Had my first of twelve on Wednesday and wondered if anyone else was having this particular chemo and how you felt on it. Not been able to sleep much due to the steroids but think feeling bit better today - fingers crossed. Mind you it was rather traumatic on Wednesday as body had decided not to play and would not allow blood to be taken from port. Poor oncology nurses had me doing allsorts for an hour and was not having any of it. In the end had to go down to xray to make sure they could put poison down the port. All ok to do so but had to use my vein for blood test. Didnt mind as long as only taking blood should not make vein go hard like the chemo would as can only use one arm! Have been told that I should feel better on these if I suffered on FEC. Will wait and see. As with FEC it was normally two/three days later when it all kicked in and had no energy/nausea etc etc. Any help appreciated. Adi x
I have just had no 13 0f 18 and counting down the days. So far ses have been ok. I have a bit of nuropathy but not so bad that i can’t do up buttons etc. Feel a bit tired but rest when i need to. They should start reducing the steroids on subsequent treatments. I am on 4mg now which i have been on since about week 4. That means my sleep isnt disturbed and i don’t have to take any other meds like with FEC. I have had a bit of bother which heartburn so take rintindine for that.
It is a lot kinder than the 3 weekly stuff.
hope that helps
x sarah
Hi. Im having taxol weekly (well, three weeks on and then one off). I had TAC two years ago and it IS kinder, but still hard. Ive had 4/18 so a long way to go. My nausea is controlled but the tiredness on day 3 and 4 is extreme. I can do very little on these days! Also, the psychological side to it, EVERY WEEK!! Monday is one of the days i dont feel too bad nd Im back in hospital having the next dose - the hospital have not got it under 8 hours yet!! Very frustrating!!! Im not getting and joint or muscle pain that i did with TAC… its just the lack of energy!! Still, if it works…!!!
Sadie Xx
Thanks Sarah and Sadie. Still hyper today but no doubt tiredness will kick in eventually. Nice to hear from someone that has had the experience. Eight hours seems a long time Sadie. Thought I broke record on Wednesday with bloods etc. I was in there for a total of 3.5 hours in the end. As you say - if it works we will do anything:) Have a good weekend. Adi x
8 hrs is naff. my team work really hard to make sure us weekly ladies are out asap. Every 3 weeks i have my hatrick, herceptin and zometa as well as tax. Usually they put the pre meds in, then if i am just having tax i have to wait for an hour after the steroid. An hour to give me the tax. If I have all 2 then they give me my zometa (15mins) whilst waiting for steroid thingy, and then herceptin which takes 30 mins.My record is 2 and a half hours. I have my bloods done on mondays, and chemo on tuesdays.
Sadie, why do they take so long? I occassionally have had a hold up with chemo not arriving on time etc.
x sarah
Hi. This week i saw the Dr at 9 (bloods already done the day before). Had all my pre meds but was still waiting for the chemo at 1pm.(pharmacy slow!) I finished the chemo at 2.15 but then had to wait an hour before i could have the Avastin that Im on every other week. I was ready (well Im not going anywhere, am i??) but they did not start it till gone 4 because they were all busy with other people, my Mum was constantly reminding them about me. Out at just gone 5 o clock.1st in and last out again. I do have the extra Avastin to you ladies, but i am frustrated it is sooooo slow. They seem to be very unused to weekly chemo. Its a big chunk of my life!!
Sadie Xx
Sadie I agree with Sarah, long time to be in hospital, appreciate you having extras to me, but it is very tiring hanging around. Oh hum… Adi
Thanks Adi, maybe i need to get a bit more stroppy! Hope you do not suffer with SE over the next few days! Keep in touch.
