Hi All,
Sorry you are having a hard time Liz, it is a Bu**** isn’t it? I had my picc line out after last tax two weeks ago; really easy procedure and you can’t tell at all that there was a hole in my arm. So nice to have it back to normal. Claire and Hatty- how are you doing? I hope SEs are kept at bay.
Up til now I have managed to lookgoodfeelbetter but my eyes are very weepy and sore that I look like I have been crying all the time. I am sure this will get better soon but at the moment I look pretty awful and it is hard to carry on as normal when one looks so c***. Didn’t use peas and my nail beds are very sore. I’ve been taking vitamin B as I had read somewhere that this is good for peripheral neuropathy. It hasn’t abated yet but all crossed. I am now using diprobase on feet. No improvemnet so far but it has only been three days.
Last appointment with Onc on Weds til after surgery and should get a date for mx and clearance tomorrow.
Good luck to those still taxing. You can do this!
Lots of love,
Sue
Can I just say that if you take your last dose of steroids no later than 4pm[earlier if poss] then you get all the benefits without the sleep deprivation.
Good Luck
Valx
Hi all, Day11 post TAX 2 and feel more human, but get tired quickly and nothing tastes good.
Val, I think steroids affect us all differently. I have mine at 7am and 1pm - couldn’t get them any earlier really. I then get no sleep at all - three hours if I have a sleeping tablet.
Sue - I’ve been taking B vitamins too. Also eyebrows and lashes are getting sparse. I’ve booked a LGFB session on 15th, two days before my last TAX.
Hope everyone’s SEs are improving and good luck to those being taxed this week.
Stella xx
I take mine at 6.00am and before 200pm sometimes as early as 12.00pm and i sleep like a log for 3 days unless im stressing.
Hi All,
Should have had tax(2nd) last thursday but told that my liver function wasn’t right, quite devastated as sat there for 3 hrs for them to tell me that, I had the bloods done on the tuesday but they wanted more and it still wasnt right, hoping to have tax in the morning, fingers crossed,-has anybody else had their chemo delayed?
At the moment I feel a bit of a failure, I was all ready for everything that tax throws at you and nothing!!! (suppose I should be pleased)
Hopefully I will also get my indwelling pleural catheter out in a week or so.
Trying to be positive, trying to be positive, trying …
Jill.x
Hello Jilli,
You are not a failure.
I’ve had my chemo delayed three times. Between FEC2 and 3, it was delayed one week as my wbc was too low. I’ve had injections after every chemo since to boost wbc production. Between FEC 3 and TAX 1 I was admitted to hospital feeling ill and with stomach pains. I stayed 11 nights on intravenous antibiotics followed by 10 day at home on oral abs. Scans showed large inflamed appendix which went right down with abs so surgeon told onc, no surgery needed. To my mind, it took far too long to get me back on chemo - five week delay (ie 8weeks altogether. Then between TAX 1 and 2, appendix flared up again, onc very apologetic, perforated appendix removed, only one week delay this time.
I understand how upsetting it is to be delayed, but one week won’t make much difference (not sure about 5 though!)It’s better for you to make sure you are healthy enough to continue.
I’ve decided not to worry about it. It is at it is and nothing can change that. It would have been better not to have BC, not to be grade 3 etc
Hope your liver function is good enough for chemo to go ahead tomorrow - you won’t be able to tell us until Thursday though.
Good luck and don’t worry. Stella xx
Hi ladies. Hope you’ve all had a pleasant weekend. I’ve got my good week now at last! Hoping for some ‘normality’ until Thurs when it’s back to hospital to see chemo nurse and bloods …
I’ve had a very light period since my first tax 14 days ago - anyone else ever had similar? I know your periods can stop or be heavier (it wouldn’t be a definite one or other would it!) but not sure this is ‘normal’. ???
Rachel.
Rachel - my oncologist told me that our periods could do just about anything - from ceasing to exist to becoming more frequent and lengthier, lighter or heavier… it is all down to hormone disruption. Not much comfort there, I’m afraid. Mine haven’t stopped, and I’ve had a couple of days of spotting between times, which I never have before - so I guess it’s treat it like it was when they all first began - no definite cycle, no definite length…aaaaagh! Are you doing the tamoxifen route after chemo? I am… and hoping that that finally puts paid to them once and for all! I’m getting the odd hot flush - I’m b*ggered if I’m going to be chemopausal and still have periods!
Hi Jill I have not been able to get started yet on TAC because of problems with liver function blood tests which as you can imagine had had me googling like mad to see what could possibly be wrong with my liver! And no I am not a heavy drinker … 4 - 5 units a week at maximum! Onc explained that if the liver is not performing properly it won’t be able to cope with Tax and the SEs would be much worse so on balance a delay is probably a good thing though I think we would all like to get this done asap.
hope all is well for you with the latest bloods and I hope to get my first session done tomorrow too.
Sue
Thanks Triphazard - it just seems my body is doing some weird things - I also have spots, which I’ve never had before and look like I’ve got sunburn on my cheeks, oh and I’ve got a sty in my eye. Just not used to this period as usually I’m regular as clockwork - everything seems to make me worry! I will be on tamoxifen also - can’t wait to add hot flushes to my list of woes.
Projectwoman - I’ve also had problems with my liver, it hasn’t delayed my chemo, I’ve just had to have reduced quantity of FEC. I have high bilirubin levels. I think the liver has to work extremely hard when having chemo and this has sent my bilirubin sky high. Just hang in there, you don’t want any damage to your liver! Hope you get your first session out of way tomorrow.
