Hi everyone, I have the dreaded tongue ulcer again 🙁 and back spasms so in bed early after 2 hot baths! Hoping for a good night's sleep! 🤞 But at least I know its its last time! I think I'll ring the bell when I finish the injections (filigstram) always seem low at this point - spending 4 hours on hold to dwp doesn't help they answered once and hung up! SSP ends soon 😫 hope everyone has a nice evening nearly there ladies 😘
Day 1 Darling
BY midday mouth started slight inflammation taste gone. Used mouth spray. Good job I had a bacon sandwich at 7.30 😀. Aches by 1.30 took paracetamol didn’t want to start codydomol yet will take tonight after injection. Feet hurting. Accept this will go on. I pick up on day 5/6.
4 hrs sleep last night 😩
How are you all doing with SE
🌲🌲🌲 goodby Yew
First Herceptin subcut injection today. Stung a bit and I am sitting a bit wonky to avoid pressure but tolerable. Just 13 more to go!
chemo went well only 2 of us there in 2 seperate rooms all the other 14 people treatment delayed so guess I’m lucky they let me progress.
Yes madcatlady now drowsy lets hope steroids let me sleep.
Poor you, Lady34 - steroids as well as the early morning chorus; it's a real double whammy! ☹
Here's hoping the chemo went okay this morning. I bet you were bleary-eyed through it. But, it's another one done.
Ah rizzer, hope your daughter enjoyed her birthday and you celebrated in style!
We may have cancer treatments coming out of our ears and the coronavirus to contend with, but we can still party with the best of 'em.
literally Hi! It’s 4.17 am chemo today at 10.30
Dexamethasone bleedin steroids keeping me wide awake 😩 birds morning chorus started.
Perhaps they sing me to sleep 😴
Awww thanks B4. We were so lucky to have the lovely weather for my girl’s birthday ....and what a way to celebrate the end of your chemo: with a beautiful blue sky and warm sunshine. I hope you savoured the champers! Yes, I’m not far from the Kentish border 😉 Xxx
All these lovely positive posts are cheering me up ☺️ may even have a little glass of red later! Not sleeping great but otherwise coping ok! We are almost there 😀
wishing your daughter a very very happy birthday. We opened a champagne as well yesterday... celebrated by chemo end. It’s a sense of achievement for sure.
i think among all of us here I am closest to you (Bromley), I had my surgery in Maidstone hospital though.
same as you, but I will have 5 days of radio and the aromatase inhibitors - Letrozole for me as I had slight early menopause at 48.
loads of love and best wishes to you😘😘
we are chemo buddies or call us chemo sisters, once this is all over we must meet up to celebrate together after all we have endured suffering together supporting each other...
I think the lips thing is a SE. I found my skin went a bit odd - kind of soft and a bit shiny. Hard to explain. The tingly pins & needles is definitely a SE. No answers to what to do for that it seems. Hopefully it's coming and going (and will eventually go for good). My fingertips seem to feel as though they are made of plasticine and can be a bit numb. The joys of peripheral neoropathy I guess 🙄
Frenchie it’s only just started today and mild. Frenchie the coincidence of the dates is one of many in my life. Who knows what we have to face in this life? We journey on....
Yes, tingly fingertips is a SE of taxol. Let your team know about it. My doctor said if it gets too bad it can be hard to reverse it afterwards (but don't worry if it's mild).
Ah Lady34, your diagnosis and MRI both sound really traumatic. What a horrible coincidence re the date of your diagnosis. I had my mammogram on 4th November when they told me they had seen something suspicious.
Silvertong, sorry they didn't prepare you better for the MRI. I found the same when I had my PET scan.
Same same hospital empty ghostly. Your lips is this a SE. The tips of my fingers a bit tingly pins and needles today. Is this a SE effect? Anyone got this?
I had an MRI last week. It was really creepy wandering through the deserted hospital corridors to find the department. No-one had told me what to expect, especially that I would be lying on my front. I wasn't wearing a mask but probably just as well as I found out that my lips don't press together very well anymore so I was a bit drooly!
