You're right - this has changed us all. We will be dealing with this long after some people are no longer asking.
Conserving your energy now and thinking about what is going to help you in the future will help to restore some control.
Lots of love
Oh rizzer, you just put it all so beautifully 🤗 I've been so surprised at who has been the most helpful and empathic and how I can be strong in rebuffing when needs be.
The whole experience, from diagnosis through to treatment, is emotionally and physically exhausting, and the fear is incredibly debilitating. People don't understand how it saps your energy motivation and ability to do anything other than what keeps us going.
The electric nerve pain sounds awful. (I was going to say it sounds shocking, then realised how that might sound!!)
Here's hoping you sleep well tonight my lovely.
It was reduced to 80% for the first T because I'd been in hospital after the first and third FEC infusions and the oncologist wanted to prevent it happening again.
It didn't prevent a third admission though, hence the second T was reduced further to 60%.
The oncologist said that if I ended up in hospital again after the second T, they might not do the final one as they have to weigh up the benefits of giving chemo against the effects and risks such as neutropenia and sepsis.
I've stayed at home this time with no problems so I expect they'll do the third T on 23 March at 60%.
Right at the start I was told doses sometimes have to be reduced and that it's better than not having it at all. I just worry it won't be as effective at reduced levels (although the FEC ones were full).
I did still get a sore mouth, but I started the anti-fungal tablet as soon as my tongue went white. The oncologist prescribed it and said to start it if I felt I might have thrush again. I'm sure that helped as it wasn't as sore as last time.
For me it’s a combination of limited physical energy with a big shift in our capacity to think and feel. Mental and emotional energy is easily used up when trying to engage with friends and family. I am not the same now inside and out. I chose not to listen to stuff such as repetition and meaningless drivel 😀
I find myself saying to my adult son. “ I can’t listen to this right now “ he’s fine with this. It gives him a boundary and me more space.
People wanting reassurance from me that I’m ok and will survive are not people I want to be around. This cancer has altered my life and me. I will forge a pathway of what I enjoy for myself when treatments are over.
Big hugs 🙏🏽💕🌲💕🙏🏽🌲🍀
I totally agree with what you are saying about prioritising time and energy.
Glad you had a better night- amazing how much better we are at coping with things after a decent sleep x
Hey adelemck, we’re here love, we get it. Same goes for you mc22 ❤️ Sending you big hugs. I imagine others feel similarly.
I think I’ve learned a lot since this whole business started about the things that make me feel good and things that don’t. I like being in the garden, walking, spending time at our home with family and friends. Things that don’t work for me include, accepting every invitation to do stuff however tired I am, so that other people (however well intentioned and kind) feel like they’re ‘being there’.
Driving miles to places, complicated arrangements, waiting for someone who’s late, going to other people's houses with loads of other people, getting talked over by energetic people, or spending time with anyone who doesn't get that you’re not up to listening for looooong periods of time....Just no.
We all have such reduced capacity at the moment while doing chemo, we’ve every right to pick and choose how we want to use up the energy we have. Rather than finding you’re expending it pleasing others and there’s nothing left in the tank for you!
Under normal circumstances that would be fine - crap night out feeling low, tired halfway thru, but after an early night and a bath/fry up and you’re back to feeling ok - but these are not normal circumstances.
After I got my diagnosis I spent a load of time terrified and on my own, thinking thinking, unable to connect with my family. I worked hard to reconnect because I realised it wasn't helping me feel any better all that time alone. That stage was horrible, no question, but I had the energy to make that decision. I’m just wondering if your friend who didn’t do chemo, doesn’t fully understand just how physically tiring this is. I can only speak from my own experience, but for me it isn’t a question of pushing people away, it’s about what energy you have to give away to activities that you might get nothing from, and where you want to focus the limited energy you do have.
After work and other commitments around treatment etc that are unavoidable, we totally deserve to choose what we do with the rest of our time!
Hey madcatlady, thanks for asking about last night ❤️ Early on was a shocker as has electric nerve pain all over, but had some oramorph and managed to sleep. Better today, and manageable. Spirits lifted by prospect of it improving next cycle, or a least knowing what to expect. Oh and isn’t it a shocker how other people are full of advice about what and how much we should be eating! Everyone’s an expert eh 😉 Xx
Adelemck ❤️ It can be hard on friends who do actually stick around after you get your diagnosis because they want to be there for you and it’s hard because you don’t want to necessarily talk about things with them because they might not understand they way everyone on here does. Perhaps let her know you appreciate her thinking of you and you know she’s there for you. But she needs to allow you to do things your way and that when you’ve finished treatments you can go and have a nice day out somewhere 😁 it’s hard because you get the beam me up Scottie brigade that vanish till you are through your treatments with the odd text once a month like you’ve been put in their phone as a reminder or you’ve got the 😇❤️ Who want to do all they can for you. What you have to do is please yourself and those that are still around at the end of it all are still there and those that are not we’re never true friends anyway and no loss. ❤️❤️Hope this helps 💕💕✨✨Shi xx
Hi Lady34 and rizzer
My second T, like Elsiedog's, was better in terms of side effects. I thought it was because of the reduction in the dose. I am conscious that having (so far) avoided an admission this time could mean a slightly rose-tinted view of no.2 🙂
I still had aches, but no worse this last time than those from the injections, whereas the first time with T it did feel like double the pain level. So fingers crossed that you both find it more bearable next time.
