question
with TAX, i have found that i have felt grotty most of the while between treatments - those of you who have finished-, after the last chemo (TAX) was it much longer than 3 weeks after last one that you started to feel any better/had more energy?? im beginning to think the side effects will never get better - please tell me they do n how long it takes.
claire x
Im three weeks since my last tax and started feeling better last week but my legs feel heavy and energy is light but still getting out with the dogs and horses so not to bad. I put it down to having lost my fitness level over the 6 months of chemo and now feeling better you just have to rebuild slowly. I remember thinking the same as you ah im never going to feel better and just as the next tax was due i was feeling tip top again. Hang on in there you will be feeling super duper before you know it.
hi everyone, liz here day5 5th tax, just about managing to hobble today, i have felt pretty much delihearios sorry awful spelling, since i had the last dose on thursday, i have lost friday, saturday and just held on to sunday, i have 1 tax left to go, surely i shouldnt have felt so ill should i, i actually felt like i had gone insane, omg, i only just held on, please someone tell me they have felt this ill with ses, i dont want anyone to have felt like this, but unless someone assures me i am going to refuse to have any more
hi claire, how many tax have you had and got to have, see my previous post, following this 5th one i thought i would surely not get better, still feel totally c£p it never seems to stop, just to be able to walk would be good, even from the bedroom to the bathroom, have i got a low threshold for ses i dont know, but i feel like i have been hit with a friggin steam roller, no exageration, i started injections yesterday too 5 of them, i really dont know how i am going to get through this
Thanks for that Hatty! I really needed to hear that today. TAX se’s are so tiring. I’m just hoping rads and tamoxifen won’t finish me off and I can get back to my old life soon. I’ve been in bed while the weather is nice. That is so wrong! lol
Liz, TAX messes with your head. It tends to make me paranoid about everything. I’m also very grumpy with my family and they are being so good. I know what you mean about losing days. I had a reduced dose so some se’s were better, but the tiredness is the same.
Morning Ladies hope SEs are at bay for you all. Due to start my first of twelve Paclitaxels (Taxol) on Wednesday and would appreciate feedback regarding se’s from anyone having the same. There seems to be a lot of you having Tax but it would appear to be Taxotere which is slightly different (I think!). I am due to have them weekly so I think the dose is slightly lower. Thanks and enjoy the sunshine. Adi x
Hi Adi
I’m having weekly Taxol - my third one this Wednesday. I feel quite lucky so far, as side effects have been minimal. Week one aching bones - felt like a 90 year old for a couple of days. Other than that just a bit tired.
This morning I have woken up covered in a rash but not sure if that was due to sitting in the sun or the Taxol (just waiting for BCN to phone me).
As yet no hair loss but I’m just waiting… I know it has to happen.
Good luck
L
Hi, my hair is actually growing back. I had 6 FEC previously. Its the E bit which causes hair loss. My eyebrows have thinned and I am trying to hang onto them for the last 6 weeks of treatment.
x sarah
Morning Linda and Sarah - phew that sounds encouraging! FEC was awful so hope Taxols are kinder as twelve weeks seems like an age… Interesting comment on the hair as I have still got some apart from very thin on top (and grey)! Maybe it will be worth perservering with the cold cap then? I hate the cold cap, but maybe will give it a go again.I found it easier when it was cold, as hats and wig very welcoming, but not so sure when the sun is out!! Should be happy to see the sun I know but not comfortable under that wig - should just be grateful that it is temporary I know:) Thanks again Adi x
Hi Adi
I actually never bothered with the cold cap. Had the orangutan look by cycle 4 of FEC and then it started to grow back. I didn,t shave my hair off either. Hair growth now looks like a severe hair cut. It is quite thick, dark at the sides and white on the top. Random!
Still, look on the bright side, I have saved a fortune on hairdressers lol
x sarah
Hi Sarah - would agree on saving fortune at hairdressers @ £80 a month for cut and colour. Just as well really as two wigs have cost me a lot more than that! Still undecided whether to torture myself with cold cap. Want someone else to decide for me - lol. Adi x
I’ve just finished my 3 x EC and 3 x TAX. Hooray! I lost all my hair on new years eve - a couple of days after the second EC. However today I find my proudly re sprouting hair (under 1cm bum fluff really) is now falling out loads! Has anyone else found this after the TAX has finished? Will it all go again and back to bald? Any ideas?
I xx
Liz: You are not alone!!!
