Starting chemo October 14

[riversidedawn]

Karen, how was hair loss on paclitaxel or had yours gone by then? Onc said I shouldn't need to keep cold capping but I don't want to risk it!

[Karen2609]

Glad I could help reassure you both a bit. I forgot to mention that when I was changed to paclitaxel I didn't need the GCSF injections anymore and only had to have a full blood test every 3 weeks. Hope all goes well for you, I tend to look at all the threads most days so will keep an eye on your progress. You'll be through it sooner than you know it!
Oh just remembered you don't have to take half as many steroids with it either, another bonus. Good luck ladies x

[riversidedawn]

Thanks Karen, I feel better to as having 12 x paclitaxel starting January and was concered reading this thread. Onc said SEs aren't as bad as FEC but I didn't believe him!

[Debtex]

Hi Karen . Thank you so much for your reply . I'm much more re-assured now and feel much more hopeful and positive as a result of what you have said . I hope you are feeling well post treatment . Thanks again Deb x

[Karen2609]

Hi Debtex
Just popping in from the July thread, I too was put on 6 weekly Paclitaxel after a reaction to docetaxol put me in hospital for a week. I totally understand your disappoint as I was so disheartened having to go from 2 sessions left to 6 but it was definitely the right decision. I found the weekly paclitaxel so much easier to deal with, the side effects were much gentler, only real gripes were aching legs and disgusting taste but I managed to get out and about every day. I was concerned about not having a good week but the flip was that I didn't have any bad weeks either.
Yes, the treatment dragged on for longer and I felt quite resentful on the day my last chemo was originally due but those few extra weeks went by quickly. My onc is a very big fan of weekly paclitaxel and gives it to all his private patients but is only allowed to give it on NHS to those of us who have a reaction to Docetaxol.
I hope this helps

[AMDriver]

chin up Zelda, I am on the same as you T1 Day 7 and just in the last couple of hours I have started to feel better - mouth less furry, some energy returning, actually interested in what's going on around me....

I doubt I will be back at full energy levels tomorrow but I have defnitely turned a corner.

Hoping the same will happen to you soon as xxx

[jingo_x]

Well done NanaJane for getting through your doses - hopefully the next stage will be a walk in the park after all this!

Debtex - I know what you mean about wishing you could choose - I was suposed to have 4 lots of T+C but after being in hospital after the first lot my onc dropped the C - and I begged her not to - I might still ask for it to be added back in as I want to make sure I take the biggest hit I can, but lets not forget that our oncs have to make a judgement about how much our bodies can take and soemtimes they put us on a different course otherwise we might end up too damaged by the treatment.

Zelda I hope day 8 is better - it's when I start picking up and today (day 9) I spent a few hours doing cleaning and took my son to his 'snowball bop' at school (knackered now though!) - I couldn't have done that a couple of days ago.

good luck Lainie and Geegee for your doses this week, and hope everyone else post-Tax is improving by the day xx

[Debtex]

Riverside dawn plse see my post below re paclitaxel . Did your onco give any more detail about it ? Are you having FEC before the paclitaxel ? X

[riversidedawn]

Hi all, it's very scary for us November girls reading your posts - although very useful too! Side effects of Tax seem awful. I'm due to start 12 x weekly sessions in the new year, delayed a bit because of another infection. But spoke to my oncologist yesterday and expressed my concern. Although we all refer to it as Tax it appears there are lots of different types and he assures me that 12 sessions of Paclitaxel does not carry the bad side effects - who's on what and what are your experiences?

[Zelda]

Day 7 Tax not a massive improvement ,still lack any energy can only do minimal tasks also have a splitting headache today.Im becoming frustrated at these SE thinking I may just feel better before the next one.
Really hoping Day 8 will be the one where I burst into energy.
Hope Everyone else is doing ok today xx

[Debtex]

Hi all you tax ladies are doing great .! I feel really between a rock and a hard place . as you may remember my first Tax was messed up as I had a temp and I ended up in hospital twice . It was hard to work out what was going on at the time as I had back spasms as well . In hindsight I think I was having a normal if not severe set of side effects but I was so ill that my husband had to bring my toothbrush and mug of water to my bed so I could clean my teeth . As at result I am now going on to weekly paclitaxel 6 or 9 sessions ! Feel Im back to square one and tempted to say screw that I will stick with the 2 docetaxel and suffer !my husband is adamant that I don't do that as he is scared I will be ill over Xmas as I will be hitting the bad time Xmas eve / day and he is worried about hospital capacity etc not to mention screwing my daughters Xmas . So going with weekly but I'm so disheartened , fingers crossed weekly is easier or what's the point ?! Hope everyone is having minimal se 's . Hugs to all x

