Wednesday, 29 October 2014

Everything I've learned about... Tax (Docetaxel/Taxotere)

I originally wrote this post at the end of October 2014, 8 days after my first Tax.
I have added some more comments in blue text, on 15 December, 12 days after my third and final Tax.

I'm starting this post on day 8 after my first blast of Tax, so it's early days, and I will need to return to it to update and complete it. But I'd say over the last week it's the thing I've been asked the most about by women who are also going/going to be going through chemotherapy and know Tax is on the cards for them.

A quick recap: There are lots of different chemotherapy drugs and combinations of drugs. My personal chemo treatment is FEC-T. Three doses of FEC followed by three doses of Tax (Docetaxel/Taxotere). At the time of writing I've had my three FECs and one Tax.

A bad reputation

Women who are having a combination of FEC and Tax seem more often than not to start with FEC, followed by Tax (although it can be the other way round). Tax has a reputation for being the bad one. (I've heard several people say FEC is the Red Devil and Tax is her big, ugly sister.) So, many women like me start with FEC chemo, find it to be mean and horrible, and then begin to panic about and dread Tax because we've heard it's so much worse.

This bad reputation is not entirely fair. Whenever people ask the question "Is Tax worse than FEC?" in the Younger Breast Cancer Network (UK) group on Facebook the response is around half think FEC is the worst, around half think Tax is the worst. So, if Tax features in your future, it's probably not worth getting too worked up about it. There's as much chance you'll find it better than FEC as there is you'll find it worse than FEC.

I'm going to hazard a guess that part of the problem with Tax is that more often than not it seems to be given after FEC rather than before, meaning there is more time to get worried. Going through cancer diagnosis and treatment is an absolute fucker for leaving you spending lots of time in limbo, fearing the unknown. I know I'm far from alone in finding the times spent in limbo (wondering what various tests and scans are going to reveal, wondering what this or that treatment is going to do to me etc) the most difficult times of all.

Different side effects and timescales

While Tax might not necessarily be worse, it is very different when it comes to side effects. Different people have different experiences, and indeed the same person even tends to have different experiences with each blast of FEC and each blast of Tax. But these appear to be the most common differences between the two:
  • The side effects from FEC kick in pretty quickly, and then ease off over time. My experience was generally that week 1 on FEC was a week of feeling ill and tired, week 2 was a lot better and week 3 I was completely back to normal. Tax is a bit different - physical side effects generally don't seem to start kicking in for people until day 3 or 4. So you get a bit of a false sense of security - and then it hits you.
  • There's more of a risk of allergic reaction to Tax. This could happen during any one of your blasts. The nurses told me that if it was going to happen it would be during the first half hour of the drug being administered. No-one likes the thought of an allergic reaction - as someone who has had a severe allergic reaction to penicillin I was quite anxious about it. But you shouldn't worry. They keep a close eye on you and can stop it immediately if it happens. (And if you do have an allergic reaction to Tax, there are alternatives they give you.)
  • Tax doesn't seem to make people sick, unlike FEC where nausea and sickness is a very common (and sometimes horrendous) side effect.
  • Tax doesn't wreck your veins in the same way as FEC.
  • Tax generally appears to be different when it comes to hair loss. It doesn't happen to everyone, but a lot of people find that their eyebrows and eyelashes thin significantly or disappear altogether on Tax, while the hair on their head often starts growing back.
  • Common side effects of Tax are bone aches and pains, sore mouth/mouth ulcers, oral thrush, loss of taste.
My own experience to date

As of day 8 after my first Tax blast, I currently hate Tax and FEC in equal measure.

(And day 12 after my third and final Tax - I'd probably still say the same. Although if I was told I have to have one more chemo, but that I could choose FEC or Tax.... if I HAD to choose.... I think I'd choose Tax.)

