I’ve been reading this thread with great interest as my next chemo (Thursday, 14th July) is Tax, and I’m rather dreading it. All the stories of losing nails is the one I am really worried about as nails are kind of a phobia with me (nearly fainted once after sticking a needle right up under my thumb nail - and it wasn’t the pain).
Something I would really like to know, though, is: are the awful bone pains you describe caused by the Tax or the Neulasta injections? Or is it a combination of both? Oh, and do you have to inject yourself more than once after each Tax? I think someone said that it’s daily for 2 weeks - is that right? They haven’t said anything about that to me at the hospital (just given me a whole load of steroids to take the day before, and the morning of, the Tax).
Hope you don’t mind the query, from one who will be joining you fairly soon.
I’ve had 3 FEC and 2 Tax and have been lucky enough to have Neulasta injections from the start (private med cover thru work). Neulasta is pegfilgrastim and is one injection given 24hrs after chemo. My understanding is that the daily injections are filgrastim - they should be given for 10 days, but my chemo nurse says that many NHS hosps try and economise by only giving them for 5!
I’ve had Neulasta aches on day 3 each time - but only for about 24hrs.
Haven’t noticed anything vastly different on the Tax - just the tiredness this time made me crawl into bed more! At the first sign of aches, I take my temp and, if it’s OK, immediately take a paracetamol and an ibuprofen.
My main prob with my first tax was the steroids - hardly slept for a week and was at the end of my tether! Dosage was almost halved this time and, while on Friday I felt as if gravity had just got 10x stronger, overall it’s been much better.
I’ve been relatively luck with ses throughout and one thing I’ve learnt is that everyone reacts differently!
Fran, I’m 2 months post Tax now. I have lost 3 fingernails and like you am very squeamish when it comes to nails. IF they come off it is not until they are ready to shed and there is a considerable amount of new nail underneath. No pain, it just feels like I have cut my nails really short. Mine just look like short bitten nails.
As for injections. You DON’T have to inject yourself. They may imply this as it would save NHS money. I had lovely district nursies who came round each day to do mine. The second time I had the one injection neulasta.x They kept an eye on me generally and ordered prescriptions etc. We have enough to put up with so take all the support you can. It is hard to tell whether SE’s come from the TAX or injections really. I just had annoying flu like aches for 2/3 days. Nothing major. Although I was admitted to hosp with low white blood cells, I would still rather have TAX than FEC. No sickness or urghhh feeling, just incredibly tired. I was well acquainted with my bed and the sofa. Good luck! Just take one day at a time and before you know it you will be out the other side.x
Sorry, I should have specified
You can either go to the hospital for injections, or district nurse, or doctors and it’s for 7 days.
OR you can have the district nurse come out and show you how to do it yourself.
Now I thought I’d give it a go because its a drag having to wait in for nurses or getting to docs/hospital for 7 days in a row. Also, weekends!!! I was told the injections have to be within the same hour each day.
And you know, it really wasn’t that bad at all! I prefer ME doing it than someone else, it’s in the roll of fat in the stomach at a 45 deg angle, slight sting and then no problems, the needles retract themselves too so dont have to get it out again.
I’d recommend trying to give it a go yourself to save you hassle/time and it’s way more convenient. I was quite freaked at the idea but more freaked at the hassle of it all but it wasn’t horrendous.
It hurts a hell of a lot more having a cannula in which is MY bugbear. And it hurts getting bloods done.
Sorry - I didn’t really make myself clear - it’s not the injections that are worrying me (I do the Neulasta one myself already after each FEC - I am still working full time so waiting in for a District Nurse each day wasn’t an option!), but I was curious as to whether it was the effect of the injections, or the effect of TAX that makes the joint pain. I think someone earlier in the thread said you can decide not to have/do the injections if that is what is causing the pain (I understand as long as your blood counts are ok, though). El Katrano - thanks for the “7 days” info. If you do it yourself, I suppose they give them all to you to take home?
Yes, DJ007, the effects of the steroids are worrying me, too. I keep waking up all night, every night, anyway, since this started so work might be a much bigger challenge with all those steroids rampaging around my system. I’m glad to hear that overall you have felt much better on Tax, DJ007. I hope I am as lucky as you.
El Katrano - sorry to hear you have so much trouble with your cannula - I have a portacath, so luckily don’t have to worry about that.
My onc told me that the Tax and the Neulasta jab BOTH cause aches, which is why it’s so bad if you have both. However she also told me that for a lot of women the first cycle is the worst and the subsequent ones aren’t so painful.
