Sorry to hear your news post T. My bus seemed to move off on Saturday (day 5) with only 2 days of being laid up - everyone is different. Even if it is temporary & I know there may be a build up effect for next treatments, lovely to be able to do a few things, even if it is very slowly & breathlessly!
However it still seems a full tme job managing the sore mouth, sore bum from diarrhoea (sorry too much info!), eating, drinks tasting awful etc.
Anyone found anything to drink which tastes better? I'm not drinking nearly enough.
Sending hugs - we will all come out of this, even if sometimes it doesn't feel like it! x
No apology necessary, understand that short replies mean people are either not feeling too good or busy.
Sorry to hear you're suffering after fourth chemo although glad you're back is better and that you managed to enjoy your grandaughter's birthday.
I had third TC yesterday, so far nothing major to report (waiting in trepidation, who knows what each different cycle will bring), hot, red steriod face and chest but more worringly night before chemo my feet became really red, dry skin and tingling, burning sensation. Showed them to the nurses giving me my chemo who gave me a small tube of Diprobase and told me to keep an eye on it . Also tingling, numb sensation in fingertips. If it doesn't improve over the weekend I will phone helpline on on Monday.
Hope you feel better over the weekend.
P.S. Forgot my take my miso soup before chemo and was also supposed to try heat pad at hospital but there were none left! Anyway, got cannula in on second attempt.
Sorry for the tardy reply. My fourth FEC has really poleaxed me. I can't quite believe the difference the culmative fatigue has made this time. I had a rough start with my back and then veins but initially thought all was going well. But now, I'm back to where I'd normally be on about day 4 or 5 and I'm actually day 10 😞
However, it's been a small price to pay as my granddaughter's birthday was lovely. I managed two hours on the sofa in the centre of the action before I had to retire to bed. But it was so worth it.
My back is much better. Off the diazepam and painkillers and managing to do the exercises occasionally! Thank you for asking.
Hope you manage ok with this next dose.
Hi Popkit and Terriannes,
So sorry you are going through this too! I am one if the May starters and have had two Taxotere (docetaxol) and Herceptin. The first was the full dose, the second 90%. Both times my back, leg and knee pain started being really bad from day 3 for about a week. I am now on day 12 of the second one and still have leg pain. Having said that my consultant says my body is particularly sensitive to the chemo so hopefully it won't cause you pain for as long as that. I struggled on FEC too.
My specialist nurse said most people have the bad pains from days 3 to 7. In consultation with her I have tried different combinations of pain relief but have found oromorph and paracetemol (always take your temperature first) to be most effective. I was told to avoid ibuprofen and diclofenic.
Popkit, I haven't lost my nails or developed cracked skin. Not everyone does. I have Opi nail strengthener on my nails which I top up once a week so maybe that's helping. My head hair has started growing but I have lost my eyelashes and eyebrows!
As as for the constant hot flushes mine seem to have settled a bit during the last week so maybe yours will too.
Take care xx
Well after a positive start on the T today has been a bit of a shocker. Three days in and I have now been 'hit by the bus'. It's mainly my legs and back that are aching but big time. My knees feel about 100 years old. I've been dosing myself with paracetamol and diclofenac this afternoon and hoping I won't need anything stronger.
Is there anyone ahead of us on T that can remind me how long this particular side effect lasts for?
I too am not looking forward to nail loss or cracked skin (a symptom a friend of mine had with T).
My chemo mouth seems to be the same as it was with FEC and my appetite is much the same too.
Well done for perservering with the cold cap and glad the miso did the trick for your veins.
I just wish that the hot flushes ,which are almost constant would stop even for a bit, so I could get a decent rest.
Night all - xx
Just popping in with a quick update since my first T. Fatigue is definitely a lot worse for me than FEC, barely getting off the sofa and have crawled back to bed a couple of times as I need the space to 'thrash about' and get comfy. Have also lost my appetite a bit, though think this might just be down to tiredness.
On the plus side, the miso and waterlogging did the trick and they found a vein first time! They almost wouldn't let me cold cap as so much hair had gone on top, but they put a surgical hat thing on me and it actually was less painful than last time, so hopefully I can cope with another 2. Just out of bloody-mindedness if nothing else!
I also think the chemo-mouth might be a bit better than it was with FEC.
