same here. Are you receiving private care in London hospitals?
do you have lymph nodes involvement ?
Thank you I will message the nurse like you mention.
First time on here today.... at last received my treatment plan since having surgery in August.
I will be having weekly paclitaxel for 18 wks and herceptin every 3 weeks for a year followed by radiotherapy & hormone therapy.
I struggle with carpel tunnel (awaiting surgery since 2021) and rather concerned that the numbness/burning pain, pins & needles etc...unbearable at times and relieved for a couple of months between steroid injections could get much more painful with this chemo side effect 😬🥴
Hi. @angela1234 I was diagnosed on nhs and was told grade 2 stage 2 ER+ the others neg. I have med insurance through work and receiving treatment private. My onco sent a referral to my surgeon and copied me in. In this it states ER+ PR+ HER - I’m going to ask about this at my next appointment with them. I’m due mastectomy then radiation.
You might find it useful to ring the nurses’ helpline (number above) to ask that question. I believe, based on my own experience, that it’s a dose reduction that may control peripheral neuropathy rather than any medication. That’s why it’s important to report any evidence of PN. Most people experience just tingling in their fingers and toes, maybe a little numbness, and it generally wears off over time (don’t ask!).
To those who mention nausea and sickness, the best way is to assume you will get it and use the anti-nausea medication as prescribed, ie as a preventative, until you’ve settled into a routine and can use it ad hoc to deal with occasional nausea. You may not even need it by then.
Good luck with your treatments xx
My first time on the forum.
Regarding the side effects of Peripheral neuropathy did they give you any meds to take to ease this side effect and if so did it make a difference?
Sorry to hear that you have to postpone for a week due to covid. What’s your type of BC? I wonder if we have the same types so being offered the same drug regime. Mine is ER/PR positive, HER2 Negative
Hi yes I’m also on Neoadjuvant chemotherapy. I jumped the gun on stating week 11. Tues are my treatment day but tested positive for covid so pushed back a week as precaution. I’m doing okay tho no different to having cold so far x
u r right, I will have my 2nd EC this Thursday. EC is tougher. I didn’t have much side effects under Taxol, just a bit fatigue and I had red rashes in the back.
Nausea and fatigue are the worst part for me on EC. Nausea kicked in 3 hours after the infusions and I had to take the med. You will get better day by day, it’s manageable. The scary part is my hair, I hope I can keep my hair for longer. I did lose 30% of hair under Taxol with cold capping.
Are you on Neoadjuvant chemotherapy? Did you cold cap? feel free to pm me if you want more information.
it appears your about 4 weeks ahead of me on the same treatment plan (12 x weekly paclitax 4 x fortnightly EC) I’m currently on week 11. Can please ask how you have got on with the EC compared to the pac. I’ve been pretty good on the pac no side effects other than sleep pattern messed up and therefore tiredness. Bit worried/apprehensive that I have false sense of security so to speak and then wham hit by train EC. Like yourself I only seam to find posts where treatment other way round.
I had my 1st paclitaxel yesterday and I was not feeling well chest tightness and feeling sick. All I could remember is saying I’m feeling sick and nurses was rushing to give me something. I must have passed out coz I woke up someone calling my name, feeling the pain from needles and I’m covered with vomitus eew.
Has anyone had a allergic reaction and which chemo drug did you have to replace taxol.
Great tips. Thanks so much. I will consult my nurses immediately if any side effect kicks in. My EC is planned every 2 weeks. I am also a car sick person and morning sickness with my pregnancy.
Great to know you were able to work from home and socialise and have fun. I work from home on my taxol and go to work one day a week even I feel good. My boss doesn’t want me to come for the same reason, need to be careful of covid.
Best of luck to all of us here and be positive xxx
I did find EC more challenging than paclitaxel, though perfectly “do-able” as they say.
Main issue for me was sickness and nausea. I suffer from travel sickness and had bad morning sickness with all my pregnancies, which apparently puts you at greater risk when having EC. Anti-sickness meds are provided, but didn’t really work for me. However - when I told my medical team how ill I’d been after the first session they prescribed stronger anti-sickness meds (aprepitant) and that made a massive difference: I was never sick again, just had a bit of mild nausea sometimes.
I also suffered from indigestion, and struggled for a few weeks using only indigestion tablets from the supermarket. But when I eventually mentioned this to the team they prescribed Omeprazole and my indigestion was cured within hours. Big lesson: tell your medics about your side effects straight away, don’t suffer in silence, because they might have an easy solution! Another minor issue for me was taste (lots of food and drinks I previously liked tasted horrible while on EC).
