Hi Wiffle......my heart goes out to you. The pain of first TAX can be horrendous......however it should improve for the final two rounds. You are right that you should adhere to the maximum dosage of paracetamol and ibuprofen over 24 hours. You could exchange paracetamol for co-codamol, or ask your medical team for something stronger, i.e. tramadol......however that might 'space' you out and with two boys to care for that might not be too helpful for you. Is there anyone who can help with your boys?
I know it's really hard, and if you can try and stick with the treatment. If you talk to your Onc before next infusion, they might be able to suggest something to help i.e. perhaps a return to FEC, weekly TAXOL, reduced dose, more saline flushing between each TAX infusion or different approach with steroids?
We are more resilient than we think, and hopefully the impact of side effects will lessen. For many the pain and some side effects do subside, however the tiredness can be cumulative. It is so difficult to offer any advice on how to deal with the side effects other than pankillers (try taking them starting day before TAX next time), warm 'radox' baths, heat wrap (microwave), hot water bottle, mouthwash, lots of pineapple in all guises, jellies, ice cream, crumbly mints, flavoured drinks, manuka honey tea etc. etc. If you can, try and keep a diary for medication, side effects etc. and include how you're feeling.....plan little treats.
I wish I could wrap a cloak around you to take away the pain (over 3 years on I can still recall it)......hang in there.......hope you feel more positive over the next few days, and that future treatment is kinder to you 🙂
You take care x
I had fourth dose of chemo on Tuesday, this time Docataxel and just want to give up. I feel so incredibly low and keep waking up with no feeling in my fingers. My throat feels like it has been burnt, rang the help line and they said to keep taking paracetomol and ibprofen but worried about the dosage as when i look online it says i can only take up to 4000 mg a day and if i take it at every 4 hours surely this won't work out. My brain is fuddled and have the joint pains , i really want to throw it in. I had a lumpdectomy for TNBC and this is meant to be mopping up any rogue cells but Im beginning to wonder if this much pain is worth it. I have 2 boys to look after and am pretty useless due to above and no energy. Any advice on how to stop at least some of the side effects would be great, x
Oh Curlykaren......that's not good :(. TAX is rubbish indeed (even if it is very effective) on your body. I do feel for you.....virtual hug 🙂 Worth mentioning when you have final TAX as they may be able to reduce dosage slightly, or what worked for me for last dose as I was pretty spaced by then(!) was to have a saline flush between each 'bag' of TAX (had an electronic IV pump) which lessened the impact and after effects.
Really hope things improve for you soon x
Piglet.......numbness in fingers and toes (peripheral neuropathy) is a side effect of TAX. Mostly it should be temporary; however it can be more long-term. I finished FEC-T over 3 years ago and still have a little numbness in some toes and a few finger tips......much improved, albeit alowly, over time. Worth mentioning to your Onc to see whay they say. Take care J x
had a very bad day yesterday. All the usual aches and pains plus migraine and sickness. Also have an itchy rash under my arm. Struggling to sleep to be honest. This T regime is a lot harder than the FEC x
This is my first post since being diagnosed with Breast Cancer in May - currently having chemo (Fec-T) and Herceptin ... Now 7 days in from last Tax and have also had the injections to boost white blood cells .... Has anyone else experienced loss of feeling in arms, hands and feet and nerve endings in hands? I'm told this can be a side affect but would like to hear if anyone else has experienced this .... x
Hiya......quick check in! Just wondered how you're doing? Pain eased at all? Better sleep? Take care x
Thank you. Will defo give a go tonight to see if I can get some sleep X
Hiya.....just a quickie....2nd day back after half-term and exhausted!!!! One week off in a 15 week term is not enough 😞
You can take co-codamol instead of paracetamol and alongside ibuprofen.....they spaced me out too, which was probably a good thing hehehe.