I felt the same after my first TAX (having done 3 Fec). It really messed with my head and I couldn’t even think there would be a tomorrow. I lost an entire week in it’s awful depressing fog, thought I was going mad too + aches and pains all over and no taste or appitite, no energy at all. BUT IT DOES END, it started to get better day 8, had a couple of up and down days and then got better every day; my second TAX has not been so bad, the SEs seem a bit different on every cycle even if the poison is the same. Make sure you report your SEs to your team before the next dose though. Chin up, one day at a time…
CromerCrab: you keep on trucking girl, this stuff really wears you down but it WILL finish, you’ll be done with it about the same time as me though mine is three weekly. I can only presume it’s the SEs building up , sending hugs ((()))
I think I am imagining things, I seem to have some soft facial hair coming back, and a couple of stragly eyebrow hairs…
I like the offset costs argument of wigs Vs hairdresser, especially as I have a wig lady coming tonight, my first one is starting to look a bit tacky…
hi peachez, thanks for that, your boost was just what i needed, it does help to know that you arent on your own, i hope i pick up soon, i havent even got enough energy to have a wash. never mind hoping it will get better soon, in bed as we speak, feel too weak, but then feel a bit better, then weak again, really weird, is right what you say the poison is the same isnt it, and yes when you put it like that it makes more sense has to how it makes you feel.
thanks once again for your post much love liz x
hi folks - thanks for the comments - can see it may get better when treatment ends
ive had 4 FEC and 3 FAX so far, one more TAX to go this thursday hopefully
interesting comments sbout feeling low/depressed - ive felt at my whits end with TAX, soooooooo low- really want to get better
and yes i have aches and pains and fatigue
hugs to all
claire x
Hi all
Just an update after my app at Rads dept today…
Triphazard99 - asked re:my margins & was told they were clear & that usually after Mx margins would only have been mentioned if they were not clear or wide(?)
Pinkrose - double-checked with dr about damage to implants & was told damage should be minimal (!!) but that instead of the original 3 weeks of rads (for my 2 nodes involvement), having implants has meant the treatment will be spread over 5 weeks so that although the dose will be the same it will be broken down into smaller amounts daily. Sounds better to have smaller daily doses but must admit 5 weeks of travelling from NW to SW London(Marsden) on tube doesn’t sound that appealing. Plus knock-on effect will mean another delay to my return to work plan, but tbh that not so important in grand scheme of things!
Anyway back for planning and marking up next week and was told start would be 2 weeks from then so thankfully have a bit of a reprieve before it all starts :o)
Heather xxx
Hi heather. Thanks for this. I saw onc yesterday and she said I am so borderline rads that it can only be my decision. I was asked to go on the supremo trial and my hubby said that would be able to make up my mind for you, but I’m not happy for a computer to decide for me. I also asked about margins to the chest wall and she gave me the same answer as you. I have come to a decision over night that i should have them as I would always be wondering ’ what if’ if I don’t and knowing that I have really done everything possible will make my moving forward possible. I Do wish I’d been told about this before my mx as I may not have had a recon. Also, really 1 week after chemo is not a great time to make a decision about what I’m going to eat for breakfast let alone if I need rads. But your posting has helped me, especially knowing that damage should be minimal!
Thanks again heather. We should compare notes when rads start x
Hi folks,
I had TAX #2 last Thursday and guess what? By Thursday night I was back in hospital for yet another few days, this is really starting to get to me now. I moaned to everyone about the 4 AC but that now seems like a doddle compared with getting through 4 TAX!
I wasn’t neutropenic this time, instead I had a delayed allergic reaction, notwithstanding all the extra meds they gave me to stave this off because of having one the first time. I still have two more to get through and now I really am just taking things one day at a time because I it’s all I can deal with.
My onc has decided that for the last two treatments I will have to go in as a day patient so that I’m in the right place if things go wrong and she’s put me on some strong oral anti-bs to try and ward off any danger of more neutropenia. Roll the end of May when it’s all finished!
I went for my rads planning session last week and what a relief it was to be talking about treatment with much fewer (and less cr**py) SEs!
I’m so glad to see that some of you have now managed to get to the end of treatment - well done everyone! xx
hi nymeria, tax is an absolute bitch, i can safely say the ses have nearly killed me, i am not a baby, i am strong minded and willed, and very positive,
some of the things life has thrown at me has made me that way,
BUT I have been physically on my hands and knees with this treatment i have just had my 5th of 6, i reacted on the 2nd but the staff told me thats “not unusual”, well whoopee for that as i was being picked up off the floor!!!
then someone comes out with “it is do able”, YES but in whose opinion, when they have had none or next to no side effects and you feel, well, YOU know how it feels dont you?
anyway i am just posting really to say to you " i swear i have some idea of how scared, vulnerable, ill and near enough everything else you felt, and GOOD FOR YOU, for having the guts to face this crap and spit in its eye, (have a spit for me too)…
All the very best to you, you keep going girl liz x
Hello
Pinkrose - Do let me know when you start your rads. I’m going for planning next week and was told I would be starting about first week of May so in total that’s 7 weeks from last chemo on 14 Mar. I so hope to be feeling a bit stronger by then! Let me know if they also want to spread yours over 5 weeks(I can’t imagine why they wouldn’t - maybe if they don’t suggest it initially, you could! My treatment’s at the Marsden so they’ve got to be one of the most informed Cancer hospitals around). It will be good to compare our experiences as we both have implants :o).
Nymeria - I sympathise with what your going through on Tax - it is a really hard drug to tolerate, well it was for me…I was up and down to A& E everytime with something or other and the rest of the time mostly in bed feeling very rough. Tbh you’re probably best off as an in-patient then at least you are right there if you do get a temperature or reaction - Good Luck!
Heather xxx