Hi ladies
had my 1st ZA infusion on tues afternoon and started my 2nd cycle of xeloda the following morning. Have been ok til today. Have felt worse + worse as the days gone on, back is in bulk, headache partcularly when coughing. Even having liver pain. Was putting it down to the ZA as I’ve heard it can cause fluey symptoms?? But wud it take 3 days to kick in? And would I get an actual temperature (mine is 38.3 at the mo, skin red hot + sore to touch but I’m freezin lol!
Just wanted to check other peoples experiences of the s.e’s so any advice will be hugely appreciated
thanks
tina x
Tina - I would ring your onc dept and run it past them. You may well have an infection and need it treating urgently.
I’ve been on zometa for 3.5 yrs and did have flu like symptoms after the first one. Had a couple of paracetamol as felt cold but wasn’t. Was fine the next day and have been ever since. Delayed symptoms are certainly possible. I haven’t had chemo at the same time as zometa but you will need to be extra careful (sorry if this is teaching you to suck eggs!)
Hope it gets sorted quickly,
Liz
Thanks liz. I’ve researched online and apparently 10% can have significant fever etc. My temp isn’t coming down even after 2 cocodamols an hour ago. Have just managed to eat some soup so a bit better than earlier. Just wanted to be sure others have had similar symptoms- I’ve never been neutrapenic and think it’d be a bit soon given my chemo was only tues.
Will see if anyone else has any experiences to shares reluctant to ring triage as they will just send me to a+e. Tgey do it without fail.
Thanks again
tina x
Hi, Tina,
Ya, unfortunately, the SE you are experiencing can be quite common.
Mine actually lasted a full week and really freaked me out!! However, I’ve only had it for the first 2 cycles, and for most people, they DO disappear after max the first 3 cycles.
Do give Dr a ring if you continue to struggle, though.
M xx
Hi Tina, The side effects can appear a few days after treatment, mine is different everytime, sometimes 2 3 or 4 days after i can feel really sore and stiff muscles, exhausted and a bit flu like with headache,and sometimes no side effects, it’s unpredictable for me and i’ve been on it for over a year. I know some people can experience fever with it but just be careful not to put it just down to that as you are on chemo too. Hope you feel better soon.
Pumpkin x
Hi - my ZA se kick in quite quickly, tired +++, cant think, everything aching, but no tempetature. How were your neutrophils this week? I assume you have bloods done before this Cap cycle? I think i would be a bit concerned nd would phone my chemo helpline. Hugs to you - nd hope its nothing!!!
Sadie Xx Xx
Hi Tina, isn’t it always the way that these things happen on a w/e!!! I have never had reaction to ZA and what you are describing - the temp + freezing sounds very like neutropenic fever and I would say you need to be seen at the hospital asap. Can you call someone? You need to just tell them you are on chemo & you have a temp of xx and feel freezing cold. Let them decide what is the cause - don’t put words into their mouths. I know my hospital treated it very seriously when I was like it.
Dawn
xx
Hi Tina,
Sorry you are suffering. I agree with Dawn, if your temp hasn’t gone down with paracetamol and you are still feeling the same I’d ring your chemo dept there should be an out of hours sevice or failing that A&E. Better to be on the safe side. Hope all goes well anfd you feel better quickly xx
Thanks for your advice ladies 
my temp did eventually come down about 90mins after the cocodamol. Thankfully the shivery fever stopped too. Since then I’ve just felt beyond wiped out + aching all over. I thought once I got past 48hrs I’d escaped the se’s but I clearly spoke too soon. I’m going to rest today, temp is fine I just feel lousy.
My bloods were fine this wk, never really suffered with low bloods + never been neutrapenic (*touches wood*). The only issue this wk was with one of my liver enzymes which has shot up with my 1st xeloda cycle. Nurses hadn’t even noticed but I asked specifically about my liver function + that sparked a bit of embarrassment + they called my onc who was happy to proceed with chemo.
I’m just glad I refused this treatment last cycle when I was really poorly with a chest infection, cracked rib etc from coughing. It was a battle but I think these awful se’s on top of everything else would’ve finished me off!!
Thanks again
tina xx
Glad to hear about the drop in your temperature, Tina. One thing I was told when having the first zometa was to drink plenty of water before, during and after the infusion that day (in addition to the normal amount of water we should drink daily- we may be swimming in it!) so I’ve always done it. No idea if it helps but…not sure how it fits in with you being on chemo though.
Liz
Hi ladies just a quick update…
Sadly Saturday was a repeat performance of fri 
Not too bad when I woke but really puffed out. In bed by lunchtime + bad fever + high temp again by 3pm. Felt awful. Same again yesterday but a slight improvement so I’m hoping today will be ok. I’m really considering whether to continue with this treatment if it’s going to affect my QoL so badly?
I’ve a review with my gp this morn + seeing physio from my palliative care team this aft so will ask them to run some bloods .+ listen to my chest etc. Had some horrible chest pains front + back + defo more wheezy .+ s.o.b so will get a thorough check up + hopefully the all clear ready for our Disney trip Thursday
will keep u posted xx