change of chemotherapy drug

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I have changed from EC chemotherapy to Docetaxel and pertuzumab/phesgo injections. No one warned me of the change of side effects and to be ready for what was to come.

Because I had the chemo on Wednesday, it was on Saturday that the side effects kicked in. Fatigue far worse than EC chemo, as is the breathlessness. But what I was not ready for was again, the throat burning but with the addition of sore spots on the tongue. This was then followed by Diarrhoea Sunday evening, through to Monday morning. Are these normal side effects to get from this type of chemo and how is it best to cope with it? The burning throat and sore tongue makes the idea of eating anything a big deal. Don't want to eat at all.

  • Hi  I had docetaxol after EC  it absolutely destroyed my mouth and throat so I know what u going through. I tried all sorts of meds to help but in the end only salt water mouth rinse helped. It usually cleared after 5 days with me. 

    Xxx

  • Hello Babafudge, sorry to hear about your side effects. I'm not on the same chemo as you but will be changing from AC to Docetaxel in a couple of weeks and my oncologist gave me a Macmillan leaflet which explained some of the possible side effects of these different chemos, although it seems that everyone can react differently with some having worse side effects than others. Do you have a 'chemo hotline' number you can ring, or your nurse, as I think it might be best to give either of them a call as there may well be something they can suggest that will help with your symptoms. 

    This link about your type of chemo might be helpful too, as it lists possible side effects. It does say that breathlessness may indicate an allergy to the chemo so you should raise this with your medical team:

    www.macmillan.org.uk/.../pertuzumab-trastuzumab-and-docetaxel

  • Hi  I am on the same as you, started with EC and now on docetaxel and I have very similar symptoms. It’s a shame no one told you about the differing side effects as it’s not nice at the best of times and better to know what you are facing. My first cycle I had a really sore mouth, I found corsodyl helped, I also had been given flucuzanole and told to start on day 7, but when I said to the nurse about my sore mouth she told me to start it straight away next time and that has really been helping. My throat still burns, not sure what to do about that. And for me the diarrhoea is by far the worst! I hope you feel better soon x

  • Hi Ladies

    Sorry to hear about your side effects from the Docetaxel. I had the same regimen, EC followed by the Docetaxel plus Herceptin and pertuzumab infusions. Fortunately, I did not have the mouth symptoms, but I did have the diarrhoea quite badly. I took loperamide up to the maximum dose per day [and maybe a bit extra on the worst days]. My oncologist prescribed this. When this then wasn't enough to keep things under control she added in codeine. However, I could not take the codeine, as the SE were worse for me than the original problem. She offered to reduce the dose of D for the subsequent rounds and also mentioned that it could be the pertuzumab.......I elected to not have dose reductions, as I was afraid that I would not get the full therapeutic effect. I did not move far from a loo until I was finished chem.

    Re mouth symptoms: my friend who is a dentist had been involved with one of the local hospices a number of years ago, providing palliative oral care. She advised me to use Holland & Barret Tea Tree Oil mouthwash, starting as soon as I knew that chemo was on the cards for me. I started on this about three weeks before chemo and kept using it morning and night after toothbrushing, right through the chemo. I was surprised and so were my chemo care team that I did not have a single ulcer/sore mouth/gums all the ways through. I just swished a small sip around and held it in my mouth for as long as I could before spitting out. It could be coincidental, but I do believe that this worked for me.

    Thinking of you and remembering what it was like. It is just for a while. You will get through it and come out the other end. If it is doing that to the whole you, just think what it is doing to the nasty wee BC cells. I got a complete pathological clearance from these drugs and I hope that you get the same too.

    All the best WallyDug

  • I’m awake with my sore throat from the docetaxel, nasty isn’t it? I also had EC and knew the side effects would be different but wasn’t prepared either for this incredibly sore throat, plus the throat seems swollen inside and swallowing is hard, tablets are getting stuck, etc. I found EC worse for breathlessness, isn’t it funny how we’re all different in the side effects we have? I’ve got both constipation and diahorrea which I didn’t know was possible Rofl and everything tastes strange. People say suck a variety of pastilles, sweets, etc but it just takes the skin off my roof of my mouth so I’m just feeling moany frankly!! 

  • Are you using a mouthwash? Keep using it. On taxotere I used it every time I thought my mouth felt sensitive. Sometimes 6 or 7 times a day.For the sore throat......there is a spray  treatment which is easier than tablets and it contains a mild anesthetic which numbs the pain. I will look up the name later if you your doctor can't help but do phone them for extra help.

    Hope you're sleeping now. Love Karen

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  • Morning! Yes I am using mouthwash, I think  I know the throat spray, I’ll go and ask the pharmacist tomorrow x I’m going to try and go back to sleep now Prayx

  • Sorry to hear you were not warned of the change in side effects. I had EC then docetaxel, and found the latter far worse, it really knocked me for six. I also found, like you, that the side effects didn't kick in for a few days, and then other ones would appear 10 days in whereas EC side effects happened at the beginning and then you gradually got better. Skin reactions like sores on my hands and feet and nose sores came at around 2 weeks. I found dermal 500 helped to soothe things, especially the nose sores.

    Skin reactions and aches and pains are fairly common. I found paracetamol actually helped (I didn't think it would) with the pains and severe chills I had.

    I could barely get off the sofa for 10 days - which delayed me going back to work (I am self employed and work from home) so they reduced my dosage for the final 2 cycles which was easier to cope with and I managed to get to the end with no delays to treatment.

    I didn't have the other drugs you are on but the docetaxel is pretty strong!

    The good news is that as I had chemo before surgery I could see that docetaxel made the biggest reduction to the size of my lump so it was worth it!

    They recommended wearing dark nail varnish to me as your nails can be quite badly affected. Mine were all very discoloured by the end of chemo - and in clear lines to show when I had chemo! Apparently, docetaxel can react with UV (which is why it comes in that dark bag) so your nails get exposed when it is attacking the cells in your nail bed. My finger ails are fine now but my toe nails are still very discoloured and hardly growing, 8 months on.

    I also lost my eyelashes and eyebrows on docetaxel, which I had kept on EC. My hair head started growing back in a bit fuzzy.

    If you are concerned by any side effects, don't hesitate to call your BCN.