[NanaJane]

NanaJane Member
Dec 14
My four doses of chotherapy are done and I have just one more cycle of injections to get through (not sure which is worse, the nausea from the chemo or the back pain from the injections) but hoping to feel on the up for Christmas before starting four weeks of radiotherapy with a two hour journey each way to get through. Just wanted to say that I I'll be thinking of you all and hoping that we all get to the other end of this journey in our own time.
Thank you for the support I've gained from reading your posts, just let me know when the posse is due to depart and I'll be right with you.
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[bettypoppit]

Yeah, WTG Linz - go get that fresh air 🙂 xx

[Linzz]

Morning ladies - tax + 1 day for me and I am feeling absolutely fab - no nausea, no fuzziness. I know its just the steroids and there are undoubtedly a few nasty days looming but for today I am flying - off out into the winter sunshine for some fresh air and more xmas prep.

My 'excitement' yesterday was being told my chemo was just about to be delivered to the ward, then they took my temp and it was 37.8 - blimey, I have never been above 37, ever. And I feel totally well. If it doesn't go down I won't get treated. Could it be something to do with the steroid-induced flushing + being sat sweating away for 3+ hours waiting for bloods and presccription from pharmacy in a plastic chair in full sunshine beaming through a large window with a broken blind? Yes it could. To cool down I took off as many clothes as decently possible, then went to the loo and took off my wig and splashed cold water all over my head and inside my ears (didn't tell the nurse that though LOL). Hey presto, my temp dropped siginificantly and I was treated. Mental note - make them take my temp early doors next time and avoid that seat at all costs!

Anyway, good luck to everyone starting tax soon, and commiserations to those of you still stuck in the s/e phase. I'll be with you and complaining about it soon enough! xx

[bettypoppit]

Thanks PETA, just had another sneaky peak at the photo.... lolol cannot believe I have subjected you all to my blatent porky scratching baldy portrait in such a full on way.... it's was all about the lurcher girl for me and in my chemo fatigue fog i was being sooo 'i just don't care anymore' lololol. I hope you are feeling better day by day too and loving being in your new home... hopefully snug as bugs xxxx

[enzobenzo]

You go Bettypoppit!! I felt ok waking up today but still really ache. Think my walk will be around the top of the house!

I spoke to the oncologist yesterday and he gave me extra steroids for the pain in my throat and the aching. He's been brilliant unlike my gp who has been totally useless!

Hope you ladies are all starting to feel a bit better today and good luck to the ladies going through it today.

Xxx

[bettypoppit]

Morning lovely ladies, day 9 and defo on my way up...planning to get dressed AND take a walk around the block! Wooo hooo, WTG 🙂 🙂 🙂  hope you are all bit better today too if you have been struggling along with me xx

[LainieG]

Good luck for Thursday geeG. I follow you on Friday xxx

[geeG]

Hi Ladies - I too shall be starting docetaxel this week - good to hear SEs for most folk are more manageable … start on Thursday… Thinking of yous all … hugs … x

[LainieG]

Thanks Peta. I feel a bit better. It's just the fear of the unknown isn't it. It's like going back to square one. I think I'm worried because I had to have the fec dose reduced after the reaction I took so I'm thinking maybe the same could happen again and I'll have to go through some terrible reaction before they realise that maybe they have to reduce the dose again. I'm over thinking it all I know but that's me. I over think everything. I'm trying to relax and enjoy my good week but I'm running around getting Christmas organised because I probably won't be able to do it next week. Sorry i sound like a real moan. That's not me normally. I'm a glass half full person who believes in the power of positive thinking but just sometimes in this horrible process I'm giving in to negative thoughts and becoming a grumpy moaning old woman lol. Xxx

[Zelda]

That's reasurring Peta that the energy levels do return after Tax. Xx

[Peta]

I just looked at your photos Bettypoppit - you have a lovely head shape!

