Hello Everyone,
Responding to queries about seeing onc- I have an appointment at clinic before every juicing- I see the onc (different one each time I have to add but all working under same consultant) They ask me how I am, look at blood results and answer any questions which I do not usually have as you all answer those so well. Takes about 5 minutes then they send me up to chemo unit to wait for space for juicing. It is all very efficient- NHS at its best. on to sore arm. Mine is still very sore so rang chemo unit yesterday and now have appt for PICC line before next FEC in 10days time. They said it would also save me having bloods done day before as they can do it from the line and send them off for emergency analysis to see if I can go ahead with FEC 5. What happens with the Picc insertion -I am getting a leaflet in the post but you all know how it really is so please tell me.
Squeaky- I cannot believe you have to do so much organising yourself-how do people who may feel sicker ever manage that?
Rattles- Thinking of you hope you soon feel better.
XX
Hi again
Alesha, It sounds bad to say this but its so nice to hear you have same problems post chemo as me and all I can say is now I am on day 11 its all ok apart from sore arm. I even got the tape measure out and tried to see if it was more swollen than the left so I could keep an eye on it but its really hard to measure onehanded so I am doing it mostly by sight.
My family too are not talking about the holiday they are all going on in 19 days time because they don’t want to upset me- i actually feel ok about them going because they need a break from me. I am so hard to live with in week 1 -very intolerant etc it must be those wretched steroids because i feel totally different now.
xx
Hi
Thanks for all the advice regarding my arm. I know what you mean it sounds awful but at least I know that I am not the only one. I really would be worried then. I think I may call the oncologist or chemo clinic on Monday.
The tape measure is a good idea! I have noticed that although first thing in the morning I cannot straighten it by the end of the day it eases up slightly. I will try all the recommended treatments!
Thank you all again!
xx
Hi alesha and bikerchic , nice to hear from you.
Glad you are okay although sorry to hear about the problems you are all having with your arms. I have a picc line which is a lymphodema risk as I have had clearance both sides. So, I dont get pain (thank goodness), but the arm does get achey and tight. Anyway, I just thought Id mention that the exercises help- the physio said this is because when we are in pain we tense and hunch up which just makes things worse- worth a try?
Kitten mad - glad you are feeling better.
Squeaky-mouse- I am sorry you have had such a run-around. Even though I regularly feel gulity about the resources used on treating me, I could go mad thinking about how mad the system is.I was at the hospital almost all day waiting for blood results- I noticed that part of what had been a fully healed incision was weeping. Thought b…r what do I do? No temp. but as you know, had so many problems with infection and as I was at day 10 decided I must ring the out of hours number. So, had to get neuts checked and a swab taken. It took hours. I am so, so glad to be home. Even though everyone lovely, the thought of having to stay in was unbearable. I think I may be dveeloping a phobia of hospitals…
To all those waving their families off on holidays, a special hug. You are being very generous. I am ashamed to admit that I have been feeling jealous of daytrips my OH and daughter have planned. I hope we can all plan something nice for ourselves when our treatment is concluded.
Rattles, xx
Squeaky you are having a flippin nightmare with your hospital. My OH would suggest a ‘strongly worded letter’. I don’t understand why it should all be so difficult. I am liking the choc muffin chemo though. Maybe it’ll catch on?
I’m another who sees her onc (swoon) every cycle. I tell him side effects and he writes a shopping lists for pills and potions that miraculously appear at the end of my feccing.
Ambarose. You are racing ahead with your 4th FEC. Sorry to hear about your poor veins. I’ve had a Picc line from the beginning. At my hospital they put them in in radiology. First off locating a good vein with ultra sound then they guide it in under x ray. Not sure it’s always done like this? No pain though as a local is given (actually that’s the worse bit). It’s pretty easy to live with although not a good look with short sleeved tops!
Good luck to those changing drugs. Must be scarey, unknown and all that. Plus all those steroids?!?! Phew.
There are a million posts to repond to but cannot scroll back, so forgive me I have read them but memory bit cr@p lol
Did we hear from clare re her temp?
Enjoy your Sunday tomorrow xxxx
Hi ladies. I can’t read through the past posts today, is there a glitch in the matrix again?
I hope everyone is doing ok and are feeking well.
