Hi all,
Just popped in to see how you all are and to ask a question. Does anyone else have issues with their temperature fluctuating like mad at around day 6 or 7 after their chemo?
On the first cycle mine went between 36.8 and 38.1! Hospital called me in for a few hours but let me go with antibiotics. Same thing happened yesterday, but it only got to 37.9, I waited an hour and tried again and it had started to come back down. 3 hours later it was down to 37.5, then this morning back down to 36.8.
It gives me a proper little panic attack when it does that! I didn’t feel ill at all yesterday. I was wondering if it is related to the Nebublaster injection (I know its not called that, but its my pet name for it )
Which reminds me to take my temperature again lol (and its gone back up to 37.1)
Deb x
Hi Deb Mine changes every bloody five mins with the ear thermometer so I never know which is the accurate reading.
Think if it goes above 38 then thats the time to call the hotline and ask if you need to go in
FEC-T x 6, FEC cycle 1, day 20
Good afternoon JJs. Out early with Daisy, and luckily got home just before it chucked it down. Then spent about 15 mins trying to tie a scarf so that it looked OK and wouldn’t slide off. Saw onc and had bloods done, all as it should be so full steam ahead for tomorrow. Onc is going to call me on Monday to see how I am. I remain amazed at the level of care I’m receiving.
Juliemb, glad to hear you’re doing so much better this time round. Makes being poisoned almost tolerable!
Bruce01, good to hear from you. It’s really hard to work out what to take when isn’t it. My OH drew me up a spreadsheet and I still managed to forget to take one of the anti-nause tablets.
Positivelady, Good to hear from you too. I think you’re the leader of the pack so look forward to hearing how you get on with the docetaxol. I too am dreading it. Like you I’ve been trying to drink more. We really don’t eat much in the way of processed food, but I’ve cut down on red meat as well as ham and bacon. I’m also going to try and have two meals in a week with no meat. I don’t want to become vegetarian as I find it’s quite a carby diet. I’ve continued with the 5:2 diet that I’ve been on for the best part of a year. One of the calorie restriction days was the day before my first lot of FEC and I do wonder whether that’s partly why I’ve been so SE free. Today is another CR day so be interesting to see whether cycle 2 is as good as cycle 1 has been. Couldn’t agree more about the picc line. Having blood taken was no problem at all today.
Benedictus, thanks for the tip about painkillers with Tax. I’ve always dreaded that one more than the FEC, but as I haven’t even got through cycle 2 of FEC I’m getting ahead of myself yet again lol. I’m going to hairdressers after she finishes tonight so she can clipper my hair and trim the wig. OH did his best but it does look a bit like a ploughed field!
Sakura1971, my temperature was all over the place on Day 10 which was my absolutely worst day. It was after I finished the last stem cell injection (I had 5 starting on day 5) and felt like I had flu. The highest it got was 38.3 but I didn’t call the hospital because I was sure it was a reaction to the jabs. Sure enough next morning it was back to normal. I must be honest and say that I haven’t taken my temperature since because I’ve felt so well. But that’s me. Of course you must ring the hotline if you’re unsure.
So nice to hear how everyone’s doing. Good luck to anyone else at the bar tomorrow. x
Well I seem to have had a much better time this cycle than last over all, The Aprepitant was a miracle worker no vomiting and domperidone which i have stopped taking today. The lansoprazole stopped the heart burn just had a few days of diarrhoea but not unmanageable and was still able to go over to mum and dads today. I have felt a lot less dizzy this time too think thats because i didn’t have to have the dexamethoshite he he
Had a bit of a scare yesterday as i have been having some kidney pain although no temp and was concerned that a i had an infection brewing and didn’t want it to take hod when my immunity started to drop or b my poor kidneys were complaining!! Anyway I called the hotlone and ended up going in to be seen, thankfully no infection they have taken some blood and given me an anti spasmodic to ease the pain.
The only other se i’m getting is blurred vision has anyone else had this very annoying when texting or attempting to post on this thread lol.
Kat poor you thinking of you hon enjoy your “week off” and wait to see what your onc has to say they must have come across this before and have a plan B up their sleeve.
Positive Lady good luck with round 4 I am going to have a chat with my onc about taking the steroid as it really dosn’t suit me that is reallu worrying me.
Chezza and Tamsin The hair thing is really massive but i can honestly say I felt must better when it had gone still get a shock seeing myself without hai though but have some lovely scarves and am now a dab hand at tying a turban
Deb I haven’t had the temp thing, mine went up on day 4 to 37.7 but dropped back again!?!
