Hi Alex and Madhatter, glad that both your first T’s went ok. I also had my first one yesterday, but am getting weekly paclitaxel rather than three weekly docetaxel, so have 8 more to go! I seem to be feeling ok and have been up and about all day, collecting the kids from school and cooking them supper…definitely feeling way better than the first day after FEC. Hope it continues like this for all of us!
Only side effect so far is a slight flush to my cheeks (which is actually quite flattering : ))
Madhatter, you’re so lucky to have someone to do the injections for you. I have to inject myself daily with anticoagulant and last cycle I had ten gcsf (Filgrastim) injections instead of five. Seriously, two daily injections for ten days was just too much, I almost ran out of places to inject. I still feel like a pin cushion!
Is anyone else further along the line with weekly paclitaxel? Any insight into how it goes over the week? Can I expect any nasty SEs to kick in shortly? Fingers crossed they’ll be mild!
Hi Pookie. I’m on weekly Paclitaxol and had my 7th infusion on Tuesday. It is so much kinder than FEC or EC. I don’t have gcsf injections now. Are they still giving you them with weekly Paclitaxol? I always have a bright red face the following day - it’s the steroids they give you with the taxol. I tend to have a really down day 2 days later - a real steroid crash. Tiredness is the main thing for me and it seems to be cumulative as the weeks tick by. Some people have joint pain and of course the main thing to watch out for is neuropathy - tingly fingers, numbness in hands/feet. I’m sure you’ll find it far less harsher than FEC! Good luck x
Hi Bookworm, thanks for the quick reply. Glad it’s been doable for you so far although I can imagine the cumulative tiredness must be difficult to cope with. I’ll prepare for a rubbish day tomorrow or the next and am definitely on the alert for the neuropathy. It’s actually one of the things I’m dreading most as I love to play the piano and, more importantly, I’m a jeweller and need my fingers to make very fiddly wedding and engagement rings! Might have to find an alternative career : ((
Ooh, forgot to respond to your gcsf question. I’m not getting them anymore, thankfully. I did ask the onc about it but she said that the weekly dose doesn’t have nearly such an effect on the blood counts, so despite having germy children about, I probably wouldn’t need them. Fingers crossed I don’t come down with anything x
yup, one thing at a time. I think it’s the only way to get through it. Emotions really are a funny thing. I’ve been feeling a bit emotional too recently, but I think it’s hormonal as I’m still getting my periods. I though that would be one of the (few) benefits of chemotherapy, not having to worry about periods (for a while, at least) but they’re still going strong and I’m also still having to shave my legs…despite losing almost all of the hair on my head. Why can’t it be the other way around!!!
Pookie, thanks for your post. Sounds like the weekly Paclitaxol might be slightly less demanding than 3 weekly Tax, but does sound from Bookworm that it it is probabably accumulative. It is all so unknown how we will react. Sounds like we might be finishing chemo around the same time.
Glad you have been up and about with the kids. I’m sure it must be tough on them. Mine are in their early 20’s and I must say have been brilliant.
I ended up in bed a good part of the day today and back in bed now totally exhausted.
I will keep my fingers crossed for you that your jewellery business will not suffer and you hands stay as normal as possible. Sounds intriguing making wedding and engagement rings!
Bookworm and Pookie, yes emotions not easy to deal with. I was really over emotional the last few weeks. Cried over anything and everything lol. Feeling really sentimental and any wee thing started me off. Lol. Sort of settled down a bit now. Thank goodness ?
Morning everyone! Am about to set off for Paclitaxol 4 plus Herceptin and Pertuzumab. Pookie do ask about the cold mits and socks - I have these every time as I, like you, am petrified of any possible peripheral neuropathy. They process is a right palaver as you need to have them changed every 30 mins or so as they warm up and I feel like I am causing a lot of hassle for the staff. Am sure they don’t mind it but just getting anyone’s attention can be really difficult, even with the buzzer. Not sure what good they do as sometimes they are painfully cold and sometimes only moderately chilled - very busy unit so seems they don’t always get refrozen for long enough. Not painting a good picture am I!? Still at least I feel like I am trying - and it is entertaining to try reading a book with the mitts on!
