Stella - just to say I’m so glad it’s not just me. I thought it might have been the tamoxifen which I’d just started as suddenly my legs feel really weak and achey. I have wondered if it could be linked to some nerve damage as my hands are weak and the soles of my feet aren’t right either. Hopefully someone may have an answer.
Stella , my last Tax was on 11th February (nearly 2 months ago!) and only now I’m starting to feel ok… my legs especially were very weak and the muscles ached so much I couldn’t do the stairs! Same with the arms, felt like they weighed a ton! I started Tamoxifen a month later and I didn’t know what was causing what in the end ! Anyway, onc said that the pain and the drained feeling after Tax is quite common and can take weeks (!!!) to get back to normal…
Reeb: my hands are funny too, I haven’t regained the feeling in my fingertips yet… No sign of hair growing either, but that’s another story …
Hi Stella, muscle weakness thats an understatement, I feel as if someone has tied those weights you can get from the gym on my arms, but particularly my legs I am due my 5th tax of a 6 regime tomorrow!!!
I actually thought that it was partly due to the weight I have gained about 2 stone since my chemo started at the beginning of January this year, but when i visited my onc, having had to stop several times to rest whilst trying to walk from the hospital doors to the ward (not that far), she told me it was an accumulation of the chem drug tax, and it would most probably get worse!!!even when the regime is completed, well i am only 44 and if they think I am going to use one of those battery powered cart things not a chance in any case the kids would think it was a bike or something and have a fab time, the se’s in my experience seem to subside, you start feeling half o.k. and then you seem to slide back again, thats happened to me twice now, I really hope I dont slide back too far days 2-8 at least I havent been able to walk at all, and have had to take to my bed, which really isnt me, try not to get too worried , unless you obviously feel REALLY WORRIED AND ILL, then ask, I have found it better to go with the se’s rather than try to fight them although I must admit at first I found it really scary, following my first diagnosis 10 years ago I had epirubicin and chlorophosfamide, sorry for the spelling apart from losing my hair and feeling a bit tired there werent any side effects, I can honestly say for most of the time following this regime I have felt pretty ill, as have a lot of other ladies on here, if its any help to you this feeling you have got is usual, rest as much as you can if you feel tired rest, i am terrible and push myself far too hard when I am having a good day, then suffer for it after when I try to get up the next morning and end up staying in bed… sorry for rambling but I have taken my steroids today, the second lot at 1.00 o’clock this afternoon and I still feel like I have matchsticks keeping my eyes open, dare say I will be awake nearly all night…
Hope this is of some help and unless you have a temperature, or feel really, really ill, you can more than bet it is down to the tax.
Sending you a hug, walking stick, crutches and a zimmer!!!
love and all the very best Liz xxxxxx
Pleased(?) to find that it is a recognised side effect - sorry we are all suffering from it though. Hope everyone improves soon. I’m not taking anything else at the moment so know it’s the TAX.
I’m to be on Arimidex but not started yet, got to have bone density scan first.
Good to know it will go even it’s weeks.
I’ve been lucky enough not to suffer from neuropathy so hope your fingers improve soon Reeb and Lazycat.
ET - you sound as if you are having a terrible time. Hope you improve soon. I sympathise with you over the steroids. I took mine early too and still couldn’t sleep.
As much as anything I thought it odd that this SE didn’t kick in when all the others did.
Just wanted to add that I’ve also got the extreme weakness and ‘weightyness’ feeling in my limbs, especially my legs! Am 4 weeks post my final chemo of FEC-T regime and must say I wasn’t told to expect this.
I was deliberately searching for a thread about it on the forum so I’m glad I found this one. I was beginning to worry and feel downhearted that I wasn’t even feeling as strong as I did post-chemo 5(once SEs had ended). Short walks puff me out and I even feel like an elderly woman when I get up from the sofa(I’m only 42 ).
Want to be feeling strong cos it 3 weeks of Rads next. I’m going to ask if they can delay them by a week or so until I feel stronger. Has anyone done the same or intending to do so? If so what was the response?
This is probably a really silly comment, but I am (used to be) a regular runner. I managed to run throughout FEC, but definitely NOT tax. I have this terrible ‘heavy legs’ feeling, find it difficult to open jars and bottles and I can’t lift things like I used to. Anyway, my onc said in passing on my last visit ‘you must be feeling very tired as your red blood count is down; you’re quite anaemic’. It hadn’t occurred to me. I’ve changed my diet, but she advised against supplements and said she will think about giving me an injection if it doesn’t improve. This may not help you, but it is worth checking.
