@sez and @haymc i am so sorry you have had such rough days and @sez I am sorry about the cold capping, that must be hard, I hope you both start to feel better quickly.
@lilly123 sorry to hear you are feeling unwell soon, I hope you start to feel better soon.
I am feeling okay, bit of a headache, feeling a bit tired but I didn’t sleep amazingly last night.
I have been keeping busy by working during the day at home and friends and family have been popping by to keep me company, lots of Netflix’s and watching the night sleeper at the moment.
Hope you all have more restful evenings, sending big virtual hugs x
@sez that sounds simply terrifying. I really hope you are home with the family recovering and feeling better. Sounds like a good rest tonight and tomorrow is due. Hope the cat is better too.
Hi @sez, sorry to hear this happened to you. I had my second round of docetaxil, carboplatin, phsego etc last Thursday and I had the reaction, bright red couldn’t breath but all started with a faint cough on the first round, I hit the buzzer and they dealt with it very quickly, switched it off waited half an hour, switched on to slow feed and it seemed to go fine. They were surprised when it happened again on the second round (I was on slow feed anyway) but caught it even earlier at cough stage (it all happens so quickly). They’ve warned this might just be what my body does, which is kinda sad, my body is fighting poison and I’m convincing it not too but I guess it’s the tried and tested way of dealing with C and I need to trust the system but it can be scary. The first thing I do now is get the buzzer in my hand before any infusions start.
I hope you are recover well xx
Morning all. Hope those of you recovering slept well and feel better.
I’m day 7 of 2nd EC and this was the day last cycle that I felt the worst. Although I’m much better this cycle, I have woken up dizzy and woozy. Not sure if it’s something I should mention. I’m eating and drinking fine. I took my bp and it’s normal, as is pulse, temp and toilet habits. Maybe this is just a milder version of what happened last time. Throat is sore too just like last cycle. Thought I’d escaped some of this in this 2nd cycle.
It’s worth mentioning if only to put your mind at ease I think, you’ll probably feel better and a load off your mind hopefully.
I hope everyone is feeling better and in the mend, a huge hug.
Yesterday had pre-treatment bloodworks and took the opportunity to speak to the nurse about contunuing or not to cold cap and i definitely felt better for it. Because I’ve been having an itchy scalp yhe birse had a look saw nothing and mentioned that because I’m only washing my hair 1x a week as per recommended, the scalp may be adapting to the change and she also mentioned that yes my hair has thinned A LOT i still have a significant amount of hair - but not enough to go public without a head cover - and nirmaly in her experience having EC 1x every 2 weeks i would have lost significantly more than i have. I also was concerned about the pain I went through last treatment and she said that they can apply a gause to make up for the lack of hair and it would make it more bearable without impac to effectiveness. Looks like I’m cold caping tomorrow.
On yhe plus side, my husband took the day off to be with me at treatment because last time was rough, and although I’m greatful I’m not entirely sure I’d like him to be there but I don’t feel like I should say anything I don’t want to hurt his feelings
Wishing everyone a peaceful day withbrest and recovery xx
Great that you can still cold cap @dhmb. It sounds like it is working and I’m sure it will continue to work. It’s lovely of husband… but I get why you might want to get on with it alone. Maybe let him this once? I’m the same. My husband can’t come into chemo, no one can. He waits in a coffee shop with his laptop, working. I don’t want him to see me vulnerable. Xxx
They were going to possibly send me to a closer Macmillan unit (30mins away, as opposed to the big hospital I had my first two at which is over 90mins travel) for future treatments if yesterday had gone as well as the first one. I doubt that’s going to happen now.
Thank you @songbird1 I think I shall sellotape the emergency button to my hand next time too. I hope it never happens again, was absolutely terrifying losing control so fast. I reckon they’ll be monitoring me very closely too seeing how quickly it happened (not even a quarter of the way into the docetaxel when it happened). I hope my body gets a grip and doesn’t do it every time from now on. That would be new mental torment unlocked.
My phesgo was administered in a much better location this time and so far not nearly as huge a reaction either the nurse this time did it the side of my thigh and when I showed her the photos of the reaction the first time she seemed to insinuate the first nurse had done it the top if the thigh and that that was wrong ). I told the nurse before she gave it I would not be applying pressure like the other nurse had told me to and she was fine with that, said if it leaked she would do it herself (to help me with the self harm mental issues I’ve been struggling with) but it didn’t need it and she just dressed it gently.
Bubble gut stopped Tuesday and not opened since then, wondering if I’ll get the opposite this time.
Feeling absolutely shattered today. Was hoping it’d be like last time and I’d be a little achy and tired so I could spend time with my sister and niblings (as they’re only in the country a month) but I just want to sleep. Maybe tomorrow.
@sez i think the nausea and fatigue kicked in earlier this round too. Hoping that on Saturday, when I don’t have to do the horrible filgrastim injections, I’ll feel better. Just going out in the garden has been a major effort this week.
