Hi, This is the first time I have posted. I am post mastectomy after being diagnosed with invasive lobular breast cancer last August. Had 3 x ops to try and remove tumour also 1 partial lymph node involved. I’ve got through 3 x FEC chemo reasonably well. Had my first Taxotere 2 weeks ago and am only just starting to get back to anything like normal. Really got me down as I probaby had every side effect going. I am really reluctant to go through this again. Has anyone else felt like this and is each Tax chemo going to be like this.
Sorry you’re having a rubbish time. Yes unfortunately for some of us, TAX is hell on earth and it’s cumulative. Check out the “need positive comments about TAX” thread which tells you everything you ever wanted to know (and a few things you didn’t)
I’ll bump it up for you. Hang on in there!
Hi.
Sorry you’re suffering. My best advice would be to contact your onc/BCN/chemo unit and make sure that they know exactly what you have been suffering - they may well be able to offer advice/ different meds to make the remaining ones easier.
My lump was lobular and I had FEC-T last year.
My main problem was the steroids I had to take alongside the Tax - they did not agree with me at all, but after the first cycle these were reduced and I coped much better after that.
While it isn’t pleasant it is described as the ‘gold standard’ of chemo and is often recommended for lobular tumours and/or node involvement. Having said that, I know of cases where the reaction to tax has been so bad, the chemo has reverted to FEC.
Good luck
D
For me every tax cycle was completely different in terms of how I felt and which side effects I had - and the last cycle was embarassingly easy…
All I can say is while you are well get yourself prepared for next time, including the side effects you haven’t previously suffered (as far as you can with stuff you can buy) and for s/e you did have, ask if they can prescribe you anything or suggest how to make life easier.
Lets hope that the next one is a doddle
Hi Hatingchemo, I’m sorry you’re going through this. I also had FEC followed by Tax and when I switched to Tax it was a shock to the system. I had horrendous aches in joints, spasms all over and what felt like needles stabbing me. After I got over that first week I went back to Onc and told them they would have to do something or I wasn’t having anymore. They gave me 7 more days of steroids on top of what I was already having for the next 2 cycles and that made such a difference and the next 2 were bearable. They did talk about reducing the strength of the Tax but were reluctant to do that if they could avoid. I found Tax to be a struggle and it sapped my energy and going up stairs would make me so breathless, plus losing sense of taste - such a pig compared to FEC! Speak to your Onc, nurses and tell them what is happening and I hope they are able to help. Jane x
Hi, that’s exactly how i felt after my first taxatere session too… The first ten to fiurteen days were awful…but then in the third week everything felt much better, and with the steroids just before the next session somehow I felt very well indeed. I had to drag myself to the hospital for the next three sessions though ( I had four taxatere in total), and I am glad I did, as it did really seem to make a difference (I had chemo before mx, so I could actually see the chemo making my very swollen boob go down in size, which was comforting). So please do stick with it. But do let your BCN, oncologist and the team know how you feel both physically and mentally - they may well have something you can have to help with some of the side effects.
Warmest wishes
PS my hair started growing again about 16 days after my first taxatere session 
just tiny little baby down hairs, but still…
Christine
Hi Hatingchemo
I agree with DJ007’s advice and do speak to your oncologist and let them know how you feel.
I had 3 FEC followed by 3 docetaxels and have to say that for me the dreaded docetaxel is the one with ‘a sting in it’s tail’. First couple of days whilst you are on the steroids seem to be fine and then as soon as you stop them it hits you with a bang! But at least you know what to expect and do check out the link that alesta29 has told you about. Try and see it through as only another week until the next tax and then you will only have one more to go. In some ways the 1st one really knocked for 6 as you really are not expecting it to affect you so badly - at least you know now what’s in store so no big surprises next time.
Do try and see it through like the rest of us have.
Good luck
Mazzalou xxx
Hi hatingchemo
just wanted to endorse other comments in letting the Oncology team know, Tax does seem to have this effect. I am now 12 months from completing 4EC and 4 Tax and was reasonably well with the EC, but the first Tax, hit me like a steam train, however…I felt the first dose was the worst and whilst I had symptoms they didn’t seem as bad as the first dose. This is a gold standard treatment and I wanted to persevere with what ever could help me. The people on the forums at the time were really helpful and the theme I kept coming across was it’s doable.