Just waiting to see what aches and pains kick in - like someone else said, it's like waiting to be hit by a bus! Also not looking forward to the horrors of nail loss, hoping I can get away without that one!
Right, crawling back to my hovel now!
just popped over from the May thread, having found out that you, like Belle and myself are on FEC all the way through. It is a tough one!
Initially I did not want a PICC either, so completely understand where you are coming from. However post FEC number 4 there was no choice. The vein had completely burnt out. Administration of the chemo through 4th treatment was so very painful and took over 3 hours instead of the usual 90 minutes.
So a PICC was put in for the last two treatments - and......I am so very glad I had to have it in. No more struggles re bloods, chemo went like a dream and I can very carefully start working on trying to support the healing of the vein. No more fear of it getting too painful, get hot or start to swell. After all - we need them when it is all done! Also having to attend A&E for some challenges - administration of relevant drugs, contrast fluids, etc - no problems at all. That visit would have been intolerable, if I would not have had the PICC.
If I may - I would suggest to have it put in, as soon as you can and not wait to find out whether you have to have it, because your veins cannot cope anymore. Unfortunately PICC line insertion becomes more challenging the worse our veins get. Be kind to yourself and your veins. Much to my surprise it is not causing any issues to my normal working lifestyle. I wish I had it put in from the outset, to be honest. My fault, I thought I might manage without...
Finished FEC over 3 weeks ago and had one long hardened vein from wrist to elbow, and in the past 2 days noticed another one drifting off to the left. Emailed the nurse who is doing her PhD in this subject asking was it normal to get further vein damage, as expected that to decrease as time went on and not progress.
This is her answer - Re the hardening of the vein I wouldn’t be too concerned about it seeming worse –sometimes that can happen that it gets a little worse before it gets better as long as there is no signs of infection with redness, heat or swelling I would continue with the hirudoid and it will improve in time but this may take weeks or evens months.
Hope that helps
This nurse "knows best", there is honestly no point in even trying to talk to her about it although thanks for the link.She's just "one of those people" i.e. a bit of an a******e . Lol! There's always one! After tomorrow I've only got one to go. I see your point about sometimes having to use surgery arm but in my case they can install a picc, even if it's just for one treatment. I'll make a lot of noise, I'm good at that. Lol! Apparently I move to a different Onc for radiotherapy but she proudly informed me that she is also involved in the radiotherapy side of things,Great, just my luck. My counsellor at the Unit is also a radiotherapy nurse so she knows all about rads so I can check things with her.
How are you doing Belle? Is your back any better?
Have a lovely day with your Grandaughter tomorrow.
Tinky, Bagpus & Popkit - Hope you are all doing ok after your first "T".
Rosieflower - Oh no! What a shame after taking your steriods that your treatment has been postponed. I get my bloods on a Wednesday, chemo on a Friday. My nuets went down to 0.2 last week, I half expected a phone call yesterday or today to tell me my chemo had been postponed, I was secretly hoping it would be just to get back to full strength. They did say that sometimes they do another blood test on the Friday morning if the one on Wednesday wasn't right. I will be really p****d off if I turn up tomorrow and my chemo has been cancelled and nobody told me as I've had two doses of dexamethasone now. Nobody has mentioned liver enyzmes to me, I only see WBC, Haemoglobin and Platets and overal nuets in my wee red chemo book. Must ask the lovely nurses at the day unit tomorrow.
I don't get to see my Onc before treatments, pity as he is lovely.My chemo unit is extremely busy and you only get to see Onc before treatment and then if you have any problems. I get to see the Head chemo nurse who is "not so lovely" and started banging on again yesterday about using my surgery arm for chemo. Aaargh! She said "there is no evidence that using your surgery arm causes lymphodema, we don't know what cause it!" I told her I had discussed it with my Breast Surgeon and she said no and that I had also discussed it with Onc who said that was fine with him, they wouldn't make me do anything I didn't want to, so that shut her up,well about that subject anyway. She still managed to ramble on about other things which didn't make me happy. She doesn't half like the sound of her own voice, she is a classic example of "give some people a bit of authority and it goes straight to their head".
Hope everyone else is doing ok.
Aaargh! I dropped my laptop the other day and now my space bar, numbers 2, and 0 aren't working properly. This took about 20 mins to write.
Off to change the bed, the last of my chores for this week and hopefully get some sleep before tomorrow.
Glad to see so far so good on the Tax front Popkit. Hope it continues that way for you and for everyone.