Meeting up? Finishing treatment? Birthdays? Champagne? Blimey we’re movers and shakers in this group. Love us 💕
Frenchie I was also diagnosed in November the 5th to be precise. It’s my mums death anniversary my worst day of the year and there I was in the same wing of the same hospital my mum passed away in!!!
I was in shock hearing my diagnosis and treatment plan. I’m having my last T on Tuesday.
Got a call from a different hospital yesterday asking me to go for an MRI I went but was shaken scared. 2 nurses attended me. One with mask one without ? In Corridors some staff masked others not. I had my home made multi-layered mask on even inside the mri scanner?
Just dread having to go to hospital buildings! Got bloods Monday chemo Tuesday. Got pre surgery appt on 21st then op then probably radiology not been told this yet but will have 3 weekly anti body infusions for 6 months.
So yes will feel relieved on Wednesday no more chemo but got a way to go yet.
Enjoyed my my best day gardening listening to birdsong in the sun.
Hugs to all 🙏🏽💕🙏🏽💕🙏🏽💕🌲👍🏽🌲👍🏽🌲🍀🌲
Wow! Well done to all you lovely ladies reaching the end of treatment! Amazing! And a belated happy birthday to those who have had birthdays this week.
I've still got quite a long way to go! Between 5 and 8 more weekly doses of paclitaxel, then surgery and radiotherapy. And I'll not finish herceptin until March next year. But I'm remaining positive and taking things one day at a time. Really hoping the awful coronavirus doesn't impact my treatment. I started this journey at the beginning of November 2019 so it's already been 5 months, so have already come a long way and got through a lot.
Lots of love and good wishes to you all xxx
Hey b4 forgive me for not congratulating you sooner on finishing 🥳. Flipping well done!!!! I imagine it hasn’t quite sunk in yet? Sending lots of love 😘
I drank half a bottle of champagne yesterday, for no reason really other than the fact it was in the fridge left over from my birthday - but of course it’s my daughter’s 3rd birthday on Sunday..... so that was why, obviously! I don’t know if anyone else has felt the need or not, but for the record, paclitaxel and booze were not much fun together in my experience...not bleuergh but not good for fatigue next day 🥱
Yeah, I’m bang up for a meet up when this is behind us...🍹
2 x more paclitaxel, 5 blasts to my chest wall and then .....tamoxifen, some other combo of bizarre sounding drugs and monthly tummy injections of whatever the drug is that switches off your ovaries...zoladex maybe?
I had 2 lymph nodes with macro mets and am Er and PR positive Her2 Negative
Had 2 ops already, so with the wind behind me I’ll be out of active treatment week ending 1st May Xxx
Well done on finishing chemo, and a blessed rest before radiotherapy will give you chance to get your breath back 🍾
No, my birthday isn't until July. It's just I found the lump on my birthday last year, then got diagnosed on 8 August, and had two ops before starting chemo in Dec.
I second that about meeting up when all this is over!! 🤗 I can't tell you how being able to share all this with you lovely ladies has helped keep me going.
B4 that is fantastic news! What are your next steps? I'm aware that we are all at different stages. I had mastectomy with DIEP reconstruction 12th November so this is adjuvant chemo for me. Then I will have 15 radiotherapy treatments to the chest wall (not axilla because the one positive node wasnt extra capsular). I need 15 as they can't give 5 at a higher dose through the reconstruction. Then because I was Er + I will have tamoxifen and probably ovarian suppression of some sort as i am 51 and either pre/ peri menopausal
I was given 8 Dex a day starting 24 hrs before chemo and for 3 days. Oncologist also prescribed an extra 2 days (2 per day) to try to help my jaw and joint aches. I’ve been sleeping 2-3 hrs a night this week and don’t seem to be able to catch up in the day. It makes for a Very long night. But I just stick headphones in and listen to Audiobook or podcast. Last two times my sleep started to settle after a week or so. Hope you get some sleep soon x
Interested to hear others have had steroids via IV, with no ill effects I have spoken to a nurse who said it should leave my system after a couple of days but some people are more sensitive.
I just want some reassurance. I will speak to my oncologist on my telephone appointment on Tuesday.
