I had this treatment but had an extreme reaction to, we think, Docetaxel element. Persistent and profuse diarrhoea for days, incontinent of faeces so had to wear a nappy, a complete face rash that made me look like a strawberry, white patches in my mouth, and it was if someone turned off the switch to eat and drink. Lost 13 lbs in 3-4 weeks. Strangely my bloods weren’t too deranged so I escaped admission. All of the side effects were ‘as listed so’ I thought ‘hey, that’s how it rolls’ and didn’t seek medical advice early enough. The out come is that I will not be having any more Carbo/docetaxel but as it was neo adjuvant ( for HER2+) I will go for surgery in 2 weeks and continue with Phesgo alone for the time being. They will review the need for a different chemo after surgery. But def Phesgo or Herceptin, and radiotherapy.
I hesitated to post this as it’s a bit of a horror story, but decided to go ahead to encourage anyone who is in doubt about the ‘normality ‘ of their side effects to get it checked out by your chemo team.
Hoping you all manage to escape the horrible s/e but continue to reap the benefits to get back to our new normality!
You don’t need to apologise with us. We’ve all experienced some sort of indignity or icky moments so you’re in good company. I think warning people was a great idea so people could bail out if they wanted. I’m going to share a bit with you too.
I also had bottom problems on Doc so I totally feel for you. Not quite as dramatic sounding as you, but a few worrying moments and extreme caution when deciding whether or not to pass wind. Sorry things got so bad for you though. I too went in early for surgery and missed off my last docetaxel dose. Not due to bottom issues, but because for me the chemo wasn’t working any more. It had worked to an extent, but the team decided it was better to get me under the knife sooner rather than later.
For anyone struggling with chemo, remember there is an option to ask for a reduction in dose. There is no guarantee that the oncologist will agree to it, but if it is proving hard to tolerate, communication is key. There are things they will try and do to make the discomfort of chemo as easy as possible for us.
Good luck with the op and thank you for sharing, because it may well help someone else who is suffering but feeling too embarrassed to talk about it.
I’ve recently been diagnosed and am about to start on this regime — am just waiting for a date. I’ve been reading through the posts and, while some of the side effects sound pretty scary, I think it’s helpful to know what others have experienced and how they’ve managed them.
@ellie2 Hope you are feeling a bit better now I’m just about to start on this regime and wanted to say thank you for being so candid about your experience. I know everyone reacts differently, but it’s helpful to have an idea of what to look out for. Wishing you a smoother time ahead xx
Hi @anyakuro I’m sorry to hear of your diagnosis. I always say chemo isn’t nice but it’s doable. Always make sure you let your team know if something doesn’t feel right, no matter how small, early intervention is key. You will be given a helpline number to contact out of hours, I found this invaluable and was always told to not wait until the morning.
If you have any questions no matter how small, the BCN helpline nurses are fabulous on 0808 800 6000 m-f 9-4 Sat 9-1
If you haven’t already done so here is the link to the monthly chemo starters group.
I joined two as I thought I was having chemo first but ended up having surgery them chemo with Herceptin. You may also like to join the HER2 and need some buddies that I linked above.
Hi @anyakuro I’m a recent starter on this regime. The forums have been very helpful getting an idea of what to expect. I’m also on the June starters group too. Hope you’re doing ok, I found the run up quite overwhelming with everything there is to think about and in the end was just relieved to get started x
@anyakuro thank you, that’s really sweet of you! They stopped my Carboplatin and Docetaxel but I have continued Phesgo and I go for surgery next week. Please do be vigilant and involve your onco team if you have any doubt about your symptoms being within normal parameters. Most people sail through it- fingers crossed you will too!
I started with this regime but after three adverse reactions at 5ml in a row no matter what supportive measures were put in place my oncologist thought I had an allergy to the carrier used in ducataxel and paxitaxel, they also said if I reactedto abraxine (has human albumin hence horrible costly) it might be taxels my body hated and that there will still alternatives they could use.
I did have a delayed reaction between ducataxel and completing the first abraxine but the 24/7 contact emergency number was sure it was from having had three goes with a drug l am allergic to and a week later throwing abraxine carboplatin and Phesgo on top. That reacted is now well managed by oncologist and sticking to wearing loose pure cotton and avoiding all latex and elasticine that is not covered by cotton.
Sharing in case anyone else might have has bad reactions or delayed reactions so they can know they are not alone.
Hi everyone, hope you’re all doing ok. Just wanted to check in and see how people are getting on? I’ve just had my third dose on Thursday so am officially half way through! My side effects haven’t been too bad so I’m feeling very lucky, although my phesgo injection site is causing my some pain this time around which is annoying but managable. Hope everyone is keeping well and getting through it xx
Hiya. I was on EC Doc and phesgo. One massive massive tip. LOOK AFTER YOUR NAILS. I can’t emphasise this enough. I got cocky, thought I’d got away with it. My last infusion was 19 Feb. I am now in quite a lot of pain in my toes and the nails are lifting on the big toes. My fingers are also very sensitive and black. I am possibly going to lose some on my fingers too.
Don’t spend huge amounts on products, vaseline will do the job I’m told. Too late for me, but not for anyone still having treatment. x
Hey @rh88 glad to hear you’re doing ok. My third infusion is next Friday and the halfway mark does definitely feel like something to celebrate. I’m still finding the week post chemo tough mentally and physically but then get two good weeks where I can work normally and get out on day trips and doggy walks. Hoping that continues to be the case for the next cycles. Hope your Phesgo pain settles soon xx
Has any Me had to change regime? I’ve had 2 cycles of docetaxel and carboplatin and reacted to both infusions quite severely as the oncologist said so he’s not letting me continue on docetaxel and changing me to abraxane instead.. has anyone has this drug and can tell me if the side effects are similar ? Thansk
Aw I’m sorry to hear that @loopylea I’ve not had to make any changes to my regime so can’t speak to that but hopefully this new one they put you on is kinder to you. It’s difficult enough without these curveball being thrown in too. Do let us know how you get on with it. Fingers crossed for you
Thank you.. I was tolerating docetaxel quite well except the infusion reaction and I have had bradycardia after both infusions which improves so now I’m a little apprehensive about a new drug causing the usual side effects.. my mouths been fine, appetite really good and no neuropathy just a bit of nausea from the Carboplatin which I’m assuming I will still get as I’m keeping that one.. plus I’m having a 3 weeks break now too .. my last infusion was 7th July and next is 25th August! As they need to apply for funding and I have a wedding on the 20th that would four me at most risk With low bloods so he said I can basically skip a cycle then carry on.. he said that’s ok clinically if I’m happy that my chemo will finish later than planned..
Some ladies on the HER2 thread have had reactions to chemo and had breaks, adjustments to dose, changed chemo or had to stop early. We are all individuals.
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I’m just about to start on this regime and wanted to say thank you for being so candid about your experience. I know everyone reacts differently, but it’s helpful to have an idea of what to look out for. Wishing you a smoother time ahead xx
My side effects haven’t been too bad so I’m feeling very lucky, although my phesgo injection site is causing my some pain this time around which is annoying but managable. Hope everyone is keeping well and getting through it xx