I'm due to see the oncologist on Friday and am wearing a mask. At my last appointment the waiting room was heaving, with people sat on chairs up and down the corridor, and a two and a half hour wait. I'm not happy at the thought of sitting in such close proximity with that many people for that long again.
I do wonder if the appointment will go ahead or if it could be a telephone consultation and a blood test at the local cottage hospital or surgery, as I've seen both of these mooted as possible alternatives (and only allowing the patient to attend appointments and treatment, to minimise the numbers in the clinics).
It sounds like we're all hunkering down at the moment, but we've got to put our health and wellbeing first...not something we women find easy to do, but we shouldn't feel guilty about it or feel we need to justify it.
Mc22, you are not a wimp, but perfectly right to say how frightening this is. Chemo has rendered us all gibbering wrecks at some point and no doubt will again before it's over. I've come to the conclusion that not feeling wimpish along the way would be weirder.
And Adelemck, whether your friend was trying to be helpful or not, it has clearly upset you, but if you need to bring up the drawbridge, you get pulling on the ropes! It reminded me a bit of being told you need to lose weight 'for your own good' by a concerned friend. Walk in my steps first...
Lots of love
Adelemck you’re doing your friends a big favour if you are pushing them away. Would they like to be responsible for passing the virus to you ? As they may not have symptoms! Vent if needed we live in bizarre times 😀
sorry to hear there’s pain around. I had 3 days of the same on my first T dreading it again but given cocodomol will rely on it if needs be.
Got 2nd T on Tuesday feeling frightened to go to the hospital. Going to wear a mask. None of the staff and very few people had on masks there last Friday. I was shocked at this.
Im also in my room self isolating. Can’t cope with anything more at the moment and don’t want too!
Hugs to all
Don't feel bad about venting Adelemck. In fact, to hear someone have a moan makes me feel better because I know then that I am not the only one. I, too, have been feeling very low as had a few issues which have been quite challenging. I miss my normal self and my normal life, as we all do.
We're allowed to let off steam now and again! At least people on here understand.
As for your friend's comment, perhaps she didn't mean it to come out as it did and might now be regretting it. When you are feeling emotional it is easy to take things people say the wrong way.
I am not interested in socialising while on chemo either. Hopefully I'll make up for it when I finally get to the end of this journey.
Hope you are feeling better very soon.
@Adelemck - I’m sorry but in theses uncertain times nobody has the right to tell you what to do - do what you are comfortable with and if they are a true friend they will understand - makes me so angry 😡
Personally I am more or less self isolating apart from hospital appointments (and have to get the car MOT’d!).
Be safe everyone x
Not a wimp at all Mc22! Think we must all be feeling vulnerable right now! I have aches and pains in legs, feet knees etc. Today just desperate to avoid another admission so staying in my room but feeling low ☹️ had a message from a so called friend last night who said I was pushing friends away - funny I just don't feel up to partying right now! (She's had BC but not chemo ) Sorry to vent! Counting down the days 😊
Thanks for your replies. No never tried co- codomal but might give it a go. In my 'normal' life I never take any drugs apart from the occasional paracetamol. Been having trouble sleeping anyway due to anxiety (like most of us I expect.) Just another symptom of this horrible treatment. I've had a few issues with phlebitis so had a picc line fitted last week which I got quite stressed about, too. I am just a bit of a wimp!
Hey Mc22, well I did last night, but I’m hopeful with the cocodamol’s help, tonight might be better. Sorry to hear it’s keeping you awake. Have you tried the codeine/co-codamol yourself? X
Sometimes they do affect my sleep ie when I wake I sometimes struggle to get back to sleep because of them.
Yes I'm on day 3. My oncologist said the next best thing after the cocodamol was oromorph so definitely worth a go. I also have a stash left over from surgery but havent tried it yet. Fingers crossed that your pains pass in the next few days. They are horrible x
Cheers Elsiedog, ok so it might hang on a bit longer than I’m hoping...
I’ve had no steroids so think co-codamol or codeine is definitely the way to go.