Piggy Thanks for all the epic posts they make me smile when I am too knackered to post myself
Everyone else hope you are coping with all of this, I must admit it is tougher than i thought it would be
Lots of love
Debs xxx
Lovely to hear from everyone Excellent that your se’s have been more manageable this time, Debs. Is Aprepitant Emend? I’m off for bloods and to see the onc tomorrow so I think I’ll have a chat with him about this cos although I wasn’t sick the Ondansatron didn’t seem make much difference and I was popping Domperidone like smarties. I certainly got blurred vision but I put it down to a side effect of the steroids. Did you still have steroids iv during chemo? If so it’s probably due to them. And yes, I’ve found it a right pain. Glad you’ve felt less dizzy - that’s what I’m hoping for.
Glad you’ve got the go-ahead for tomorrow Piggsy. Hope it goes well
Feeling very weary today and a bit sad. My daughter got great AS results and I want to hug her but she and the rest of the family are away. Wish I was with them
Look after yourself lovely ladies x
brill news about your daughters exam results.
If you have emend they lower the dose of the dreaded dexamethasone. Im having an injection on MOnday of a drug from same family as ondanzetron and its supposed to last whole cycle so even though they give me the steroid with chemo I dont have to take it for the days afterwards so am hoping dont get that awful come down and restlessness.
Yes Aprepitant is the magical Emend. I had the blurry vision, I had it on cycle 1 during first few days after treatment. Also had very sore eyes. Didn’t notice it so much this time though.
Hope you all well! Is good to read all the positive notes about manageable side effects.
Today on day 7 of cycle 2 I have developed Shingles. Just wanted to let you know so you are aware that it can happen because of our low immune system. They look like blisters and appear in cluster form. They are itchy and sore /painful. I am now on anti-viral meds for the next 7 days.
You poor thing, Mahsa. Shingles is horrible at the best of times, but in the middle of chemo must be really hard. I think you need a group hug as well!
Thanks for the info about Emend, Sakura. I’ve also had sore eyes as well as blurry vision this time around. Fingers crossed I may avoid them next time.
Are you up on Monday Chezza?
Hugs all xx
massive hug coming your way Mahsa
Yes Tamsin my turn at the bar again on Monday its coming round quickly three weeks has flown by. Im hoping it cant be any worse than number 1 and then will be a quarter of way through although now Ive got the port fitted when I start the tax going to have it weekly in smaller doses and not going to be taxotere but one from same family called paclitaxel. This way the SE are supposed to be less but the ball ache is you have to go every week
I’m gonna have a big moan. Bad tooth. Had to arrive at hospital early for session 2 as they want to do bloods again. my white count down in my boots. After a couple of weeks feeling well and positive, even quite happy, I’ve woken up today feeling so low. Think I have pain in my good armpit and convinced I can feel lumps. There really isnt anything there. I know I’m being paranoid and the more I poke at it the more uncomfortable it feels. I haven’t cried for ages but can’t stop. Gonna see wig woman before going back to ward. I’m in the frame of mind where I know I’m gonna hate it and gonna cry in front of her, like I did when I went to that Nicola Jane shop.
Oh Frog, sorry your feeling so down. Its natural to feel paranoid with every thing, big and small but a lot of it is because we feel so vunerable and fearful about everything that happens to us and imagine the worse. Hope it goes ok with your meeting with your wig woman. Sending big cyber hugs. Take care.
Senga xxx
Dont feel bad about having a down day froggy, it happens to us all. Hope it went well with the wig and if you did cry dont worry about it. You are allowed to
Stop poking your good armpit though as that isn’t helpful, which you already know. Hope they get your blood count sorted for you so you can get on with treatment
Remember that today is a bad day, but tomorrow doesn’t have to be xx
Deb x
Sorry cant lift the mood having a real crap few days, wanted to wait till I cheered up a bit before posting, but had a complete tantrum earlier , only managed to lift myself from it when I saw the effect it was having on my big strong Oh, we’ll I thought he was , poor sod was in tears cos I told him I wasn’t doing this anymore I was giving up…I bloody wont!!! I can’t after seeing what I did to him, sorry girls bet you need me whinging right now , I will dig myself out of it… I know I have to , I just hope you are all coping better than me right now x
Well I’m doing OK here so I’ll try and lift everyone’s spirits . Fingers crossed your bloods are going to be OK Frog. I just had the very same phone call here. Clinic this morning and a call just now to say that I need to go in early on Tuesday for a re-test as my bloods aren’t up to scratch. Going to mean a LONG day. As Deb says, stop poking and if you are really concerned mention it to the onc when you go for chemo. They will check it out there and then. The whole hair thing is very emotive - mine’s started coming out in handfuls today and I’m really glad I’m on my own and not surrounded by the children. Feel I can deal with it better in my own time and then face them when they get home next week. And everyone says it is strangely liberating once it’s done - I’m really hoping they’re right!
