Sending a MASSIVE hug Camy, you’ve had such a rough time and the wait for results is grim at the best of times (never mind on your own in hospital). I’m sending you all the good vibes and hope they sort it soon.
Sending love to everyone else too, sorry to hear about the reactions and hospital stays. I’m whizzing my tits off on steroids (I’m now up to 4 x 2mg dexies twice a day for three days, started today and first docetaxel tomorrow. I dropped my first 4 at 1pm (on advice of lovely lady on chemo line who agreed I’d get zero sleep otherwise). Although to be fair I doubt I’ll sleep anyway as feel wired. I’d be better going out clubbing! xxxxx
Thank you girls, means a lot , I am still in hospital, no results come out, on 11 pm they gave me full of medicine, antibiotic, steroids, tummy protection injection to prevent blood clots, all possible probabil to prevent something could be and they don’t know yet. 2 days no treatment now they gave me a cocktail
I sweated all night, but cough still bad:pensive:I don’t know what will happen but I am very weak.Take care and I hug you
Cami we are all sending you the biggest hugs. You must be so tired. It’s so difficult to get any sleep in hospital as well. I hope they are being kind to you and taking very good care of you. Lots of love xxx
All the best Cami, hospital are not the best place to sleep especially w the noises and light. @annemanc that will be me next week w the big 3band injection responding to messages at 5.30am and not sleeping. One thing I sometimes do, but depends how I felt, I take on the last day a 3/4 of steroids morning and a half to try to avoid a post steroid crash. I haven’t seen any major changes to be honest but the Friday I do feel a bit more tired so something but be happening (or it’s the accumulation of no sleep) xxx
Thank you girls for your encouragement, , I am on emergency department, lucky me I am in a separate room alone, all hallways around are full with patients in the beds , or chairs, they are sleeping on the hallway, I can’t believe how busy they are.
Take care girls, and good luck with the treatment
@frazzledmcsazza and @shi on the ice-lollies question. I heard it really works. My problem is that I sucked on them during my 3 first sessions of EC and now even the thought of sucking on ice makes me want to throw up! Can’t even look at an ice cube. Amazing what the mind does to you. I now only seem to have association nausea…
Onto 12 weeks of Taxol for me now - every week. First one much easier than EC but I know it’s only the first and going into hospital every week instead of every two weeks is going to be tiring. They also gave me something against allergies before the Taxol which totally put me to sleep. And thanks ladies for the tips on constipation. Will follow your lead and dance it away (along with prunes). Getting used to losing all dignity on that side of things
@Camy_Radika so sorry to hear you are in hospital with that cough but good they are investigating it properly and hope you get the results quickly. Hope you are as comfortable as you can be- and let us know how you get on. Crossing fingers you can get back hope asap.
I just recovered from 3 weeks of bronchitis and all the coughing has made my chest sore- and I hate to think what is going on with my breast implant. Trying not to even think about it as not a priority but will be using masks more often now as I keep on catching things in between chemo sessions.
Thank you to everyone and your best wishes. I got a call 40 minutes before appt time for chemo today to say my Team had cancelled it. The chemo unit nurse was worried we hadn’t been told and asked the Team to explain. Lucky we left late and hadn’t gone too far in my 35 mile trip! The Team called 10 minutes later to say my SATs were down and due to hospital admission they had delayed. Will have a word in clinic next week why not informed before especially as we travel so far and my husband is taking a lot of time off from work including holiday to take me to the multiple appointments. Also had some antibiotics to collect in Cardiff they were owed from Monday,nurse suggest contact GP to do this. So when home a trip to GP to ask and they came through really quickly. I’m disappointed that I’ve been delayed as it will affect radiotherapy but then I think I’ve got a week to feel better and no extra side effects. I only get a few days so this is a real bonus. Radiotherapy being delayed will hopefully be after Christmas so I may get a symptom free Christmas which would be nice. I was already a bit concerned about starting the session 2 1/2 weeks after finishing Chemo not 3 and the added tiredness with radiotherapy.
@pinklilli3s so glad you can still use cold cap. It such a shame if you gone weeks with it to stop and sudden loose your hair. Side effects of weekly Paclitaxel and Abraxane are cumulative, I’ve found I feel more aches and pains, lethargic, nausea (will need to mention this next week in clinic) and problems sleeping. Hope you feel better soon, shame about your Christmas bedding.
@daffodil1 i was so pleased I got to go home, had a fitful night but better the next day as the antioxidant started to kick in. Radiotherapy probably be delayed re above.