[Peta]

Hi Lainie

I didn't feel well on my first week of tax, like the other ladies so very tired, but now just over a week after having tax I think I feel better than I ever felt on FEC. my energy levels are picking up. The sore mouth and thrush has gone. I feel more normal than I've felt in ages. No headache, slightly dizzy occasionally, sensitive but not painful fingertips. If I had to pick FEC or Tax I think I'd pick Tax. I started really picking up after a week, but really pretty good considering all now. So don't lose hope, this may be your chemo of choice!

I hope treatment goes well for everyone this week. One more step, then another, hugs to all - we're all doing so well. X

[bettypoppit]

You are so right Jingo-x - loving the 'eye on the prize' and i think dogs should be compulsory lolol xx

[Zelda]

I think I haven't had enough fluids either Bettypoppit because everything tastes so horrible but I have just had some fizzy orange ( not what I normally drink) and that seems acceptable so Im going to go for it now and drink as much as possible because I have got a headache brewing xx

[jingo_x]

For those who are worried about their first Tax, try not to be...it is cr4p that's true but it's just a different kind of cr4p.  There are positives - kinder on the veins, no nausea etc and the bounce back is much more gradual rather than that great bouncy feeling you have on week 3 of FEC, but I have decided to just give in to it - rest when I need to, go to bed early if I need to and if I am going to anything energetic like have a shower (:)) I do it in the morning so I can collapse in the afternoon.  I am glad it is mid winter as I feel justified in 'hibernating'.

My worst side effects with Fec lasted 7 days and on Tax it has been about the same, so today (day 😎 I have felt a lot better.  No crying, no nap, managed a walk and even managed to do some admin. Bit of hip pain and a headache, but both bearable in my case.

I now have pins and needles in my fingers which i think is another new se kicking in and my toenails ache of course.

I think what ever we are on the cumulative effects are starting to kick in but every day we get through takes us a day closer to finishing the course, so eye on the prize girls!

starting to wish I had a dog though..... 🙂

[enzobenzo]

I agree Zelda. I was hoping for Tax to be different and easier rather than FEC. Unknown it's something we just have to get in with - but still sucks xxx

[Zelda]

Hi Ladies Thanks for your replies because I know its hard to compare side effects when everyone is different but to know other people are having similar sides effects make me realise it's part of the journey we are on and we just have to get through it.
I think I was too hopeful that Dox would be better it's just different .
Poppy gives me loads of comforting snuggles but I will be so glad when I can walk with her.
Here's hoping tomorrow will be better for all of us.
Hugs to everyone xxx

[bettypoppit]

Oh ladies, this is a tough one. On FEC, a shower and getting dressed was my starting point each day..and most days I managed to at least make and eat lunch and or supper. Now I try and have a shower but like you AMDriver, on Saturday even that was a step too far! I'm giving in to it and going with the flow, but I'm not sure that that is what I should be doing - others do seem to be fairing better and getting out and moving about! I just don't believe I could. I think I have become a little dehydrated (which affects energy) with the vile taste and oral thrush making drinking a nightmare but I'm on to it today, forcing water and fizzy orange down 😕

LainieG, I'm sorry you are in such discomfort with your hand too. More to annoy and niggle at us. Also, I'm sorry that our tales of woe are making this sound worse...it has been said before, but worthy of repeating i think, we are all so very different and what hits one, doesn't always hit another. Please take heart. I hope you can really enjoy the rest of your week 3 and we will be thinking of you Friday.... here together xxxxx

Hope all other ladies are doing OK, <<<hugs>>> xx

[AMDriver]

Completely with you Zelda. I can't believe how much my fingernails can hurt!

Managed a shower this morning (having one was just a pipe dream at the weekend), put a load of washing on and had to sleep for the best part of two hours!

