Oh Sissy! Hope they get you sorted and you’re home soon!!
Getting a bit nervous of this T stuff now!
Xxx
Hope all is ok Sissy, thinking of you. Xx
I’m being admitted for the night as my liver function tests have come back as being 3 X the level they should be. I’d had bloods taken yesterday because of this clexane injection and they showed my liver level as being within normal ranges so somethings happened today, they think it’s a delayed reaction to the chemo. In the morning they’ll speak with oncologist and consultant and will check levels again. Apparently all the other levels were fine. Registrar thinks they’ll prob look at a dose reduction. I quite miss FEC! Xx
How is everyone?!
I don’t think there’s many of us feeling great at the moment either due to side effects or worrying about what we’ve got to come!!
Hope this weekend brings better things for everyone 
Xxx
Claire it would be so good if you could get that last one in early! I would have thought if your bloods were fine then it would be OK but when they moved me from a Monday to Tuesday because they were only doing half day on the 29 Feb, they wouldn’t move me back to the Monday again because they said it was less than 21 days!! I’m grateful now though because I’m full up with a cold and really worried I won’t be well enough for Tuesday now! Had it for a week and my temp is fine, just a dry cough and croaky voice - but really didn’t want to start the dreaded docetaxol feeling rubbish 
and really don’t want it delayed either!!! Urgh!
So I’ve started the water drinking early as well as hot water with lemon juice, honey and ginger and lemsips!!
Xxx
Hi ladies, popping in from December. I am on day 11 after first T and I will be honest and say I found it a lot harder than FEC. But on the other hand, I had hardly any side effects with FEC; so anything was going to be a bit of a shock! I saw my Onc on Wednesday (like Claire and Sissy, I’m with Dr M) and she said she would reduce the dose if the neuropathy in my hands and feet became a problem but that has virtually gone since then and was only noticeable for about three days.
Try not to worry about the T too much. Prepare to start feeling it from day 3 or 4. Make sure you have plenty of paracetamol and ibuprofen to hand, and maybe ask for co-codamol for back up as well. ( If your unit won’t give it to you, get some from you GP) Prepare for being tired and achy for 3 or 4 days or so, as Ellie said, like having flu symptoms. Dry mouth and throat and taste changes, and maybe you might have neuropathy, tingling like pins and needles in hands and feet, for me it lasted a few days but was annoying more than anything and didn’t stop me doing anything.
Like FEC, it is unpleasant at the very least but it is doable. Prepare for a few good days followed by a rough week but it is manageable, you can do this!
Amanda x
Ellie, glad you’re back home feeling better (although still feeling flu like is pretty rubbish!)
How are you both Debbie and Sissy?
Were any of you given antibiotics as standard for starting T? From what I can make out I’m having the higher dose of steroids starting the day before for 3 days, antibiotics and also the same immune boosting injections for 7 days. Then I’ve got cocodamol and Gaviscon to take as and when. Is this similar to everyone else? No antisickness needed?
Worried but keen to get it started on Tuesday - my cold seems to be improving (feel bad complaining as its nothing compared to being admitted to hospital like some of you guys!!!)
Xxx
Ah ok, well I still have some Odansetron antisickness tablets and the steroids also act as antisickness, plus a bottle of other tablets I didn’t need, just haven’t been given the usual Emend to take the morning of treatment. I’ll ask when I’m there (must write that down!!)
Just read in the Dec thread that Tina has found T5 not so bad SE wise so I’m holding on to that as more light shining through at the end of this tunnel!!
Xxx
Hi all, got back home yesterday evening. Had a load more bloods yesterday as well as a chest X-ray and abdo ultrasound, got quite nervous about the u/s as always worried they’d find something unexpected! My bloods and neuts were all good considering I’d had T on Monday, some of the liver results were normal, but the ALTS were raised still hit had gone down a bit from the day before. Apparently my liver was a bit ‘rough’ looking but they think that’s from the T as the liver cells are constantly renewing themselves. CDU are going to let oncologist know but they think ill need a dose reduction for the next cycle. There was another lady in at the same time as me on same stage after first T, she’d got an infection as neuts low so was on anti biotics.