Rachelx
Tax 2 tomorrow for me, so my se’s should have kicked in by the time the site is back up. I’ve been having regular periods although lighter through 4 epi and 1 tax, waiting for one any time now, but I also am getting the joys of hot flushes too! After Tax 1 the flushes started before I even finished on the drip, they kept me in for a couple of hours until they were sure it wasn’t an allergic reaction. I get them for about the first week to 10 days post chemo then they stop, but each time they are getting worse.
Got my ice blocks ready and my nails re-done, so all ready. Hope everyone is coping ok, and look forward to the new website.
best wishes
Louise
Good luck to everyone having Tax this week - thinking of you with your SEs. This is my better week pre dose 4 next week so am making the most of the sunshine and some returning energy and enjoying the taste of food again. Yes, I keep getting hot flushes so it’s reassuring to know others are too (keep throwing off duvet at night for a while) and yesterday I had a Reiki therapy session and my therapist nearly hit the roof with the heat energy coming off my head!! That probably explains why my senses are so acute - sound and smells seems very strong at the moment - and why I get headaches in week 3. Does anyone have any other explanation or experience…
Will post once system is working again
Take care
Fran
Hello all - it looks like the Boards are up and running again. <<Hooray>>
Well, here I am on Day 19 of my first cycle and seem to have come through relatively unscathed apart from a few annoying side effects which all seem to have been very short lived, thank goodness. The worst thing was last week, being rushed to A&E with pains in my side. I was kept in for nearly 12 hours only to be diagnosed with possible inflamed diverticulitis - something I’ve never suffered with before and hope never to again.
I’ve managed to work as well (only 3 morning a week) and rest in the afternoons.
My hair decided to jump ship on Wednesday so I’ve had a very short haircut and it is now coming out rapidly. I think it will be gone by the end of the weekend so it’s wig at the ready.
Cycle 2 starts 8.30 on Monday. Fingers crossed it goes well.
I hope everyone is okay and not suffering too much.
Flapjack xxx
Hi everyone,
I had my first round of Docetaxel yesterday and boy was that not fun. Part way through I went into anaphylactic shock and had to have emergency treatment. It was very frightening but after 3 hours of observation they finally let me go home. I had to have the rest of the treatment but it was pumped through very slowly and I didn’t have any further problems. It will have to be given slowly for the next 3 to make sure that I do have any more scares - I was so glad to get home!
Now I’m just waiting for all the usual suspects as far as SE’s are concerned to kick in. I have really bad mucositis all the way through now and I’m just off to talk to my gp about getting some help with that as it’s really starting to wear me down. Lots of emotional, teary days at the moment!
I’ve been thinking of you whilst the boards have been down - I hope everyone’s going okay!
xx
Just some comments on SE’s generally. . .
I’ve got the ‘sunburn’ look on my cheeks. The onc told me that should wear off once I finish the steroids.
My periods stopped after my 3rd AC but bearing in mind that I haven’t started the menopause yet (I’m 48) the onc thinks there is a small possibility that they may restart. If they do chances are that they’ll suggest I go down the ovarian ablation route as I am ER+.
Hot flushes - my GP put me on a low dose of Citalapram (10mg) to help me deal with depression after diagnosis and an added benefit has been that it’s really helped with the hot flushes, to the extent that I hardly get them at all at the moment. If forget to take it at bedtime the flushes kick back in within a couple of hours.
Hi nymeria I had my first dose of Tax on 7th March and also had a severe allergic reaction after just 37ml, and like you had to have emergency treatment and observation for a few hours. Very scary. My husband was sent for to take me home as they were worried about my ability to drive too! My oncologist decided to stop the treatment and is not going to try again with Docetaxol (Taxotere) - he is going to try Taxol instead but not for a few cycles, so I am switching treatments from TAC to FEC temporarily(I think - to be confirmed when I go for round two on 28th). Good to know that there is something that can done re hot flushes as these seemed to have started immediately and with a vengeance!
Good to see we are back online! Have been missing contact since this week has been traumatic - seems my CT scans show that the Taxotere is not holding the liver tumour growth so I’m coming off it… all those side effects for the last three doses to no avail and I now move onto trying Capecitabine (Xeloda) in a few weeks. So Tax SEs are subsiding - energy is returning and mouth is fine now; still have hot flushes at night so hope they go soon too. So I’ve now don’t need to nailpolish nails with a dark colour - but might do this as I like them and it covers up my dried out finger nails. Frozen peas will now be thrown away after 3 outings - they really have helped; my right hand fingers feel normal (they had the pes) and the left are very sensitive - so my advice is, “do use the peas” if you don’t have access to icy mittens and slippers at your hospital and don’t worry about feeling “silly” sitting with them.
So thanks to you all for your advice - no doubt we will link on other threads too - this advice has been invaluable and great to share emotions with you too - good luck
Fran
Hi Fran,
Had my last TAx yesterday - used the peas on feet and hands all three times and have had no neuropathy problems. Interesting to see that you actually did a controlled experiment. Just enjoying the couple of days before the SEs kick in.
Sorry to hear TAX not working for the liver tumour - all those SEs to no avail!. I did read your post about cyberknife etc. I’m sorry I don’t have any useful information but wish you luck in your quest to find out more and whether or not it can help you. Your doctor didn’t sound much use. If they can give you a good medical reason why these treatments can’t help that is acceptable, but just being negative is no help at all.
Best wishes. Stella xx
Thanks so much for your thoughts Stella - my “controlled experiment” was incidental as I just could not cope with peas and canulla and always had cannulla in left had having had 6 doses of FEC in right and that needed a rest !! But did use peas on toes and they are fine too. Glad you’ve made it through the TAX and good luck with next few days and SEs.
best wishes
Fran
missed you all loads - looking forward to catching up
claire x