Not sure what to do other than give in to the tiredness and hope that it gets better soon.

xx

[LainieG]

Zelda what a shame. You're having horrible SEs. Hope you start to feel better soon. I'm scared of starting tax. It's hitting some ladies really hard. We thought fec was bad but tax seems so much worse. I start on Friday. I phoned the hospital today about my hand. It's really sore around the drip site and its swelling up from my fingers to my wrist. The nurse said it could be phlebitis but thinks it's more likely to have been caused by the IV not being in the vein properly and some of the drugs leaking out. Oh the joys! I don't know how they're going to be able to put a drip in my hand on Friday. I can't even bend my wrist properly.
Hugs to all 💖💖

[bettypoppit]

Hi Zelda, I do sooo agree and this is one tough coctail dose to deal with, but hang on in there because - one day at a time we are doing this and doing ok and it's the long game we need to focus on. We're both coming out the tunnel now - woop woop and fresh air, energy and dog walks will be ours really soon 🙂 Hope poppy is cuddling up with you, big big hugs, xxxxx

[Zelda]

6 days post,tax thought I might be feeling better but I'm so lacking energy.stomach aches toe nails hurt,taste buds affected.I thought the Fec was bad but I m sure I recovered from the side effects earlier.
Don't want to moan but it's so frustrating when I want this to be over.
Hope everyone else is ok especially ladies having treatment this week.xx

[bettypoppit]

Ahh, thanks lovely ladies... lurcher girl is soooo special to me and a real comfort 😉

[Zelda]

Lovely Pics Bettypoppit what a lovely dog you have it's so comforting to have a dog to cuddle xx

[LainieG]

Your photos are lovely Bettypoppit. Your lurcher is gorgeous and looks very comfy on her mummy's lap. Dogs are great companions and they seem to know when we're not very well don't they. Judy is really gentle with me when I don't feel good, making sure she doesn't jump at me. 

[Linzz]

Hi bettypoppit - your pooch even has a sympathetic look on her face  Can you please ship her to Edinburgh for a couple of days to keep me company at the end of next week when the tax hits me? Pretty please???

Glad to hear that some folks are only having short lived aches/pain - proves its possible. I am keeping my fingers crossed. Codeine makes me really sick and stupidly dizzy and every other analgesic apart from paracetamol makes me ill one way or another. I have therefore been told I can take paracetamol if I am careful about checking my temp before I take it.  Only problem is that if the word 'excruciating' is what I'm feeling paracetamol aint gonna do the trick. Not looking forward to this week! Having a lovely pasta dinner tonight though, as 'last supper' before treatment, I may even indulge in a beer! 

As we hurtle towards xmas (yay. NOT.)... good luck for the week ahead everyone

[bettypoppit]

Lovely ladies, be warned!!! I have managed to upload a couple of pics and one from last night when lurcher girl came for a cuddle, but, I'm in my full pork scratching baldy posse state lololol. You have been warned!!!! 😉 xxx

[bettypoppit]

Hi Riversidedawn, I'm sure you will have a great handle on dealing with your T regime by the time you start and can go full steam ahead with pills, potions and ways to stay as comfy as possible - taking as much info as you can from us all on all threads. 

Yes I'm on 3 weekly cycles, which was FEC and just switched to D/T - 3 weekly cycles again. I had no idea until a number of other ladies started to deviate from this regime that it could be adjusted or different, but that does mean that we are being reviewed and cared for individually, which I think is a really positive thing. Your regime may be weekly, but it could very well (in fact I'd imagine very probably) be a different strength/set up so it isn't inevitable that you will suffer the same!??! I'm sure you will find out more soon and that will take away some of the unknown angst that bugs us all at times. Keep looking after yourself...you need time to heal. Xxx

[bettypoppit]

Hi Jingo_x, spot on for me too -day 4 and 5 bad, but day 6 yesterday and the worse pelvic pain ever, BUT since waking earlier this morning, I'm definitely on the up - yeah - so it seems I should be able to take comfort from knowing it's only likely to be 24 hrs...thank the heavens above 🙂 I'll start the codine much earlier next time and spend 24 hours away with the fairies 😉 lolol

I'm also getting constant miserable hot AND cold sweats! Dripping. Any thoughts?

Hugs, hugs, hugs and hoping for a good relaxing day for all xxxxxx

p.s. my lurcher girl keeps seeking me out for a cuddle which is sooooo nice - she defo knows I'm not well as she would normally just launch onto the sofa and camel plodd all over my head.... thankfully she is a 'Whippet x' and not a 'Deerhound x' lolol

Just seen that you are getting out for a walk everyday, that's just brilliant, but a step too far for me -  I just couldn't myself...can I have some of what you are on please? lolol xx

[jingo_x]

Sorry about your delays riverside dawn, at least you will have all our collective experience and tips to call on so stick with us we should be useful at some point!

