Good evening everyone, hope you’re all doing ok and those who have been poorly are coming out the other side?
I’ve completed three rounds of EC and I’m starting weekly paclitaxel tomorrow (1hr infusion with no injections) I just wondered if anyone had advice or could give an idea of what to expect x
Ah yes, I remember you’re my EC-T twin. I’m starting the Docetaxel tomorrow Similar to pac I think but bigger dose less often…. I’ve started on the pre infusion steroids today . Good luck to us! Xx
Did you get your PICC line fitted by the way?! I decided to get mine in the end and after all the worry, I’ve not regretted it! x
I did, had it fitted today. Good luck tomorrow. Hope it goes well for you x
And for you too! Re PICC It’s nice not having to have extra needles stuck in you. It took a bit to get used to and settle down but now all’s good, please ask if you have any PICC settling in tips!! x
I did 3xEC and now half way through 12 paclitaxel. Good news is the weekly pac hits a lot less on the fatigue front which makes a massive difference. Plus I’ve not had filgrastim either which is another win. No issues with sickness either. My main issue is dryness - dry skin and dry eyes and even dry nose. So I’ve been moisturising lots, using eye drops on bad days and got some saline gel for my nose as it lost all hairs and the dryness was making it run loads. Seems to have settled down now so only use the gel spray and eye drops occasionally. I have however lost most of my eyebrows and eye lashes while on pac, but have just gained some fuzz on my previously shiny bald head (I didn’t cold cap) so fingers crossed that means the hair loss has reached a maximum. I’ve not had any issues with neuropathy either - I’m wearing compression socks and gloves so hopefully that’s helping.
Mines also a 1h infusion but I’m there for about 2.5-3h generally - get steroids and piriton through the line first with 30min wait before infusion starts. The hour rarely empties the bag fully so usually an extra 10 mins to make sure the last drops are out plus another 10min saline flush before they wrap up my PICC and send me on my way.
It takes a lot longer for the actual appointment but it seemed easier for me in terms of side effects. I used the Suzzipad frozen gloves and socks plus size XS surgical gloves for compression (my hands are very small so actual compression gloves aren’t tight), I used the polybalm nail treatment and took the Suzzipads to the hospital in a picnic cooler bag with ice packs. I downloaded films to my iPad to have something to do while there and usually got MacDonalds on the way home. I think chemo in general is cumulative so the first few rounds felt quite easy but the last couple I had a slightly itchy reaction during the infusion and one of those they had to pause and restart it (that was the carboplatin part though). My feet were quite numb almost from the start which I very much played down as I didn’t want a treatment reduction, hands not much but I had this weird loss of strength thing in my arms which seems to have gone now. My feet are still fairly numb but it’s not unpleasant and doesn’t affect balance etc. I usually had one day per week where I’d be really exhausted and then a day or two later wake up feeling much better like it was out of my system. Definitely way easier than EC for me. I’ve also only worn open toe sandals with socks or slippers that look like snow boots since starting chemo as pressure combined with the drugs can cause damage / loss to toenails, I also wear cotton gloves outdoors to protect my fingernails from UV and surgical gloves for dishes / cleaning. I did need GCSF injections for some of mine and had one delay and one skipped for low neutrophil count. Hope it goes really well tomorrow and you’ll be out the other side asap x
Hope it goes really well for you, was much easier than EC for me and hoping you have similar experience x
Thank you, that’s what I needed to hear! (Although, never any guarantees as we all know! ) And positive vibes back to you too xx
Thank you for the positive responses. Fingers crossed it’s easier for me too. @kcim what saline gel do you use? I have the same problem with my nose at the minute. Good news about the hair too. Hairloss is what I’ve struggled with emotionally. It had started to grow back and then at the weekend had a massive shedding again. Not shiny bald all over but some bald patches. I shaved it again yesterday to try and make it a little more even. My lashes and brows have thinned but I did have eyebrows tattooed before my chemo started so if they come out totally they’ll still be a little something there! X
I’m using NeilMed NasoGel (from Amazon) which seems pretty good. I have just enough eyebrows left to pass muster and my glasses hide my patchy eyelashes thankfully. Well done on being prepared with the tattoos!
For patchy eyebrows, I am using Wonderbrow. It’s definitely helping the optical illusion.
Still waiting here for my first Docetaxel ,was due at 9.30. Oncologist hasn’t booked any meds for me, has me down for 2 weeks time. Chemo suite has me booked in for today. Feeling anxious, but determined not to leave without treatment, can’t have any more delays!!!
Oh no! Hope they sort you soon x
How frustrating! Hope they get you sorted soon! If they can’t manage it today (think meds are often made up to order) then at least push them to get you in later this week!
All good now @kcim @cornwall1234 they sorted it out and I got started only about an hour late. So far so good, and so nice without cold cap!! How did yours go @cornwall1234 ?
Great news! All good for me. Was there about 2.5hrs total. I feel ok now but almost waiting for a massive dip like with EC. One down, 8 more to go x
How is everyone doing? I don’t have much to report, in some ways I can’t believe that chemo is done but also worried I might need more after surgery. Had quite a walk on Wednesday while waiting to get my car fixed and sheltered from the rain in a little local museum… I was watching a video about the the town’s history and a man came over, looked at me and said under his breath “very realistic!”… he thought I was a tableau! He was very apologetic when I turned out to be real! Lovely warm sun as I was walking back and warm enough to sit outside while I waited for the garage to finish so I’m looking forward to spring (other than all the medical stuff). Hope everyone is as well as possible, thinking of you all x
Hello everyone,
Haven’t been on for a while so am catching up and have missed a few things!
@Kara i see you’ve been in hospital and had an awful time, I hope you are feeling better soon.
@cornwall1234 ive had a pic line in the whole time and not really had any problems with it and it seems much easier than cannulas from what I’ve seen in the unit. Can’t wait to have a shower without a cover on it though!!!
@zebramoon it must be good to be done with chemo, although appreciate it’s the worry of what comes next.
For everyone else, I hope you are all just getting through this shitshow with the least possible side effects, issues and looking forward to spring!
I have one more paclitaxel to go ( in half term which is highly annoying:roll_eyes:) I am on dose dense so the infusion takes 3 hrs plus pre meds etc so I normally get there at 11 and by the time i leave it’s 3.30 just makes a longgg day. Then 2 days later I get bone/muscle/joint ache for two days where I struggle 
so I’m looking forward to finishing chemo although then it’s on to the next stage whatever that may be…. I have an oncologist appointment in half term too to discuss my pet/mri scans ( worried about lesions on my spine so they are repeat scans ) , starting of radio, and all the tablets/injections I’m going to be on. My poor boys are not going to have their best half term:roll_eyes: however we are going away to Dorset for the weekend as it’s my youngest birthday ( do have to rush back on the Monday morning for chemo though:rofl:).