Best wishes to all......x
I was given cocodomal to take home after the docetaxel - they helped although I had problems with them - sending my head all over the place but if you can take then well worth a try
Hi the sore back and throbbing feet I'm finding the hardest at the moment. Hope it improves. Best of luck with rads x
Hiya......that's really great news from your surgeon. Glad someone in your team is brilliant and that she is trying to arrange a second oncology opinion.....hopefully you will get some clarity which will put your mind at rest.
Hang on in there....you really do start to feel much better around 3 weeks after last chemo as your body starts to recover 🙂
Not a teacher......Community Manager, so I develop all the community links, and bids for funding etc. Thankfully as I don't have much day to day contact with the young people, my Onc allowed me to work through chemo, although I did get VERY slow 😞 Upside was that staff looked after me buying me treats when they went to the shop and the MacDonalds ice creams were a great relief for my sore mouth :). There is something so special working in school, so I bet you can't wait to get back....please make sure you're really well enough though.....!!
Hope the rest of the week is kind to you.....x
thanks for the information. At least it gives me an idea of what's ahead. I went to see my surgeon today (who is brilliant) to see about left breast possible signs of cancer. She gave me the all clear so very pleased. While I was there I spoke to her about the mess of the oncology unit which she wasn't surprised to hear. She has very kindly offered to try and get me a second oncology opinion and will talk to them directly tomorrow. Should hear in a few days.
Yes only one more cycle to go - can't wait. Back is very sore and not able to sleep much but hoping that will improve.
You say back to school tomorrow. Are you a teacher? I am a HLTA doing SENCo role and PPA cover. I miss it so much. Can't wait to get back.
Take care x
Hiya.....how are you doing? Tis a long journey indeed, but one we can deal with and then live with 🙂 My diagnosis was different to yours...had a WLE (lumpectomy) and no nodes affected. Radiotherapy (RT) for me was automatic!
Ouch to the foot cannula...they did threaten me with that as they said I didn't have good enough veins to cannulate (hence the PICC bullying), but the ward nurses, when I was admitted once, had no problem!
RT usually starts around 5-6 weeks after last chemo. You should have a planning session, where they stick you in a 'donut' and look at the area like a cucumber....well that's how it was explained to me!!! Hopefully that department may be more efficient, and you should have a radiologist oversee your treatment, rather than an oncologist....you can live in hope 🙂 They should explain to you what is being radiated.....area around scar, nodes etc, and the worst case scenario side effects, which can include rib, heart and lung damage! However, the beams are SO precise...marked by fetching little black tattoo dots....that they will do everything they can to minimise that risk. The actual procedure is quite quick....longest bits as usual the waiting, and the shifting you around to get you in the right position. I got royally cheesed off by looking at the cherry blossom on the ceiling, so I asked them to change it every few days (had 23 rads) as I'm sure I wasn't the only one! They also only had one CD playing naff music, so I treated the department to a few more relaxing discs once treatment had finished!
Main side effect for me (not for everyone) was very sore and peeling skin...let air get to it as much as possible and use whatever cream they recommend...usually aqueous cream, which you can also use in shower. They should review you throughout and can prescribe special gels or pads that will help if your skin is sore. Some people say they get very tired...I didn't but maybe because hospital is very close, and my daughter got married in the middle of RT so she didn't give me time to be tired hehe.
After effects were areas of very thickened skin (softening now), some very thin skin and quite a bit of tissue damage, which is sometimes uncomfortable. My lovely surgeon said this could flare up for around 7 years...deep joy!!!
Hope some of this helps to reassure.....just re-read one of your original posts, and see that you only have one TAX to go.....yay 🙂
Hope you have a better week.....back to school for me tomorrow - one week off in a term of 15 weeks is not good.