I’ve just been told I need to have flu and covid vac, I shouldn’t be surprised but dreading them as they never agree with me.
Trying to get in some grounding and mindfulness to help reduce the stress cortisol hitting.
It’ll be good if you can get it done a bit closer. I’m out in the sticks and have to travel an hour each way, I’m already there for almost six hours. Everyday we are a step closer to beating this thing!! Xx
I didn’t think I would be but I’m actually relieved to be going to the further away hospital. While I was very much looking forward to not having to travel so far they told me they wouldn’t have the amount of staff available were anything to go wrong. Nearly a dozen people rushed over during my episode and I credit that with them fixing it so quickly. The nurse told me they wouldn’t have had that many people at the smaller Macmillan unit. I feel far more reassured knowing the bigger hospital has those provisions. It may be a pain in the butt (feel bad for my dad, he drives me and is recovering from his own cancer earlier this year) but if that’s how it has to be then that’s it. I’m just going to catnap today and hopefully get out tomorrow, want to spend some time with my niblings.
Have to have my first (of seven) filgrastim of this cycle in about half an hour, already stressed just thinking about it.
So much travel! It’s a long way to go isnt it, but you are right about them having the higher staff numbers at the big hospital. I’ve asked about 20 times to move my chemo to local hospital which is 10 minutes away. It’s where Amy Dowden had her chemo. But the bigger hospital in the trust is maybe superior and I’d have to have my masectomy and radio there too. They are at least letting me use local hospital for picc line dressings and bloods.
I absolutely hope that there are no more allergic reactions for any of us. Dreading starting docetaxel hearing all these stories. EC was sold to me as the strong one but I’m scared about the taxane bit coming up. Sending everyone peaceful and lovely wishes today and hoping we’re all going to have enjoyable weekends. My youngest keeps crying about my hair so I need to cheer him up. Xxx
@dhmb hope it goes well tomorrow. That is sweet of your husband to take the day off for your treatment but I do understand how you feel. There’s not a lot for them to do and I also like to do these things by myself. Maybe this one time will be enough for him…. My last paclitaxel is tomorrow but they’re slightly lowering the dose because of the peripheral neuropathy I had in my feet, so hoping next week will be easier . Hoping you all have a symptom free weekend (as much as possible)
I’m having my treatment where Sarah Harding had hers.
I have blood tests and some scans at the nearer hospital and would likely have my surgery at the closer one too (though I’m not a fan of my specialist so I’d probably be fine having someone else if they changed him).
I’m terrified of having another reaction like that (especially hearing it could happen even after having a reaction), I’m sure you already are but I would just recommend keeping that button in your hand (I’d let go of it for a few minutes) and if you have any brain fog or unexplained cough press it, regardless of if mild. It all happened so fast I didn’t have time to compute what was even happening. They noticed me struggling cos I was near the nurse station not because I pressed the button.
Is everyone else having their flu shot and are you asking others in house to get it. I got a note from hospital saying it’s suggested everyone in household with immune compromised people should get the shot. Just curious what others are doing.
I was told to have it, but to have it at the end of week two after treatment so at strongest.
I think I will ask my son and partner to have it for me, my partner won’t be keen as he doesn’t have anything like that!
I am not sure about the covid vaccine as I only had two before didn’t feel like I trusted the process so now nit sure at all as I have had covid twice and was really poorly. Maybe just answered my own question xx
Have they not suggested your dose to be reduced by 20% which would be normal for anyone who has a reaction?
Did they say anything about contacting your oncologist about it! My oncology nurse did this and I had my dose reduced. You have the right to ask for this You are in control of your treatment not them.
In terms of the phsego injection my first one was rammed into my leg as quick as she could, my leg hurt for days after. This time the nurse did it slower for me and Iv had no problems.
The filsgram injections have been causing me a lot of pain, and I was on oramorph last time. Howver Iv been told to take anti histamine 1 hour prior to the injection that may help, I forgot today but will try tomorrow xx
Hi, my husband is having his at the beginning of October. I have a telephone appointment with my oncologist on 30 September and I plan to ask him then what I should do.
I was already on a reduced dose cos of my bubble gut (not sure how much, I saw the oncologist the day before). Not sure if they’ll reduce it again but they did say they’ll be doing it at a slower rate and I’ll be observed.
I took prescribed codeine before my filgrastim today, forgot about the antihistamine too so I’ll grab one now (thanks for the reminder) and make sure I take them before the remaining doses.
I’ve been told I can have the flu jab but to discuss the covid with the oncologist. Haven’t had an invite for either yet but will mention it to the oncologist next time I talk to her.
). I told the nurse before she gave it I would not be applying pressure like the other nurse had told me to and she was fine with that, said if it leaked she would do it herself (to help me with the self harm mental issues I’ve been struggling with) but it didn’t need it and she just dressed it gently.
xx