September 2018 Chemo Starters.

[Galligirl]

GabyF - can’t remember the last time I really slept properly either...I just toss and turn...drift off to sleep then wake with a hot flush! Or freezing cold cos I have shoved all the duvet off....I now just sleep when I can and hope it will all sort itself out later! I would just love to wake up refreshed and ready for the day....

Been aching all weekend following T last Thursday.....every muscle and joint in my legs particularly....should probably go for a little walk but too tired 🤣💤

[GabyF]

Hi everyone,

Here's my first middle of the night post - I simply can't sleep!! As soon as I got in to bed, my legs started twitching and since then I've had several hot flushes, but basically I'm just wide awake 😡. I can't even blame the steroids tonight. Had a good snooze after lunch yesterday, maybe that was a mistake? I am a bit worried that my sleep has generally become so disrupted and irregular, that even once I come off the chemo drugs, I might continue to have problems. Can't remember when I last had a night when I didn't wake up at least once. Anyway, I shall now try to lie down again and see what happens 😁 😴.

Hope no one is reading this right now and that you are all fast asleep!

Gxx

[Aley]

Thanks GabyF. Sounds like you’ve had a lovely couple of days and the creative writing sounds amazing..done most of my Christmas shopping online this year-such a godsend! Feeling a bit better now thanks. Thankfully last FEC! T just before Christmas so I hope it doesn’t wreak too much havoc!! Going for an easy one this year-M&S goodies! I treated myself to a kitchenaid which was delivered today, so I’m looking forward to making bread and treats tomorrow 🥖 enjoy the rest of your weekend all x

[GabyF]

Evening everyone,

It's my left eyelashes and bits of my right eyebrow that seem to be going! Still got a few bits of hair on my head sticking out at odd angles, so yes, I'll also be a bit of a stunnner for Christmas 

I've been quite lucky with Paclitaxel this week: virtually no side effects except for feeling a bit tired and breathless, so I've taken advantage and had a couple of fairly busy days - meeting friends for tea, wrapping presents, and attending a university open day with my lovely daughter. It's been nice.

I also started doing some creative writing this week, just gathering up thoughts and ideas that have been floating through my mind over the last few months, and combining these with a bit of family history which I have been dabbling with. I've really enjoyed this - something to keep my mind busy, without any particular aim. I don't know how long I will keep it up for, but for now it's something to focus on and to stave off boredom. 

Aley: Sorry you've had such a rotten couple of days. I really hope you're starting to feel a bit better.

Have a lovely Sunday, everyone.

Gx

[Aley]

Thanks ALittlePixie,
Feel a bit better but bloated, had some toast, coffee now tea..so far ok..this has totally caught me off guard as last cycle was so good! I’m anxiously checking my left eyebrow as I’m sure it’s thinning..hope you lovely ladies have a good weekend 💖👍🏼

[ALittlePixie]

Hello!
Thanks Kath, that's good to know. I was the same on FEC with all the drugs. The anti sickness ones actually made me feel worse so I used to go cold turkey and risk feeling sick than take the drugs half the time!
Lisa - isn't it weird that it's just the right eyebrow for now?!?! I'm not pencilling them in yet. My eyebrows are quite fair anyway so unless people are really up close, they probably wouldn't notice too much. Plus, my glasses help matters. To be fair, they're too busy staring at my bald head 😂 I am getting some white fluff on top of my head tho which is quite amusing.
Ktk - I've not been able to wear my lenses since chemo cos my eyes hurt too much. I've two pairs of glasses so I wear my bigger ones to disguise my weird eyebrows 😂
We really do need a sense of humour having chemo and all it entails don't we xxx

[ktk]

I usually wear contact lenses with glasses as a back up but prior to chemo I went and got a new pair of glasses that were big enough to cover my brows. Although I have no brows now you can’t even tell!! Two months after last chemo I am just getting some regrowth....everywhere!!! Kx

[Lisa-T]

Hope you are feeling better today Aley 💪🏻❤️

My right eyebrow is worse too ALittlePixie - although it’s not gone completely yet. Are you pencilling it on ... I’m not sure what I’m going to do when they do go 😬 Finally seeing some sign my head hair is coming back whoo hoo ... although it is coming through white 🙈🤣

Hope everyone has a lovely weekend ❤️ Xx

[Kath1977]

Morning Alittlepixie

I'm not on both drugs just the pacitaxel and I am only given steroids iv as a pre med before chemo.

With the fec I had so many tablets to take which I hated, anti sickness and steroids but with pacitaxel it is all done IV.

Hope that does help.