My main FEC side effects were:
  • Vomiting and nausea
  • Painful, hard, inflamed veins in my arms which caused problems every time anyone went near me with a needle (unfortunately a regular event when you're having cancer related tests and treatment)
  • A sore, bruised feeling in my skin for a couple of days, around day 6.
  • Hair loss. And, not exactly a side effect, but I have been using the cold cap to try and save my hair and that has to stay on for a full 3.5 hours on FEC. It pushed me to my absolute limit in terms of tolerance of self inflicted torture.
Beyond that, to be honest, little worth mentioning.

In comparison, this has been my experience of Tax so far:
  • No vomiting or nausea. Point scored! (This was true for all 3 Tax cycles)
  • No vein problems at all. Two points scored! (This was true for all 3 Tax cycles)
  • Only had to have the cold cap on for 2 hours and 15 minutes. Point scored!  (This was true for all 3 Tax cycles)
  • Days 3/4 to today, painful bones. Days 4 and 5 were the absolute worst - but to be honest, I didn't really take much in terms of painkillers. Next time I will. The bone pains are not nice at all, they've been bad enough to seriously affect my sleep, but even so, once again I get the impression I got off quite lightly this time. I've heard so many other women describe it as feeling like they've been hit by a car or run over by a steam train, or that they can barely get out of bed without help because of the pain. Women who have ended up on prescription painkillers. So I think I've done ok, even though it's not been nice. Ultimately though, point lost. (The second cycle I had some bone pain, probably slightly worse than the first cycle. The third cycle of Tax - I didn't really get any aches or pains at all. I took a couple of lots of ibuprofen anticipating pain, then realised it never actually came, and didn't take any more!)
  • Indigestion. I've had indigestion a lot, days 4-7. One night that kept me awake for several hours too. But again, I haven't taken anything for it so I shouldn't really complain! But still, point lost. (I had less indigestion on the second cycle - I think I was affected for a day or so. Third cycle - n oproblems with indigestion)
  • My least favourite side effect of them all is that my mouth has turned into a disgusting, skanky pit of oral thrush. Sadly this is very, very common and can happen every time you have a Tax. Waaaaaaah! Again, I feel slightly guilty for moaning because again, I don't seem to have had it nearly as bad as others. I've no pain or ulcers and my tongue never reached thick, Brilliant White. But oh my days, the inside of my mouth is disgusting, and makes everything taste like how I'd imagine a dirty pair of pants to taste. I've now got treatment for the thrush and my tongue started returning to normal pink within hours, but apparently the taste problem is likely to stay with me throughout the whole of Tax. Two points lost, especially if this is going on during December (if I can't taste my Snowballs I am going to be PISSED OFF). (I got oral thrush every time and it is disgusting! I was given mouth drops called Nystan each time. They work but take a bit of time. I probably spent 7-10 days each cycle with a disgusting mouth.)
So at the moment, for me, Tax and FEC are neck and neck in the shit stakes.

I'll update when I have anything to add.

Final update 12 days after third Tax:

So this post tells you about my own experience of Tax. Everyone is a bit different. I think I was unlucky with the oral thrush but got off quite lightly otherwise. I haven't yet had any pain or problems with fingernails. A couple of my toenails look like they might drop off but I'm really not bothered. They'll grow back!

Another thing to mention is that while I lost most of my eyelashes and eyebrows on Tax, it's amazing what can be done with a bit of makeup. I went to a Look Good Feel Better session at the hospital and learned everything I need to know. I wrote about faking eyebrows and eyelashes in another post.

And the best part of Tax - the hair on my head has been growing back. A lot. It started to grow back as soon as I finished FEC. I think my own hair growth has been extra good because I continued to use the cold cap for every chemo. There's still a long way to go. The top of my head is horrendous! But at least it's growing back. And now I'm done with chemo altogether that should really pick up a lot more.

So, in conclusion - don't worry about Tax. Chemo isn't nice. Tax isn't nice. But you'll get through it.