I had my 3rd fec on tues, so half way through. Thought I would fehave leased but I’mstruggling with se’s this time round.Droid others of you say your 3rd was the worst yet? I just can’t seem to stay awake and am sleeping for hours on end, does this happen to anyone else? My neuts were lower this time at 2.0, so I’m wondering if that is why it’s taking longer to pick up this time.
Does anyone else sleep for hours? It maybe as I’m not havin. The steroids to lift me but my oh is getting a bit worried how much I of the day I am passed out for. I’ve checked my temp and that’s ok so not sure whether to worry.
Wish I could see the other posts to see how you all are. Hugs to all just in case xxxx
Sorry for the odd spellings, I have a very naughty little kitten who is in love with the iPad x
Hi josiejo, sorry you are so sleepy. I don’t do the steroids but only slept for the first 2 days. As I approach FEC 4 and look back I don’t think FEC 3 was too bad for me. Might be worth contacting your unit? Xxc
Hi Doggirl, yea the exercises do help, keeping the aching arm warm helps as well, nice warm bath, ohh bliss no pain, lovely,lol, 4th juicing is next week, bloods permitting of course, have been a bidodo own the last week or so, having thoughts that I don’t want to carry on with treatment, is this normal? OH has been great, keeps reassuring me that’s it’s nearly finished, only 3 left, but it’s not him that’s having it, arghhhhhh, I know he and the rest of family mean well, but it’s so hard sometimes to keep it all together , ok I’ve had my vent, lol, going to go put kettle on and have cup of tea, love to all Toni xx
Hi Toni, I so know where you are with the not wanting to carry on. I feel exactly the same. Also have FEC 4 next week. 4 is the usual number in The USA I have read. I dont know how beneficial the extra 2 are? Might ask my onc when I see him tomorrow. I have every intention Of seeing it through But it’s getting harder pyschologically. I am fed uP!! And knackered!
My husband offered to have it for me today. But we have agreed that I am a better patient and I am a terrible nurse! He is currently at the supermarket. Had two phonecalls so far…
Duplicate
Hi Toni, I’m having exactly the same thoughts. I was so excited to get half way but now I keep thinking, oh god, I have to do it all again. My oh is being great too but he keeps trying to get me out of bed and Ijust don’t feel up to it today. Winge, moan.
hmmm, I wonder why we have 6 dog girl? Wouldn’t 4 be amazing. Hmmm dream x
Hi Toni, Doggirl and Bikerchic
I was feeling like you last weekend, couldn’t understand why I was suddenly so tired, weak, wobbly and lacking in energy and down when it was day 17/18 since FEC3 and I was expecting to feel pretty normal. It felt like being halfway through finals at uni, when you are thinking you have done all this intensive stuff and wondering if you have the strength to get through through the last half. This tiredness hit quite suddenly.
My onc said this sometimes happens as the chemo can have a cumulative effect over successive treatments and it turns out that my bloods that day were on the low side (neuts 1.7 even with neulasta, and haemoglobin 12) so it may be that some of you are experiencing something similar (i.e. there might be a physical reason that’s not helping the way you feel emotionally).
At least the wretched steroids are giving me the energy to continue to make a nuisance of myself at the hospital until I get the docetaxel I should have had on Thursday, otherwise I would have given up, thought can’t be bothered with all this hassle any more, and waited to see if they ever contacted me again. The neighbours will be glad when I have stopped taking the steroids and retired to bed like a proper cancer patient as they probably didn’t appreciate the Foo Fighters and Iron Maiden early on Sunday morning in the same way that I did (not too loud but probably too loud if they had hangovers! Ooops!)
Hope this makes you feel a bit better. Anyone who has not got out of bed today or looked out of the window might like to know that the rain has stopped and a strange warm yellow glowing thing has been spotted in the sky so you might like to take a look or go and sit out in your garden or balcony for a bit - don’t forget the sunscreen!
Squeakymouse xx
Hi Everyone,
Thanks for the information about the picc line, the nurse said something on the phone about xray so now i know. have just been on lovely, lovely walk with dog and daughter through an enormous shooting estate near where we live. it was so peaceful as no bikes, horses or 4x4 allowed, only walkers. we must have done 6 miles but saw loads of wildlife so it was like normal life for an interlude. I even walked it with nothing on my head as it was warm and decided to walk all the way back to my house like that as well and who cares who sees me!!. Actually did not meet anyone!!
