Hi all, I’ve not posted for a while but been lurking. I started chemo at the end of October so feel more like a November team!
I’ve had my operations (needed 3 culminating in a mastectomy/ reconstruction due to margins). I’ve done 12 rounds of pacli and started EC last week. I have another 3 EC which should be fortnightly but it depends on bloods. It seems never ending. Hoping to finish in March and then will be having the osteoporosis infusions and 5 years of hormone blockers.
I was sick on pacli even with a reduced dose so they preemptively reduced my EC dose and prescribed a whole raft of anti sickness meds. The tiredness is off the scale here (day 5). I’m also doing filgrastim (7 days with each cycle) and dealing with the aches from that.
So lovely to see some of you complete chemo and hear of others who are nearly there.
Welcome @brambles1 ,gosh that sounds like a lot of chemo … no wonder you are feeling so tired at this stage .
@hlc , I think I remember someone else saying that they couldn’t cold cap on paclitaxel… I’m on the three weekly one and my hair just fell out after cycle 1
@flojo I know where you are coming from … I’m still working albeit not going out on bookings but still doing all the office stuff and my brain is so tired … So I’ll join you in feeling flat … add in husband is ill in bed so I’ve been driving 40 miles a day to take my daughter to and from school and cooking, cleaning etc … and I’m Blimmin exhausted . I’ve got to do the school runs tomorrow as well as go to my oncology and bloods appointment
@arty1 im afraid my scan was cancelled due to the storm! I’ve been like a ball of stress, noticing every pain. Was on phone to oncology team yesterday and they are trying to get it rescheduled asap. Fingers crossed it will be soon and give reassurance wow- I’m sure you are knackered!!
Do you think we will ever feel revitalised again?!
Thanks @arty1 it’s been a haul. 3 to go. I am 7 days in from EC#1 and have managed to get up today. The past few days I’ve been for a very short hobble using both walking poles as I’m determined to keep moving. I hope I get a bit of respite before #2 next week. My husband has had to care for me as I have not been able to get up or cook for myself for a few days. Hoping to make a few easy nice meals for him to thank him whilst I’m stronger.
I have been cold capping throughout (paclitaxel and EC). Although I’ve had my hair cut short from waist length, I kept all apart from a small spot on pacli. I hear EC is harder and tbh am dreading it thinning. We will see!
I’m having trouble administering my filgrastim injections and am waiting on a call back from my nurse. Today, it seemed that the entire liquid flew back out when I withdrew the needle. I’ve also had beads of it emerging. I’m going by the instructions that came with it and injecting into opposite sides of stomach. The last thing I need is a hold up because my immunity drops due to my crap technique!
It sounds like you have a lot on @arty1 and I wish you well. There are some times in life that we will look back on with amazement for getting through eh?
First docetaxel tomorrow so I’ve had 16mg of dexamethasone today and whilst I feel fizzy, I’m not miserable when compared to EC with which I only took steroids during and after, so beginning to think that my low mood was the chemo itself. Hoping Docetaxel doesn’t have the same effect, though I know it can have other horrible side effects. Well excited about my post treatment scalp cooling being reduced from 90 mins to 20 mins! Can’t complain though, my hair did ultimately decide to stay through EC, so its been worthwhile. Always great to hear how you’re all getting on. x
@brambles1 it’s always something in this house tbh how fast are you injecting the filgristrim?
@sam how bleepin frustrating when you’ve prepared yourself mentally for it only to be cancelled .it just heightens the anxiety …keep on at the hospital to rearrange that scan
@flower5 I guess it’s entirely possible that certain chemos may have that effect ?
Steroids can affect mood though . It’s hard to know what’s causing it … see how you feel post chemo steroids x
Thanks @arty1 I have my nurse a call about it and she was happy. I’m an old hand at injections as my youngest developed t1 diabetes aged 7 so I have done many injections and canulas.
