Hi,
I was diagnosed with triple positive breast cancer back in June. I’ve just completed 3 rounds of EC chemotherapy and next Wednesday I start my 1st of 4 rounds of Docetaxel and Phesgo injections and I’m so nervous! Not so much with the Docetaxel as I know the process will be very similar to what I’m used to in the chemo suite with that. It’s the Phesgo that I’m nervous about! I’m already a massive wimp when it comes to needles (I know, you think I’d be used to it by now!), but the thought of having a needle injecting something into my thigh for 5-8 minutes is filling me with such dread.
I’m looking for anyone willing to talk about their experience with getting the Phesgo injections. Is it painful? Am I going to feel anything during? e,g, I’m nervous I’m going to feel faint (I’ve fainted at blood tests and covid vaccinations before). I’m probably getting myself all worked up for something that isn’t that bad (that has been the case with everything so far since diagnosis!), but I would love some reassurance that it’s all going to be okay. Or even just some nicely put, but honest feedback that it isn’t very nice, just so I know what to expect.
Also, if anyone has had similar treatment to me (EC 3 weekly followed by 3-weekly Docetaxel and Phesgo), how did you find side effects from the Docetaxel in comparison to the EC?
Thanks!
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Hello there! So sorry to hear you are worried about having the psego. I am having an injection of Trastuzamab every 3 weeks as I have Her2 positive cancer. I am told Psego is very similar, so let me help alleviate your worries…… during chemo, the nurses administered the vaccine. When I finished chemo, to my horror I was asked to continue taking the vaccines at home and self vaccinate!!! Well, after several days of worry etc etc, I can tell you it’s not so bad at all and very manageable. The needle is son small you don’t feel it going in. There is an intial stinging sensation at the beginning of the injection which goes after a few seconds. I only take a minute to 2 minutes to dispense all of the vaccine into my leg and then it stings a bit as you withdraw the needle. The needle is not painful at all!! Just don’t rub the vaccine site afterwards. I have completed 15/18 vaccines now. Good luck and hoping you find it as “ comfortable “ as I did. Xx
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Hi,
Your treatment mirrors mine exactly, I had cycle 4 three weeks ago (number 5 tomorrow)
I too was so nervous about the change in the drug and had even been told by my oncologist it will floor you!..not what I wanted to hear.
On the day I had forgotten you get one in the thigh so never worried until that moment of the procedure, it went better than I imagined, of course you feel the initial insertion and for a few seconds it’s unpleasant stinging , but the nurse kept me chatting and was fine.
I’m not going to lie it DID hit me hard, I was fine for 3 days then Ended up in bed with lots of pain around my body (new side effect from the previous cycles) I had diarrhoea, didn’t eat much, felt very sick…was sick daily (even taking the anti sickness pills) ,bad daily headaches and lots of mouth ulcers (got mouth wash on prescription which cleared them in 4/5 days)
I rang the red card and my own GP and was prescribed co-codimol (can’t spell) as was taking too many paracetamol
For the body pains and was told it was all normal.
Then on the 5 day I rang to cancel my picc line care and he asked how I was, I explained and he said I must go straight to A&E which I did…I stayed in hospital for a week with infections, severe diarrhoea, and the rest.
They said I should have gone earlier.
Again honestly I was rough.
Chemo,number 5 tomorrow and not 100%recovered,but seen the oncologist and he’s reducing the dose so shouldn’t hit as hard.
My muscles are very weak still
Everyone is different so hoping you will cope better, I hope this hasn’t worried you even more, that’s not my intention, I just want you to plan for the worse and hope for the best.
I had my hospital bag packed before and easy to eat foods, even complan drinks.
Just be prepared…and if you feel it isn’t right ring that red card, and if still you don’t just go straight to A&E .
Wasnt sure to tell you my experience or not …but as I said I was glad I pre prepared and kinda new what to expect.
Happy to chat more…I wish you luck on the rest of your journey…we are over half way now.
My appointment with the serve on is booked when we will hopefully book the date to remove my tumour…hoping to be in recovery over Xmas.