I’m hopeful my second dose is similar to yours in terms of less intense SEs - so thank you for sharing that. Glad to hear you’ve managed well with the odd codeine. Long may it continue! Xx
Thanks MrsS 🙏. I’ll definitely try the co-codamol then and might resort to the oramorph left over from the ops 🤪. Not at the same time 😉. Mine started evening of day 2 and has been building up since. Hopefully then I’ll be over the worst by Tuesday Wednesday next week and be cooking on gas again towards the end of next week! How are you doing at the moment then? You’re on day 3 like me I guess? X
My joint aches and pains with the first Taxol started about day 4 and lasted about 4-5 days. Extra steroids and codeine prescribed by oncologist to help counteract this time. She did say that for many people often the side effects from the first dose is worse than subsequent and that’s been my experience with second dose. Have managed well with just the odd codeine. Hope the pains go soon.
Poor you! My chemo nurse recommended cocodamol as paracetamol didn't cut it with me either. I bought it over the counter but be careful as it does contain paracetamol, so don't take paracetamol too (and check temperature before taking it). I find the aches are worst on days 4 to 6 (day 1 chemo day). If the cocodamol doesn't work ask your team for something else. It's horrible. Also try hot bath, hot water bottle etc x
Okay, so paciltaxel is a sneaky blighter right?!
Deep aches and flashing nerve pain ALL the time?! I noticed co-codamol got a mention by the taxol veterans? Paracetamol not really touching it so far.... I know it’s hard to gauge as my dosage on a 2 weekly cycle will be different to those on the weekly and the 3 weekly cycle, but when do people find this goes away for them (assuming it does 🤞) if they’ve had these SEs?
Love to all Xx
Good weekend ahead hopefully. Thanks rizzer yes I was gutted. Wished I’d not said so much as I knew it was that I mainly only can eat fruit so it was a factor. Anyway this may have been a blessing and waiting has saved some awful side effect.
Will treat myself to a longer hair wig.😀
Hugs to all 💕🌲💕🙏🏽💕🌲
Can I just ask if anyone knows how @fluffball is doing? I’m not on Facebook or anything so don’t know if she’s just chatting in there now X
Oh what a shame... Yeah a bit of pampering and camaraderie would have been nice, madcatlady ❤️.
I’ve heard they’re brilliant. Not been or booked on tho’. Im with you on the eyebrow front.... very envious of debelina’s superb ones on her last pic X
Meant to ask, has anyone else got a Look Good, Feel Better session booked? Mine was for Tuesday, but the Macmillan information centre rang this morning to say that the organisation is cancelling them for the time being owing to coronavirus.
I had half-expected it to be honest as the session is not an essential medical appointment and therefore can be rearranged, but I was looking forward to a bit of pampering and most importantly, being with other people who look like me and can relate to feeling deeply envious of those with eyelashes and brows!!
It's weird about the tingling. It doesn't seem to last long, but I've heard of people being unable to walk or hold things, which is grim. Yes, it does feel a bit like your shoes are too small or there's something in the way!
Well done for getting out there and digging...I keep saying I will, but much as I love being in the garden, the wind is pretty fierce...and not to the cat's liking at all. (I always garden better under her supervision!)
I'd say you deserved every buttery crumb...mmm...just off to the kitchen now 😁
Hi madcatlady, the sore fingers and toes sounds like a classic side effect of taxotere. I haven’t experienced it yet as early days for me, but I’ve certainly heard a lot of people suffer with it. Sounds horrid, I’m glad it eventually wears off for you towards end of cycle so you can get a period of relief.
The oncologist said to me that lots of patients complain of a feeling like they’re walking with a sock rolled up in their shoe (obviously when they don’t actually have a sock rolled up in their shoe!) or like their shoe is stuffed with cotton wool?! Totally bizarre... Xx
That's tough about the delay, especially as the diarrhoea had happened before. It will soon go by though; keep resting and drinking lots, and doing what you can as it is the best point to be energy-wise. Also they still went ahead with the other treatments, so the routine there is unchanged.
Any delay/change will feel like a setback, but the important thing is being as well as possible to cope with what the T is doing to us!
I am not sure how they work out frequency of treatment. I was offered paclitaxel 3 weekly or at a lower dose weekly with fewer side effects. I am definitely getting steroid munchies!
Peripheral neuropathy is common with paclitaxel and starts with tingling in fingertips/ toes. My oncologist said to let them know all the symptoms and if it gets to the point where it interferes with doing buttons, fine tasks etc they may give me a rest week. He said it increases exponentially so it can be low level for a while but suddenly increase in intensity/ severity. So keep an eye on it and keep the team informed.
Well done on the gardening! Good for the head as well as the body and enjoy your treats.