Mad hatter, I’m feeling pretty rough, a bit flu-like. Like you my knee joints are sore, but also every other joint too! My feet are burning too. Didn’t get out of bed until 6pm tonight. Mouth sore too and everything tastes yuck. I haven’t been able to sleep, even when I’m taking sleeping tablets. Totally exhausted. I’m hoping I start to feel a bit better tomorrow. Only good thing is, no sickness or nausea, which totally wrecked me in FEC.
Hope the tablets clear your thrush up. I got Nystatin drops for my mouth this time and doesn’t seem to be quite as bad as last cycle.
Oh Blueash and Hazel, so sorry to hear that the neuropathy has been/is bad for you. I will keep my fingers crossed (as long as I can!) that it doesn’t get any worse/resolves for you. Can I ask you both at which point it started happenings? Was is immediate, or after a certain number of treatments?
Oncewild, I’ll definitely ask about the mitts…although I rejected the cold cap, I think the possibility of neuropathy scares me more than the hair loss. You’re on number 4 now, have you had any tingling or numbness yet? If not, then hopefully the mitts are working!
Alex and Madhatter, we are in a perfect position to compare side effects between docetaxel and paclitaxel (lucky us!). My side effects so far have been, one slightly icky day on Friday (day 3) and I’ve now got some mild joint pains (day 4 and 5). oh, and I can’t taste anything sour…so weird. I put lemon juice on my salad and could not even vaguely taste it and pickled beetroot just tastes sweet! But I have to say that everything has been pretty mild compared to FEC…thankfully, as I’ll be back in next Wed for number 2.
I hope both your side effects go away quickly, it is good at least to not have the nausea. Alex, it does sound like you’re having a rough time though. Thinking of you both and everyone else, Pookie xx
Thanks Blueash. That’s tough for you as I guess you’re only half way through? Does your onc have a plan of action if it gets too bad? There do seem to be loads of things they can do that we’re unaware of, so hopefully all will be well. I did come across this research into prevention of neuropathy with paclitaxel (should be equally relevant for docetaxel), it’s about ten years old, so possibly not relevant, but I’m going to show it to my onc next week anyway…
Rollercoaster it certainly is. A horrid one at that!
the Reasearch was interesting, thanks Pookie - would be good to find out about more recent research to see if there is anything more comprehensive. I guess the dosage we are receiving on a weekly rather than 3 weekly basis must have come from this evidence. Wonder if the addition of Vitamin E has been through a bigger trial (worth it anyway?) and what the evidence for mitts and socks is. So far my feet and hands are ok but I have five doses to go.
Moan alert!! My week is not going well because
my Elastoplast allergy has extended to all the dressings tried on my Hickman site. I now have square angry itchy red welts on my chest and am having to go dressing free. So having to be extra careful as have no sterile covering on the entry site and stitch.
I have a cold. No nose hair is extra bad when you have a cold. Hoping my body has enough oomph to fight it off.
I saw one of the Onc team docs on Weds and
- braved up to asking her about my prediction score, which I have avoided asking so far. I really didn’t like what I found out.
- she gave me a resource pack to take away, which I assumed was a Moving Forward pack. I have just opened it and found it is not. It is a Secondary Breast Cancer pack. I am so upset. I want to assume she just picked up the wrong one but what if she didn’t? How can I find out? The hospital I go to is so big and impersonal (I have never seen the same person twice, ever). I will phone the Onc secretaries and ask but not sure what this will do. Will also remind them that I have asked for a copy if all letters. Will also make contact with BCN at surgical site.
my eyesight has suddenly gone and I have had to start wearing my sewing glasses for all reading, including typing this. Might seem like a small thing but this had upset me too. Feels like another step to old age. Does chemo affect your eyesight too?
I am so tired and fed up and bored of the endless round of treatment/sickness/appointments/worry. I hate the impact it is having on me and the family. It feels interminable and the future so uncertain.
sorry for being so pathetic. Hope to get my mojo back soon. X
Love the nose drip catcher Belle! Definitely need one of them! Am on oral antihistamine but not tried any creams so will look into that. Was prescribed a spray on barrier to prevent clothes rubbing but when I read that this was basically adhesive I decided against using it. Scared to try anything that might aggravate it further. Funnily the dressings I had after my MX only caused a tiny bit of irritation and they were very near these latest - maybe my skin is more sensitive after chemo? Idea of having tests before any further surgery is a really good one - IF I ever choose to go under the knife again!
