Hiya all
Any tips, support re taxorate - had 3 fec and coped okay ish but the number 3 was a lot more of a struggle. Went for my bloods on day ten and were okay though - to top my needle phobia no-one told me I would need a jab in tummy day after tax, maybe not as sick was told but immune system a lot worse and joint pain worse (my poor back already struggling), and have to have anti-biotics and paracetomal from day 5. Was told id be wiped out soon - worried I wont be able to make work at all as its my sense of normality and hope I can still socialise a bit as I get sooooo down when tired and sick.
Got black nail polish to hand already - hope it helps with nails
xxx
Lisa,
I’ve done 4xFEC and have had 1 tax, next one on Thursday. I also have a needle phobia. I get a Neulasta jab day after chemo, and the needle is so fine I don’t feel it going in, and if the drug is injected slowly I don’t even feel that, if it’s quicker it nips a bit. Don’t look and you REALLY will be fine with the jab.
I bounced through FEC and worked between doses. However, I was very sore (like bad flu) for a full week after the tax. I could barely manage the stairs. There are stronger painkillers available if you suffer from this - my onc has increased the time I’m on steroids and recommended I take my tramadol the day BEFORE the next tax - and if you’re on painkillers, PLEASE take lactulose or similar or the constipation will feel like you’re giving birth! I went to work weeks 2 & 3, but have booked out for next week too (I only do Mons and Weds fortunately).
All the best to you with your tax, hope this helps, be kind to yourself
xxx
thanks for info! love tramadol so might ask for some if needed - defo at the movicol on hand if constipation hits in as suffered big stlye after op and not going through that again. Thanks for the advice its helps, here to the finish line
xxx
Hi lisaf,
As Sue knows, I did the Tax first and then swapped onto Fec with the 2nd of 3 tomorrow, hopefully. In retrospect I’m glad I got the Tax out of the way when I was still feeling like ‘ME’ dealing with a tough challenge, it didn’t seem so hard. A bit of joint pain, a week or so of impressive fatigue, a truly horrid flannelly mouth, some small things & infection the first round - with the belly jab the second two. Don’t be nervous about that - as Sue says, you can barely feel it & in fact I did it myself because I couldn’t be bothered going in to a clinic. Keep drinking - at least a litre and a half during IV made a massive difference to me because I just drank a small bottle of water the first time & symptoms came fast and strong - keep moisturising, esp. feet, face & hands. I used dark nailpolish & kept my nails, the rubbery cold cap & kept enough of my hair to more or less ‘pass’ as normal.
I’ve actually found this first round of FEC tougher - only very slight occasional nausea, but more depression & the only time my bones & muscles don’t ache is when I’m swimming. I do the mornings OK and then collapse in a wobbly heap mid-afternoon until my regulation 4-5 hours of broken sleep, starting sometime after midnight. I suppose my body is tired of the whole business - I know I am.
Just had 2nd Tax - and got the news that my red blood cell count is getting rather low. Fortunately I’m asymptomatic, otherwise it would be a blood transfusion…those words to a needle phobic really make the toes curl!! Thank heavens for the hickman line!
Snap Sue, as usual. Just had 2nd FEC - I quite enjoy the hospital part because I like meeting other women in the same position, they are always entertaining. Don’t much like what happens next, but again no nausea so far. Sorry about your low blood cell count - can that be helped at all with diet? More iron-rich food or something? Glad you are avoiding a blood transfusion - sounds worse than the red part of FEC. My red blood cells remain normal, neuts scraped in at 1.2, but bilirubin (the liver thingy) going up a little. I knew that wine was a mistake during the last cycle haha. I’ll go dry again and see what happens. Only one more to go.
I had a different onc nurse today - my usual is on holiday - and she said that most of the symptoms I noticed in the last cycle were almost certainly a ‘hangover’ from the Tax - so perhaps that’s a good argument for having Tax second, Lisa. In fact I don’t know the rationale behind the ‘ordering’ of the two cocktails - does anyone?
I still went for my aqua jogging session after chemo - as you slip into that water it seems to wash all the sh** away.
Cheers all, M-L xx
PS (edited) Got my ingredients wrong - Bilirubin is actually low (which is related to ‘light-deprivation’ depression in some studies I have since read - odd, considering it is never dark in Finland this time of year) and it is the Alanin Aminotransferase (ALT / ALAT) which is a little high by Finnish standards, normal by British standards. So maybe I’ll rethink depriving myself of my wine - it’s very cheering for a light-deprivation depressee!