I had EC every 3 weeks and generally felt a bit rough during the first week, ok (and definitely well enough to work from home) during week 2, and great during week 3. But even in the first week I could go on long walks every day. And being on EC didn’t stop me socialising or having fun, albeit being careful about Covid. I hope you do well on it, and best of luck with the rest of your treatment x
I would love to try Tai Chi but still getting things sorted in slow pace.
assume oncologist knows what the best for us, so the treatment plans are always different. I also think it is good for me mentally to start with the mild chemo first, but not sure whether it is the best. I am always skeptical 😀 I’m having surgery after, so I hope all of the c cells will be killed by chemo.
EC is considered one of th tougher treatments because of the combination of drugs. It may be an advantage having it after Paclitaxel. I think as an introduction to chemo it’s a bit tough on the system but you’ll have been toughened up already, The psychological blow was quite tough nd you’ll avoid that.
Hope the chemo continues to be kind to you. I do believe age is an important factor and I was way past the cardio workout stage. Tai chi was my limit and I couldn’t do that as I lost my balance!
Tak care x
I’ve had the 3rd round of Paxiltaxol last Thursday with very little side effects. After the first round, I felt tired every now and then but it’s getting better last week and even better this week. I managed to do cardio exercises/jogging 5 times a week. I’m not sure if it will get worse after a few cycles.
I will have 12 rounds of Paxiltaxol followed by 4 rounds of EC. @loobyloop @Jaybro It seems you both have the other way round? How do you feel after EC?
Thanks so much for this , I’ll check out that post
Ill keep a close eye out for the neuropathy
Hope you’re doing ok x
Im so hear you’ve had an overall quite positive experience, that gives me hope 😊
Well done on the spring cleaning , I feel like I need a stiff drink after this treatment is completed rather than go home to clean 😂
I hope you’re doing as well as possible
thanks so much for replying x
Thank you , I’m working hard to keep my head together , it’s so easy to spiral down a rabbit hole , just trying to get through it a week at a time
Thanks for your advice re the gargle and the salivation treatment , that makes absolute sense ! How strange about your lip too , bodies are strange 😂
I hope you’re doing ok , thanks so much again x
Generally I found they didn't get worse, although I did get hand/foot syndrome after my 10th session. I posted 'Paclitaxel - luckily mostly mild side effects for me' in May & another person being treated with also added her experience. I hope they don't get worse for you.
I had 4 x EC then 4 x fortnightly paclitaxel. It’s supposed to be slightly less easier to tolerate than weekly paclitaxel but I found it a walk in the park compared to EC.
Like you I was a bit achy around day 5 - it felt like I had a cold, or very mild flu. Other than that I was fine (so long as I was careful to eat senna tablets and lots of fibre and liquid to avoid constipation!). I expected the side effects to be cumulative but actually I found the symptoms were barely noticeable after my last two sessions. I came home from my final session and spring-cleaned the kitchen.
Hope your experience is similarly positive. Best wishes x
I love your matter-of-fact approach to this. I was like an inert zombie for most of the time! As regards side effects, I had a lot but I’ve always said I can walk past a pharmacy and get side effects! Everyone is different but I would say just be aware of the possibilities and be alert to any changes. Peripheral neuropathy is a significant side effect some women get and you need to report it. It may start with tingling in the toes and fingertips and may extend a little further. I also got it in my top lip, oddly. If it’s not monitored, the damage can be permanent (as I learnt to my cost - I kept playing it down) and having numb fingertips can be a bit of a problem!
As far as I remember, days 1-4 were my zombie days and then I began to function. Certainly I’d perked up just in time for the next treatment. Keep an eye on the throat in case it gets ulcerated - can you gargle? Paclitaxel can affect salivation, which may explain your irritated throat. There are saliva-activating sweets like DAp+ (by far the best) but your hospital may prescribe something antiseptic or Gel-clair to lubricate the throat. My throat was fine but my mouth was ulcerated.
Most important, monitor your temperature. If it reaches the magic figure of 38C, even if you feel fine (as I did initially) or think you know the cause, you must ring that emergency number. There are forces at work we don’t understand when it comes to cancer cells and reduced immunity and you really do not want to develop neutropoenia or worse.
Right, now I’ve alarmed you, my apologies. Hopefully you’ll escape these pitfalls. I take my hat off to anyone who can get through four ECs. You’re a tough one!! Best of luck with the rest of your treatment,
I hope you’re all doing as well as you possibly can be
I have had 4 EC and 2 weekly Paclitaxel ( I’m due 12)
With EC , the side effects came on quickly and fell into a pattern so I could roughly predict them
So far with Paclitaxel, I’ve had some achy joints , irritated throat and sore back on days 4-6 which are managed with paracetamol but otherwise generally ok . Should I expect more side effects as treatment goes on and if so roughly when did yours kick in , after how many treatments ?
hugs to all 😘