@Camy_Radika so sorry to hear you’re in hospital with your cough. Hopefully they get to the bottom of it. Paclitaxel can affect your heart, did you have a ECHO or a MUGA (which I had), I was informed you have one as the start as a baseline then every 4 months for a year. Surely they would consider an another heart scan from what you have said. Sending love
@annemanc the wired feeling on steroids is so weird. I noticed most suggest not taking any after 5/6pm otherwise you get no sleep and that happens to me especially on chemo day after the steroid infusion as well. ‘Whizzing my tits off’ you made me laugh, thank you
@Louise07 yes the weekly taxol is very tiring not just visiting hospital but effects are cumulative. I have worn a mask ever since I found out I had cancer as I’ve been asthmatic all my adult life and diagnosed with heart rhythm tachycardia in 2020. I’ve always catch things easily that go straight to my chest, so was careful during the pandemic. I only eat and drink in the chemo unit if the window is open and I have a portable HEPA filter. So many coughing and not covering mouth with tissue and binning it. Hospitals are obviously worried that I was asked to do Lateral flow before attending on Monday, which was negative, and they followed up with PCR. If I had caught Covid it would only be from chemo unit! Shops always wear and FFP2 respiratory mask that filters about 94% and worked for me working in school.
Ah how frustrating @naughty_boob. It’s good you’ll get a week off though, sounds like you deserve a week to bounce back. It’s also be great if you got some time off at Christmas.
I’m still on cold cap at Christie, puked over side of the chair halfway through my docetaxel! In the bigger scheme it’s nothing compared to what a lot of you have had to deal with, but it did shake me up. They didn’t think it was allergic reaction so managed to restart it. I’ve noticed I feel pukey when I enter ward, maybe anxiety? But am now 2/3s way through so that’s spurring me on. We’ll all get through it xxxx
Great you are still managing cold cap, it doesn’t get any easier the first few minutes but keeping my hair , was the purpose and it’s worked so far. The condition of my hair not so great but I can work on that afterwards. I wash once and week add a primer, then oil everyday with a bit of water to try to style it.
Sorry you were sick with Docetaxel, I was with Paclitaxol but also felt warm (with cold cap on) and flushed in the face.
@naughty_boob I get the exact same side effects… lethargic in the morning, aches and pains in the evening and out of breath most of the time. Aches and pains are followed by shivering, (no temp) and some feeling sickness and loss of appetite. I did manage some work and a short ride but it becomes harder and harder w being lethargic in morning and night coming at 4ish!!
@annemanc I’ve been sick once w the cold cap on. the nurses say it can happen. Also on that day I took cyclisine but didn’t repeat that and been fine. You’ll get through it like you said and yes anxiety can be a factor
Can anyone recommend a good anti sickness that works?
Tried metachloperamide, Cyclizine but still feel sick. I am given Ondanestron via IV and to take the day before (although nurses don’t understand this as you’re not sick before and they only recommend 3 days use.
How are you getting on Camy? Been thinking of you.
Am feeling ok physically right now after chemo yesterday but in the wide awake at 3am club (dexamethansone!). Just spotted this post by Amy from Strictly who rang the chemo bell yesterday. What a star. It made me well up… this will be us before we know it. Xxxx
I literally cried for her but with happiness, well done Amy!,
Usually I am in your team as 3 am I was wake up to but today I slept better till 5 am
I am home from tonight and I have finally a diagnosis after CT scan results come.
Is a side effects of the chemotherapy, inflammation of the lungs, with no infection, CT scan came good form oncology side, but till Tuesday that is all I know.
Treatment with steroids and antibiotics preventing, morphine very low dose, tummy protection, calcium, and Inhaler.
Hopefully this time will work.
Chemotherapy will be stopped, on Tuesday I will know when I will continue or if we will change the chemo or stop.
I star walking before I couldn’t even maje 2 steps and I had to seat and short breathing with coughing continue , now I can said I can walk and breath cough is on session and hopefully the treatment will work.
I am happy in my bed my children are happy to see me as them father overwhelmed them:smiley:and asked if they are hungry or if they need anything at every hour, they never been without me before only once when I had surgery, poor children they couldn’t enjoy:joy:.
With my treatment I believe the oncologist have to change the infusion chemotherapy or probably to stop chemotherapy, I don’t know what will be, I thought that I will be able to done all the treatment plan, left 3 paclixatel, but as I checked is in the group of the frogs who damage the lung, so hopefully they have an alternative. I will update on Tuesday after my appointment with the oncologist doctor.
Hopefully you are doing well. How many left for you. @naughty_boob paclixatel was the last “drop in the glass”, I hope this time they gave me the right diagnosis, and treatment will work.
How the girls are doing, we all should be on the half way with the chemo, hopefully everyone is doing well and managed the treatment.
