Well done to the new FEC-ers, you are both doing really well. After finishing FEC it was definitely FEC-off FEC. Anne - Like Hayz said we are all different as I found TAX easier than FEC (the nausea for me on FEC was not good. I probably found TAX easier as my dose was dropped to 80% after dose 1 which was 100%.
Anne - I used senokot too, daily along with prunes and prune juice. I was very keen on the prunes but forced myself to eat about 6/day. And eureka things moved!! I think others on here have used Movicol.
Babs - they told me the immune levels are at their lowest day 5-10 on FEC and anything from day 2 -10 on TAX, so your white cells in theory should pick up from around day 10 onwards. You wouldn’t really know unless you had a blood test/or where unwell but that’s the assumption.
Loocie - good news about the picc line coming out tom, good luck with that. You’ll be so relieved to get rid of it.
Loocie. Sounds like a good course you’re on sharing with fellow sufferers. Life can seem quite surreal with all this cr*p going on for us. We need something to get things back in check eh!
So pleased for you tomorrow having PICC line out.
Linbin. Really looking forward to day 10 when cells should start kicking in again. Thanks for details.
Anne, I asked Dr today about Movicol and he described it like an enema from the top down and only to use in severe circumstances. So he prescribed me a drink called Lactulose liquid which can be used with senna if necessary. Only taken a bit so far and hasn’t worked yet but don’t want to force the issue if you get my drift. How’s today been for you?
Well, I called my BCN this morning about my Elephant Arm. She asked if I had had any cuts etc…& I had to admit to cutting myself on the snow!!..don’t laugh!..it was hard snow on the top of the wheely bin that had gone a bit icy!..and it’s like a really sore paper cut!!
I knew that was the culprit, as it’s taken 3 weeks so far to kind of heal! She said to try & keep my arm elivated if I’m sitting down…difficult when the only time I sit down I’m typing!! LOL.
I’ve also to massage the arm up towards my shoulder to move the fluid to the lymph nodes in my neck in the hope they’ll deal with it. She’ll have a look at it on Wednesday when I’m in to see the onc & again in a weeks time. If it hasn’t gone down any she’ll refer me to the Lymphodema specialist.
My Mum massaged it for me this morning & my OH done it again earlier…the fluid doesn’t look like it’s budged, but my arm feels fab! Maybe I should tell my OH that I have it in my back too! PMSL
Loocie, that course sounds fab. We don’t seem to have much here at all. Even at Maggies in Edinburgh there isn’t a huge programe. I’m meeting the ladies from the Edinburgh & Lothians thread on Thursday for lunch tho & I’m really looking forward to it.
Ooh…how exciting getting your picc line out…NO MORE CHEMO!! WOOP WOOP!! ;o)
Babs, was it your GP you asked about Movicol? My chemo nurse always asked me at each cycle if I needed any movecol, but dulculax was always fine for me.
I always contact the chemo nurses if I have any concerns or need any meds. They usually have a cupoard well stocked with anything you’ll need! I’ve found that GP’s aren’t always aware of whats best for us at the moment…one told me just to take paracetamol when I went to him on day 7 FEC with a temp of 37.8!! I had to tell him what he was s’posed to do & show him my wee leaflet!
From then on I’ve stuck to calling my BCN, chemo suite or Onc for advice.
Hi Hayz. Glad nurses will get to look at your arm out Weds. It just shows what a little cut can do eh?
Yes it was GP who told me about Movicol and suggested not using it unless really bad problem. However whenever I rang hospital the chemo nurses just told me to ring GP. Maybe its because they’re 18 miles away rather than the Doc just being 5 miles and they think he could deal with things. He was very helpful. You’re GP sounds a right idiot when you had a temp that high. However I will discuss all problems with Onc when I next see her and see what she suggests.
Re the lactulose Babs, I used it on a couple of occasions - 10ml in the morning. I found it worked, but a little too well if you get my drift!