Injecting it slowly, leaving the needle in for a slow count to ten and withdrawing. We’ll see what happens today. I’m going to double check on YouTube as there are a few videos. The meds spitting out has only happened once and from the pain in my hips and legs there’s obviously a load in there doing its job. Keeping me on my toes for sure.
@flower5 all the best with your first doxatel. I value your comment about keeping your hair through EC and continue to live in hope of that. As I reach the end of my long chemo treatment I’m starting to think about life after and returning to work. Working with kids, I am concerned about wigs. I’ll just have to carry on taking one day at a time and take the help to deal with whatever happens.
@brambles1 I wouldn’t worry too much then x
Especially as you are an old hand at injections … It must be stressful having a child with diabetes . Always a worry …
Thanks for the mention @arty1. You sound like things are a bit too full on. How did your bloods and oncology visit go?
I’ve been better this time on the reduced dose of Docetaxel although yesterday and today I developed terrible constipation, which I haven’t had so far. I’ve been dosing myself with Laxido but feeling quite sorry for myself as I’m bloated and sore. Literally a sh*t show! Can’t wait for it to kick in - off to bed shortly to lie down.
Do take care everyone. It becomes harder to keep going - or it does for me! I am waiting to see what happens to my hair - cold capped with EC and lost quite a lot, and for the first Doc, but not the second. Currently, my hair is growing back, but I’m not sure if it will go again in the next few days…will see! I’ve given up caring at the moment.
@flojo - I had such awful constipation after cycle 2 that it made giving birth look simple … the laxido does work though when it kicks in … try two sachets a day and move up to 3 if nothing happens x
All
Ok … I had my last chemo today ! No bell or celebration on our unit… I’ve been shopping again and bought yet another wig !
Ahh I bet you feel so relieved that you have finally finished chemo . That’s such ashame that they don’t have a bell or any way of you having a little celebration for finally finishing that part of your treatment!! At least you treated yourself to another wig . I literally can’t wait for my own hair to grow back! I have found the wigs really uncomfortable & I feel like everyone knows it’s not my own hair . Is your treatment complete now or are you having radiotherapy? Xx
Love that bench slapping emoji @naughty_boob … I did it … The biggest wimp in the world … faced two of my biggest fears … surgery and chemo … … if I can do it … anyone can
@shelbylou81 Wigs are no substitute for our own hair I agree … although I’m enjoying not having to dye it every three weeks …you’ll be surprised …. Not everyone will know …
I went for a heart echo last week in cardiology and the HCA who weighed me complimented me on my hair colour x I had to tell her it was a wig !
No I’m not finished unfortunately… I have ten months of 3 weekly herceptin jabs that I have to return to day unit for each time x
How many more do you have left @flojo ?
I did a wigless celebration pic instead - I went to chemo with no headscarf etc …I’ve just noticed a little bit of fuzz on my head too and also some stubble on my legs
Well done! You look chuffed! I hope you are feeling ok. My last one is two weeks today - not that I’m counting! It’s gone surprisingly quickly. xx (sorry posted twice! Brain not working!!)
Wow! congrats @arty1 love that you slapped the bench, lol. And your new wig is fabulous, I love it and suits you loads!!
Aw
How’s everyone doing today!?
I’ve just had my first EC after 4 Docetaxols…… I haven’t got a picc so the poor nurse had to hold the syringe for an hour or so but it’s a way quicker session that the Docetaxol!!! I started at 1 and out at 2.30!! So that’s a win!! I’ve felt fine since, as I was really dreading starting a whole different drug.
wow- I’m sure you are knackered!! 
how fast are you injecting the filgristrim?
. That’s such ashame that they don’t have a bell or any way of you having a little celebration for finally finishing that part of your treatment!! At least you treated yourself to another wig 
. Is your treatment complete now or are you having radiotherapy? Xx
… I did it … The biggest wimp in the world … faced two of my biggest fears … surgery and chemo … … if I can do it … anyone can 