Look after yourself x
Glad you're out of the woods. The journey us a long one isn't it. I feel like I've been run over by a bus today. Not going to let it get me down though. I ended up with a Groshong line as veins packed up and picc didn't work either. I wished they had warned me about my veins as they are now unable to cannulate me. When I was going through heart investigations I needed a CT scan but they were unable to do it just because they couldn't cannulate me. Had a different chest scan in the end which they cannulated my foot (very very painful). Any advice on radiotherapy. Oncologist said " you have it" no explanations etc ( like I said poor English). Worried he will not tell me everything I need to know. I had heard this can cause heart damage too x
Hiya.......the headaches/other localised aches and pains are a good sign after the injections as it means they are working - your bone marrow is producing the immune cells your body needs. I went from a 12 paracetamol a year gal to 300 over 12 weeks!!! From my own experience, the 2nd and 3rd doses were kinder pain wise, as I knew what to expect and could pre-empt....plus my body was getting used to it! Some of the other side effects also improved; however the tiredness and fuzzy headedness got worse 😞 I was one of those bonkers people who worked through chemo! Docetaxol apparently weakens the immune system more than FEC, so be careful about what you eat (pregnancy type diet), and getting cuts/grazes....drink loads and loads too to keep your kidneys flushed through and help to avoid water infections. May have said previously to keep your mouth scrupulously clean to prevent mouth ulcers and oral thrush. Try and keep away from people who have viruses...although my Onc said that you're more at risk of infection from yourself than others!
How irritating that your chemo unit are a bit rubbish.....mine were OK, although they did try to 'force' me to have things I didn't want like a picc line. Always come on here and ask, there will usually be someone who can help you out.....the helpline are also fab.
I am pretty good, thanks 🙂 still very thin hair, few eyebrows, general aches and pains from Anastrozole, and some scar tissue/rib damage from radiotherapy but generally life is good. I very much live in the here and now and enjoy every day.....As my name says 'same old me'!!!!!
You take care.....hope you feel more like you for the rest of the weekend.....onwards and upwards. You will get through this 🙂 x
Thank you so much for your reply. I have had bad headaches today due to injections which had on last two cycles. By the end of today my back is quite sore so have been dosed up on painkillers all day. It's good to hear your advice of how long to continue this though as wasn't sure. Unfortunately the oncology unit in my hospital is in a complete mess. The main man left just as I started chemo and since then have seen four different oncologists which have poor English. Don't get any useful advice from them and very little questions answered. Because of heart issues and hospital stays I end up having to go through everything every time I see someone. As you can imagine I have very little confidence in them. Do you think based on your experience the second one should be better? Again thanks for advice. Hope you are well yourself x
Hi curlykaren....my Onc (over 3 years ago) advised to take max doses of paracetamol and ibuprofen over the day from day 2 post TAX until around day 5 or 6 to help mitigate the pain, which can feel like you've done 10 rounds with a champion boxer!!!! This apparently turns off the pain receptors in your brain. Pain from TAX is usually worse after first infusion, as your body has learned to 'tolerate' FEC, and then gets assaulted by another powerful drug....which has shown to be very effective. Remember to take your temperature pre-paracetamol to ensure it's not raised, which can indicate an infection. I found it helpful to keep a TAX diary so I knew what to expect!
Some of the more common side effects include sore/swollen hands/feet, nose bleeds, diarrhoea, oral thrush and almost complete loss of taste. You may suffer from all, some or none of these....no-one can predict. Take good care of your hands and nails, which can be particularly affected....keep your nails short and hands well moisturised.
Hope the treatment is kind to you......two to go 🙂 Take care x
thanks for sharing. Had dose yesterday and so far not too bad apart from feeling very tired. Hoping it doesn't get too bad I sure it will get worse. Hope ou are well x
Thank you for sharing. I start tomorrow now. Really nervous as lots went wrong on previous cycle so makes you think what can go wrong x
Hi Curlykaren, I had an awful time with pain on my first T and like many others, was given a few extra days of steroids on a reduced dose for T2 which made a huge difference. Lots of other people find the T more tolerable.
I hope you get the answers you need, xx
thanks for sharing your experience. I am going for the pre chemo talk on new drug tomorrow. I will ask about weekly doses. Not holding out much hope tough as supposed to have it on Friday X
Hi I have done 4 cycles of FEC and have been changed to Docetaxel for last two due to heart damage. Can anyone share their side effect experiences of Docetaxel please x