Oh Elsiedog, the not sleeping bit is horrible 😞
Hopefully once you stop the steroids it will improve.
I've had sore fingers and felt like I'd stubbed my toes, but that's worn off each time I've had T. Has this happened to anyone else?
Good luck Aurore, hope all goes to plan X
hey Mrs S, so it seems based on a sample of 2 others (you and Aurore) that I am the only one without steroids and doing this on a 2 weekly cycle...🤔
Anyway, feeling ok, just exhausted. Doing a bit of digging in the garden helped, altho’ it took a lot for me to haul my arse out there! Ate like a horse afterwards and I can’t even blame the steroids, altho’ I did fast again so I feel ok about loading up on buttery pittas with marmite and raisiny pancakes😋.
Everything seems to be tingling on paclitaxel? Is that usual? xx
Hey lady34, I imagine psychologically it feels like a blow to have your treatment delayed. I reckon I’d be in bits about it. Sounds like in terms of your treatment efficacy it won’t make any difference, so fill your boots with the cleaning and tidying, but do take some time to rest up and recover. Treat yourself lady Xx
Thank you so much Mrs feel more reassured knowing this. Yes in the scheme of things 5 days delay isn’t much. Will focus on drinking more. Doing 5 days of clearing tidying here. Haven’t been doing much of it lately.
Hugs to you all
Big hugs Lady34. They don't take these decisions lightly. You wouldn't want to go into kidney failure because of dehydration. From chatting with my oncologist yesterday, missing one treatment doesn't have a huge impact. He said that people often miss one for reasons like yours or because they go on holiday (! hard to imagine enjoying a holiday mid chemo) or because a bank holiday messes the schedule up.
Hang in tight, keep well hydrated and hope the diarrhoea settles.
Thinking of you and sending love and strength xxx
Was refused my T yesterday they gave me the First 2
Cytoxan (cyclophosphamide), Herceptin (trastuzumab), but because I’d had diarrhoea for the previous 3 days they wouldn’t go ahead with the Taxol (paclitaxel).
I did explain that this happened to me an the end of the 21 days of my treatment cycle so far. Also I take a light laxitive as advised by onco to avoid constipation which I had at the start.
But a the doctor saw me and decided to wait 5 days take no laxitives and if I’m diarrhoea free for 3 days I can have chemo. Reason given is Taxotere will cause 10 days diarrhoea which effects the kidneys and this would be enough any more is too much.
Didnt know now how to feel about this delay but better safe than not. I guess.
Hope all of you you are feeling ok today and resting up 😀💕😀
will be joining you on Tuesday 🙏🏽 Hopefully 🙏🏽🌲🙏🏽🌲🙏🏽
i am weekly Pacli too and have antihistamine and steroids before the infusion as well as something else to protect my stomach. I have also Carboplatin and I am in the unit for about 4 hours and I get very sleepy during treatment. I have also heartburn. MsS1968, we seem very similar. Oh I have steroids for 2 days afterwards.
i am getting ready for my number 3 today.
have a good day
I am on weekly paclitaxel. They give me IV antihistamines piriton which definitely makes me sleepy, if steroids dexamethasone, and I'm supposed to have iv ranitidine to protect the stomach but I'm allergic to that so I have an alternative tablet. I have suffered with heartburn more with paclitaxel so I take daily omeprazole.
How are you doing? X
Had my 1st of 4cycles of paclitaxel yesterday. God I was tired during and after! I think it must be the antihistamines. No steroids before during or after for me it seems. Anyone else not given any? Not that I’m complaining, just curious.
Slept when I got home, got up for 10 minutes then back to bed for the night. My infusion was 4 hours long. Anyone else on this version every 2 weeks?? X
Hi Madcatlady. So far, joint pains minimal. Just had one codeine to help me sleep last night. However, I only took my last dose of steroids yesterday so once they’ve worn off maybe it will be different. Just can’t sleep. Been awake since 2am. It’s a long night listening to the wind and rain outside .... slightly sore toes and my finger nails feel like they’ve been trapped in a car door! But no redness yet.
Mascatlady cocodamol worked better for me than paracetamol alone, but don't take both together because cocodamol contains paracetamol x
Love the name!
I was just told to take paracetamol and not ibuprofen for the joint pain (which it didn't help), so would be interested to hear if the codeine is better.
Fingers crossed about your hands and feet. It sounded grim 😞
Thanks for sending the coronavirus information, B4. I've been looking for something specific to us so I shall read through it.
I've already talked to our HR dept about when I return it will be with a compromised immune system for some months, and thankfully they were aware of this (and have members of their dept in the same position).
We've got to look out for ourselves and make sure we're protected.
Good luck for Friday.