Hi JoJObro
I have just had my 1st tax ,carboplatin and herceptin on 23 rd march, I had herceptin first to check there was no bad reaction.I have been ok , just all the usual SEs that most seem to get, I had flu like symptoms
for 24 hours off herceptin. I think being well informed and prepared are the best bits of advise I would give.
Jean
Hi tillybob
I am a bit worried about the herceptin. How long after did they give the other chemicals… straight away? That’s what I am expecting. Did you have to take steroids the night before? …and how long did they do it over, i have heard that the first infusion is slower. Are you allowed to take meds for the flu like symptons? My mum is sending me some dissolveable paracetamol and codeine. OOohhh… its a bit scary!! Have you been driving, have you been capable of everyday stuff… like hanging out the washing etc… sorry so many questions, i too need all the answers… maybe its because i’m a virgo!! lol
Lizzy xx
HI all,
on the driving front when I had my tax bit of FEC-T I just couldn’t concentrate so decided against more than about 10 mins of driving. My onc said its the brain acting like a sponge and taking up all the drugs - good I thought for giving those nasty little cancer cells a run for their money…no wonder we get chemo brain if its a sponge at work!
JoJobro - I got myself in a right old tangle about swapping from the fec to tax - it was just that I knew how I was on the fec and didn’t want to start over with a new drug - but you know what - the nurse was fantastic when i told her how worried I was - she watched my like a hawk when giving me the drug and when i got a bit of a hot flush she slowed the drip down…then kept watching. Then the docs kept a close eye on me. I did feel really tired and I happen to get periperahl neuropathy but it went as soon as they stopped the last tax…
just think how toxic it is for those rogue cells!!
I won’t pretend it wasn’t hard work but it soon passes over,
bw Nicola
Jojobro,
I will be just ahead of you with the tax and herceptin, so I will keep up to date on all the SE’s etc. cross fingers we will both be fine!!
Lizzy xx
Lizy ,
I had herceptin the day before chemo, It was infused over 90 mins instead of usual 30, then I was observed for 2 hours after, I was absolutly fine throughout, there is a danger of reaction and that’s why they keep an eye on you for so long.I did steroids the day before but that was because I was having Tax.Oh and they gave me paracetamol before they started the help with symptoms. I took another 2 that evening and was feeling fine next day.I was told not to drive the first treatment but if there were no problems I would be ok in future, This I am glad about as I have been told I will stay on it for ‘life’ or as long as I need it.The other stuff regarding everyday things , I was ok until the Tax started to kick in then I have been pretty tired ,achy and feeling sick.
I understand my next treatment will be done with all drugs on the same day , so hopefully I will only be there for about 3 hours next time.
Hope that helps.
Jean
tax is tough i have just done number 2 of three. the first wore me out for 13 days i felt like i was giving birth at one point the muscle pain was so bad but second session dr has reduced as s/es were so severe. he said that you don’t have to feel so bad so discuss any fears prior to treatment. day 4 after treatment and teeth are sore hands are flaking and achey but this time last session i couldn’t even get out of bed. its important to remember to take each day at a time everyone will react differently rest, drink and eat small meals and sleep… i can sleep a whole day and still feel tired. this treatment doesn’t last forever and we are the fortunate ones we are getting the best treatment and will come through this wiser, kinder nicer and more generous.
Elizabethtracey, I’m glad you’ve mentioned feeling as if you’ve got mumps because I feel like that as well but I hadn’t come across anyone else who had that. It’s not fair when even eating and drinking water hurts!
Lizziespain, you really do need to take your temperature every day when on chemo as it’s often the only sign you have an infection. I’m sure you’ll be told that when you start.
For the same reason I’ve been told to avoid taking paracetamol if at all possible as it acts by reducing your temperature so can mask infection which would be dangerous. I was told to stock up on codeine and ibuprofen so I alternate those but I’m not taking the max daily dose of either if I can help it. It’s been hard the last couple of days though as I could barely stand.
Neulasta (pegfilgrastim) is a one-off jab to boost the white cell count. It’s very expensive so is only usually given if you need it. Filgrastim is cheaper but doesn’t stay in the body as long so has to be injected every day for a few days. I had cellulitis after my first FEC and my WBC dipped very low on FEC3 so I’m having the jab every time now. Even at somewhere between £600 and £1000 a jab it’s cheaper than me having a few days in hospital!
I’m going to take ibuprofen an hour before I have to drive tonight then I’ll take it slowly. It’s all quiet country roads thank goodness!
Jane xxx
Just a quickie on driving - I drove all through tax - never even thought about not doing so! I would not have done so if I felt that I couldn’t but never had any problem with it at all!
Well, the driving went OK tonight - I took it slowly and I don’t think I could have driven faster if I tried. Brain still a bit fuzzy so I’m glad it wasn’t on busy roads. There’s no way I could have done it yesterday as I was in far too much pain.