For those who felt bad after 3rd Fec, I have to tell you it was worse for me after 4th Fec so be prepared.
Love to all
XX
Hi - Just visiting from the April forum. Question - people are talking about FEC4 in this forum. My treatment is 3xFEC and 3x Tax. Are others just having FEC? I started the TAX last Monday and am finding it worse than FEC. Have been in bed all day since Tuesday afternoon with no energy, aching kness and back and painful nails.And a mouth like the bottom of a budgie’s cage.
Hope its not too bad for May people - there is some serios suffering going on with the April group…
Love
Mary xx
A quickie from me. I am going to need to sort out a poential tantrum!
All of us are a bit diiferent Big M - some of us having 6 FEC. Some x3 Fec + 3 tax (with tax first, or fec first). I am having 6 carboplatin and tax…No one else on the buddie thread on this comb. but there are some others on another thread.
Just to reasusre you that many (but not all!!) find the tax tough- the fatigue, aching and burning/sore hands feet nails are all common SE’s. I think you have to remember the accumulative affects too. The pattern for me is as follows: days 1 and 2 okay. day 3-6 in bed, flushes, sleeping, fatigue, upset stmach, nasuea, palpitations, then 7-9 slow and slight improvements. It is day 11 for me today and I managed to go out for lunch.
I will try and bump up the doccetaxol thread because you can see the SE’s and how people manage. What I would say is that like FEC, people’s expereince does vary.
Hope this helps a bit Mary. Hang on in there. You should start to feel better.
Right now to sort 5 year old out!
Rattles
Hi everyone , have to agree that FEC 3 was the worst , just got home from hospital , has chemo Thurs morning and was back in hosp by 6pm , had a bad reaction to it , came out in a rash and vomitting non stop, but hey last FEc so at least I know it wont happen next time , no energy but thats my usual just after chemo , was hoping to be celebrating being halfway through but that can wait , off for another nap now , hope everyone else starts to feel better soon ,
love and lots of gentle hugs to you all xx
Hi Ambarose
Re PICC line - I’d just like to add that mine didn’t hurt going in, they give you a local anaesthetic injection before. This makes your arm numb so you need to be a bit careful not to drop things afterwards! They found the right vein using ultrasound then once it in I was sent for an X-ray to check it was in the right place.
It was slightly painful under my arm afterwards but nothing serious just like mild muscle strain from over-exertion and not like the vein pain I had a couple of weeks ago. I have been using a wheat-filled lavendar-scented cushion that you heat in the microwave or a hot water bottle would do just as well (think they encourage you apply heat even if its not painful, to help it settle down) , and have not needed to take painkillers.
They advise me to try and use my arm normally-ish after insertion, as this means less likely to get phlebitis or blood clots than if you avoid using your arm at all. By normally-ish, ironing is OK but heavy lifting, strenuous gardening, DIY etc is not advised and I let hubby do the hoovering.
The dressings are waterproof but they reccommend you don’t soak it in the bath so I bought a waterproof cover on the internet (not meant to promote products on this forum but if you google PICC line cover you should find some). I also asked for a spare strip of bandage from the hospital to keep it covered so that I have a clean to wear while the other is in the wash.
Squeakymouse xx
Hi buddies, it seems like we’ve all reached a halfway lull and instead of thinking ‘great we are halfway’ we are thinking ‘oh s**t we’ve got to do it all over again’ !!! Josie- although I wasn’t sleepy tired after FEC 3, I was definitely more physically tired this time. Got my energy back again now though ready for TAX 1 next week-bummer!! Squeaky - your bloods are positively sky high compared with mine which only came up to 1.12 after injections so I’m not holding out much hope for mybloods this Tuesday especially as I have felt so tired. I do hope you get your TAX tomorrow. Don’t despair girls we’re tough and have got this far and we will get to the end. Hope all our other quieter buddies are ok - harry duck- hope you and our mascot are ok?, Gillian, Merc, alix, Polarbear, jellipops, Dorothy, Claire, Julie, rattles, Alesha, kittenmad et all (sorry to those ive left out, my chemo brain cant come up with any more!!) love to all, Em X
Right o quickie from me. I haven’t had any scans. Am I missing out?
I assumed this was normal as no node involvement. I got to thinking when well meaning friend asked how they knew it hadn’t spread elsewhere via my blood. Just got me thinking…