Bettypoppit yes we are on the same schedule so day 7 of 2nd D/T and has been almost identical to the first lot. Day 4,5,6 are my worst days, achey, temperature spiking, tired and of course LOTS of bloody crying. Both cycles I have had one night of excruciating bone marrow pain on day 6, plus headaches, but it s very short lived for me, so I feel very lucky when I hear of others aches and pains. My onc told me to make sure I walk every day as it helps with the pain. I do walk every day so either she is right or I am just lucky!
I feel sure I am picking up a bit today. Still feel knackered but less achey and tearful. Hair still thinning though and bald patch getting harder to conceal 🙂

Rest up ladies and take care xx

[riversidedawn]

Thanks for your support bettypoppit, I was always a bit behind you ladies as started chemo 31st October so flit between October and November threads, I'll be in tune with December girls the rate this is going!

Are you ladies having tax at 3 week intervals or weekly? When I get there I am due 12x weekly sessions, it sounds awful I don't think I can cope with 3 months of those SEs!

I'll keep reading your tips and hopefully I'll know enough from you to see me through.

Happy Sunday everyone, hope you all start to feel better soon x

[bettypoppit]

Hi Riversidedawn, I'm sorry that your dates are getting pushed out, im sure that is difficult to deal with. This journey has far more twists and turns than we imagined I guess and it is one hell of a road trip. By hook and by crook, we will get through this together, so please rest up and get well after your op and we are all here for you xxx

I cannot deny that D/T has been dreadful these last few days, but, I do believe the abject pain and stiffness in my legs and pelvis are finally - either easing or being zapped by the Codine I switched to last night. Either way I am - thankfully - much more comfortable this morning :). I'm already taking some positives that #1 my bone marrow production must have been on overdrive to hurt so bl***y much and #2, forwarned is forearmed so I'll be much better prepared for the next dose 🙂 🙂 🙂  we CAN do this ladies oh yes we can 🙂 🙂 🙂

Zelda how are you doing? I hope not still having it really bad too. Xx

Jingo_x, I think we are on the same treatment day (sorry I've got total addled brain ) and wondering how you are doing too?xx

Takecare ladies and rest up if you can xxxxx

My brain is addled

[enzobenzo]

I'm with you. Feel totally shattered and zonked out. It even hurts to chew! Hopefully only a few more days liken this

Hugs to all and sending all my love xx

[Zelda]

My body still aches and has no energy 5 days after Tax can just about drag myself from bed to the sofa. Nose was bleeding not much but I believe it is a side effect.
No nausea with this drug but it seems to affect the body entirely I've never slept so much or being so incapacitated. Do hope this passes soon.
Hope everyone is having the best weekend possible under the circumstances xxx

[riversidedawn]

Ladies, T sounds awful I was due to start on 2nd Jan but another infection and op yesterday to remove implant has put everything back a month. I hadn't had a period for 7 years until they started again on FEC!

Rest up everyone going through bad times x

[nicnac15]

H linzz interesting to hear your stillhaving peroods thoight i was the wierd one as i too tgoight they would stop sounds similar to me this week was my normal one due but a week and its still happening. This is why i ended up in hospital whole of november i had one was horrendous. Ive been let out of hospital tonight so resting up on my own settee whoo hoo on iron tablets and tranesamic acid so fingers crossed it stops.

Congrats peta on your new house, be nice for xmas. X

Im reading all these posts about 1st T treatment and getting slightly worried bout aches and pains mine is due on 22 dec ! Xxx

[bettypoppit]

Hi lovely ladies, nothing different to report...sooooo tired I can hardly move, aching really badly now and not moved out if pj's in 2 days but did manage a shower this morning....phew. Temp spiking but despite 3 thermometers I can't get a true reading!!!! I hate that others are suffering this too, but at least we know it is 'a norm', which is a comfort in a strange way. 

Congrats PETA for your house move.

Hugs to all xxxx and here's hoping to improvements for us all very soon

[enzobenzo]

Thinking of you AMDriver xx

[AMDriver]

Am on day 4 of T1. Still in bed with pjs, socks, dressing gown, and two hot water bottles and still cold! Legs ache, can't get up the energy to eat anything, mouth feels furry......can't wait for this to be over...

Hope you other ladies are faring better

Xx