Hi Alex, glad you are starting to feel better. The mouthwash definitely helps. I had a really sore mouth and tongue first cycle and started using the mouthwash and it improved quite quickly. This time I started using it as soon as I felt it becoming sore and it never got anywhere near as bad. I still have no taste buds, but think I have accepted it will be after chemo they they return to normal. Not such an issue this cycle as it’s killed my appetite but last cycle I was hungry all the time and just nothing tasted good ?
Hope everyone else is quiet because you are really good, not because you are suffering xx
Just got Biotene mouthwash, so hopefully that will do the trick. Yes, Suze had already been doing the salt water gargle, as when I had said to my Dentist before starting chemo which Mouthwash should I buy, he actually recommended the salt water.
Once again, thanks for advice from everyone. x
Mad hatter, so glad you finally got there! Hopefully you will sail through. I found the first day or two a bit surreal to be honest. It’s the not knowing what to expect. My nauseau was immediate, but seemed to get worse from 48 hours onwards, but by Sunday I was out the other side. At least now youve now got first session and have no option but to deal with it. The waiting is horrendous, as you imagine all sorts. Let us know how you get on. Sending you hugs.
Oh another thing, the Nurse said to me I would not sleep the first 2 nights due to steroids, but I did! Quite a lot actually lol. Although I did waken up once or twice, I then was able to go back to sleep. I woke up because I was either boiling hot or shivering cold.
Sue, I know you are not a Dr ( as you have told me before lol) but advice please.
I am experiencing what I would class as a hot flash, no sweating, just feeling really hot and have to fan myself to cool down. Only lasts a few minutes. This happens throughout the day and wakens me up at least twice a night. As I was premenopausal, is this me now in the menopause and obviously starting off with the milder symptoms? This happened virtually from the first night I had chemo. None of this at all was explained to me by my Treatment Team. I thought it was when I started taking Tamoxifen that the menopause would start.
Also, do you think I should contact Team before next chemo to discuss nausea so they are aware, or is it enough to do on day of chemo. In the Unit I go to you speak with a Nurse first, then you are also seem by one of the Onc Drs. Chemo is then given later that afternoon when it arrives from Pharmacy. I was thinking that that would be enough time to make changes. Maybe not?
Think I have a few questions I need to be asking if them! Might be a good idea if I write a few things down before I go.
Thanks for this.
I hope you’re ok. I don’t know if this is your duvet week, or your work week. I don’t know how you do it. You are an inspiration. And I genuinely mean that, it is not said lightly. X
Feeling blue today. Think it is the build up to EC2 tomorrow and packing up to go home from holiday, which I always hate. Have had a wonderful week though the big C hasn’t been far away, intruding into my thoughts and throwing up uncertainties about the future. Hubby and I have a long held plan to settle in the country once the smalls are independent and staying in this great cottage in a perfect location in God’s own country has made us yearn all the more. A few months ago I could dive right into the dream but now I am so aware that I just don’t know what the future holds. Sorry for sharing my blues but am guessing we all have dark moments. Will give myself a virtual slap and snap out of it and face the packing! And hoovering up all my sheddings!
We all have blue days Oncewild. I have had quite a few this cycle with feeling so rotten, and a bad day yesterday after hearing that someone I didn’t even personally know had passed away. It was just enough to make me question my own mortality ? Coming home from holiday is enough to make anyone feel blue, so I think it’s inevitable that returning to the reality of cancer and chemo is going to make you feel that way. Just trust that tomorrow will be a brighter day, and keep dreaming of your life in the country. Because without dreams we will never achieve anything great. Sending lots of love xx
Oncewild good luck with your EC tomorrow, just keep thinking of that zip wire, you can do this. Taran keep smiling and we’ll all smile with you Madhatter how are you feeling today? Anyone heard from Nellie I hope she’s ok and is quiet because she living the high life till the next one. All good here and making the most of feeling well. Xx
Hazel, good luck for tomorrow. As you have already experienced some of the side effects, hopefully if they occur again this session, you are more prepared to deal with them. And you are another step closer to the end. How often do you get yours? know you are on a different regime to me. I will be thinking of you. X
Taran, you definitely do deserve it! You are dealing with your own issues, have 4 young children and support others on here.
Why do us women find it so hard to accept a compliment? Sue was the same earlier. Must be built into our DNA. “That’s a lovely dress” “what , this old thing, I’ve had it for years”. “I love your new hairstyle”. “Oh, no, she cut it too short”. Lol
Well, had my second TC chemo today. Only there for 3 and half hours this time, as first time took 7 hours due to having to be monitored for first herceptin injection for 6 hours. It took three attempts to cannualate me despite the unit warming my arm in warm water beforehand. My hand and wrist are covered in bruises, not sure my arm is going to hold out for the duration of chemo. I asked again about a picc line but they seem very reluctant to do this, it is a very busy unit and I suspect their reasons for trying not to put one in is for their own best interests, but also feel they have my best intersts at heart too. They said to see how my arm was in a week and if it was still sore, phone them and they would arrange a picc line. By the way, Belle has posted a very good thread on veins in the August starters thread, it’s definitely worth a read. I’m off to wrap my arm in my hot water bottle now.
No side effects as yet, but it’s still early days, hours so not counting my chickens. Very tired but not slept well last few nights and also I get Piriton through my drip which is probably making me drowsy. Was going to go for a nap but will try and stay up, eat a light dinner and have an early night.