Annie
Annie22 - Thanks for comments about anaemia. I have wondered about this but I had a blood test 2 weeks post last chemo and my RBC was 10.1 then so I’m assuming it will be even more now? (I think 10 is the minimum when having chemo??). I will ask when at hospital on Monday
I finished my last docetaxel on Feb 15th and I have experienced similar muscular and joint pain that you all describe. I felt like I was quite literally dragging myself around and climbing the stairs was a mammoth task! It is easing slightly now thankfully, however I am still experiencing quite significant peripheral neuropathy. Fingertips numb and tingly and my feet are very uncomfortable much of the time. Feels like iced cold water running through my big toes and balls of my feet! Was not warned of this side effect, however have been advised that it is (likely!) to go over the coming months. Fingers crossed for all of us that these vanish quickly! Re. the radiotherapy, I finished this on Monday (a four week treatment plan). I didn’t delay and felt really, really tired and achy when I started from the chemotherapy. I’m glad I didn’t delay, I found the radiotherapy a ‘walk in the park’ compared to the chemo. Feel that the achiness has subsided and now need to focus on the Herceptin, Letrozole and…back to work next month!!
Jaynek - Thanks for your experience re:Rads. Did you discuss delaying it though? Why are you glad you didn’t delay? Was that just to do with getting it all finished asap?
I had only 3-4 weeks in between my last chemo and start of rads and that was the dates I was given though some others I know had a longer time in between. Not quite sure why this was the case. I really just wanted to get on with it, get it over with and get on with my life. I am going back to work early May and it was a factor in my not wanting to delay anything. I am keen to get back to work as a big part of me and getting things back to some sense of normality. I know I will not be 100% back to full strength but am going back phased return for a month and feel I need to push myself on to build up strength too. We are all different though and need to make decisions that are right for us individually.
Take care, J
Yes, understand your desire to return to some sort of normality as quickly as possible.
I’m just concerned that for me, rads too quickly on top of how I’m feeling now(also had complication after final chemo- tooth abscess - and its associated hassle…least of all a legal case now being undertaken against the dentist who did a root canal filling 7 years ago because 2 pieces of dental instrument were left in my mouth!) will really exhaust me and may delay my overall recovery.
My work are being really good about me being off, but I do want to get back, hopefully, sometime in June as the summer months are the busiest in my job.
Heather I feel like you - less strong than I did just before the last chemo. Apart from the heavy legs, I just run out of energy really quickly. I guess I’m impatient to be back dancing and hiking like I was before. I’m not used to living life at such a slow pace - I guess none of us are.
I too thought I might be anaemic, but my rbc is OK.
My heart rate seems to get really fast with the slightest exertion too.
Hope rads doesn’t make it worse.
Perhaps the sun will perk us all up.
My legs feel heavy after the last tax but i told me legs to get moving i put it down to weight gain loss of muscle over the tax period so now working on fitness and weight loss again. phewy…
Dancingirl-know what you mean - all those activities we took for granted before seem like a figment of imagination at the moment…was in the park today(managed to walk there & back so happy about that :o) )and could hardly believe that I used to be able to run 3 laps of the place pre-bc!! That will def be my goal again over coming months!
Hatty - yes, I wasn’t prepared for weight gain either. I’m heaviest I’ve ever been in my life! and none of my work ‘bottoms’ fit me anymore so serious weight loss needed to get back into those trousers/skirts. Due to start back in July (after rads) so hopefully can shift a bit by then…don’t want to waste money buying bigger sizes for short term use!!
HI everyone, thought I’d jump on to celebrate walking 3 WHOLE MILES, half of which up a lake district hill last weekend - my usual 14+ miles, and I finished my Tax in august2010. Hmmm. Don’t panic tho, things really do improve its just my improvement is very slow, I can now swim 25 lengths of regular /large pool but somehow walking is the hardest-I also knackered my knees trying to jog too soon after I finished chemo and had no muscles at all…
have lost 4 pounds of stone I put on tho so thats great…
we can do it!
bw Nicola
hi everyone, well done moorcow, i couldnt walk three steps at the moment, so 3 miles is definately an achievement, more information about this tax is needed, i am 44 feel 144 and got 1 tax left, i must admit i really feel like i carnt do it again i have 1 left, this 5th one has been really, really hard, the total no energy thing is starting to get me angry now and thats too negative an emotion plus it takes up too much energy lol
anyway well done, hope you gain strength on a daily basis, as for the weight i wouldnt worry too much, if i could taste anything it would be a bonus x liz
elizabethtracy I’m the same as you. Got last tax tomorrow and cant wait till its over. My muscles are so achey and arms like lead. Trying to get out for walks but it is in the 90s here everyday and so humid I’m done in by the end of the road. Feel sitting around dosnt help eother so it walks around the sitting room for me.
Hope it will ease off after this last one. Desperate to get back to uk to see family as haven’t seen them since diagnosis and hoped to fly home 1st week in may. Two 8 hr flights so not looking forward to it if still so achey. Was wondering if good Massage would help.
hi soi,its cool here, the heat must not be helping you at all, the muscle, aches and pains are getting a bit better,but up until today i couldnt bear to touch myself let alone have a massage!!!
roll on the last one, i am dreading it, but want to get it out of the way, you know what i mean dont you?
I havent quite got to the point where i feel i could go out yet, i am on day 7, one more neupogen injection tomorrow too,
all the very best to you, and i hope you are well enough to travel and be with your family very soon,