Afternoon all, hope everyone is coping as well as can be. I’ve been on fortnightly pax but liver up again so they’re moving me to weekly. Anyone else on weekly and can share if still get side effects?
Thanks x
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@jnra I’m interested in this too as I’ve paused my chemo as I can’t go through another week of joint and bone pain like it again. Some hard decisions to make and have an Onc appointment on Monday.
Worried sick but never considered the possibility of a small dose weekly and the Macmillan nurse didn’t mention it as an option.
My treatment this week…kindle and camper 
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@indigo2 lush, wish I was there!
But yes, apparently weekly is common although it does add on another three sessions/weeks which is annoying!!
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@indigo2 Looks so lovely. My oncologist said if the bone pain was too much she would reduce the dose. I’ve had bone aches and pains from day 3 to 7 (today). I’m not sure how much is the chemo and how much is the injections as the throbbing back pain I’ve had before with injections didn’t start til the evening of day 5.
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I had back pain and it started on day 6 of injections. It was def the injections. What i don’t understand is why some people have them for 3 days and others have them for 7 days.
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I’m on weekly, and if your side effects are 3 x as bad as mine having it three weekly, then I wouldn’t be able to do it.
I had first pax last Wednesday (next one tomorrow). The aches started on Friday after the steroids and I still have them. I’m not on filgrastrim. I’ve also had bloody nose, fogginess, stomach upset, fatigue, fuzzy mouth. For me this is worse than EC (where I was also on a lower dose).
BUT I had a dodgy liver in the first place that doesn’t cleanse impurities as well as a ‘normal’ liver, so I’m not sure I’m a helpful comparison really, sorry.
I would still opt for seeing if they will try you weekly, or at least see if your onc thinks SE’s will be better (I’d be surprised if they’re not), as we have to try and get through this any way we can xxx
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I’m on weekly paclitaxel and have had 4 so far (following on from 3 x EC). For me, it is doable. I find it better than EC as there has been no nausea and I feel actually pretty energetic (relatively) for 36 hours post infusion.
My main side effects are fatigue but I can still go for dog walks daily. I also have some permanent gut discomfort but its not terrible - maybe just more wind. I also have a dry nose and there is blood when I blow it. It’s annoying rather than bothersome. There is an unpleasant taste that makes me seek out fruit and especially citrus fruit.
I don’t need filgrastim injections on weekly routine, in fact I don’t have any medication to take at home. I haven’t yet had other side effects but I do ice my feet and hands. My eyebrows have almost disappeared. You only get a day or so feeling you have more energy before you have to go again. But I am managing to potter around doing bits and bobs.
My oncology nurse says it’s much gentler than the 3 weekly dose dense schedule but chemo day comes around far too quickly for my liking! She says that people who found EC nausea-inducing usually prefer it. I’m just fed up of it all now and want to feel myself again.
I hope that helps a bit.
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Isn’t it funny how we’re all different.
Im glad that there’s another perspective, as I wasn’t sure whether to put my experience on here, so I’m glad that you are able to show how it can be (and probably likely is for the majority) “better” on weekly.
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Thanks for your replies girls…and such variation.
My EC was 2 weekly x 4, I do have a mild heart problem but as you can see fortnightly dense dosing, so little concern. Initial bad nausea and awful mouth but improved and doable but increasing breathless and ridiculous fatigue to the point they delayed my last EC as I struggled walking up the stairs. Filgrastim each time, day 3 for 5 jabs, very uncomfortable back, lower joints and terrible headache all along but nothing like after my first Paclitaxel dose. Flushed very itchy face the evening of my first dose so on Piriton but then rocketing lower joint, pelvic and limb pain from day one exacerbated by jabs day 3, pain every day for over a week and morphine 24/7. Not experienced anything like it. I missed out a jab dose because I was scared to take it. I hope it comes across as realism and hopefully a helpful suggestion to prepare decent painkillers as opposed to scare mongering.
Need time to pause but as my tumour was large, fast growing and hit my nodes the Predict indications are obviously not great if I throw in the towel. Time to prepare a list of questions for my Onc to the point he’ll wish he had a day off! 
Keep going girls at what ever level you can!
My bedtime view…
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This is my go to song!
It doesn’t open… Johnny Cash and the ‘Ring of Fire.’ More toilet humour!
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100% @mrsjelly
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Mrs Jelly 
Shi xx
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So the bone and muscle pain started last night (day 3 of my first paxi) before my 1st jab and then increased all night. I feel like i have concrete legs this morning. I took some paracetamol at midnight and got a couple of hours sleep. Fingers crossed it doesn’t last too long xx
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Saw my oncologist today. She thought the bone pain from days 3-5 were the Paclitaxel (manageable for me with paracetamol), whereas the rest was the injections, this was the throbbing pack pain where cocodomol is my friend.
On the plus side, I had the first decent sleep I’ve had for months last night! 
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Bet you’re pleased on getting some decent sleep - it can work wonders!
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I spent thursday in a & e after speaking to my unit about leg pains and being rold to get to hosp asap. They wanted to rule out spinal nerve compression - total panic set in but after tests its just a reaction to paclitaxel. Now taking Dihydrocodeine (normal codine makes me spaced out). The pain releif is working apart from my ankles still hurt and i feel like my legs are full of concrete.
Hope everyone is ok xx
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Oh @dragonfly2 how scary that must have been… I never thought I’d say this but I bet you are glad it’s the pax!
My aches haven’t set in (yet), but have been getting cramp in hands this evening. Nothing compared to what you’ve been going through though.
Hopefully the dihydracodeine does its job and you get some rest tonight… 
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Morning all, I’ve been getting acupuncture which helps with the aches slightly. She recommended this yesterday which I’ve ordered so I’ll let you know how it is. I already get restless legs but the pax intensifies it and I’ve been getting aches and pains down my back and legs. https://www.sweetbeeorganics.co.uk/products/sweet-sleep-magnesium-butter?variant=30945927037018&&utm_campaign=21029965815&utm_term=&utm_source=google&utm_medium=cpc&utm_content=&utm_device=m&gad_source=1&gbraid=0AAAAACtVDtwkzWvDZT5t946dJk6WfTpQQ&gclid=CjwKCAjw7pO_BhAlEiwA4pMQvDFizLp6cl7BXOBxDT_fZtC9xqCAX8Hk_HDB6LEWKyQ16DxsZ2c6YhoCwEMQAvD_BwE
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Thanks @jnra, that’s useful, I think I’ll have a look through my creams and see if I have anything similar - good thinking… I get restless legs too anyway so may be worth trying.
On that note, I did read in one of these threads that if you get cramp, quinine is supposed to help (tonic water). I rushed to the corner shop last night when I started getting it in my hands, but was too late!
Touch wood only a hint of aches last night, so keeping everything crossed this morning…
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