Big hugs for all. Have a good sleep
Hi dear, is true that paclixatel made worst all my problems with cough and also increased my heart rate, mine was high around 129 , yes true I had a scan echo and EKG at the beginning of chemotherapy, now in hospital they repeat all, and I had the pads from the monitor for 24 h, so I could see when I coughing the rate increases immediately and lights became all red and the sound of monitor makes me crazy and scared me,
But I am home now, hopefully all will be better soon. Big hug and take care
Hi @Camy_Radika I’m sad you’ve been through this but so happy you have an answer and it’s something the docs can help and solve fast. Your comment about the kids made me smile, absence makes the heart grow fonder doesn’t it? Though my youngest would probably roll her eyes and be sassy before admitting maybe she missed me a tiny bit.
Let us know the plan, I bet the docs will look at all the evidence before deciding if you progress w chemo or go to next stage of treatment. You’ve done so well to soldier on. Xxxxx
Camy I’m so pleased you are back home and that they now know the problem. That must be a relief. No wonder you were so utterly knackered with inflamed lungs. Really hope they have a great solution for you on Tuesday.
It’s so nice to hear all your news.
Naughtyboob sounds like that timing can work quite well for you with a Christmas break before radiotherapy.
Annemanc, sorry to hear you’ve been sick on docletaxol. Is it worse than EC so far?
Seeking advice of you girls re EC timing. Due to have EC on 30 Nov, 21 Dec and 11 Jan (once every 3 weeks). Just wondering timing wise how you think Christmas Day would pan out with EC symptoms as it’s an unknown for me. Apparently I would finish steroids on Christmas Eve. I’m wondering whether they could perhaps give me chemo a couple of days early to give me a chance of a better Christmas Day as our son is 12 and really want to enjoy it with him…but I don’t know how many days after EC you feel grim for…
I had to have an iron injection yesterday too at chemo as I’m anaemic. Good luck all girls here for a nice weekend
xxx
Hi @daffodil1 hard to say if docetaxel is worse/better than Ec yet as only had first one of docetaxel at 4pm yesterday. But I’d say so far it’s ok…. Feel less spaced out than EC. From what I’ve read on here sounds like docetaxel can hit you a few days later tho?
Spotted your w on EC on the 21st Dec. Randomly I have my final docetaxel (last chemo) on that day too. It’s Winter Solstice, feels apt to finish on darkest day w sunnier days on horizon.
Looking back, I think I tolerated EC ok. Weirdly I didn’t feel too nauseous, only occasionally and the anti-sickness drugs worked well. Many say that’s hardest side effect. The 3rd EC was def the hardest, but if your experience is like mine you may be alright for Xmas day on the 2nd cycle but not on top form (ie. Maybe get a helper/volunteer to prep the Xmas veg!).
Everyone is totally different, but for me rest made me feel worse, what helps is social distractions, food (always ravenous first week after EC for treaty stuff and roast potatoes…) and walking. So personally I’d be minded to crack on, but I’d understand if you’d prefer to wait as it can hit some hard. Do you have option to decide after 1st round of EC? Xxxx
Hi dear,
You can ask for a break at the Christmas week, it will be better to ask them in advance,
EC is tolerating, but everyone is different, depends if your immunity and body, you will have antisickness I advised you to take them immediately you are home, first 2 days and after if you feel you need, any other symptoms of side effects please let your oncology department to know about and don’t ignore them.
I am in this situation even I told them from the beginning I have a dry cough, passed 9 weeks and only now they start treating the side effects and I suggested them is from chemotherapy, now I suffered for weeks and end up with lung inflammation and don’t know how I will be, chemotherapy stopped, and I am blocked with a new illness and not because of my fault .
Please insist to your team if you feel any different with your body.
Appart of this I tolerate well the EC, so you will know how to manage yourself after the first session, then you will know what to expect for the next one.
I wish you a best and easy treatment of chemotherapy, take the day to day, don’t think to far, is different day tomorrow.
Big hug and stay positive
Akynzeo, I was on that 1 before chemo and then the m one after that you’ve said you’ve tried. Your team will try you on different combinations till they get right ones for you hopefully that’s soon Shi xx
xxxxx
, I am still in hospital, no results come out, on 11 pm they gave me full of medicine, antibiotic, steroids, tummy protection injection to prevent blood clots, all possible probabil to prevent something could be and they don’t know yet. 2 days no treatment now they gave me a cocktail 
. It’s good you’ll get a week off though, sounds like you deserve a week to bounce back. It’s also be great if you got some time off at Christmas. 
and I have finally a diagnosis after CT scan results come.
, now I can said I can walk and breath cough is on session and hopefully the treatment will work.
in the glass”, I hope this time they gave me the right diagnosis, and treatment will work. 
and not because of my fault 