Hayz, pleased you managed to speak with someone. FYI we had a lymphodema nurse chatting to us at the hospice yesterday. You may want to follow what your BCN has told you, but here’s what we were told - just in case it is useful to you. She explained that is the tightening and relaxing of the arm muscles that get the lymph moving, so just opening and closing the hand, and the post surgery exercises should help to shift any fluid. Might be more comfortable than relying upon keeping your arm elevated?
Feel a bit sick thinking about going back to the chemo suite, even though I know I’m going there for a good thing. Odd isn’t it, but guess it’s like we said before about triggers! Just hope the receptionist hasn’t knobbled me, as orginally my appointment was yesterday but I called and changed it to today, but I got the feeling she was only half listening. Probably doing her a great injustice but wont be a happy bunny if they can’t do it for some reason. Here goes then…
Thanks for the info…funnily enough I’ve been doing some of my post surgery excercises over the past few days…not that I done them much post surgery!..but I’ll do them more often now. clenching & unclenching my fist does loosen up my hand a bit.
I think we should all get some imput from a lymphodema nurse & be shown the massage techniques BEFORE we develop the condition & not months after!! Surely knowing the correct massage technique & using it daily would help to prevent lymphodema in the first place?? …Aaah…my wee rant for the day! LOL ;o)
I know what you mean about triggers of chemo. I’ve gone through the bathroom and had to throw out all the shampoos etc. I used during chemo as they make me feel sick every time I use them, particularly the conditioner I used under the cold cap! And even the loo block which is the same smell as the one I used during chemo reminds me - not getting that smell again! I haven’t ventured back into the ward again, but the chemo ward where I’m having rads gave me the shivers when I walked past the door.
I’m having to face the reality of joining the real world again, and it’s a bit scary. No job to go back to, and not sure I can face going full time again so it’s going to be a bit of a struggle to find something, particularly as jobs are scarce in my field at the moment.
I feel a bit as though I’m being dumped back into the real world. I asked my radiographer if I would see my onc again as he implied I would but they said, oh you’ll get an appointment in the post for about 5 weeks and that’s that. I feel a bit forgotten about. I suppose this is what happens when you finish treatment.
And I must pluck up courage to start tamoxifen on Monday! Can’t put it off any longer.
Loocie, hope the PICC line comes out ok.
On the subject of movicol, my gp recommended it, as did my onc and it worked fine for me, didn’t cause any problems more than the chemo did in the first place.
Hayz, really hope your arm improves and the exercises work for you.
Good luck all you FECers (I’ve always pronounced it F.E.C. but I do think it sounds better as Fecers lol)
Have finally managed to go to the loo, I just ended up eating chopped up dates and linseed seeds on my cerael, lots of grapes and drank lots of water, phew it was a relief.
Feel ok today, not taking any tablets now, day 6, felt really knackered last night as if I had hit a brick wall, it usually takes me ages to nod off but I fell asleep sat up with specs on and had a really deep sleep. Taking it easy today, walked the dogs, changed the bed now just chilling. Wig man rang this morning, go to pick up a wig tomoz. Its quite strange waiting for your hair to go, I feel in limbo at the moment. It seems to have gone dead greasy within a day or two but been advised not to wash it more than once a week!
Hospital rang yesterday about a trial re herceptin that I have agreed to do, it just involves them taking a little extra blood. It got me thinking, I had no problem when they injected the first cocktail into my arm, but I know you get your bloods done the day before your next treatment, so isn’nt your arm going to already be sore when they try to inject you the next day??
How is everyone else doing Babs/Hayz/Lynn. Loocie hope picc removal went well.
Hi Ladies,
Glad to see that most of you are doing well, Hayz hope your arm is soon better, just shows how easy it is to hurt ourselves!!
Loocie hope all goes well tom, what a relief for you to get rid of the line. Thank goodness I never needed one.
Lynn I did laugh when you mentioned Fanny Cradddock, you are really showing your age!!! Sorry the course wasn’t what you hoped in that respect. The lady on the Clinique counter did me proud. I used to have really dark quite heavy eyebrows and wasn’t too sorry when they thinned out. I was given a colour to use on my brows which is like a dark straw colour which is good with my wig colour. I’ll look the colour up. I certainly would loook very wrong with my natural colour now which seems rather strange.
