I know ive finished chemo and rads but i still look in on you all to see how your doing.It is an up and down hill ride but you will all get there, its now 4 weeks since i finished the rads and im feeling just like my old self msot of the time, i do get tired when i walk alot and my legs dont seem to wanna walk very fast either.
My hair is growing back well and so are my eyelashes and im now able to wear mascara again.
But my big bit of news is that im no longer wearing the wig, i feel sooo much better and feel less concious of having very short white/gray hair than wearing my wig even though it was lovely… I feel liberated now. ive been into my local tesco’s and to my sons school where i used to work… I just though this is me and stuff what everyone else thinks. plus im getting hot flushes with the tamoxifen and its like wearing a wolly hat in summer.
I do still have days where i feel down but my sister gave me a little saying that i keep repeating to myself on those days its
Yesterdays history
Tomorrows a mystery
Todays a gift !!!
Hi everyone, im back after cycle number 7, im not impressed, i think that one has really worn me out. Energy levels didnt rise all weekend, on a scale of 1 - 10 they were a 0.5! Hope everyone else is ok, and that chemo isnt being too unpleasant.
I am seriously thinking of asking if this last cycle will make much difference as my tumour isnt shrinking. I know that they can operate and find that its all dead cancer, but i am getting worried that it may be the opposite, and by having another cycle i am giving it more chance to spread. I just wish i could see if it is working.
take care
anna
anna so sorry you feel so crap at the minute, i had 6 chemo and yes had had enough by the end, i am now nine weeks post chemo and cannot beleive only have 6 more rads to go out of 25, you will get there keep going girl
sally wow well done, no wig, i still have no eyelashes, and hair is growing but thin and grey yak, needs to thicken up before i get brave enough, love the saying sally will try and remember it but you no how chemo brain is
thinking of all of you still swapping julie x
Anna - sorry you are feeling crappy, I must say the last 2 cycles for me have wiped me out energy wise. I think it just takes its toll. But only 4 weeks and you will be over it. See what the ONC says about the last one, worth asking the question. It was never an option for me not to do the last cycle, he even upped the dose a bit so he has given me the absolute maximum. Just think, 4 weeks of feeling crappy is a small price to pay, you are a strong girlie, keep goin honi!
Sal - Pmed you - go girl without the wig. Love the saying
Juli - rads nearly done - well done
xx
Anna, do hope you are feeling better now. I have found each cycle that the absolute tiredness/fatigue/heavy limbs etc gets worse. I’ll be having my 6th and final TAC next wednesday, not looking forward to it but that will be it then, I’ll have done it, then radiotherapy. I am surprised how good I feel at the moment (on day 14) as I had awful 10 days after last cycle, till just 3 or 4 days ago, and before that no good days at all as spent 12 days in hospital with infection. However, I feel so good I have just booked weekend in nice hotel in Cornwall for me and husband, hopefully it will do us both good to get away. So roll on Friday.
It was good to read your post Sally and how you’re getting on post-chemo. I’m following close behind you! Love the poem.
hi Everyone, sorry for being miserable on last post, i guess i find it frustrating that this thing isnt changing much. I have spoken to BCN today and told her that i am concerned about the tumour now being very painful, that i am worrying that if chemo isnt working and by having another cycle, its giving it more time to spread. Anyway she was great and has said that some tumours dont shrink, (ladies on here have already said that, but still worries me) also that sometimes you can get pain in the tumour as chemo is reacting with it, and she is also going to try bring my appointment forward and try arrange appointment with surgeon for sometime next week.
she also said that if oncologist didnt think tumour was stable he would have stopped chemo and brought surgery forward.
Dae good luck with last chemo, nearly there, yay.
Jayney you are soooooooo strong, thanks for your kind words.
take care everyone
anna
Hi - I was getting a lot of pain but at my last visit to the oncologist a few weeks ago she actually asked me if it was hurting. I said yes it was something I was going to mention and she said “Cancer doesn’t hurt. The aching is inflammation after the cancer cells dying off.” As neither she or I can now feel my lump (it was 6cm) after 3 x EC and and a further EC and then 4 x Tax to go I am hoping that she is right.
Hey - can anybody already on Tax help out on this one please? I have had 4 EC and due to start Tax on Thursday. I was given a presciption for dexamethasone at my last oncology appointment but didn’t pick up my meds until today. I was really surprised that I have to take 4 x 2mg tablets in the morning and the same again in the evening - for three days. The most dexamethasone I had on EC was 3mg - so it seems like a huge jump to 16mg. Does this sound right? I rang Boots and they said they have def prescribed what is on the prescription. I couldn’t sleep and got really depressed on what little I was taking before and so I feel pretty scared about this much greater amount.
Secondly, my hair has started growing back over the last month or so. Has anyone else had EC/FEC before and had their hair grow back during Tax? I would be disappointed to loose it again!!
Hi Paula , I finished chemo in june but just re-checked medication lists i have kept and I too had same dose of dexamethasone while on tax. Cant help you on hair issue as continued with none all through. take care kittyx
Hi Paula, i have the same dose steroids, although my oncologist says to take them at 8am and 12noon so as not to keep me awake. They are supposed to reduce the chance of allergic reaction amongst other things, so important you remember to take them.
