@indigo2 Im a fellow northeast lass but have lived on Loch Lomond for almost 30 years with husband daughter 21, sons 19 and 17. Can’t remember how I found cancer card, but it fair cheered me up yesterday when I was feeling let down by my good boob getting an infection.
3 Likes
@jnrc oooh must have a go at that! Mind you, I’m scared of the AI on my new phone…I’m such a dinosaur 
I live on the Moray coast in Scotland with my wife who is also a nurse, I’m actually an ex nurse, I retired early. Not necessarily a great place to be in this situation! Mind you she writes everything down that I do. We’ll be having a clip board and a chart at the bottom of the bed at this rate! I have a 22 yr old daughter who is 22 who is also a nurse…it’s a bloomin nightmare! Can’t move! 
@fimac1
Thank you for the heads up on the comfort box, I’ve ordered one. 
Loch Lomond is a beautiful part of the country.
2 Likes
@sacha I had tagged you on the January chemo starters so you can get to know others having chemo at the same time as you.
If you click in the 3 horizontal lines next to your image and click on Latest any unread posts on this thread will show. You can also bookmark this thread ( button at bottom of thread)
1 Like
Hi folks,
5 treatments down. Is anyone else on a weekly paclitaxol regime ( right word? feels apt). I’m on 12 weekly followed by fortnightly EC x4. On Wednesday I had a port installed. Being conscious throughout was up there with one of the oddest experiences I’ve ever had. It was accompanied by the full Folklore album, played through the nurses phone all while the surgeon was narrating the procedure. Once the local anaesthesia wore off later that night, it really was time to crack out the cocodamol. My treatments are on a Friday and my nurse was going to see if she could use it. However, after what felt like an inordinately long quest of discovery to find the entry point, it turns out the stitches were right above it . It was still so tender that just her trying to locate the position made me feel woozy and see a few stars. She said it will find its spot and settle into place soon, something that sounds a bit like Clifford the big red dog looking for a place to nap. So, a cannula it was…hopefully for the last time. I think I’m beginning to get to grips with what happens after treatments… Sundays are sore throat and sinus days. I hope everyone has a good day. X.
2 Likes
Hi @mags3 Im halfway through 4 x 3weekly EC, then will be going on to the 12 weekly paclitaxel. How is it having it weekly? I’m a bit worried about having it so regularly.
I do hope your port settles down soon, I have seen a lot of people on here say they are great and make things so much easier.
1 Like
@dragonfly2
So sorry to hear you have had a rubbish couple of weeks.
This really is the gift that keeps giving !
The cysts sound painful.
Rest and take care hun xx
1 Like
Hi @leelee1,
So far, I’ve found it okay. Side effects have been minimal and quite predictable. Today was the first I’ve needed to rest during the day and felt a bit under the weather. How is the EC treating you?
1 Like
Thanks @mags3 thats good to hear!
For EC, the main side effects I’ve had is tiredness, yukky mouth (helped with corsodyl and have difflam ready for next round), brain fog and nausea which is helped by the metacloperamide. Again, all doable so hopefully it will be similar for yourself x
Is anyone else struggling with sleep? I’m mostly waking up about hourly then napping again but few longer stretches of sleep. Some staying awake as well. I have to say my sleep wasn’t brilliant before all this
3 Likes
I’m not struggling with sleep but I’m struggling with EC in general. I don’t think I can do two more rounds of it. I’m considering asking my oncologist to move me into taxol. It’s too much…
1 Like
Hi @fimac1
Second cycle has been okay… so far!
The weigh in not so good as I’ve put on half a stone on 3 weeks. I’ve been craving crap and eating it despite little pleasure from any food as it all tastes tasteless.
Had thought it might be a shorter day but I was still there for 5 hours just because they were waiting for drug medication to be delivered from pharmacy.
I had the earliest appointment so woke up hourly from 04:00 wondering if it was time to get up or thinking I’d overslept!
Took a zopiclone to help me sleep on Friday night as was too wakeful from steroids despite being awake since crack of dawn. Woke up feeling rested.
Stayed awake all day Saturday, Sunday and today. No snoozing at all. Haven’t done much. Just sat, rested, replied to messages, TV, knitting - I’m churning out scarves. On my tenth! Need to knit something else. Scarves are easy when my brain is addled!
Think I might crash tomorrow as I’ll have completed the steroids. I’m waiting for the bone ache to return now I’m going the Filgrastim again.