Hi Lisa
I had 3 x FEC, which saw me feeling really rough for about 3 days and then slowly improving after and within a week i felt great. last thursday, I had first of three TAX. Was really scared as seemed to ‘read’ lots of horror stories. It was strange having no sickness for the first three days and the muscle aches started this monday but were bearable. finger nails hurting and struggling to do some things but the worse thing to deal with is the extreme tiredness. I have no energy, not sleeping and totally worn out. Hope this doesnt last too long. I also have needle phobia and with all chemos have had the stomach injection, honestly, they are not too bad and dont really hurt, just look away! Also having the horrible mouth and today got different mouthwash, so hope it clears and feels like i am eating cardboard and have sores.
hope all goes well for you
keep in touch
deb x
I think I’m the Tax queen cos I’m doing ok on it - a few symptoms but managing them well - usual mouth, bowels and joints but nails ok - hair went day 10 but I guess yours is gone anyway …
I’m having cyclophosphamide and andromyacin too with mine - oh joy!!!
The nail polish it meant to protect your nails and hopefully stop them falling off! A few of my toenails look really bruised, and my finger nails have wierd white lines going up them. I use a dark red nailpolish, which covers it all up nicely.
If fingernails are sore, try cutting them much shorter so that it is the pads of your fingers touching things, not the nail. If toe nails are sore, make sure you wear footwear that doesn’t touch the nails - flip flops and wellies are good (if not exactly a cool look!)
The stomach jag is to protect the white cells you have from the chemo and stimulate the bone marrow into producing more white cells quickly. The disadvantage of that can be a sore lower back and pelvic area for a few days - but it’s worth it to avoid neutropenia and stay out of hospital! Believe me, I’ve been in hospital! It’s been very successful for me - been getting it for 3 cycles now, and my white cell count has been ALMOST at my pre chemo count!
M-L - yeah, diet can help. Eat liver (YEUCH) or rare steak, and plenty of leafy greens which would be fantastic except Tax knackers my appetite. Last time on weeks one & two I was eating a meal every 24 to 36 hours. Just wasn’t interested in food.
All the best Babs, don’t hesitate to ask any more questions, we love passing on the benefit of our experience!
Hi Sue,
I’m not crazy about liver au naturel, but what about eating your liver as pate - with rocket & tomato salad or on open sandwiches. Either make it yourself by frying off chicken livers, onions & a bit of garlic in olive oil or duck fat until livers are just cooked (I leave them a bit pink in the centre), season & then blitz until smooth in the kitchen whizz. This makes a fairly soft consistency. Or you can blend them raw with a little fatty pork mince, garlic, herbs, pistachio nuts & a couple of eggs & bake in a bacon-lined tin in a water bath in a gentle oven for a couple of hours. This can be sliced. Or buy it, but check for mostly liver content. For max iron absorption never eat calcium products (e.g. dairy) at the same meal. Tahini (sesame paste) makes a high-iron alternative bread spread; beef is king of the castle; sardines are pretty good; dried figs are high. I eat like this normally & even during pregnancy my reading was always over 140, as it is now. I wish chemo destroyed my appetite, but nothing has ever done that, unfortunately.
And debs66 - didn’t we have a whirlwind exchange on the open chat session last night? I thought I’d seen your name before.
And Babs - Sue’s right. It helps to make this whole business somehow more worthwhile if we can help others with a bit of advice as they go over the same ground we have covered. Ask away.
Thanks for all that M-L - I’ll buy it - superchef I ain’t! I think my daughter would be more at home on some of these threads than I am! Thanks for the dairy idea too, so no butter on the oatcakes! I don’t do sardines, feel sorry for the wee sprats! What open chat session did I miss last night?
Have a nice day y’all - remember, things can only get better (hopefully!)
Sue xxx
Hi again Sue,
On Thursdays there is an live chat session here between 8 & 9 pm your time (2 hours later for me), which I’ve been meaning to have a snoop at for weeks, and kept forgetting. Last night, buzzing a bit with the steroid they give you before Fec here (not in pill form, thank God - that was the icing on the cake with Tax, and I notice you were still up and lonely after 5 this morning, poor lass - wish I’d known, because I was up at 7 & surfing around) - anyway, as I was saying, I remembered the session & logged on & it was a real blast. It moves so fast with everyone posting at once, it’s as aerobic as a work out. I’m going to try and remember again next week.
