@bramble1 I completely agree, it can be such hard work - I think your GP was very rude to say that to you and I’d put in a complaint! You are their patient regardless of what their other priorities are.
I have been quite lucky with my GP thankfully - as soon as I mention cancer and chemo they can’t do enough. We request our fit notes online so it isn’t a massive hassle, but I went in on Monday to discuss the flu jab (had it booked at pharmacy and they weren’t sure about doing it above my PICC line and weren’t trained to do it in my butt or thigh) spoke to the receptionist, the nurse happened to be there and she went off to speak to the Dr about the timing of it and then booked me in for next week - so very helpful and got the situation sorted for me.
No HCP should ever make you feel like a nuisance, that is their job (ex midwife so know all about being busy and the joys of the NHS), hope you feel better tomorrow xx
@sunshine-smile Yay well done on the final EC, we can tick that one off. I start my weekly Paclitaxel on Monday, a bit apprehensive as it’s going into the unknown again. I’ve decided to cold cap at this one and see how I feel about cold capping every week for 9 weeks:pensive:. I will also have my first Herceptin injection so expecting a double whammy if side effects.
It’s been so nice this week to feel normal and do normal things.
Hope everyone is doing well, we are getting through this but by bit xx
Hello all. I had my first Paclitaxel yesterday. Despite being v sleepy in the chair and all evening (infused anti-histamine), I was then awake most of the night (infused dexamethazone too)! Today haven’t felt sick at all and deffo more ‘in the room’ than I was on day 2 of the EC. I guess it all might go to s**t tomorrow but so far so good .
Morning all, I hope you are all doing OK. I had my 1st Docetaxel/Phesgo yesterday. I was a bit nervous, but all went well. The Phesgo injection was a bit ouchy initially, but then fine. For the first time, I struggled with the cold cap, made me feel a bit nauseous and took it off 10 minutes before the end, which hopefully won’t be a problem. Good luck with your ongoing treatment, we’re getting there. Hugs to all xx
Hi ladies,
Been offline for a bit just to get myself together. I hate this journey we’re on but we’re getting through it bit by bit. I had my 4th session last Thursday. I’m in carbo dox and Phesgo injection. I agree with the stinging sensation it’s horrible but thankfully is over quick. I asked why it happens and the nurse said it’s just where it’s penetrating the skin layers.
I’ve had different side effects this time. My upper back and chest have been aching. I spoke to the helpline and they said just alternate regular ibuprofen and paracetamol. Has anyone else had this? I’m so fed up of taking tablets. Was also given omeprazole this time. My tinnitus has also increased but isn’t as loud all the time if that makes sense.
I’m still on the thought process that today will be a better day again. Just needed a virtual hug Xx
Well I still have my cough but it’s no worse and my husband seems to think it’s a bit better. No other symptoms like temperature or coughing anything up, so nobody seems concerned. I have had a few theories from various nurses and even my oncologist that it could be the chemo has inflamed my airways a bit (like asthma), or that it could just be a slightly runny nose irritating my throat when I lie down, but basically nobody is worried so I won’t either! I’m just very “over” the coughing!
Anyway I just spoke to my oncologist for my fortnightly pre treatment catch up and she is happy for me to start paclitaxel tomorrow. Assuming my bloods are ok (the ones taken in Friday were fine so I’m hopeful these will be too) - she obviously hasn’t had them through yet. So looks like I’m in for my steroid overdose tonight - has anyone else had to do this before paclitaxel or is it just what they do here? I have to have 10 tablets 12 hours before and another 10 6 hours before - on the plus side if the cough is related to the inflammation theory the steroids should sort that out if nothing else (asthmatic sister, I’m holding on to that theory!). I’ll be making sandwiches to take to bed with me this evening, and am hoping for maybe an 11am or midday appointment as somehow 11pm/5am or midnight/6am feels doable for steroid doses!
I’m on fortnightly paclitaxel if that makes a difference.
Just back from first paclitaxel - got lucky with an 11.30am appointment, so steroids overnight were ok asi stayed up to take first lot at 11.30pm and then set alarm for 5.20am so I could eat a jam sandwich (not the most healthy option but it was safe on my bedside table overnight and I didn’t have to wake the dog up ) before my 5.30am dose. I had piriton at 11.30am then had to wait 30 mins for that to kick in, then 3 hours of paclitaxel (maybe gives any other fortnightly pac an idea of timing), so I also got lunch of soup and a sandwich and some orange juice .