I am finding T harder then FEC, I think it’s the delayed SE’s. By now on FEC id be through the worst. I don’t miss the queazy feeling, but I’m not enjoying the lack of energy, the bone aches and the sore fingers. My finger nails hurt to touch! Sorry to be a bit negative to those due to start T xx
Regarding anti sickness, I was given some as a uv on the day and then didn’t need to take any after. I’ve done left over at home from FEC just in case. Also, I’m still so hungry all the time! Xx
Ellie and Sissy I hope you are doing ok? Thinking of you both.
I am day 9 today and eventually think I am coming out of the big fog of cycle 4!!! I’ve found this week my toughest yet and I was bad on FEC!!! Yesterday I also developed thrush in my mouth, which I’m on tablets for and a mystery rash has developed on my hands!!!
For me the hardest part has been the constipation, I didn’t take anything for constipation before starting T as I’d read a lot got diarrhoea, so I didn’t want to risk it. Next time I’m going to have to start a couple of days before. I took my last injection yesterday for immune system, I think they cause alot of side effects for me, I’ve been having back and knee pain like electric shocks so hopefully they will disappear now my injections are over.
There is a lot of talk about reduced dose on 5th and 6th T, I’m seeing my oncologist on Thursday so we’ll see if she suggests it.
Fiona, how you doing, did you have no4 yesterday?
Kim and Claire are you both having no 4 this week? I hope you aren’t getting too worried about T, just be prepared, you guys might cope well on it, we are all different, and we are getting closer to ending this gruesome ordeal. Kim, I would be cautious about taking ondansetron if you suffer from constipation as they cause constipation. I had some anti sickness through my drip before they gave me T, just as a caution. My nails seem to be doing ok, I need to reapply my dark nail varnish.
Keep strong guys. We can do this!!! ???
Debbie x
Good luck tomorrow Claire! Hope you’re managing with the extra steroid dose today and getting that water down you. I’ll be thinking of you as I start my preparation for Tuesday! I painted my finger nails for the first time in years today - a very dark blue (Sally Hansen 7in1) My lack of experience showed as the average 7 year old could have done a better job!! I had to do a clean up job around them with a cotton bud and remover!!
How is everyone else doing? Really hope your side effects are easing now and you’ve all managed to have a nice weekend
Xxx
Hello all, feeling a little happier in myself today, more bone aches have begun to kick in, but they feel more like the ones I get with the gcsf injections, two more of them to go unfortunately. I don’t feel as emotional as yesterday, which is good, and have managed to clean the bathroom, do some washing and give the kitchen a good wipe round, which has helped take my mind off things. Pain killer wise, I haven’t really been taking anything as I don’t want codeine because of the constipation issues and I’m worried about taking too many paracetamols because of the high liver count tests. The aches and pains haven’t been nice, but I’ve also been able to grit my teeth and bare them. It feels like the aches and heavy feeling you get with flu I took a couple of paracetamols today and one last night. My mouth still feels odd and my throat is a little sore when I wake up, my taste has come back a bit more as well. I think the main thing with T is to do as little as possible between day 3 and 7!
Good luck for tomorrow Claire, i prefered the way that the T is administered as I used to hate seeing the syringes (especially the red one) waiting for be pushed through! I hope you haven’t taken your steroids too late today xx
Well done Claire, good to get the first T under your belt! Make the most of the next few days!
Im on day 14 of my first T and feeling pretty well back to normal now.
Amanda x
Glad today went okay Claire, it’s always a worry with a new drug in case there’s a reaction! It’s interesting what oncologist has said about it being tougher as FEC still in system, I hadn’t even thought of that and it mixing with the T.