I keep forgetting to ask how much DeX they give with weekly paclitaxel but it definitely gives me more energy for s couple of days and less sleep, but I don't suffer too badly with insomnia. Took a temazapam Thursday night after chemo but not last night. Slept about 5.5 hours both nights which isn't enough for me. I know I will start to crash by tomorrow with fatigue and pain. Just enjoying a couple of pain free days and energy to catch up on cleaning, ironing, a bit of paperwork etc. I have worked out my good days!
Yes, 2 more 🤞. How about you? How many more to go? Struggling to remember what stage everyone is at x
i haven’t slept all night either possibly due to steroids as well! Though kept tossing and turning with my eyes shut!
I think sometimes steroids can be really bad, but it does not last that long with one IV dose (like we have with our paclitaxrl).
2 weeks more to go for you, I guess??
best wishes and 😘😘
Yes I have my steroids IV with the paclitaxel. They do five me some insomnia but not as bad as you seem to be getting it. Why don't you speak to your team about it? I think Rizzer has her chemo without steroids (one of the ladies on this thread does), but there are very good reasons why they are given. You really need to speak to your specialist chemo nurse about it if you are suffering this badly x
Has anybody ever had their steroid by injection? The only time I had this was on my last chemo and I am sure that is what has caused this awful insomnia which has now persisted into my third week. I am sure it is the injecton of two days' worth of the tablets that has caused this. I also feel wide awake even tough my body must be exhausted. On previous treatments when I had the pills only had insomnia for a couple of days. Even a sleeping pill I took last night hasn't worked. I am sure the injection is the cause. I am really struggling with this now.
Was it your birthday too Madcatlady?
Im nearly ending my day with mixed feelings as finished the chemo today. Had my CT in preparation for radiotherapy which will be for 5 days in May.
A month to chill in solitary confinement as I call it 😂😂
love to all the lovely ladies in the group. Hopefully one day when the treatment is completed and Covid period goes away we might be able to meet to put face on names!
Wishing u a v v v happy birthday, It’s so nice to have finished chemo... congratulations!
you finished your chemo on your birthday and last year in September I was diagnosed on my birthday, strange are the ways of nature.
I send you all my good wishes and hugs, may God shower all his love and blessings on you.
Well done Adele and Happy Birthday. Took my last dose of steroids today and so hoping for a bit more sleep soon ! Unfortunately I’m starting with the achy joints and jaw which seem to get me with Docetaxel. But it’s the last one. Yay!
Sleep has eluding me too - 3 am always seem to be awake! I just can't turn my brain off! I love audio books I just try and catch up in the day x
Adele congrats on your last one and blessings for your birthday lovely you got pressies and got the chemo over with. I’ve got my last next Tuesday 7th. Just want to get out of the other end of this chemo tunnel.
Mc22 also couldn’t sleep several days. It’s the cocodomol that eventually gave me an hour or two but yes anxiety I’m sure wouldn’t let me switch off.
I’ve also had a horrible taste in my mouth can’t taste much after a few mouthfuls tastebuds go bland.
I’m so looking forward to tasting again. Will end up fat from gorging myself on all the food I’ve missed.
Meanwhile still rely on apples celery oranges.
Stay safe stay strong 🙏🏽💕🌲🙏🏽💕🌲🍀
Happy birthday Adele! Good way to celebrate with your last chemo 🤪.
I have mixed feelings about my next birthday as last year I had some really fun celebrations and 2 weeks afterwards found my lump and my world came crashing down around me.
I am so thankful for every dose I'm getting at the moment. Who knows what next week will bring.
Mc22 I was going to suggest unwinding by reading something light before you go to sleep. That always helps me switch off. Sometimes a few nights on the tablets just get you back into the habit/ knack of it x
Happy Birthday 🥳 Adele and congrats on getting through chemo ❤️. I can understand why you didn’t want to delay - having had my birthday earlier in the year, it’s not like I had a blast! I hope you get a chance to have some fun soon...and big hug for getting thru’ Xxx
Ah, I'm so glad to hear he'll be able to come home soon. I'm sure that will help as you've been anxious about him too and having to stay apart.