Sue personally I don’t think it is appropriate for anyone with primary breast cancer to be given a big resource pack about secondary BC without any discussion at all. Yes it is a bridge too many folk have to cross but there is a time and a place for learning about it - and for me it is certainly not now! I am assuming I was given the wrong pack as a mistake but will ask BCN to be sure.
Madhatter and Alex, I hope you are coming through your first weekend after Taxol and feeling a bit better. I’m a week ahead of you, and didn’t want to say anything before you had yours, but I really suffered with my first T, although interestingly, with slightly different symptoms. I didn’t have the joint pain so much as general body aches such as you might get with bad 'flu. I also got appalling hearburn and worried that it might be a heart attack. Then I had shooting pains, like nerve pains, in the kidney area. It was only really bad for the three days after the steroids wore off, but that was bad enough!
Since then, it’s just been the usual stuff - very sore mouth days 5-10, sore runny eyes, runny nose (I had a cold too, which lasted all of cycle 3), tender toenails, general tiredness.
Oncewild, it sounds as though you are having a rough time. I hope you manage to fight off the cold, and find a solution to the dressings alergies. As if the chemo itself isn’t enough to cope with!
I hope you are all getting lots of hugs to keep you going.
Suze65, good to hear how you’ve been, but not good that you’ve been unwell. It is good to get the first one over with, to have an idea what your dealing with. Today, day 8, is the first day Ive actually been out of bed all day, yeah! Had decent sleep last night and woke up with joint pain practically gone. If only I could say the same for my mouth. It’s still sore and tender and finding it so hard to eat something that tastes nice. Any ideas anyone?
Had booked into a Look Good Feeling Better Course. Was totally convinced yesterday that I would be unable to go, but as I woke up feeling much better, decided to give it a shot. Really enjoyed it, and decent goody bag, some stuff I’ll use and others I’ll re-home lol. I was a bit surprised they didn’t talk about paraben free cosmetics, which I would have liked, as would like to know more around what is and isn’t suitable. Came home totally exhausted and never moved of the settee the entire night. However, so good to know that the worst is hopefully behind me for this session.
Hope everyone else is doing ok x
Thanks everyone for your kind words and tips. Pleased to say that my poor skin is slowly recovering and my cold receding - so impressed that my chemo battered body can still heal itself! Feeling more tired than before but am very pleased to report that I have rediscovered the art of sleeping in so am giving my teenagers competition!
I spoke to the BCN today and she was shocked and assured me that I was given the wrong pack in clinic last week - I should have been Moving Forward not Secondary BC. She said she would tell the Dr and remind all registrars to ensure they give the right packs. We also had a good chat about my Herceptin jabs which, if all goes to plan, I should be able to have at home at the end of the day on a Friday, thereby not affecting work.
Alex, with regard to sore mouth, I bought some mouthwash called Benzydamine, which helped and soothed. I haven’t tried Difflam, as my chemist didn’t have any. Both are quite expensive but I couldn’t be bothered to go to the doctor and get a prescription. The pharmacist also recommended sucking fresh pineapple.
I second what Suze says about the pinapple. I’ve been freezing fresh pinapple fingers and eating them like ice lollies. Not only do they taste delicious (even when everything else doesn’t!) but I’ve had no mouth problems at all…no idea if that’s because of the pinapple or not, but even if not, it still tastes good!
Pookie and Suze, that’s me heading out tomorrow for pineapple then! I’ll try anything. I tried melon, but it didn’t refresh my mouth at all. My mouth is still tender and so dry, but certainly not as sore as it was. It’s now rubbish though that practically everything tastes awful. So hard to get anything that tastes nice. My son took me to McDonalds to try a strawberry milkshake, but had about a quarter of it, as tasted weird. I’m hoping this goes away soon and I get a break before next chemo.
I’m hoping I’m over the worse of this cycle now.
How’s everyone else doing?