I, too have found Tax easier than Fec. However this one has hit me a little harder. I spent the whole weekend asleep in bed and now the aches have hit me a little harder than usual. Still not enough to warrant pain killers, just fluey aches and today lots of odd sharp pains in different places. Started the antibiotics which give me really bad heartburn and tried my first Gaviscon last night. Wow it worked so fast I couldn’t believe it.
Hopefully I will feel more or less back to normal in a day or so. Can’t believe there is no more to do!!!
Well done for doing your first FEC girls. It will fly now. I too had constipation which aggravated a small ‘pile’ can’t spell the proper word beginning hem… which was caused by childbirth and became very uncomfortable even just to sit down. Since finishing FEC it all stopped and everything is back to normal!!!
Take care everyone, keep smiling…
Love Jane xx
Anne glad you got the loo problem sorted, me too but I did need the help of Lactolose but only 1 dose. I shall take it now before next treatment.
Re the 1st cocktail, they used the vein in the back of my hand for mine and only used the arm for blood tests. Do you have it all in the arm?
Also just been advised that Kiwi fruit, broccoli (cooked) and Mackeson are very good to help immune system so I’ve just added them to shopping list. I may end up an alcoholic after this but if it helps then I’m gonna try it.
Am feeling good today and have just been on WII fit to see if put weight on but have lost 4 pounds so I reckon steroids have opposite effect on me. Can’t complain as long as I don’t lose too much weight. Also off today to see wig lady but don’t know if I will get one there or have to make another appointment.
Loocie, & Helen, I can understand what you mean about chemo triggers as I think one of the hardest things of all is getting your head around what is going on. Its a bit like being in limbo and not knowing what’s going to happen next eh?. I even dreamt about treatment the 1st few nights but now am back to having normal dreams.
Hope all goes well with Tamoxifen on Monday Helen.
How was chemo suite today Loocie?
Hayz, Has arm gone down now, what did nurses say?
Thinking of you all and everyone else going through treatment.
Hi everyone - I’m now PICC free, yeeeeeaaaayyy! Was really straight forward getting it out, so was only there for a few mins. I felt a bit wobbly driving into the hospital, but by the time I was in the unit I felt OK. Can’t believe the difference it has made having it out. Clothes and sleeping are much better - you wouldn’t believe that such a little thing could have such an impact!
Going for my first foray into the park this morning - got a friend in tow so he can carry me up the hill if I can’t make it on my own!!!
Pleased the FECers are ploping well now…another simple thing that has a big impact - LOL
Got to make the most of this week now as I’m having a pow-wow with my boss on Tuesday to talk about the work situation. Should be interesting, although having said that she’s been brilliant so don’t think there’s anything to worry about.
Gotta run as I’m still in my PJs and its gone ten. Hmmm wonder when we will have to give up chemo as an excuse for things, or is it a lifetime excuse???
what a great post - really lifted my spirits to hear that the end is possible ! I have a port a cath till June 2011 but still it will be a great day when it is out !
Loocie - hooray, well done, free of your picc line yay!!
Jane - did make me laugh about your hem…Pile!! Strangely the only good side effect I got was my old hem shrunk with FEC and I no longer have it. Three cheers for a positive side effect LOL. And congrats for finishing. Will you now be joining the Rads club?
Helen - got my Tamoxifen yesterday and can’t bring myself to take it yet. I didn’t really want to go on it for 2 years (followed by an aromatase inhibitor for 2 years) and was thinking of having ovarian ablation. But the Onc said that even if I went down the ablation route it would still mean that I might have to have tamoxifen or something else as they can’t guarantee that ablation is good enough. I know I’ve got to start it but I am hesitating at the moment.
I’ve read that it’s hard when you come to the end of treatment or have finished it - you feel as though it was full on and then nothing, leaving you feeling a bit ‘lost’ and forgotten. It’s a tough long battle every step of the way.
Hayz - Hope the arm is improving? When do you start Rads?