Best Wishes
Angela
Hi Hatingchemo
Writing this from my hospital bed and feel very much in the same position as you on tax. I too had lobular tumour which was removed by Mx in October together with ALNC, then started chemo in November. Had 3 doses of E which were a bit of a breeze then started on 3 doses of tax. The first one really took me by surprise on day 3 I had so much pain I had to retreat to my bed for the rest of the week. By day 10 the joint and bone pain was retreating just leaving digestive pain and disgusting taste in the mouth. I was assured the 1st dose is the worst and was determined to be prepared for the 2nd with extra strong painkillers to be started before the pain started. 2nd was 2 weeks ago today. At first it seemed better, less pain, then at the end of last week I got terrible stomach cramps. Came into hospital last Friday and have been here ever since. They removed my beloved PICC line as it was the source of the infection, but still my temperature keeps spiking. So it’s going to be another round of blood cultures and a CT scan come Monday.
Not much help to you I know but I was determined not to have a final dose until I spoke with my Onc who was adamant that it does make a difference. Tax works by wiping out cancer cells at particular points of cell development/division but unfortunately wipes out the blood cells at the same time. I have asked to have the injection to boost white blood cells, even though it really made my back ache at least it might stop me ending up in hospital again. I agree with everyone else that it’s worth talking to someone, particularly your Onc, about things that could be prescribed to help. The 1st time took me by surprise and I had to take the 1st week off, this time I cleared my diary for the 1st week but have had to cancel/postpone everything for week 2 moving into week 3. Next time perhaps I should just take the whole 3 weeks off. If you can take 3 weeks off it will certainly help to know there are no demands on your time and energy.
Good luck with your decision
Please hang in there.
I had a terrible time on chemo. I had 4 x FEC and 4 X taxotere. I lost 2.5 stone on FEC because i was so sick. Then after my first taxotere I reacted badly (terrible rashes, pain etc etc) and was also hospitalised with neutropenic sepsis. My dose had to be reduced by 25%. I was very weak with it all.
The thing is you do get through it. I was determined to hang in because however bad it seemed it was better than the cancer. Now I’m 2.5 years on from the chemo and although it was a terrible experience I’m so glad that I hung in there. I feel I did everything possible to destroy that cancer.
Some of us have a harder time than others on chemo. That’s how things are unfortunately. Personally I found it very difficult to read that people weren’t finding chemo too hard as I was struggling so much. But there are others of out there like me who had a very tough time and got through it (I believe that Kylie Minogue had a very tough time too). I took a lot of comfort in that and used to think that if other women could do it then so could I.
Of course speak to your team and be as detailed as you can about the problems. There may be some things they can do to help with specific problems.
I did take a huge amount of high dose co-codamol to get me through all the pain on taxotere which was prescribed.
I was told that cancer cells are weaker than ordinary cells. I used to think that it the taxotere was doing all this to my good cells (knocking out white cells etc etc) then just imagine what it was doing to those wretched cancer cells.
take care, Elinda x
Hi Hatingchemo
I had my last dose of TC (have had four in total) a week ago and I just want to let you know this is manageable! Each one of my doses gave me different side effects and to differing degrees. The first and third for me were the worst, the second I was completely wiped out by tiredness for the entire first week and the last one landed me in hospital on Thursday with a fever from a cold virus (not neutropenic though so only stayed in for the day) but I’m actually feeling good now with almost no SEs. The third week was definitely the only time I felt even vaguely normal through doses 1-3.
Definitely call your oncology unit and tell them what you have been through with this one. They can and will change your anti-sickness meds and prescribe other things to help with SEs.
Hope you’re feeling better soon!
Tracey
Like Alice Cliche my reaction to tax was different every time. The 1st time, I felt very tired after end of steroids and just felt like sleeping 3 days and ached, white coated tongue and diharea at end. 2nd was much better, really sleepy one day and not bad after that, little trouble with mouth and taste but no diaharea. 3rd time was more like 1st and did take time to get over but may have had cold and end of 6 chemos. My last chemo was early Jan and now I am fine. Ask oncologist if they can help but stick at it you will be through it soon.
Thankyou so much to everyone who has commented. It really does help to know that other people have got through this terrible period and come out the other side. I think I am coming out the other side now (week 3). I have to say though I am absolutely terrified of the next one. I will speak to the Onc team and hopefully they will help me.
Thanks again
Julie xxxx
Hi, thank goodness I found this thread, to know these symptoms are normal is such a relief. A few times this week I have wondered if there is something serious going wrong that the Drs haven’t sussed.
I have been having Tax weekly (had my 7th dose last Monday) and each time the symptoms have got worse and worse. This week, however, has been awful. I can cope with the numb/black toenails, the horrible taste and the fatigue - but, the pains in the legs and the painful stomach/chest is so debilitating. They feel like they are on fire and so far, nothing is working. I am on Lanzaprole 80mg, Gaviscon, Peptac and am eating Extra Strong Mints like they are going out of fashion. To be honest, these past couple of days I have felt like throwing in the towel - at one point I just wanted to fall asleep and not wake up until it was all over. I have two more Tax then they start me on EC - I am hoping that will follow the more normal pattern of 3 doses over 9 weeks - and give me at least a few days of feeling “normal”. Though I am dreading what SEs that chemical bundle will bring.