Feeling better again, the main aches I have are the vibrating ones from the gcsf injections. Also, still having trouble sleeping at a normal time. Was still awake at 4am! Had to go to hospital this morning for more bloods to check the clexane is working and to have picc dressing changed. No more hospital visits now until a week Thursday (fingers crossed) xx
Glad it all went well today Claire. You sum it up when you say ‘bloods good to go’ and then ‘no adverse reactions’ - added to the day before worries about how we’ll react to the double steroid dose!! And that’s just for starters as we wait to see what side effects are going to kick in!!
Ellie, I really hope the improvement starts to speed up for you very soon!!
Sissy, so glad you’re feeling happier, hope the pains start to ease soon too.
Amanda, it’s good to hear you’re pretty much back to normal - enjoy your good days
I’m feeling more confident I’ll pass the blood test today. My cold has improved and I’m not coughing much - these things do tend to just hang around, I could have it for another week! I’m feeling well and have blitzed the house, washed and ironed, and cooked shepherds pie bases and Bolegnese sauces for the freezer. Hopefully this will have tired me enough to get a good night’s sleep. Although I have drank nearly 3L of water - that might keep me awake!
So I ring the chemo unit at 9am to check the bloods are OK, and if so it will all start at 1:30!
I’m hoping the rest of you are heading for or are in your good week?
Take care, Kim xxx
Fiona - I love The Good Wife! We’ve been watching the last series and I hate having to wait a week for the next episode!
That’s fantastic news about your tumour shrinking so much, and yes, hopefully the T will zap it even more, especially as it seems it’s so harsh on our bodies!!
It’s great to hear some good news that what we’re going through is working and puts the focus on that xxx
I had a period on the day of my first chemo back in middle of January, then around 4 - 5 weeks later I had another, but it only lasted a couple of days, and since then there’s been nothing. Mines also 8/8 and I’m under the impression that they don’t want me to have periods and that they’ll be suppressed using medication. They have said that having my ovaries removed is an option, but that they won’t really want to do this until I’m at least 40 yrs old. My sister has her periods suppressed as she suffers from endometriosis and fibroids, so she has monthly injections of zoladex (?) however she does at times still get a period. If I come back positive for faulty gene I’m going to be pushing for a mx of remaining breast and removal of ovaries.
Good luck for later today Kim xx
Bloods OK - one hurdle successfully jumped! In at 1:30 for next hurdle. Drank 3L of water yesterday, started early on today’s quota!
I’m ER+ too but no idea on the number. My periods stopped nearly 2 years ago when I was 50, any menopausal symptoms were very minor - thought I’d got away with it lightly! So not sure where my oestrogen was coming from, I guess I’ll be asking what it’s all about when they put me on the hormone treatment. I’m so much more knowledgeable than I was but there’s so much more I want to ask now that we all discuss our various diagnosis and treatments!
Are you going into school today Claire? Hope it goes well. Child protection is always harrowing but awareness is so important.
Have a good day everyone
Xxx
I’ve been involved in those situations as my role as family support worker, even went to a social services meeting during my summer holiday! I don’t think it’s easy not to be emotionally involved if you care about children and want to support their families too if possible.
Same here re. wanting to do everything to help prevent this ever happening to me again! Looking at my usual products to check for parabens and gave told a friend I’m going to start going back to yoga when I’m fit (if I tell someone I’m doing something then I’m more likely to do it!) I going to look seriously at my alcohol I take as I’ve read that alcohol can to something to the oestrogen in your body, but I also want to enjoy life too!! I had started to really think about my diet last year and managed to really reduce my sugar intake, which involved cutting back on alcohol. I’ll be updating you all next year ha ha!!
Nearly a litre of water drunk so far this morning and peeled and chopped potatoes for the shepherds pie for tea (base taken out of freezer). And now I think it’s time for pre-chemo bacon sandwich!!
Xxx