body is smooth as a baby!! Which sounds ok but Iām not a fan of the bare lady garden below!
Neutropenia - which you know about and almost everyone gets at some point. I only had it once and therefore was only delayed once with treatment. The magic cocoa 
!
Peripheral neuropathy - this is a common Paclitaxel thing and I only got it in the last 3 weeks and only in the ends of my fingers. As soon as I told the team they reduced my last 2 doses to 80%. Itās basically nerve damage and the onco told me yesterday nerves take ages to heal and they might never be back to what they were. Fortunately itās very mild and doesnāt stop me doing anything, Iām just aware of it. Key point here is as soon as you feel it you need to tell them as the worse the damage is the less chance it will reverse itself after chemo.
Acid reflux/indigestion - I only got this in the last 2 weeks and it was mild. Got prescribed omneprozole immediately and itās been very effective.
Fatigue - again I only experienced this in the last 2-3 weeks, I was lucky. I didnāt have it every day, probably days 2 and 3 after chemo only. It wasnāt really bad, I never spent a day in bed or on the sofa.
I had absolutely no problems with bowels, nausea, mouth, nails (though I did use Polybalm religiously throughout) or joints/bone pain. I never picked up an infection of any kind. In summary Iād say my experience was a lot better than I thought it would be. I was able to keep on doing a lot of what I did before. I donāt know if my lack of really bad side effects was partly down to me being a very fit and active person before chemo.
Worth noting I was also receiving herceptin injections every 3 weeks alongside chemo; they continue now till mid August but having had one on Monday, I think I can safely say Iāve got no real side effects from it that Iām aware of.
I hope this helps! If there are any specific questions your friend has just shout. Iām not disappearing from this forum any time soon 
.
I feel for everyone on this thread and all the symptoms you are going through. I feel like there will always be moments where things will hit us when we least expect, itās probably a way our brains can cope by not being emotionally overwhelmed 24/7. I burst into tears going to sleep last night for no reason at all, and then this morning had an eye appointment talking about my cancer and chemo to the optician, bald head out and holding it all together emotionally all day. Finding joy in a lot of the things you mention in your essay @foxgem (which is beautiful by the way), and Iām cherishing this time I have to do these things. My house has never looked cleaner, my diet has never been better and my walking is through the roof. I never had time to focus on myself before, working a very full on job and being a hands on parent to two young children, and I wouldnāt want to go back to living my life in the same way I used to.
@joodles good luck xx