Few abdo gripes this morning but I think the Ondansetron is to blame - constipation. Nice!
Skin was terrible week 2. Better last week but dry and red on chin and nose. Consultant Practitoner said it was acne from targeted therapy. Prescribed daily face wash, antibiotic cream and antibiotics should it flare up again.
Last week my scalp was really sensitive. Reminded me if that pin art when I touched it. Sensation stopped on Thursday when hair started shedding. Got worse each day! Braving the shave tomorrow. I am fine about it.
Hope your second cycle is a smooth ride! X
3 Likes
Lack of sleep can be like torture.
My night is turning into day a bit. Have always been a night owl but not getting to sleep until at least 2am, but do sleep after that.
I’m sure it will be much worse on the next rounds of Paclitaxel as there will be oral steroids on top of the IV.
Are you getting oral steroids on a taxol?
I’m on EC at the moment and yes oral steroids but only until day 4, which is today. I still struggled sleeping last cycle when the steroids had stopped. There’s a fair amount of needing the toilet mixed in and probably some anxiety.
1 Like
@jnra we are all here for you, you can do this.
What are the worst side effects for you? Maybe you need some extra advice how to deal with them.
Use your brilliant schedule word for word, it’s really good.
Keep going, the goal is worth it! 
Isn’t it funny how different our regimes are? I only get IV steroids in with my chemo and I have had some problems needing the helpline. It’s like devil in the deep blue sea!
Anxiety must be a problem for all of us, I think thats why I just don’t get my head down.
Thanks to laxido I’ve not had constipation at all but days 3 onwards I’ve been the other way.
Mind you I’m sure all the extra food and the weird smoothies I’m making are contributing!
Are you very hungry too?
I was really hungry in my ‘good’ second week during the first cycle - put it down to the effects of the steroids in the first week!
Finally braved the shave tonight - I started shedding Saturday morning and it was coming out at an alarming rate (I’m not cold capping). It was beginning to resemble a creepy old man with a sweaty combover so I couldn’t bear it any longer! 
I’m surprisingly ok with it - have gone down to a #2 at present but may go down to #1 tomorrow!
@jnra im sorry to hear you’re having such a hard time with EC. Is it anything in particular or the general crappiness of it all?
BTW, those of you already on taxol / about to start - have you looked into or been told anything about compression or cold gloves / socks to try and avoid neuropathy? I’ve found some articles on it but have heard nothing from my team about it. I’m desperate to avoid neuropathy symptoms once I switch over to taxol.
2 Likes
I’ve been researching neuropathy prevention quite a bit. A friend’s husband has it post taxol chemo and it’s not nice at all and very difficult to treat.
I’ve got my Suzzi ice kit ready but still have to discuss chemo access. I also take Vitamin E, B6 and Omega 3s. as they are meant to help with prevention. (to be honest I’d eat elephant droppings if I was told it may make this journey easier!) It’s always a good idea to ask your team first though.
There is more definitive research to be done but I reckon if they are spending money on looking into it there must be a reason. There seems to be quite a bit of anecdotal evidence on here too.
Is anyone else icing their hands and feet?
2 Likes
My hair started shedding on Thursday. 20 days after the Docetaxol. Shampooed twice and with each one there was more hair in the shower tray and less on my head. Conditioned it and had a handfuls. Enough hair left to go for chemo the next day uncovered.
Washed it again on Saturday. Looked stringy as there was less of it! Shed more than Thursday. Looked down and had a very hairy tight foot and a hairy chest. Took ages to rinse it all off. I think I emptied the hot water cylinder. Yesterday resorted to a honky tonk hat when I went to do the food shop.
This morning washed it again as there was lots on my pillow. Worst shed yet. Came out in handfuls. Looked like a birds nest by the plug hole. Didn’t want to look in the mirror straight away. Then went in bedroom and mirror on wardrobe reflected back of my head in mirror on chimney breast. Spotted bold bald patch. I look like a monk! Sported a cap all day. Bet it’s full of hair when I take it off. My jumper is covered!
Planned to brave the shave tomorrow. Wig lady said to start with a number 8 else it’s spiky and uncomfortable. I think come tomorrow there will be more bald patches than hair so it will look daft! 
4 Likes
Thank you for making me laugh… if we didn’t laugh sometimes I think we’d all be in tears.
Can totally relate to that, I thought I had hairy gloves on in the shower.
Hope your braving the shave goes well for you. 
1 Like