Babs and Anne - sounds as though you are both doing well coping with the s/e’s. Congrats on your evacuation LOL! We do talk dirty on here don’t we?
One thing I have found is that we are faced with so many decisions which screws my head up sometimes. And now I have changed my mind and have decided to be a part of the Radiotherapy trial. Just got a phone call - have my planning, tatoo on Monday and then start 18th Feb.
Hi Ladies YIPPEE half way through, had fourth EIP Monday next CMF 4. on next 3rd week having C then C the following week which counts as 1 cycle don’t know anymore yet, weird but quite looking forward to the change as been told not as bad as EIP, which is very searching and I’ve had the last two cycles reduced, though SEs weren’t any better.Did I read sometime back about a brownish mark on vein site also anyone had red palms, soles of feet, face and chest, last usually 24hrs, any answers please?
Well that’s all about me, selfish madam,I am getting a real chemo brain (one of my nurses call it baby brain I feel quite insulted daft what? I think really it’s because she’s not long had one)
How you doing Marli?
Well done to everyone finishing tox and good luck on the Rads.
Helen, Jane, Looci, Lyn hope everythings well for you.
Welcome to the new recruits, I never would have got this far mentally with out this lovely group, so you’re really in good hands.
Sorry about the length of this, hopefully my brain will return soon LOL. Cheers everyone Love Kath XX
Everyone seems in good spirits these days…long may it continue!! Glad everyones bowels are behaving & performing! ;o)
Loocie…WOOP WOOP!! No more picc line…congrats!!
I had an apt with the onc today & signed my life away for rads…I only need 4 weeks & not 5! WOOHOO!! I know it’s only a week, but it means I’ll be finished before the end of March!! How exciting!! Having an mx has its benefits! LOL
I discussed Tamoxifen a little with her (only scored 2/8 for hormones), she said it probably won’t work with being triple neg, but she’s happy for me to give it a go if I feel the small % in benefit would be worth any se’s. She said we’ll discuss it in more detail towards the end of rads. She mentioned Zoladex (?) to supress my ovaries…to which I asked ‘can you not just take them out?’ She said that was probably the best option for me, she just wasn’t sure if I’d be keen…but I am!..stuff injections every month!! If I’m going to have an early menapause within the next 5 years anyway then I’m as well getting it out the way now!!
I’ve also been referred to the Lymphodema specialist for my elephant arm & to the genetics team for testing. Fingers Xd that test comes back negative…really don’t fancy another mx!!..and I’d be devastated by the implications a positive result could have for my daughter…and my sons too.
so, I now have to think long & hard whether or not Tamoxifen would be beneficial/worth it…EEK! I think that’ll be a hard one to decide. And I have an oompherectomy (sp), recon, maybe a new nipple & possible boob job on my real boob all to look forward to! Can’t wait! ;o)
Lynn, good luck with your tats on Monday…I’ve always wanted to get a tattoo…d’ya think they’ll do my kids names in lovely script writing on my wrist for me too?? PMSL…I think I’ll have to do with wee black dots like everyone else…how artistic!
Good Luck to everyone with chemo & rads…anyone who’s in between the two…ENJOY…I’ll be joining you a week tomorrow!! YAY!!
everyone’s coming along nicely at the mo - soon we’ll all be finished! Only two more rads for me then that’s it. I’ll miss going to the hospital every day - won’t know what to do with myself lol. And no more excuse for getting away with murder/not doing the housework/being grumpy/lying in bed all day/getting fat etc. Uh oh. I think the OH has been saving up his wrath at my sloth (now there’s a good phrase) until the moment when he can let loose and I have a nasty feeling that moment is fast approaching!
Met my onc today (sort of by accident) who said I was looking loads better than the last time he saw me and obviously I am on the mend from chemo. He said I really must start the tamoxifen on Monday - no more excuses lol! I’ll let you know how it goes, here’s hoping the side effects are minimal.
He also said that he went to a conference in the US in Dec about breast cancer and the two main risk factors which have been categorically established as a cause are… alcohol and obesity. So girls, no more drinks and the treadmill for all of us I think!