The main problem was actually my Hickman line. It’s been in just under a week and is still tender all around as the surgeon had to try four areas to get it in. The entry hole is quite high on my neck and the tube passes over my clavicle, quite close to where the seatbelt goes so it was uncomfortable and I was terrified of braking suddenly and pressing the seatbelt against the exit point. I drove part of the way with the seatbelt half way down my right arm - good job no police were watching!
Jane xxx
Alto, I use my lapels to cushion hickman site, I had a bit of a prob with the neck scar, it was quite tight and caused the line to be nipped and difficult to access, I gave the scar a good massaging when comfortable and the scar is now lots smoother and the line samples beautifully.
Morning everyone, just off to the airport to pick up OH, he has a few days in Spain before going back to the UK and starting new job on Monday.
Alto… I have a portacath fitted in my neck/chest and my line also goes over my clavicle and its vry uncomfortable with seatbelt too. I have been tucking mine under my arm (I know, not very safe) but think I will take a scarf and pad it out for this airport run.
Glad your driving went OK yesterday.
Woke up early with an anxiety attack this morning after thinking about this bloody TAX and Herceptin… what a idiot I am!! Bought my thermometer yesterday and have checked my temp about 5 times so far, haha, mine won’t go past 36.2… hoping this is a good thing.
Hope you all have a good day
Lizzy xx
Moser… how did TAX affect you?
Lizzy x
lizzyspain i try and put padding over my portacath your right it is rather uncomfortable otherwise.
Lizzy, Liz et al
I think you know if you are good enough with you se’s to drive or not. Personally on TAX day 2-14 I wouldn’t even contemplate it as I know I’m too poorly to concentrate on even ‘flog it’ let alone driving a car. We have to remember cars are killing machines.
I went to my hospital today for line care, day 8 out of my third TAX and my hubby had to stop half way home (a 20mins or so journey) in a layby so I could pull myself together. I was passing out from low bp.
I am so looking forward to tomorrow, and then the day after …
Good luck everyone and hang on in there.
I xx
Lizzy, I had the usual SEs I think, the worst was bone and muscle pain in my back, also got very tired towards the end - but the SEs never kicked in until day 4 - up till then i felt generally ok. The only time I got the fuzzy head was on tax one, after that my head was ok and it never occurred to me to stop driving. I felt better when I went out and since I was too kn*****ed to walk I would drive.
hi everyone, moser i have driven for the last two days 13&14 days on 4th of 6 tax, i felt a bit shaky, but i think that was just nerves, i gave up driving november following mx, i wouldnt get in my car and drive it days 2-10after tax possibly longer as during that period from past experience i have at least 3-4 days where i am not much good for anything only staying in bed!!! I must admit i do feel better for getting out of the house, i felt i was losing touch with everything including my own sanity, like yourself i am not much good at walking distances, my legs feel like big heavy lead weights have been attached to them, but different scenery has got to be a good thing at least. I have only done short journeys 5-10 minutes or so, but touch wood i have been o.k. but i must admit with this little old tax man i take him one day at a time!!! always waiting to see how i feel the next day and never taking it for granted lol liz xxx
hi l, i have taken your very sensible comments on board, i agree with you when you say i should go by how i am feeling with ses, there are days where i carnt even get dressed and go downstairs, let alone go out of the house, even if someone was driving me, i hope you are not feeling too bad at the moment, i personally have never experienced anything quite like tax before and hope never to again, between losing my marbles to the steroids, losing my arms, legs, and just about everything else, the list is far tooooooooooooooo long to mention!!! to tax, and looking forward to rads and more surgery, its a daunting few months ahead, never mind we will all get to the winning post and put all of this behind us, all the very best to you liz xxxxx
Thanks all for your advice and comments. At least now I have warned those around me of what might happen. My sister in Law says if looking after the kids becomes impossible we can go and stay with them, then she can help get the kids up in the mornings and to school etc. But I am hoping that I can manage on my own!! Feeling a bit more positive today, but this is my good time on FEC now. Just realised my 2nd TAX is royal wedding day! Great.
Sending out strength and positive vibes to all my fellow combatants in our battle… it won’t be long now and we’ll be back to normal and ready for anything!!
Lizzy xxxx
Lizzy, how’s it going?
I start Docetaxel tomorrow and Herceptin next week. Also had a heart venticular test this week, so feeling like a pin cushion at the moment.
Hope my veins hold out!
Hi jojobro, how did your treatment go? I have just got out of hospital after three days in with a blood infection!! But that could have happened during FEC too. I was great for the first 3 days after TAX, then a bit tired for a couple of days, then I caught a cold and ended up in hospital day 10 after. I am recovering at home now, but still able to function pretty normally. No nausea or sickness at all. No problems with breathing or anything either. Bad mouth ulcers was the worst se really. I am on another thread with a bunch of lovely women who have all just about finished FEC and starting TAX, it prob would be a go idea to go there I will look for link for you.
Good luck, Lizzy xxxx