Morning Ladies, I have been a bit quiet for a few days as been having an even worse experience of tax this round than last apparently my tax dose was increased for round 2, jeezo it hit me like a ton of bricks. I started getting severe muscle weakness and pain in my shoulders and top of my arms on friday night, during tje day on saturday I couldn’t even lift the duvet cover up to shake and couldn’t lift my arm high enough to open the kitchen cupboard, this stiffness got gradually worse until by sat night time I couldn’t move my arms at all ? I had lost all function of the muscles, it was agony and so scary! So went to hospital and they had to put me on iv morphine for the pain!! We think it was a double whammy of docetaxol muscle pain and the injection bone pain all hitting at once. The excruciating pain died down on sunday and went back to just a heavy sore achey muscle but was able to move. Since then ive had fevers, awful head ache and sore swollen bits at the back of my mouth, so off work this week in bed. I hate Tax ? today the headache finally feels a little better and temperature is fine so hopefully coming towards the end of the worst part and maybe get 2nd half of the cycle feeling normal
That is great news on your acan camilla always great to hear when they can see a good response
Kirsty, really hope you start to feel better soon, I’ve had the joint and muscle pain to the extent I could barely walk in the first cycle and the last cycle couldn’t move my arms or neck fortunately it only lasted a few hours, its awful.
Bed is the best place for you in this weather, especially with the forecast for Scotland!! xx
Yeah it was really scary, I didnt know it could do that?! I knew you could get joint and muscle pain but no one warned that it could be to the extent you cannot move or walk. It is horrible isnt it rabbit! So im not the only one to have had it that bad.Glad yours only last a few hours, the worst of mine probably passed after 12 hours. They are prescribing gabapentam painkiller tablets that are for it that you start in advance for next time, im praying they work.
Yeah no one explained the docetaxol dose geta increased on round 2 of it, until i was in hosp and the doc said thats what had been done.
I thought the pain was also from the injections but im back on them now and has 3 days worth a no major pains so it must have all been muscle/joint stuff
Oh the snow here is crazy!! All buses cancelled in Edinburgh and airport closed/trains off. So im safe in my house… ill see if I can send a pic x
Am sorry to hear the ladies on the T treatment are having a rough time.
Am day 10 of treatment and am feeling normal again
It’s funny it’s been day 10 after all the cycles I feel half normal
Xx
I also had that pain Kirsty. Only on the fourth cycle, mainly my arms, shoulders & legs. Just lifting the cushions in the bed was painful & a huge effort! I hope you start to feel better soon.
Oh thats weird you only had it on 4th cycle unicorngirlmummy, wonder why you didn’t get it on the other cycles too? I didnt get it on 1st cycle of tax eithee but then i assumed it was maybe the increased dose that caused it. That is exactly what it started with with me, unable to lift a cushion! And I thought hhmm this isnt right lol xx
Wow Kirsty… that’s scary!! They definitely should have told you they were upping the dose though! I didn’t know that was even a thing??
Hopefully they get the meds right for next round though…!!
When are you next seeing your onc? Xx
I know, apparently on the particular regime I am on FEC then T, the first T is a reduced doae then goes up to full. I am. Seeing onc on 23rd March but next round on 15th, but as ive been in and out of hospital the team know whats happened and eaid they have full notes on for meds next round so fingers crossed. Im thinking of taking the week of work after treatment in advance as im pretty sure ill have another eventfull week 1 ? rather than waiting.on it to happen then having to call in sick again xx
Give me FEC back any day lol it was a walk in the park compared to this. But your right, only 1 more to go so I will just need to grin and bear it. Your round 5 must be soon?! Xx
No harm in just asking Camilla so that you
They obv do it for a reason i suppose so maybe best to stick with their plan but at least can just be aware that the side effects could be worse on round 2 xx
Round 5 is next Tuesday for me Kirsty. Dreading it already!
I had pains with my first cycle (not as bad as you though) but it’s the nausea that floors me! Been told that the Carboplatin rather than the Docetaxel though xx
I thought it must be soon, I hope they finally find something to ease the nausea, must be horrible having that for so long each time! Only 1 more to go after that tho xx
Sorry to hear you are still struggling with this Camilla, I dont have a lit of advice as in general my appetite has been ok throughout chemo, but this week when I was feel absolutely dreadful, included loss of appetite and sore mouth etc. I only manahed very little bits of things and only select few things i fancied. I had boiled egg in a cup with whitr toast (like when i will ill when i was little) and I also managed some mince with mashes potato, just soft easy to eat things. Little and often is all you cam do. Maybe some crackers or some banana? I hope it gets better soon.
Im finally feeling more human this weekend on day 10/11 xx
Sorry to hear this Camilla. As Kirsty says, little & often. It’s hard when nothing tastes right though. I’ve found white bread toasted still has some taste, the nice fresh crusty loaves!! Ready salted, salt and vinegar crisps. What about those little ambrosia pots of custard or rice pudding? Drinking was hard too but I found sparkling water with squash easier than still water. Are you on omeprazole or lansoprazole? Once my omeprazole was doubled to 40mg that really helped the painful heart burn. I hope you start to feel better very soon.
It’s really hard when you’re feeling so awful. Write everything down now whilst you feel terrible, then you can tell your oncologist when you next see her/him. It really isn’t much fun but you’re getting there…through gritted teeth!! ? I’m now 2 weeks post cycle 4 & things are starting to taste a bit better, not great but not so hideous. I’ve got a cold & a cough so that doesn’t help. My muscles are still very achey but it is much better than it was a week ago. Fingers crossed that you start to feel better & that the soapy taste goes away!!! Xx
apparently my tax dose was increased for round 2, jeezo it hit me like a ton of bricks. I started getting severe muscle weakness and pain in my shoulders and top of my arms on friday night, during tje day on saturday I couldn’t even lift the duvet cover up to shake and couldn’t lift my arm high enough to open the kitchen cupboard, this stiffness got gradually worse until by sat night time I couldn’t move my arms at all ? I had lost all function of the muscles, it was agony and so scary! So went to hospital and they had to put me on iv morphine for the pain!! We think it was a double whammy of docetaxol muscle pain and the injection bone pain all hitting at once. The excruciating pain died down on sunday and went back to just a heavy sore achey muscle but was able to move. Since then ive had fevers, awful head ache and sore swollen bits at the back of my mouth, so off work this week in bed. I hate Tax ? today the headache finally feels a little better and temperature is fine so hopefully coming towards the end of the worst part and maybe get 2nd half of the cycle feeling normal
always great to hear when they can see a good response