Had a dreadful night sleep last night because … I was TOO COLD!!! This is ridiculous - I go from one extreme to the other. I had to get up and get a hot water bottle, add a duvet to the bed and put on socks and my dressing gown just to fall asleep. And four hours later I was throwing it off again because I was TOO HOT!! It was a bit of a novelty being cold though - not been cold since about November. My onc says the chemo affects the hyphothalamus (well, I think that’s what he said anyway) and sends the body’s temperature control haywire. Well it’s certainly doing that to me. Fortunately, though, the hot flushes are diminishing and are more like warm flushes now, and not so many of them. Here’s hoping the tamoxifen doesn’t start it all off again.
Anyway, it’s 5pm and I haven’t made the bed, done the washing up or cleaned the house and the OH is due home soon - must make like I’ve done something constructive with my day lol. Did manage 1.5 hours at the gym this morning though, that’s three times this week already now! I’m on a roll.
Hi Ladies,
Well done Kath, halfway through and not long now. Well done. You were right about a brown stain. I had two on my arm right next to where they do the blood tests. I think the first came up a few days after Fec 2 and then after Fec 3. They didn’t hurt or itch and nobody seemed to know what they were. They have disappeared now. Just looked like tea stains. I also had red blotches over my hands with first Tax. Really red blotches. They then became a bit uncomfortable and I had to stop using hand cream and use aqueous cream because they peeled like crazy. I only got one blotch last time, no peeling and as yet nothing this time although it is a little early. My nails however are not good, peeling from both ends and a bit sore. Some look like I’m growing out false nails and others look like I’ve bitten them down halfway. Very attractive.
I am def joining the rads club but don’t know when as they were ‘too busy to talk to me about it’ last week. Think I am only having 3 weeks but not sure.
I am also joining the Tamoxifen club but don’t know anything about that either!! I am apparently still not through the menopause so will start with Tamoxifen but am not going to read anything about it so it will be a lovely surprise!!! Doc said start two weeks after last chemo, pharmacy said 3 - a good start!! Perhaps 2 1/2 weeks will be ok?? Am sure someone here will tell me more!!
I’m not looking forward to no more sympathy, no excuses to do things etc. Chemo brain is def going to last for a long while yet!!!
I work as and when I want in the craft world tutoring and demoing so that is also a hobby which I get paid for. Lucky me!! Not looking forward to my next demo without nails as everyone looks at my hands!! Never mind I’ll have to try the stick on nails and have them pinging off together with the black caterpillar creeping across my table which was really a false eyelash but refused to stay put!!
Love to you all, you all sound so cheerful at the moment,
Jane xx
Shall I start of cheerful (which I have been recently) so as not to break the general flow of the posts or shall I have a mini rant first.
Just quickly so that I can get it off my chest - was feeling quite positive, must get fit etc. Also noticed Loocie on her spin bike and Helen in the gym and thought the good riddance chemo club have started to exercise so get off your arse and get moving. So started yoga at the local cancer trust and yesterday decided to do some exercise with my daughter in the lounge. Some yoga, dance moves, light aerobics and then ‘PING’ went my calf muscle!! Well that wasn’t what I had planned and scuppered my plan for a nice day out today as I can’t walk properly and hobbling…Looks like I am destined to be a prisoner in the house doing b****y chores all day long!! Well mini rant over - feel better now.
Cheerful Now
Helen - that was very interesting what your Onc told you about the chemo drugs affecting the temp control. I am neither one thing or another. I am mostly cold, but then the sweats in the evening and night make me boiling hot and then back to cold again.
Jane - I was given Tamoxifen on Tuesday to take straight away ie 3 weeks after chemo. I haven’t actually taken any yet, have been hesitating. Also trying to hide my nails at the mo, as 6 have come right off, leaving 4 rather maingy looking ones! Just trying to imagine your class with caterpillars on the desk and nails flying everywhere…well your pupils can’t say that it hasn’t been entertaining LOL
Kath - well done half way there
Hayz - almost there now, hope the elephant arm is improving