13 comments:

  1. Hi I have bn diagnosed with breast cancer, her2 & +er (lucky me) & as if Monday I start 3 X FEC THEN 3 X T then lumpectomy then radiotherapy yr info was very helpful, I'm more terrified of the Unknown I think more than anything else. I'm also trying cold cap just so I don't scare the kids too much !! Wish me luck ! Xx

    ReplyDelete
    Replies
    1. Hi Lynn
      I'm really sorry you have breast cancer and have to go through all this treatment - wish you lots of luck for it. It's doable! I'm now just over a year since finishing all active cancer treatment and it already feels like a lifetime ago or it happened to another person. You can do it! Xx

      Delete
  2. Hi I have just started treatment and have found reading your experience really helpful

    ReplyDelete
    Replies
    1. Hi Nicole
      Thanks for your message. Just wanted to wish you luck with treatment. It's over a year since I finished now, and it feels like a lifetime ago or like it happened to someone else. You just gotta get through it. xxx

      Delete
  3. Hi well done 3 fec 1st tax Monday but had onc last min & told I can stop after 1 tax so I'm glad about that & hope I can cope with 1 tax !! Onc thinks 1 tax will zap tumour so got surgical appt for 1st Aug thank you for info it's fab to hear the true facts ❤️ love Lynn

    ReplyDelete
    Replies
    1. Good luck for it and the surgery! Xx

      Delete
  4. Thank you for your inspiring words and end of chemotherapy comments. I was diagnosed with breast cancer on March 17th, stage 2,lumpectomy and radiotherapy was the initial diagnosis. One of the sentinel nodes had cancer, so three weeks later it was lymph node removal, one of the 25 removed had cancer so they said chemotherapy was beneficial but it was my choice,i chose chemotherapy, taking no risks, but was dreading it, told so many horror stories.Final red on August 13th, not been too bad, 60% of hair gone, but dreading the t as it seems so more severe, but your comments have lessened that fear some and to see you and your friends, all beautiful gives me hope that I will get back to normal.thank you so much, cathy

    ReplyDelete
    Replies
    1. Hi and thank you for your message. I hate chemo but I'm glad you've had chemo. Itsnot nice but frankly if you have cancer I think you should blast it with everything you can! To me it's like a strange nightmare now, doesn't really feel real. You'll be there before you know it! Just keep going :-) xxx

      Delete
  5. Hi Everyone
    I had FEC-T 6 cycles in total. the FEC I sailed through, but the T I didn't.. followed by 15 sessions of Radiotherapy. What I've been told and strongly believe in this, it varies patient to patient, as every patient is different.... Stay strong!!!

    ReplyDelete
  6. I am fighting breast cancer now and just finished my first three treatment of FEC and now afraid to start Tax for my last three treatments. After my first treatment I also was told that my white blood counts were dropping too low and I had to get a needle 48 hours after every treatment and the side effects where somewhat similar to Tax. This scares me because somethat I feel like I am going to suffer extra. It really helped me to read what your experience was and even though everyone is different, it helped me to think I will be ok and I can do this. Thank you for sharing and helping others. I hope you are a survivor and that you don't ever need this shit agin. God bless you and make you even stronger

    ReplyDelete
    Replies
    1. Hi Semira, you can totally do this!!
      I also had injections for 5 days after each chemo to stimulate white blood cells to grow. I got some aches from it like Tax but it's nothing you can't handle. If the aches and pains are bad, get them to prescribe you good painkillers.
      One thing that really kept me going through tax was knowing I was past the half way mark. I found the 4th cycle, first tax, mentally and physically the hardest. But after that things got loads better.
      I'm really well now! And hopefully will be for a very long time. Chemo sucks but it's doing a really important job.
      You can do this!! Xx

      Delete
  7. Hi. I've had 3 Fec cycles and my first T cycle yesterday. Still apprehensive about what's to come but I've felt totally normal yesterday and today but I'm slightly worried about the next few days, but if I've learnt anything then it's to go with the flow! And positivity is important!! Although I know we all struggle at times. The 'I'm fine' reply to everyone is being used regularly. Good luck to everyone who's going through this. We can do it. Merry Christmas!! If we can!!

    ReplyDelete
    Replies
    1. Lots and lots of luck! Hopefully the side effects aren't too bad. You're nearly there now. And merry Christmas to you too! Xx

      Delete