Hi all. I’m writing here as opposed to April chemo starters as I believe my problem is related specifically to the HER2+ chemo regimen. My post does contain some descriptions that are not pleasant, so please be aware!
I’ve been super positive since diagnosis despite a few setbacks , and couldn’t wait to get started in chemo. However the experience has been really bad. It’s seems I have had a bad gastro intestinal reaction to one of the drugs - Carbo/docetxel/phesgo- which floored me for 5 days. Started with severe chest pain, which progressed to severe abdominal pain, 8-10 
a day, pooped the bed, pooped my pants, (live alone so had to change sheets in middle of night whilst having extreme pain) no appetite, nausea. Three trips to hospital in 5 days, and eventually they added in codeine to calm my gut down. I’m still in nappies but at least the pain and frequency has eased. All this on top of the other niggly little side effects like suddenly realising that my nose is dripping blood, sores in mouth, sores on my face etc etc
I have asked for a onco review and my next chemo ( due in a week) will be delayed.
I’m reaching out to in the hope that someone may have had a similar experience but come through the other side. Thanks and sorry for the graphic detail. 
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Hi! So sorry to hear you are suffering this. I had same regime. Reaction not as severe as you ( except allergic reaction to start with! Which was dealt with really well, but a little scary) My side effects were similar to yours but milder. Definitely speak to chemo nurse. There are so many different drugs they can give you to counteract symptoms. Lots of strength and love to you.
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That does sound hideous I’m so sorry. Definitely get some advice from oncology as mine said with Phesgo there is no point suffering and they will do all they can to help settle side effects, and bowel stuff was what he warned me about specifically. I’m not starting Phesgo/Docetaxel until next week but fingers crossed for you that they’re able to get things settled for you.
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Oh sounds awful @ellie2 
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I’ve just finished 12 weekly paclitaxel and am half way through my herceptin/trastuzumab (I think that’s the same as phesgo - for HER+ yes?). I had very few bowel issues thankfully but I have the bloody nose all the time (you need to keep it moist inside so use steam, Vaseline, I bought a humidifier which I sleep with next to the bed all night). Also the face sores and rash - get them to give you steroid cream and fexofanadine antihistamine- worked wonders for me. Nothing clears these things up completely (and now I’m in the game of wondering now I’ve finished the chemo how long it’ll be before some of the SEs stop or decrease!) but they can definitely be managed. Just keep ringing and talking to your medical support team. Really important to ask for help.
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Oh my this sounds truly awful for you, I’m so sorry you’re dealing with this. My best advice to you would be to ask your oncologist if they will consider a reduction in dose. While it may not eradicate the issues you’re having, it may make them more manageable.
I hope you can get this sorted for subsequent infusions, what you’re experiencing is no joke. xxx
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Second everyone else’s signposting you to talk with oncologist. Iwas originally on the same drugs but had three adverse reactions in a row to ducataxel. Oncologist switched motto nabpaxitaxel as they are sure l am allergic to the drug carrier.
Had horrendous skin problems next, now on extended steroids and antihistamines. Second time guts from hell but with loperamide. I used to enjoy a veggie wholefood diet but my guts rebel at that with chemotheraphy. Have had to change to the world’s most boring bland diet to cope. The most roughage my guts can cope with is 1/2 a cup of jumbo oats made up as a runny porridge. I now avoid nuts, beans, pulses and brassicas as they all just dynorod straight through. It can be so tiring if it gets hold of you and you did the right thing contacting the hospital for advice as there is a real risk of dyhydration from that side effect. You might find this coping with page of some help.
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@sam1204 thanks Sam. Great advice for the face rash. It was awful! I used hydrocortisone cream myself and it’s mostly cleared up but will ask about antihistamine.
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@felineoptimist apparently my first dowse of phesgo was a loading ( high) dose and this could have caused it. Good luck with yours!
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@ellie2 how are you doing now?
I had my first loading dose of Phesgo with Docetaxel on Wednesday. Felt pretty normal and even made it to work on Thursday, Friday WFH, but both days with a nap after lunch. Yesterday was a washout though - I’ve got a sore throat with little sores at the back of my mouth which I think is mucositis, aches and pains like flu, and I had a 2.5h nap in the afternoon to try and deal with fatigue. Paracetamol isn’t helping much. Bowels definitely seem a bit twitchy and I have had a nosebleed, which I never get. It is all pretty much as described by chemo nurse, oncologist and BCN though. After your post I was adamant they give me loperamide to take home on Weds, even though it wasn’t on my prescription! I’m on day 5 now, got to start up the Filgrastim shots tonight, here’s very much hoping things settle down very soon…
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I hope you are feeling a bit better with your side effects. If it doesn’t settle give your helpline a call. Better to be safe and get something checked early. I was always told that if it didn’t feel right ring up and get advice.
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@wibbles thanks for your reply. My diet has been severely restricted . Just banana, boiled egg and potatoes and stock with rice noodles. Can’t tolerate fat or any kind of roughage either. Everything tastes and smells foul!
Did you have any breaks in your treatment following the adverse reactions?
I had two adverse reactions the same week, was going for the third a few days after but oncologist decided to wait to the following week. Then I had the third reaction, change from ducataxel to nab paxitaxel that week then new regime the following week. TBH the mix wiped the floor with me as I had not fully recovered from the adverse reactions side effects. Having three weeks between nab, carboplatin and Phesgo was better.
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Forgot to ask. Given how restricted your diet is have you asked for rehydration sachets from the hospital just to ensure your body has the basics to stay hydrated?
@wibbles as soon as I realised I had a problem I got my daughter to buy some dioralyte, and she took it upon herself to buy some fortified drinks. I think this is probably why my bloods stayed fairly OK, despite having no appetite and a huge umm fluid output!