Kath xx

[ALittlePixie]

Morning everyone
Thanks Jacqs, that's really helpful to know. I'm not sure yet if I'll be on both drugs. I was wondering what they do re the steroids so that was really helpful, thanks. As to the eyebrows/lashes, my right side is bonkers. I think I have 5 hairs left on the right side and a full brow on the left 😂
Aley - I hope today is better for you and you're feeling more human. Really hope the SEs ease for you quickly x

[Aley]

Hi Jacqs
Thanks. Feeling a bit rough tbh..vomited about an hour ago and bit of a headache. Rang chemo unit for advice...they said ring us or 111 if you need to..sailed through the last one so this has caught me by surprise..didn’t help that the chemo nurse was from another ward and didn’t really know how to use the machine!
Sorry random question anyone had intra-mammary nodes involved?

[Jacqs]

Hi A Little Pixie - each hospital might differ but on the weeks that I only have Paclitaxel, I only have steroids as part of the pre-meds on the day.  I don’t have any more to take home & it does help.  Every 3rd week when I have Carboplatin & Paclitaxel I still have steroids for 3 days following chemo & they are the pits.

I agree with Gaby that the SE’s of Paclitaxel are so much more manageable and honestly having it weekly makes it count down a lot quicker.  

Only problem is, think we’ll have baldy eyes for Xmas. Maybe need to rock the 😎look for a while.

Kath - i’ve got a central line & it’s been such a boost.  My veins were rubbish from day 1, so had to have this fitted cause they couldn’t even get a picc line in.  Does make life easier.

Aley - glad to hear you’ve had your last FEC & hope the next few days are kind to you.

Enjoy the weekend everyone.  Sending hugs to you all xx

[Kath1977]

Please keep in touch with me and let me know how you get on.

Kath xx

[ALittlePixie]

Thank you so much Kath. I'm so pleased you've managed much better on the Paclitaxel. I was very much like you on the FEC and after this horrid T, I was really anxious about having something weekly.
Hope everyone is OK. Sending lots of love xxx

[Kath1977]

Please don't be apprehensive.

I'm on weekly pacitaxel and I have coped so far.

I have 3 kids and haven't been in bed one day so far.

Am doing school runs etc, the side effects I'm getting are hot flushes and aches and pains but is all manageable and doable.

When I was on FEC I was bed bound for weeks and so so ill. So much so they actually cancelled my last FEC as felt it was making me too ill.

Sending you positive thoughts

Kath xxx

[ALittlePixie]

Thanks so much for the Gaby. I am feeling quite apprehensive about having it weekly, so I hope I'll manage better on that. So....we still to take the steroids?! I really hate them!
Good luck for tmoz Aley. Hoping the SEs aren't bad for you and you sail through this last one X

[GabyF]

Little Pixie: I have found weekly Paclitaxel quite straightforward. My SEs usually only last a couple of days and have included tiredness, slightly loose bowels, slight tingling in the mouth on day one, dry eyes and skin, hairloss, problems sleeping (but that's probably from the steroids), and just generally feeling off colour for a couple of days; also my neutrophils have crashed a couple of times, but that may have been the carbolplain and/or an accumulative effect. I've not had any nausea or vomiting, no serious aches or pains. It's really quite manageable.

About the hair: I've now lost virtually all the hair on my head - just keeping a few bits off fluff to help keep my head warm; it's cold being bald! Also lost all the hair on my legs and under my arms - nice SE that one!, eye lashes and brows have defintiively thinned as has my pubic hair (bit of an odd lokk that!). The only hair I've kep is on my forearms and I'm hoping that might still go 

Hope everyone is having a reasonable week. I was up 3 hours last night, bloody steriods! Am feeling ok otherwise though, which makes a nice change.

Gx

[Aley]

Thanks for all the comments re:nails I’ll be hunting down some silicium nail polish in the near future💅🏼 My BCN rang me today to let me know that my FISH result came back and I am HER2-..I have read that as the initial test was inconclusive I should maybe ask for a retest? Has anyone heard anything like this? 🤔 I might contact my oncologist to ask advice..
Has anyone suffered from bloodshot, dry eyes? My Gp gave me 👁 drops but I’ve noticed they’re particularly bad today..Last FEC tomorrow ladies..here’s hoping the SE’s are kind to me 😝

[Kath1977]

Hi Jacqs

Was all fine, have got a picc line in now so much easier and no stress with needles.

Came home and slept though as pre med drugs knocks me out.

I'm in single figures now which I am chuffed about only another 9 weeks to go.

Regarding the nail colours, my toe nails have gone black but finger nails are fine. Had my nails done yesterday as my sister owns a nail salon.

Had red Christmas ones, they are lush.

Since having t my eyelashes have gone and my eyebrows are patchy and thin.

Hope you are ok

Sending you big hugs to you and everyone.

Kath xxx

[kathyx]

We were told to wear nail varnish containing silicium on both hands and feet to protect the nails. We were told to continue for 6 months after treatment.