Paula…xx
I had Phesgo with docetaxel back in 2021 and for all the IV chemo it was given through the drip. It was only after I finished docetaxel that I went back in for the injections into my thigh. They only take five minutes and are much less trouble than the IV drugs. I had virtually no side effects from them. I hope you find the same.
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Hi @triplepositive30
I started on Phesgo and Docetaxel last week. I had no problem at all with the Phesgo injection It was way easier having a nurse do it rather than when I’m injecting myself with filigrastm (the needle is about the same size), I felt no pain at all and the time passes really quickly when you chat to the nurses. I find all needles easier when I watch the whole process, but if that makes you feel worse let the nurse know and look for a way to distract yourself, maybe a video on YouTube or phone a friend or something? Good luck with your treatment xx
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Hi
My pre mastectomy chemo was docetaxel + carboplatin 6cycles plus Phesgo jab. Not exactly like u. Chemo was grim & after C3 reduced by 30%.
Phesgo was no problem. Slowly is good as otherwise it’s painful & can sting. No reaction. They continued until pathology results post mastectomy. All good. Good luck Ana
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Hi,
I am triple positive and had a larger grade 3 tumour, so have had 4 cycles EC followed by 12 paxciltaxel weekly with phesgo every 3 weekly for 18 cycles. I have finished the chemo and now have phesgo on its own. I have my mastectomy on Nov 6th.
Phesgo did cause joint and bone pain for me. Harder to ignore at night. I found ibuprofen more effective than paracetamol or you can take both. I used AU natural muscle relief gel which helped as well.
Paxciltaxel was by IV. Side effects were less than EC. More physical where I found EC messed with my head. Dizziness, spaced out. I felt unsafe to
drive etc. My head cleared on taxel. I had a skin reaction on my arms and hands. I have also suffered with neuropathy but I had a lot with 12 cycles.
I have my first phesgo alone tomorrow. So I’ll be able to gage the side effects alone. The actual
injection doesn’t really hurt. You’ll have premeds and will already be hooked up to chemo IV. Honestly, I took a lorazapam and slept every week. Didn’t even know they did it!
I hope it goes well. You’ll be fine after the first one. Changes and the unknown can be scary but nothing once you’re through it.
Good luck, LKM xx
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@triplenegative30, I am also on the same treatment as you. I was due 3 rounds of Docetaxil but could not have the last round due to the side effects of Docetaxil- loose bowels which got worse each round and Peripheral Neuropathy which i still have. My Phesgo injections started at the same time as the Docetaxil infusion, and are not a problem.
The staff alternate the thigh being injected each time, and inject the fluid slowly so that there is no reaction. I was also advised to drink plenty of fluid and keep moving for a few hours after the injection before resting.
I have had no side effects from Phesgo, and am on injection 5 of 18.
Hope it all goes well for you.
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Thank you for your reply it’s good to hear your experience and I’m glad that it wasn’t that bad for you.
I think I am also going to be told to inject myself once I’m done with chemo, but with Herceptin, as it was mentioned back in the beginning that they would teach me how to do it so I don’t have to keep coming into the hospital. Luckily I have a wonderful husband that has been injecting the Filgrastim for me anyway!
Good luck with the rest of your injections!
Hi Paula,
Thank you for your reply, I appreciate the honesty. I know everyone is different and what happened to you may not happen to me, but I’d rather go into it being prepared for different side effects than before.
I’m really sorry to hear about your experience and I hope that chemo 5 has gone well for you and that the reduced dose is better.
Our paths seem to be so similar, with me being just a little behind you. My last chemo will be mid December, so I’m hoping to have my surgery in Jan. I have my appointment booked with the surgeon in a couple of weeks so will hopefully get a date booked in then.
Good luck with the rest of your treatment and thanks again for sharing your experience.
Hi @Hawketower
Thanks for your reply. So glad to hear that you had a good experience with it. I’m also really happy to hear that the needle is about the same size as what I’m used to with the Filgrastim! I’ve been picturing massive syringes in my mind (like those that have the chemo drugs in!) because of how long it’s supposed to take.