Someone somewhere on the forum said that bad days are often followed by good days - don’t know if it something to do with getting it out of your system. Hold on to the fact that tomorrow might be better. Lynda: really sorry you’re feeling so rubbish. I’ve lost track of where you are - you’re not in the middle of a steroid crash at the moment are you? Could be the reason for your foot stamping? I agree, you can’t give up. None of us can and yes, it’s going to be a sh*t few months, but if we do it one day at a time, or a week at a time, or work out some way of ticking the cycles off, we will get through it. What we need is someone to post from this time last year to give us all hope and to help us see a way forward. Come on someone…
Wouldn’t it be good if we were all sitting in the same room with tea and cake and boxes of tissues. We’d get things sorted between us! xx
Senga, Deb, Benedictus thanks for your words of wisdom. Linda I empathise And hope you manage to feel a bit lighter of mood soon, and the daily struggle with se gets easier. On a brighter note my bloods went from 0.3 Monday to 1.9 today, so chemo not delayed. The body truly is an amazing thing. It’s just such a shame it can’t kick this cancer in the balls without help.
6 x FEC-T, FEC Cycle 2 - hurrah!
Good afternoon fellow Junkies. Big hugs to all who need them {{{}}}. I drank deep this morning and thanked heavens for the picc line. Poor lady opposite had to put her hand in warm water to try and get the veins up and they still had trouble getting in. I was there forever. Because it’s 3 drugs and they put saline through between each one it takes ages. Then someone had a severe allergic reaction which caused a flurry of activity but delayed my escape so finally got out just before 2. I was starving. Had lovely pub lunch with friend who took me and am now slumped on sofa feeling weary. Printed off spreadsheet and will try not to take 3 steroids in one day this time round! No nausea yet, and got more anti-nause to take. Got steroid dry mouth, but that’s OK, I’ll take that lol!
Debaslicious, I got blurred vision and have got it today. Glad your kidney problem isn’t an infection but horrible you had to go to hosp.
Masha, shingles oh poor you. I hope it’s not too painful. Honestly, as if you need anything else to contend with. Cancer – just keeps on giving …
Froggy, sorry you’re feeling so down. I expect it’s because your levels are through the floor, that must have an effect on your mood whether you knew it or not. As well as a bad tooth. Having a good cry is natural, and you never know, tomorrow might be a better day. Just seen your latest post, glad it’s not being delayed. The sooner we can get through this the sooner we’ll start feeling more like our old selves.
Pollyanne, sorry you’ve been having a few bad days. Are the SE’s getting worse? Yes it’s sh** but we have to do it if we possibly can. It’s for our survival too, not just for our nearest and dearest. I think it’s easy to overlook that when we get so caught up in how others are feeling.
Beneditcus, glad you’re doing OK. The hair loss is devastating, but you will feel so much better if you can bear to get rid of it. My hairdresser tidied up what my OH had done, she went over it with clippers set to No.1. It looks so much neater, but it’s still coming out. I just don’t notice it now. You’re right about ticking off the cycles. I’m a third of the way through now.
Ooh, tea and cake. If I could be ars** to get off sofa I’d organise some. Have to wait for OH to come home.
By the bye, is anyone else getting phantom nipple pain? It’s wierd because I have no feeling at all when I touch it. I’ve had it from the day after the mastectomy.
Have a good evening ladies. Hope SEs are minimal and we all have a lovely, quiet, (or noisy if you’re up for it!) peaceful weekend. xx
Morning girls I was just looking to see if Annie62 had posted on here, we haven’t heard rom her since wed. August’s such a busy thread though that you do feel as though your post goes unread sometimes maybe Annie felt like that too? Glad to see you’re doing pretty well on here I’m due dose 2 next week so some of you are just ahead f me xx
Morning my lovelies , Tamsin, frogs and Piggys thank you for your support, what I prob need is a swift kick to the butt!! I made everyone’s life a misery yesterday. My poor OH sister and daughter . We’re all so upset and today I feel so rubbish for putting them through that, note to self next time on days 4 and 5 lock myself away and don’t bring everyone down. Slept well and apart from few silly niggly things feel ok ish. Hope all you ladies enjoy your Saturday Lynda xxx
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Just wanted to let you know so you are aware that it can happen because of our low immune system. They look like blisters and appear in cluster form. They are itchy and sore /painful. I am now on anti-viral meds for the next 7 days.