Sadie Xx
Hi Sadie, as you can see I cannot sleep. Being assertive may help next time. Been up since 1.30 as fed up with just tossing and turning in bed. Been on here for a while, had a lovely toasted cinnamon bagel. Now wondering if I should try and go to bed and see if can get some sleep! Worcester is too far for me, otherwise would come over and see you sometime. Lack of sleep and red flushed face and neck seem to be the only SEs on Taxol at the moment! Have that lovely glowing look, and everybody has pleasure in telling me I look well! Little do they know… Adi x
Hi all I will be joining u in a couple of wks just waiting for norm checks my old chemo unit was great in and out in a hr it’s a pain we have to sit up there all day when I was having 3 weekly I had bloods done 2 days before do they do it different on weekly yes I know that red warm face glow it’s horrid and the non slp I used to try book chemo in first thing in morn that way the steroids had time to wear off tc everyone laura x
Hi - Just a quick one to share with you the fact that I got in and out in under 5 hours today!! Wow!! No waiting round, just all very efficient. It was my week with no Avastin, so jusy the Taxol nd pre meds and my Bisphosphonates (Bone strengthening things!!). So actually got to sit in the garden for an hour on my return!! Feel much better for being treated this way!!!
Sadie xx
That’s much better Sadie, allowing you time to do what you should be doing!!! Not sure about Taxol!!! Was hyper from the steroids for three days and then the tiredness truck came along and hasn’t budged yet! Only got tomorrow and back again on Wednesday. Hope SEs keep away from you. Adi
Hi adi, I spoke to my Onc last week about the steroids. She said she wants me to have as little steroids as possible, so i have IV steroids on chemo day then no more after that. During Tac two years ago i had three days of steroids so i know what it is like, not fun! May be worth asking your Onc if you really need the steroids? Sorry, this is not medical advice, but thought i would share with you my experience. Hope you get an ok day tomorrow before wed.
Sadie Xx
Hi Sadie, thanks for info and hope you are well. Onc says I need the steroids in case of allergic reaction. So will perservere with them just been told to take them a bit earlier. So am trying that and will keep fingers crossed. Had number two yesterday so 10 to go. Yippee. Have a good weekend
Hi Adi - I hope taking the steroids early is helping!! And the sunshine!!
My weekly cycle has been messed arround a bit as I have chemo on a Monday and there are lots of Bank Holiday Mondays coming up - so I get a few extra days this week and have it on Thursday. Im looking forward to a couple of days ‘breathing space’ and watching my daughter in a Netball Tournament (Nationals!!) So pleased I will be able to go and watch!!
Happy Easter to all us weekly Taxols people!!
Sadie xx
Hi was just wondering whether anyone is managing to keep working at all on weekly Taxol? I will be changing to this after two more Fec and have been able to work for about 8 / 15 days on Fec, but need to know if it is realistic to think of working at all once I change to Taxol? To be honest I won’t mind stopping work too much if i won’t be up to it, but would like to try to plan ahead a bit if I can!
Thanks!
Sue xx
Hi Sue, Im on taxol with avastin but the avastin is said to have v little side effects. To be honest, I would struggle to work. My onc said I have ‘got it hard’ and often people have v little SE. But, I have chemo on monday, tues is ok, wed start going down, Thursday nd friday are horrid, sat start improving, sun is okish nd back at it on monday! The week off is good nd feel almost normal!! When I do have energy I want to do other things, not work. Quality kids time. Hope this helps!! Good luck nd keep in touch!
Sadie Xx Xx
Hi Sue, I am on weekly Taxol and had my third on Wednesday. Thursday and Friday struggle to sleep and then the tiredness/fatigue starts to hit on Saturday and Sunday being the worst day. By Monday I feel slightly better and almost normal on Tuesday and then we start again the next day!!! I am not working at the moment as GP recommended not to so that the fatigue does not set in as have a stressful job, but to be honest I do pop in to see staff and stay for an hour every now and then, and that is all I can manage. So GP is right! I think it is important that we rest as much as possible during chemo as it does take its toll on our bodies and could slow down recovery time. But if you feel you can work, I am pleased for you. I certainly don’t think I can. Adi
Hi
I am on 15 of 18. I have tried to work, but have now had to have a break. I have just had 6 FEc (started sept) and felt lots better up to week 5 of tax but now find it hard going. Yesterday I did a bit of stuff around the house, went grocery shopping etc and today have no energy. Roll on end of May when I stop chemo for a bit. I am trying to book a holiday for mid June when I will feel a bit more energetic…
x sarah
Thanks for the info - it is clear that I will need to cut back my hours when I change to Taxol and will need to see if it is possible to really keep going apart from perhaps a weekly catch up. I will need to warn my manager and team . My current sick note only runs to the end of June and they don’t know about the Taxol yet.
Sue x