🤞 for some better nights to come.
Happy Birthday! 🍾
How great you still got to see your daughter and have come home to lovely things!
Congratulations on finishing your chemo! 🎖
It may feel bittersweet and not what you expected, but hey, you've done it, and that's brilliant. And fewer radiotherapy sessions than originally thought were needed has got to be good.
Chemoland creates strange obsessions...food delivery is a very valid one, so don't worry!
Ah madcatlady, thanks for your reply and suggestions which are much appreciated. Funnily enough my daughter dropped off a lavendar spray yesterday. Also some Bach Rescue Remedy which I haven't tried yet for anxiety. I was relieved to hear you say the horrible taste usually goes in the third week. I am now a day into my third week so fingers crossed. Thank goodness this will be my last and the most horrible.
We have a big garden so once I get this sleep problem sorted and I am not so knackered I would like to startgrowing vegetables and get into gardening a bit more. An audio book also sounds like a good idea.
I think I might have to reluctantly take a tablet tonight but do hope this problem resolves itself soon. Hubby can come home next Wednesday so at least that will be an end to my solitary confinement.
Please don't feel you're moaning. You must be so miserable and worried about not sleeping. The steroids are a necessary evil but they really knock everything for six sleep-wise.
My youngest daughter struggles with getting off to sleep as her brain just won't seem to shut down. We've tried all the usual sleep hygiene tips but they don't seem to quell the racing mind, although a hot bath is the most useful.
Lavender: a little bag under the pillow, or you can get a spray you put directly on. Lush do a lotion you put on your arms which is called something obvious like 'Sleepy' which we've tried with some success.
The best thing seems to be to link the above with deep breathing then counting and blowing out, or trying to focus upon happy memories such as a day at the seaside; recalling the warmth of the sun, the smell of the sand, the colours of the towels, costumes etc.
My sister swears by peppermint tea, audiobooks, recreating favourite recipes, and going through Harry Potter and trying to find characters from A-Z. (Whatever floats your boat!)
I'm sure we must be allowed out in our gardens, so try and get some air and a mini jog every day if you can. (Do you like gardening? I calm right down when I'm out there; I can feel my breathing slow and my mind empty out. Now the nights are drawing out perhaps a late afternoon or early evening stint out there might help.)
I know how you feel about taking tablets, but it may be they can be a helpful option in the very short term. Can you take them alternate nights, maybe? Boots sell various 'natural' sleep remedies which we've seen but not tried, but obviously anything like that would probably be vetoed by the oncologist at the moment. It might be worth asking though. How many more cycles have you got?
I've got that same bitter taste too, and I'm on day 11 after docetaxel. I've found it doesn't really go until the third week, when suddenly my mouth feels that the alien space invader in it has departed at last.
I really hope the sleeping improves. Not being able to sleep night after night is horrible.
So today is my 52nd Birthday and the last of my chemo sessions it felt bittersweet and not as I imagined the hospital was very quiet and I had been offered the chance to postpone but I felt I needed to do it - just got home to cards gifts and flowers and a walk by and wave from my daughter wasnt expecting anything so really touched and quite emotional - I've not been sleeping either and have a daft obsession with on line shopping done this since my chemo started now can't get slots but I know I am worrying far too much - I'm also on the new radiotherapy regime so only 5 sessions hoping everyone is ok lots of love Adele
Thanks for suggestions. I will look at Down Dog app. Thanks. Yes. Stepping is another option. A good one! All your suggestions much appreciated.
At the moment I also have a constant horrible bitter taste in my mouth 16 days into docetoxal. Is that a common side effect? Thought the se's might have eased off by now.
I am now going for a mini jog round the garden.
My apologies for moaning.
Lots of love,
Can I recommend the Down Dog app which is free at the moment. Because I haven’t been able to exercise much I started on the ‘Gentle’ mode and you can choose how long you want to do. I find it’s keeping me supple and there is definitely a good degree of breathing, relaxation and meditation you can add in.
We aren't meant to go out of the house for exercise. You could try step upon a bottom step. Don't forget to change the leg you lead with. Squats are also good. Lunges too x