I only bad one coughing fit. Nurses flew at me from all directions with tissues, sweets and water . I apologised to the others in the room and said I promise I’m not infectious but they were very understanding and I guess we all know if there is an infection we wouldn’t be sat there getting chemo. Still always feels awful when you start coughing somewhere like that though.
And I have only been sent home with steroids for the “night before” and 9 (up from 7, oh joy) filgrastim injections so that was nice not walking out with half of the hospital pharmacy in my bag!
So glad I got that one done even with the cough, I am now down to 3 to go so am practicing my 3-2-1 Dusty Bin fingers for those of us old enough to remember
Hello ladies! I’ve been a bit MIA so thought I would send a wee update on my first Docetaxel and phesgo since it’s been two weeks
I felt more tired than normal the first couple of days, but no nausea or lightheadness at all. I had some pain in my lower back and hips but that was well managed with paracetamo so was feeling mostly OK initially. Then all those rough side effects started happening after a few days - My feet had been sore, my mouth started hurting - it felt almost like it’s been burnt & it impacted my eating because certain foods hurt it, then my taste started going. Then last Friday I had the most intense diarrhoea (TMI!) and because it happened at night my ward was shut so I was sent to a&e which was not fun! Thankfully I was ok but then started having other issues with my digestive system - pains, some blood in my stool. Again, all was checked and I’m fine! Apparently these are just all side effects of Docetaxel - My nurse also said if someone tolerates the EC well then the Docetaxel can be rough and vice versa. She told me the first time should be the worst, and my next two shouldn’t feel as brutal and even if so I now have things to manage it from the get go (creams, meds etc) I’m so glad that I had three weeks between this cycle though!
Thankfully been getting better this past few days so back out walking, caught up with friends and family & been back at work so I’m hopeful for a nice long normal feeling week before my next cycle next Friday
Also got my surgery date in for December which feels exciting, as that is stage 2 in my treatment so means I’m almost done with stage 1!
In one of the other monthly forums, they share a good thing that happened that day which I think is a nice positive idea so just wanted to share good things for me today - had a good counselling session this morning, and I’m dog sitting for my son’s wee pug tonight so I’m just snuggling in with him now and it’s the best.
Well done to everyone else who has had their first and second rounds of their next drugs, and well done to everyone in general for managing through all of this!
@louise15 Sorry to hear you’ve been having a rough time, but it’s good to hear that it’s nothing the docs are concerned about.
Pug snuggles are the best My pug is helping me through this crappy time and I tell everyone he is my emotional support pug.
His name is Hippo and he is usually a big part of any positives in my day
Here he is -
@toad aww Hippo is adorable! And I love his name. They’re such wee lap dogs aren’t they? Winston is like Velcro when I have him, just stuck to me and I love it. Such a great comfort.
Hi @bramble1, I’m sorry to hear about the coughimg, and hope it subsides soon. Ive been off the site for a few days, enjoing the “normal” days, with a spot of gardening, eating chips & drinking diet coke! Not the healthiest I know, but so nice! & needed !!!
I had my 4th EC, so back on steroids, & awake at night.
Im due to start weekly Paclitaxel in 3 weeks, but I want to request some extra time just to let my body recover a bit. I"ve been told there will be no take home drugs like steroids, just anti-sickness. Dexamethasone will be given as IV infusion as normal, but then nothing in terms of pre meds, or post meds. And no Pelgraz injection, unless white blood cells fall too low. Im hoping thats the case. Its neurothapy that I’m most concerned about. I don’t think I’ll be able to carry on with cold cap, as ive found it very tough last 2 times due to hair loss on the crown. Sadly, I just don’t think I can tolerate it any more, as I thonk it makes me nauseous too.
Sending hugs to all & hope you’re feeling better too. xxx
Hi everyone. Loving the pooch pics!
Thought I’d share a quick update on my first (of x 9) weekly Paclitaxels.
Initially felt fine after my infusion on Tuesday but by Thursday evening I was struck with leg and hip pains which I’ve still got today (Saturday). Didn’t bother ringing the 24hr line cos it seems to be a well documented side effect - hopefully temporary for a few days only - and paracetamol has so far taken the edge off, but it’s been really uncomfortable at times, especially night. No tingling in feet or fingers tho. My tinnitus has also got worse. Anyone else had the same?
Interesting to hear your experiences with Paclitaxel. I start my weekly infusions on Monday (9 Sessions) along with my first Herceptin injection so all a bit scary as it’s all new side effects. I will be in the unit for a long time as they give you the injetion first and wait 1 hour to see if there is any reaction before they give you the Paclitaxel which I am told takes about 90 mins to infuse through. My Oncologist said with the weekly dose being lower than the 2 or 3 weekly dose the side effects should be milder, if only I could believe him🤔. I’m going to try scalp cooling one more time and see how I get on.