That was certainly the case for me. I was in a lot of pain after Tax 1. Tax 2 was a huge amount better then Tax 3 was bad again but not nearly as bad as Tax 1.
So it’s possible that those trying dietary changes after a very painful Tax 1 would have felt better with the second Tax anyway. In the end it’s whatever works for you!
Unfortunately for me the after effects of very weak and painful arm and leg muscles and fearsome fluid retention continued for some time, but luckily most people don’t get those SEs as badly and at 8 1/2 weeks after my final dose I’m feeling resonably normal (my fingernails are still getting worse though).
Re Neulasta jab - I have posted this on other threads, but in case anyone hasn’t seen it, if you take Clarityn at the same time as the Neulasta, for some reason it really helps in reducing the aches. I checked with my oncologist who was very happy for me to do this, and it certainly worked for me.
Hi Fran, I’m not having any injections with my Tax - not had any offered. I’m on weekly Tax due to other health probs - had 2 so far and neutrophils so far holding up OK.
SEs not too bad; certainly not as debilitated as I was on EC but I get tired and achy. No Fire Trots this week so far - yay!
Hope you don’t mind if I join you. I have had 3 FEC and have my first tax on Thursday. I’m really worried about the tingly fingers and toes as i play the piano and harp, and a friend of mine still has no sensation in her hands 4 years later and have also read on some macmillan literature that “hair comes back in most people.” Have painted my nails in dark colour as someone advised me it might help to protect them. I guess I will just have to wait and see and hope!!
Have read all your posts and I will stock up on painkillers I think just in case.
Hi Rachel - I have actually removed my nail polish especially for Tax so that I can nourish them every day with cream - nail polish does tend to dry them out.
I haven’t had any peripheral neuropathy yet.
ALL chemo poisons that cause alopecia totalis also say “hair comes back in most people” - I don’t know anyone who has had chemo and stayed bald so fingers crossed.
I mentioned the possibility of my hair notcoming back and my lovely 13 year old daughter said “Doesn’t matter Mum, you’re still beautiful and I would love you just the same no matter what you looked like. I just want you to get better.” Puts everything in perspective doesn’t it?
My chemo nurse seemed to think that the dark polish was a bit of a myth. I tend to take the view that ‘if they’re going to go, they’re going to go’!
On the fact sheet I’ve got, actually losing nails is a rarer se - as is the tingly fingers. More common is redness and soreness of the palms and soles. I’ve had 2 tax and thought yesterday that I had a bit of tingling - but decided it was just fat fingers due to water retention!
I’ve certainly got the fluid retention this week - I’ve put on several pounds and am very bloated round tum and thighs even though I haven’t eaten very much.
Tax 2 tomorrow, so i’m encouraged by the thought that it might not be as bad as the first one! St.Eroid is doing his stuff (couldn’t be a girl to cause such aggro to us!) Was gardening at 9.30 tonight… not in the least sleepy… Wish I’d still got a TV programme with David Attenbrough - his voice always sends me to sleep, even if I am interested in what he’s saying! Ah well - could be a long night…
Gosh-now I’m really looking forward to tax! Might need to buy new trousers if I put anymore weight on. I’ve already gained weight on FEC which is purely due to being at home where I can eat when i like rather than at work.
Jane-I love St.Eroid! BUT I won’t be erecting a shrine to him anytime soon.
DJ and Ninja- Thanks for your advice. I’ll take the polish off I think, as I really don’t like it and would never normally wear it! I like it on my toes though, so will leave that on. Like you I think I’ll just take my chances with my fingers. What do you use to keep them in good condition? Have never really looked after them and they are actually really strong nails so maybe they’ll carry on looking after themselves.
Hi Fran - doing what? Chemo brain means that I have the attention span of a goldf… whatever creature it was I was just trying to say ;o)
Fluid retention gradually resolving; lost 2 lbs since yesterday, even though I had seaside fish’n’chips and a Whitby Gothic cornet (it was purple and black ice cream). Still am 6lbs over what I was before I started Tax 2 weeks ago!
I have a little bottle of Phenomen oil from Jessica nails to nourish cuticles and otherwise I just rub hand/nail cream into fingertips every time I remember. I’ve been rubbing sun cream into them this weekend as that’s what was at hand. The fingernails were already very dry and flaky from EC; they are normally very strong and hard so they are already starting to suffer.
I also got some dried comfrey leaves from the Haven herbals lady together with a recipe for making a cooling poultice to use like a manicure soak. Not tried that yet.