Is anyone else staying on FEC all the way?
I hope you've had a good night, and glad to see so far so good for you.
Its the waiting for something to kick in that's the worse, and when is this bus gonna come that's gonna hit us for 6!!
Taken my morning Dex and clarityn. Have my miso soup at the ready for tonight - oh it's all go!!
I hope you have a good day, and thanks for letting me know how its gone so far.
I had my first T (Docetaxel) yesterday and despite having increased steroids with it, so far I am feeling a lot better than I did after the FEC. Less dizzy and less nausea. I wonder if it is the miso which has helped! I wasn't given any antihistimine with my T which I know some people are, but I took the advice from an earlier post (sorry I can't remember who posted it) about Claritin (Loratidine) and took one yesterday and one today so that may be helping too.
Had quite a nice day all in all really topped off by someone estimating my age at 16 years younger that I really am (she guessed 35 and I'm 51 in a couple of weeks!) She obviously needs a trip to Specsavers but it did make me feel good. She was a complete stranger who approached me in shop after noticing my picc line dressing and chemo hair scarf. What a lovely young woman she was. She told me she'd had breast cancer herself last year and gave me loads of positive advice. Also told me about a blog she had written, I will check it out and if it's any good will pop a link to it on here.
Good luck with your first T Rosie. I hope you have as 'good' an experience as mine in that it wasn't as bad as I had been expecting after FEC.
Night all! xx
Hope you have a good night.
I'm having my first T Friday, and not looking forward to it. Though FEC has caused hardening of veins down my inner arm, almost better the devil you know, than the devil you don't sometimes!
Wishing you well
My onc had warned me that the changes to the tumour after FEC would be very small, because the T and herceptin are the 'big guns', so don't worry about that. He was very surprised that mine had responded as well as they had, he hadn't expected them to. I think it's the combined effect of the drugs that makes the big difference.
Had first T today and feeling a bit knackered after 2 long days at the hospital, but glad to be into the 'home straight'.
I had the injections with FEC as well as T, I really hate them. Particualrly as I was advised to have them at the end of the day so the majority of the aches they cause can happen overnight. Really not a nice thing to look forward to at the end of an already crappy day! I have some emla cream in stock so I might be a wimp and use that so at least I don't have to feel them!
Hope yesterday went OK for you. I am the same as you - chemo pre-op & happy to be 4 done now. Had first T & Herceptin both on Monday. Unfortunately my ultrasound didn't show any difference in the tumour, which is a bummer after x3 FEC! However, Oncologist tells me the best treatment for me is the Herceptin. Had vein troubles for the first time on Monday & they had to start again in a different place (which there are not many options for now) so will be going back to all the great tips on here to get them in best condition for next time.
Now have the injections to boost white cells, which can cause joint pain as well as the chemo regime. However plenty of pain relief explained & I have a back up (Gabapentin) if needed.
Yes, low mood was worse after no.3 & I felt like leaving work, imagined people were excluding me etc, which is so not me - definitely the drugs!
Am booked for Look Good Feel Better next week - thanks Belle for spurring me on to book it & my centre still had spaces for August, so looking forward to that.
That's useful to know - the more I can reassure myself that it's the 'drugs' and not 'me' causing it, the better!
I also had a look at my steriods info this morning (I'm taking the pre-T ones) and noticed that drepressive feelings are a side effect of them.
It's like everything is joining forces to make us less able to mentally cope with the physical side effects!
Currently getting to the end of hour 4 of my 6 hour wait in the chemo unit to make sure I don't get a reaction to my first herceptin jab. Very, very, very thankful that the hospital wifii is working!!!
Just a quick one from me, as I'm about to dash off to the Fringe with my 5-yr old (I wonder who'll be most shattered later today, haha).
My oncologist tokd me the mood changes and depression is due to the chemo effects on your overies, and therefore all the hormones changing in your body.... Makes sense.. (Horrible idea though!).
Good luck to everybody...
Completely agree about the hideous depression post chemo. It's by far my worse side effect so far, though I have been really lucky not to have too many with FEC. Remains to be seen what happens with T! I know in my head that it's just the drugs making me feel low and that it'll only be really bad for a few days, but it's really difficult to 'feel' what's in your head.