I watched a film the other night with Liam Neeson in it called Ordinary Love it follows a couple as the wife is diagnosed with breast cancer, could really relate to how she felt but also gave an insight into how if affected her husband, worth a watch, it’s currently on
BBC iPlayer.
Meeting some friends for lunch today, so good feeling normal and well.
Have a great weekend everyone and I’ll report in post Paclitaxel and Herceptin
Good morning August starters Thanks for all the advice and tips, I’m happy reading how everyone is getting through it. I’m just about to have my second EC and I was wondering if anyone used compression socks/gloves for EC, or just for paclitaxel, and also did anyone use ice chips or ice lollies during your EC infusion to try and prevent a sore mouth? Thank you xx
Hello @healed, i didn’t personally use compression socks during EC, as I was trying ice mitts on hands & feet, but struggled, given that I had the cool cap too. Will try the ice mitts with Paclitaxel to try to reduce neuropathy side effects.
I didn’t try ice lollies either. Just used Sodium bicarb rinse daily to try to help with mouth ulcers, Bonjela, and Biotene mouthwash. But the hospital gave me some Deflam mouthwash to try this time, which I’m yet to use.
Hope this helps… good luck xx
Hello @pollypox, gosh sorry to hesr the side eeffects with weekly Paclitaxel. I hope they ease off for you soon. I got told I’ll feel poorly for 24 hours, then my Oncologist said maybe 2 days…but like @dianne3 says, I’ll believe it when I see it! Its a bit much to feel rotten for most of the week, then have to go back in for a second dose.
Im due to start in Nov, as just had my 4th EC… and like Dianna3, not looking forward to a different set of side effects
Hope you feeling somewhat better tomorrow. Sending hugs xx
@pollypox my tinnitus has gotten worse through all of this, really hope once we’re all done it settles back down! I hope your pain subsides, with my Docetaxel I had pain in my hips and lower back, paracetamol helped and it only last a couple of days.
@dianne3 I hope the first paclitaxel goes well. Glad you’ve had a nice weekend planned before it all starts
@healed I haven’t used compression socks, however have used the iced socks as I’ve started Docetaxel. I have the mitts too but unsure how to use them both as I have the cannula in my hand! So I’ve just been resting my hand on the iced parts. I’ve not used ice lollies either, but like PG92 said I’ve used bicarb mouthwash and my unit gave me diflam after my Docetaxel as I had lots of issues with my mouth.
@pg92 is bonjela helpful? I’ve never had issues with my mouth until the Docetaxel and it was so awful, the Diflam helped lots but I didn’t start that until like 4 days in! Looking for anything else I can use alongside that to help.
I have my second Docetaxel on Friday (all being good with my bloods of course), as well as my flu jag this week. The week after the first Docetaxel was intense with side effects, so not really looking forward to it but at least I have all the things in place to manage those side effects this time from the get go so hoping it’s not as bad! Also my nurse said that the first time is generally worse - and if not, after this one I only have one more left so I’m nearing the end!
Going to focus on enjoying a nice week of feeling normal before my treatment, it’s been so good feeling more like me this past few days
xx
. I will also have my first Herceptin injection so expecting a double whammy if side effects.
.
but it’s no worse and my husband seems to think it’s a bit better. No other symptoms like temperature or coughing anything up, so nobody seems concerned. I have had a few theories from various nurses and even my oncologist that it could be the chemo has inflamed my airways a bit (like asthma), or that it could just be a slightly runny nose irritating my throat when I lie down, but basically nobody is worried so I won’t either! I’m just very “over” the coughing!
) before my 5.30am dose. I had piriton at 11.30am then had to wait 30 mins for that to kick in, then 3 hours of paclitaxel (maybe gives any other fortnightly pac an idea of timing), so I also got lunch of soup and a sandwich and some orange juice 
.
but they were very understanding and I guess we all know if there is an infection we wouldn’t be sat there getting chemo. Still always feels awful when you start coughing somewhere like that though.
I used to love 3-2-1 when I was wee!
Thanks for all the advice and tips, I’m happy reading how everyone is getting through it. I’m just about to have my second EC and I was wondering if anyone used compression socks/gloves for EC, or just for paclitaxel, and also did anyone use ice chips or ice lollies during your EC infusion to try and prevent a sore mouth? Thank you xx