Afternoon all. Started to write ‘morning’, then realised I’d missed it, ha ha.
@zebramoon must feel weird getting used to being at end of chemo, hard to believe? Did you walk far , and how did that feel?. I’m amused by your mistaken identity! Were you dressed in period costume?! ? Glad you had sun, how lovely, can’t wait for Spring too!
@mummyk I empathise with the bone/muscle/joint ache, I have same on docetaxel, yes for me started 2 days later too, after feeling a bit buoyant with steroids before that hit. Sorry half term won’t live up to hopes, but well done for trying something. Hope it goes ok and boys can enjoy a change of place at least. Bloody annoying having to race back Monday though.
So, I’m here getting used to the new side effects of Docetaxel. Different, not sure better or worse than EC. So far no neuropathy but did have v hot feet evening of day 2 and 3 and put my cold socks back on. Don’t miss the nausea or crushing fatigue of EC. Fatigue with Doc is definitely there but feels v different. With EC it felt almost external, like gravity had shifted and geography had changed ( slight inclines became hills , hills became mountains ..) This feels more internal. Very weak all over, with Bambi legs and jelly arms. Oh, and bone/muscle/joint aches are horrid, esp ribs, skull, head, neck , shoulders, spine.
I have a little itchy rash on my neck that I’m monitoring. I wonder if side effects will all ease off in next few days?
All in all nothing outside ‘normal’ side effects, and feeling relatively lucky fortunate really, so far.
Thanks! I have some codeine left over from surgery if it gets too much, but will definitely try to get some more ahead of docetaxel round 2! I’m hoping , at Day 5 now, I must be at peak and hopefully better tomorrow or day after ?
@nib32 definitely have a chat with you BCN. I know exactly what you’re experiencing. For me it felt like a pinball machine in my entire body. Instead of flashing lights, I had stabs of pain that moved randomly around my body at speed. Some pains were neuralgic, some were shooting pains, some were aches and some were spasms. It was awful.
It will pass. I had it in the bad Filgrastim week, then it did ease off. Don’t be brave with pain killers. Shove everything down you that you are permitted to take.
I spoke to my BCN and in the end it was agreed that I could have a reduced dose at my next infusion. Now your oncologist may not be able to do that for you, but if you don’t ask you don’t get. Mine agreed and I have had a MUCH better ride this cycle.
I hope they will be able to respond similarly for you. X
Tried calling help line but no response for ages, while waiting got freaked out as they say if chest pains go to A & E/calll999. Is it chest pain or rib/shoulder/neck pain? Best be sure so I’m here now being checked out in a nice quiet side room.
@nib32 oh poor you! You’ve done the right thing though. Here’s hoping they can sort you out so you can get back home asap. Sending good vibes your way. x
I’ve been checked for chest pain maybe around October time. They can quickly rule out damage to the heart / heart attack with a troponin blood test and will probably do an ECG. Apparently there’s other stuff like lymph nodes near the sternum or costrchondritis (something to do with rib cartilage) that can cause chest pains and taxanes are known to cause musculoskeletal pain in the chest so hopefully you’ll get some reassurance. I tend to notice twinges in my chest at rest but it’s better not worse when I’m active - worsening with activity would be a red flag. Hope you’re ok and home asap x
P.s. in that museum I was wearing a long skirt with a long jumper and a headscarf so could have looked like a Victorian era fishwife in the poor lighting!
So had bloods, ECG and chest x-ray. X-ray ok, one raised heart marker, so they have to repeat blood test to see what direction it’s all going in. Also repeated ECG. Another waIt and see … I’m hoping it is all normal taxane pain, but can’t ignore heart . I have also been waiting on a cardiology appt due to heart murmur picked up a while back , but murmurs are often insignificant I think.
At least they’ve finally given me some painkillers!!!
@zebramoon Victorian fishwife image makes me laugh
And in the meantime they’ve found my neutrophils are v low so now going to give me IV antibiotics through cannula. Not had so many damn punctures since I had my PICC line in but they won’t use it in A&E sadly ….
I’ve got a murmur from mitral valve prolapse and it doesn’t cause me any issues and wasn’t of concern for chemo (plus Phesgo which is also cardiotoxic) so hopefully won’t be an issue!
Home now, exhausted. Not sure what I achieved but better safe than sorry I guess. Had to put mind at rest re heart, and am alerted to fact neutrophils v low which might not have been known otherwise. Not 100% sure why I’m on antibiotics but maybe better safe than sorry. Anyway good thing is I have an existing appointment with oncologist on Tuesday, so any further questions for then.
Are you due to have EC and docetaxel? I think most of us found the waiting for chemo to be the worst part - the chemo itself isn’t as bad as you imagine in the run up. The oncology teams are so lovely and supportive it makes everything a lot easier.
I had 3 rounds of dose dense EC (every 2 weeks) and have now moved onto paclitaxel. The EC does hit hard with fatigue so make sure you’ve got support in place if you can. My first day I was quite sick but rang the helpline and they immediately upped my anti sickness meds and I was then put on stronger ones for the other cycles so didn’t have any more issues - if you struggle with any side effects your team should be able to adjust things to compensate, you don’t need to suffer! I did ok on the filgrastim injections - I took them in the evening so I could go to bed with hot water bottles while they kicked in.
Wishing you all the best as you start your journey! x
Hi @sammy75 . I’ve had 3 x EC every 3 weeks and 3 x docataxel every 3 weeks. I have found it not too bad. With the EC I felt sick for the first week but wasn’t sick. Then second week was better and third week back to normal. I also had a headache for the first week. It was reassuring to know that they could increase the anti sickness if needed, but I was ok with the amount they sent me home with. The docataxel was similar to the EC for me (thought my Dr had said it is usually easier). After my first dose I peaked a temperature so was told to present at A&E. They kept me in for 4 days because my temperature was persistent and they treated me for sepsis, but I don’t think I had sepsis. They said because I had a temperature they don’t risk it so treat you as if is confirmed. After that they decided to reduce my docataxel dose by 20% and the last cycle was drama free. I am due to have my last chemo on the 16th Feb and I would say in summary, it’s not easy, but also not as horrible as I was worried it would be. You’ll get through one cycle at a time and suddenly it will be your last one x
Hi Sammy, I had paclitaxel and carboplatin weekly starting in August then started the epirubicin and cyclophosphamide cycles in November. The initial 12 weeks I generally had one day per week of crushing fatigue but felt otherwise ok, the EC cycles were harder but no actual vomiting and no over nights in hospital. I’m a carer for my dad and also very scared of vomiting so I made a fuss and got Aprepitant for the EC cycles (there are other medications they can give for later in the cycle but it clashed with my regular meds). Make sure you take the Ondansetron as prescribed even if you feel ok as it’s easier to stop getting sick than wait until you’re sick and fix it. After about 5 days I had a gnawing hungry sick feeling which it turns out is to do with replacing the cells in the gut - eating bland food little and often and occasional gaviscon helped with this. Difflam mouthwash helps while the same cells are regrowing in the mouth. I’d say overall chemo wasn’t fun but wasn’t as bad as food poisoning by any means. You may find certain food and drink plays you up - I found the last cycle easier where I avoided dairy for a couple of weeks after the infusion. I’ve also received each infusion on an empty stomach which I’ve read can help side effects. Either way the time mostly flew by and I finished mine 2.5 weeks ago. I’m tired and weaker than before (but I have ME and some other underlying issues) but I don’t feel ill now. Hope yours goes really well x