On the half way point thing, I might be really unpopular to say this, but I've been really happy to have reached it. I think perhaps the difference is that my chemo is pre-op, so I've actually been able to see the difference the drugs are making to my tumours, so that's been a real boost. I know most of you are post-op (sounds a bit like I'm talking about gender reassignment!! ) and not able to see the benefit of these drugs, please believe me that they are amazing things and truly kick cancer-ass!
Found my miso in Waitrose too. Really not looking forward to it, particularly double dose. But as they couldn't even do my blood test from my 'chemo-arm' today, I think I'll have to give it a go!
On the muscle cramp subject, someone told me that you can suffer from magnesium deficiency from drinking a lot of water and to eat bananas as they are high in it. I haven't checked this with any medical source though, so it may be rubbish. Anyway, I wondered whether the same might be true of potassium, a lack of which can cause cramps. It's just an idea, but as bananas are also a good source of potassium, it might be worth trying to have one a day to see if it helps. It can't do any harm anyway.
Belle - I hope your back is feeling better soon, what a nightmare to have that on top of all the chemo-crap. Amazing daughter-in-law though, tell her from me that she's a star!
Popkit50 - I'm sorry you've had such a rough time of it and hope you're feeling a bit better (nothing like a cream tea to help boost the morale!). I'll keep my fingers crossed that you're OK in time for your T.
For info: The Itsu miso paste is instant in that all you have to do is add hot water but it is a paste and very similar to any tubs of refrigerated miso paste I have bought in the past from Asian food stores. I really like the Itsu one and buy it regularly as it's good for staving off hunger when I'm working; I'm a florist and haven't always got the time to stop for food. I have bought the Clearspring instant miso sachets before and found them disgusting, but I've never tried the paste they sell.
Also for anyone considering a PICC line if their veins are troublesome, I can't pretend it wasn't painful to get it inserted but it was the best decision I've made so far on this horrid chemo journey. Now the highlight of my week is the trip to the clinic to get the line flushed and dressed! All of the IV nurses at the clinic that I've met so far have been really lovely and always willing to have a little chat about how things are going and offer advice.
Only two days to go now until the first of my T but I am technically halfway through chemo and like Belle feel depressed rather than happy about this. I've got the same to go through all over again, neither here nor there feeling. Really hoping the side effects from T aren't as bad as they have been from FEC and I seem to have got off pretty lightly compared to some of you on here apart from the two emergency admissions to hospital.
Hugs to everyone xx
Blimey, Hazel, what have I started?!
Right, the original site I found this on (http://www.hystersisters.com/vb2/showthread.php?t=357436) suggests this:
'Here's what I found worked. The night before chemo, drink a ton of water. If you get up to pee in the middle of the night, drink more water.
Also, have a big bowl or double-size mug bowl of strong miso soup. The high salt content will help hold the water in your body. You can buy miso paste (usually refrigerated, but some types are in packets on a shelf -- don't buy "instant" or things in a box, just get the paste) and add it to hot water, and that's all you need to do. It tastes good as well.
The morning of chemo, have some more water and more miso soup. The more water you can get in you and the more salt, the better you'll find that your veins hold up. When I started doing this (after that six-needle-sticks episode, which of course made me cry), I never had another problem."
However, I bought the Clearspring Organice Miso Paste from Waitrose £2.35 for four sachets (only place I could find it!) and only drank one sachet the night before chemo and on the morning as I hadn't read the advice about doubling up. I may double up for future attempts as my veins are shocking at the moment: sore, swollen and painful. I don't know why the powder is sniffed at in the original post and so long as it's got salt in it I would think that it would work as well.
Let us know how you get on!
Thanks for cramp info Terriannes90.
Been suffering horrendous early morning cramp especially since FEC 2 , and didn't know it was a side effect - so thanks.
So glad you joined this thread and find it helpful and supportive.
As your veins are som important, not only for the chemo - but also for the future - you may wish to discuss having a PICC line installed to make things easier for you. I had mind put in for FEC treatment 5 and 6, as my veins could not take the chemo any more.
You might also find this link to another thread, Belle started, very helpful - https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...
Hope they improve!
Hi Belle and Popkit50
Just been to Waitrose and bought the Itsu Miso soup you recommended Popkit50 - still looking at it with baitted breath!! lol
Its on amazon for £11 but bought same in Waitrose for £2 - just thought i'd let others know. £2 doesn't seem so bad if its vile and you can't drink, but £11 does!!
Hope everyone has a good weekend