At this point in my treatment (I haven’t had my MX or Rads yet, that comes after chemo for me), I can’t imagine ever feeling well again. My face is swollen from the steroids, I no longer look like me.
Sorry, Hatingchemo, I have hijacked your thread - but you described how I have been feeling so well.
Debs xx
Try to stick with it. As far as I can tell people who suffer lots with tax have an easier time with EC. You are nearly there, and weekly tax is a lot kinder than once every three weeks although you may not feel that at the moment. Just think what the poison is doing to your unwelcome guest.
Xx Sarah
Debs - re your heartburn/acid reflux. Peppermints are a well known cause of acid reflux so eating extra strong mints could well be exacerbating your problems. Eating boiled sweets such as fruit sweets can also exacerbate it in my experience because they have a tendency to be rather acidic.
Also I don’t know if you have discussed using the likes of gaviscon with lansoprazole with your doctor? If you take something like that I was told by my GP it needs to be 4 hours after (or before) as it may stop the lansoprazole from working.
Another option is to take domperidone and lansoprazole. You take the domperidone about 15 - 30 minutes before you eat. But I’d definitely discuss this with your doctor first and get whatever you take prescribed.
Hope the above may help you find a better solution for your stomach.
take care, Elinda x
Sarah and Elinda, thank you for replying. Its so hard to know what to do for the best isn’t it? I get differing advice from each chemo nurse I speak to - which doesn’t help. The one I spoke to on Friday told me to double my dose of Lanzaprole ie. 2 x 2 per day and also use Gaviscon upto four times per day (at least an hour after the Lanzaprole). She also said that after my next dose (Monday), I should start the paracetamol before the steroids finish to stop the bone pain SE taking effect. On the other hand they tell you to limit your paracetamol intake so as to not mask any infection. I give up.
I have been eating fresh pineapple for my sore mouth, but a friend told me tonite that it can make the stomach problems worse arrrghh!
When I go again on Monday I am going to ask them about Aloe Vera for my stomach. The thought of another week like this one is awful - I know there are concerns about it affecting the chemo, but I am not sure if it means it makes it less effective or if there is some other reason.
So much conflicting advice, my head is in a whirl. A friend had homeopathy treatment the whole way through (she has the same oncologist as me), but I have been told a firm NO! on the 2 occasions I have mentioned it. Again, no real reason why.
Thanks again, it certainly helps to speak with people who have actually been through this, not just nurses and doctors who, despite their care and concern, really have no idea how we feel during this horrible time.
Debs xx
Hi Deb
It is very confusing and difficult. If you’re having stomach problems then I’d steer clear of most fruit which tend to aggravate things like acid reflux. I find that things like pears and bananas are okay but pineapple is a definite no-no where I’m concerned - it flares up my acid reflux badly.
I think you have to live with the bad taste and some soreness in the mouth as part and parcel of having chemo. You could try having a bit of crystallised ginger which is also good for the stomach or putting a piece of peeled fresh ginger in a cup with boiling water which you can sweeten if you want to.
Chemo nurses do give brilliant advice but I think your doctors should know what dose of lansoprazole you are taking and why. There are other proton-pump inhibitors such as omeprazole, nexium, pantoprazole so if the lansoprazole isn’t working well for you it might be that you need to try a different one. They can take about 4 weeks to really kick in fully too. I would speak to either your GP or your Oncologist. You need to have it prescribed anyway (so you don’t pay for it), so they know what meds you are on too and then look at having something else such as domperidone. You could also talk to a pharmacist about using gaviscon with proton pump inhibitors.
I’ve looked in aloe vera and I wouldn’t take it personally especially not if I were having chemo.
With regards to painkillers, it is a case of weighing up one evil against another. Clearly you don’t want to be getting pain all the time. I took co-codamol (prescribed) all through my chemo. I did develop neutropenic sepsis after my first tax and I felt incredibly unwell and my temp shot up about 3 hours after taking my painkillers. The best thing I found was to take my temp in between doses of painkillers if I felt unwell.
Talk to the team about this again.
take care and hope things improve for you and everyone else going through chemo.
Elinda x
Hi Hatingchemo
I was told that the sided effects of the first TAX can be the worst, becuase you still have some of the FEC going through you, so you get a double-whammy.
My first tax I had the worst constipation I have ever had. I have now had my third and my body seems to have learnt to cope better. The tiredness has got worse with each go, but now I have had the 3rd, I know it is just a matter of time for me before I start to feel livelier again (oh yes and then I started radiotherapy, but hey ho).
Do talk to the nurses about what side effects were worst and they might be able to adjust something or give you more tablets, gels etc to reduce them next time round.
Sue