I woked up with a “red steriod face” which has thankfully subsided a bit now. Never had this the first time. Also, got puffiness and swollen ankles from steriods.
Oncewild, hope your treatment went without any problems today and also wishing you minimal side effect over the weekend. Like you say, another one ticked off the list.
Hazel, fingers crossed the side effects are minimal this time. Hopefully you get a good night sleep too, it always helps you through the day if you do. And yes, another one ticked off, so one step closer to the end. Look after yourself. X
Once wild, the same to you too. Hope you are in a better place emotionally than you were yesterday. Thinking of you x
Should you experience any challenging side effects please ring your chemo team/chemo helpline/ oncologist/GP/Breast Care Nurse. They are there to help! Never think you might not wish to trouble them with something you may think will go away/be better the next day. Some side effects can have a cumulative effect and dealing with them at the outset, will make it so much easier down the line.
Hi all, sorry for my quietness, I’ve had a slightly rubbish week with PICC line problems…which is why I thought I’d just drop in as Hazel was talking about getting one.
i don’t want to put you off in the slightest and I’m still happy that I’ve got mine in place, but I’ve developed clotting around the line which is apparently quite common. The result of this though is that I now have to give myself daily blood thinning injections for the entire course of my treatment to minimise the risk of further clotting and there’s a possibility that I won’t be able to keep the line. (I’m also now paranoid about travelling blood clots going to my brain - never been a hypochondriac before!!)
i didn’t really have an option but to have the PICC as I have really small veins and am having 3 FEC + 9 taxol but I sort of wish I didn’t have to have it!
On the plus side, I know many have had zero problems with their lines and it definitely does make the infusions easier.
Just wanted to add my experience for you as knowledge is power : ))
Wow Pookie, that sounds awful. There really are no straightforward choices. I was worried about cannulation yesterday but the nurse found a virgin vein I can’t even see and popped it straight in.
Still lying in a darkened room but feeling better after a slice of marmite toast (what is it about marmite that makes everything better?) and a glass of tonic water - not sure this was such a good idea. Still feeling grim but apart from the two hours of nausea yesterday evening, touch wood, doing ok.
My coming home from holiday sadness was not lifted by the thing I was hoping for (the flipping holiday insurance company paying up for the two weeks in Cyprus we had to cancel) but by something rather wonderful - a knitted knocker!!! It arrived in a lurid pink plastic envelop with ‘Knitted Knockers’ all over it - well if the postie was in any way curious about why I have been at home, he knows now! Anyway it is BRILLIANT! So soft and light compared to my 600g prosthesis. The latter looks pretty real in situ but so heavy I can’t wait to get it off. ‘Made by women for women’ my knitted knocker came with a little note from Carol, the knitter, along with a brooch she crocheted for me. Such a lovely, lovely thing to do, I feel really touched.
Hope that you are all doing well. I have had a very grim weekend after EC2 on Friday eve. So nauseous despite the range of meds so I took to bed and stayed there for 48hrs. Feeling marginally better this morning so hopefully I have turned the corner. The thought of another EC in three weeks fills me with dread. I hate this disease!
That sounds exactly like me last weekend Oncewild. I started to lose hope of the nausea and grotty feeling ever lifting. But this weekend was a completely different story. I took my son to a birthday party Saturday and generally felt so much better. So hopefully it won’t be long before you are feeling good again too. I totally agree though, I have no idea how I’m going to let them do it to me again next week!! Last cycle seemed long and I was waiting to get on with it and cross another off. This time I spent so much of it feeling awful that I can’t believe I have to start the whole thing again so soon! I just keep thinking that at least that will be half way through, and my last FEC. So that feels like quite a good milestone.
How is everyone else feeling now? How’s your PICC line doing now Pookie? Hope you’re getting on ok with the injections and they are doing their job.
Madhatte and Hazel, how are you both doing? Hope the weekend was good for you xx
Once wild and Taran, I’m so with you on the wondering how I’m going to let them do this to me again! It gets pretty grim at times.
Sorry you have been unwell with nausea on first session Oncewild. Hopefully that is you over that bit. And Taran, glad you seem to be on the other side of your second session now too.
I was pretty unwell with first FEC 4 days or so with bad nausea and retching and then when that cleared up a few days later, I had awful mouth issues. Could hardly eat throughout both and have lost about 6lb. Not good.
However, feeling really good today and going to try and eat as much as I can (within reason) to put some back on again. Hopefully this is my good week before second session.
Was looking forward to getting out and about this week and meeting a few friends, but hair started falling out yesterday, day 12, so have had it cut to a real crop, about 1 level up from a grade 5, so just coming to terms with that. Was weird looking in mirror eekkkkkk! But to be honest, not as bad as I thought. Going to feel weird going out without my usual hair.
At least we have each other on this forum for help, support and encouragement.
Hope everyone else is doing ok. x
I’m so sorry to hear about the problems some of you have been having. I think I’ve had a really easy time on my first cycle of FEC, except for the first few days suffering from nausea. I’ll probably get clobbered next time! Sending big hugs to all of you who are struggling a bit, and hoping you feel better soon.
Madhatter how are you feeling today? Anyone heard from Nellie I hope she’s ok and is quiet because she living the high life till the next one. All good here and making the most of feeling well. Xx