I admire you for being able to look, I won’t be!
Good luck with the rest of your treatment and thanks again.
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Hi,
Thanks so much for your reply. Have you been doing Filgrastim injections to boost white blood cells? And did you get bone pain with that? If so, would you say that you found it similar or worse?
Neuropathy is something I’ve read and worry about with taxel. Sorry you’ve experienced that, is there anything you did to try to prevent it or anything that helps with it?
Thanks again for your reply, it’s so nice to talk to others going through the same thing. Good luck with the rest of your Phesgo injections and also with your mastectomy in November.
Hi thanks for your reply. Neuropathy is something I’ve read and worry about with taxel. Sorry you’ve experienced that, is there anything you did to try to prevent it or anything that helps with it?
Good luck with the rest of Phesgo!
Hi,
I started on a single large dose filigrasm, can’t remember the name, but I had a bad reaction to
it with temp spikes (without infection) and a lot
of pain. Moved to daily injections G-CSF for first 5 days. Really upset my stomach and very painful joints everywhere but better than single dose. I only had G-CSF for my EC chemo. I am lucky I haven’t needed it with taxel at all as my bloods have been really good each week.
EC was far worse but at least it was every 3 weeks, so I had a good 3rd week feeling energised but with taxel the side effects are less. However, it is every week and I only had day 2 (pumped up on steroids and full of life), then day 6 when side effects had worn off… then you go again. You do
get into a routine. Watch out for your mood on day 3… I don’t think I was alone in feeling extremely down emotionally every day 3. Took me a while to understand this was the come down from the steroids and it only lasted a day. Made it easier to manage the dark feelings on those days knowing it was just a chemical reaction in my body.
Have you had surgery yet? It really
is good to find others that are triple positive. I haven’t found many people since I was diagnosed in March. Lots info about triple neg out there but not so much for us.
Keep in touch and let us know how you find phesgo. As most have said, I don’t think it will be too bad for you. EC was the tough one.
LKM xx
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Hi, there was nothing i could do as not everyone will experience it. The good thing is I know it will eventually go so in the meantime Im dealing with it by not keeping my body temperature too warm as this seems to aggrevate and make it worse.
But everyone is different and i wouldn’t worry about something until you have it.
Good luck with everything.
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Glad to hear the side effects were less with your taxel, especially as you’re having it every week. That would take its toll on you, with not having as long to get over them. I’m having Docetaxel every 3 weeks, so at least if they end up being bad, I’ll have a decent amount of time to feel “normal” again before the next cycle.
It’s interesting you mention feeling emotional on day 3, as I’ve already been feeling that with EC, as you say usually after the steroids have worn off and I crash. Each cycle I’ve forgotten that I feel better with the steroids, then get disheartened when I feel fatigue again once I stop taking the steroids! Then that gets me down and the next couple of days are a bit dark and gloomy. Just need to remember this for the next cycles!
Not had surgery yet. I’m due to have it after chemo is finished (mid Dec), so hopefully January. Not sure how long after I’ll have it but should get a date booked in a couple of weeks as I have an appointment with the surgeon to talk about my mid-way ultrasound results and surgery.
Sorry to hear youre feeling so nervous. I have a needle phobia so feel your pain. I went to hypnotherapy which helped me. I also use emla cream (can buy it over the counter or prescription). I put it on my leg with a dressing before i leave the house for my appointment. I don’t feel the needle going in at all. It can be a bit nippy to begin with but wiggling your toes helps. Also asking the nurse to go slower stops the nip too.
You can do this
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I decided to try the iced gloves and socks during taxol as I had got some neuropathy two years ago when I had docetaxel. I took them in in a cool box and put them on 30 minutes before paclitaxel. I swapped them over after about 45 minutes and they were just melting when I finished. I got them on Amazon and they seemed to help as I only have three numb toes on each foot. Some units are supplying ice now but most ask you to bring your own kit if you want to use them.