I pop into the Inn regularly, but usually just serve myself a quiet jug of wine and listen and laugh. You lot are a tonic.
hi emelle
we spoke on live chat last night and i said i would look you up! sorry, didnt realise i had posted a note to you a few days ago! get so lost with where i am! hope you are ok. i am still feeling very tired, a week after 1st tax. hope it doesnt last too long. hope you get to join us again next week, will look out for you.
love
deb x
This mightn’t be any help to you at this stage but just to let you know I’ve had five of six Taxotere (along with cyclo…?? whatever its called!) and I’ve been doing really well. I’m a little tired but nothing too bad. On the other hand I’m not going to work at the moment and really have very little stress other than the obvious. So that could have something to do with my well being! Of the other side effects, things taste funny and obviously I’ve lost my hair. But my mouth, nails, skin etc are all fine. I still have my eyebrows and eyelashes too.
So other than being a bit tired the only thing that happened to me was the neutropenia. Luckily I didn’t get an infection and I’ve been giving myself Neulasta injections since. Again I’ve had no bad side effects. The injection itself is grand - even doing it yourself it doesn’t really hurt. It’s hard to figure out the stats for joint pain after the injection because its similar to the chemo side effects but in any case I haven’t had any ill effects.
So all in all, I really haven’t had any problems. I know its not the same for everyone, but you never know you might be one of the lucky ones!
Thanks all for your comments, much appreciated and made me feel a bit better as you all seem to be dealing with it well - think its the anticipation rather than anything else and the fact the steriods already give me lower back pain - I feel some trashy movies and my newly decorated bed coming on opposed to the nice blues festival wanted to make this weekend
Thanks so much
xxx
Lisa
I am so hating Taxotere/docetaxel - I went through FEC (3 cycles) pretty well, though quite sick on day after, then just 4-6 hour bouts of fatigue and feeling “blaaah!” dead, dull, enervated. most of that confined to first week of cycle. by the end of each cycle I was pretty active. Apetite always good.
I had my first tax of 3 last Friday (18th July). The weekend was OK (in fact I was almost on a high with the brief steriod dose), then slipping down hill Sunday, aches and pains in joints set in on Monday evening, and show no sign of letting up. And my scar tissue from the LD reconstruction is so tight too! what’s that all about?
when will the pains go away???
Yes, like some of you, a terribly furry mouth. (actually with both FEC & T). I discovered Beverley Hills Formula gum strengthening toothpaste - it has been much kinder on the mouth than a regular zingy sort of toothpaste. And Difflam mouth wash has been recommended and I use that (do not use Corsodyl, far far too strong).
Apetite still oK, salads and very simple plain food, Wetted with gravy, or humous on salad (the garlic should be good for furry mouth/yeast prevention). Actuall salad creams a bit too vinegarry to be good for the mouth. Plain bread (little or no sugars because of not letting mouth yeast get hold).
Oh - but acid reflux with anything milky. I am on antibiotics days 5-15 so one cannot have dairy at the same time as the pills, so dairy only perhaps at lunchtime, but I cannot digest it. I was using yakult probiotic regularly before to keep the gut flora alive.
Thanks in advance for some encouragement on how long these pains go on for ??
sounds like you are having a hard time with it - had a problem with my steroids so still up and wide awake but seems like Ive some crap times coming up. just a question I have injection tomorrow and then antibiotics day 5-15 - why no dairy - i wasnt told of this? bit worried now as love my ice-cream when feeling crap
xxx
Hope you pick up soon and get some good times before next dose
xxx
Lisa - try not to worry about the dairy - I think it’s just a personal preference. I was really upset when I went off my favourite chocolate…and yet, when I fancied some last night, somebody had eaten the rest of the bar for me - so I’m upset again!!!
Linka - I just did 2nd tax last Thursday and by Sunday night was really suffering, even though onc extended the steroids for me for a full week. Real pain in legs, felt as though my ankles were being held firm in a vice and somebody was twisting my lower legs. My OH could actually feel the muscles trembling. Went to GP Monday and got morphine syrup to help me get through the nights. And it works. Once I get enough sleep I can cope with everything - please don’t hesitate to ask for more help if you are in pain. We don’t have to suffer THAT much!
In my very limited experience I have found it takes a full week to recover from tax - and I’ve definitely been improving Tuesday/Wednesday (probably coz getting enough sleep!). Off for a manicure today as my fingernails hurt greatly. Get em cut short and nicely painted - wee treat to myself. The treat is coz I’ll be taking movicol this afternoon…all these painkillers play havoc with your system!
We are all getting through it - hang in there, don’t be a hero, and stay sane
Sue xxx