My hair has continued to grow on the tax, although i now only have 1 eyebrow hair! its a good feeling when your hair starts growing again, even if it is millimetres!
Im soooo jealous of your tumour shrinking so much, it would be nice if the reason for the pain is the cancer dying. Ive heard before people say cancer doesnt hurt but when diagnosed i had the same type of pain then.
good luck with the chemo, i have done 7, 1 to go! yay
take care
anna
Hi paula,I’m surprised your oncologist hasn’t explained to you about the extra steroids. The extra steroids are given to help lessen any side effects and to help lessen any allergic reaction to tax.My hair also started to grow back before I started tax, but unfortunatly it fell out again along with eyebrows and lashes this may not happen to you though everyone has different reactions
I had to take 8mg on day before chemo and 8mg on day of chemo, but these doses were reduced each time as I didn’t have any allergic reactions and wasn’t sick, in fact my last chemo last Mon I only took 4mg in the morning of the chemo. Your dose sounds right to me as a start. My hair started growing back after I finished the FEC and I now have a covering (I did 4 x FEC and 4 x TAX). Eyebrows are very very thin and so are lashes, and short. Eyes look a bit piggy. I did lose some hair on the week of my chemo, but by week 3 it really had a growing spurt.
Good luck
Jayney
x
You are all total stars - I so like this site cos everyone is so helpful!
Anna - I am very grateful of apparent shrinkage but will not have ultrasound/MRI until January so until then will not know what is happening in there for sure. Just keeping mu fingers crossed! When the oncologist said you don’t have pain with cancer I did say that is not true as I also previously had pre-diagnosed pain - which is what pushed me to get the referral
Mel - it sadly wasn’t my usual oncologist who I affectionately call Dr Oh-so-luvverly - but someone else. Very nice, but a bit brusque and fleeting. The nurse just walked in after her and gave me the prescription and I said what is this for? And she just said you need to take the dexa beforehand!! I’ve had no info about Tax. In fact the only reason I know about the much more possible severe s/e is from this and the MacMillan site forums! I have had no advice from my practioners.
Janey - you said you were taking 8mg - which would be 4 tablets. I have been told to take 4 in the morning PLUS another 4 in the afternoon - so 16mg in all!! Were you really taking half of this?
Thanks everyone for your input - it is much appreciated!! Paula x
Yes, I took 4 tabs each day so a dose of 8mg each day, but others on here took 16mg. I think then I took 2mg on day 2 and 1mg on day 3, but again these were reduced to 1mg and 0.5mg respectively. I did have a really bad outbreak of pussy spots on cycle 6, they were awful, like acne. ONC then decided to reduce to a minimum and haven’t had them on cycle 7 or 8. the steroids can increase acne/spots. 16mg does sound a lot, perhaps be wise to check??? I got all my drugs from the pharmacy at the hospital and the chemo nurse went through each one thoroughly with me before I left. You need to know these things and they should be explaining all this to you!
Good luck
xx
Paula I also had 16mg dex a day when I had taxotere.The important thing is to take the last dose before 4 in the afternoon.The only thing I found was that it made me starving hungry for the wrong things at the wrong time!I once craved egg and chips at 3am and my lovely OH got up and made it-wow it was good!
I to have to take 16. Had my chemo today so I took on dose at 5am as couldn’t sleep and second lot at 11am. but when i was first diagnosed had to take that amount every day.
So glad to have read all your comments about headaches, coz mine is brain mets I worried coz i get a lot of headaches.
I too take 16mg a day, 8mg am and 8mg pm. I was lucky and my Onc and the nurses on the unit went through it all really thoroughly with me - I get some minor 'roid rage and am pissey with everyone around me, and get the munchies too! Was told to take at same time every day and every 12 hrs so I do 0800h and 2000h day before day of and day after Tx.
Paula - If I were you I’d kick up a stink! You have every right to have all your questions answered by the right people. Do you have a direct dial number for your chemo unit or Onc’s secretary? Give them a call and don’t take no for an answer! You certainly shouldn’t have to rely on others or your local chemist because as we’re all told so often everyone is different!! So you go girl!!
I had No 3 TAC yesterday and am feeling OK for now thank goodness, had bad nausea yesterday and last night so resorted to the kick-ass expensive anti-emetics today and they seem to have done the trick! Nearly 1/2 way through chemo, YIPPEE!
Be it a good day or a bad day, hang in there girls
xxx
I had my first Tax yesterday, and so far noooo sickness at all, which is something I was really worried about as I was so nauseaus 4 years ago when I had E-CMF, so thats at least one day down!
I used the cold cap (have had to hire it myself as my local hospital dont use it) + my sister + friend worked tirelessly for 6 hours, changing them over every 30 mins - as so many of us have found, hair loss can be really upsetting and the worse part of the treatment for many of us, so although its a bit of a logistical nightmare, for me its worth giving it a go this time & we’ll see what happens!
As for the dose of dex - im on 16mgs daily for the day before, day of and day after chemo.
Right, better go and do something constructive whilst Im having a good day …im sure it wont last!
this may not happen to you though everyone has different reactions 