Glad to hear so many are rallying. xxxxxxxxxxxx and glad you’re feeling better too Den42
ADVICE PLEASE… I have a look good session booked for Tues, conselling finally came through for Weds (what timing!) and new silicone boob fitting (cant’ wait to get rid of beanbag) on Thursday, all on the cusp of week 2 of Fec 1. Have I overbooked? Not reconing on doing anything else as just walking round the block once a day is it at the mo. OH will chauffer. Do our white cells drop off so quickly on Fec 1, should I wear a face mask?!!
Cheryl, I have low BP too, you may sit in church surely if you’re feeling dizzy?? I’m sure you’d be forgiven in the circumstances!
Peachez - go for it! Yes, you might want to avoid crowds during week 2 (good excuse for not doing the supermarket shop), and intentionally having coffee with a friend with flu is prob a bit daft - but otherwise, just go ahead. Your body will tell you if it’s wiped out - but none of what you have planned takes hours and hours, and it will all give your mood/confidence a boost - so well worth every second.
You’ll be a new woman by Friday!!! I must phone up our local version of LGFB - it’s run by another organisation just around the Salisbury area, but I could do with a bit of positive imagery in my head at the moment!!!
I’m amazed at the differences there are in the medications given post chemo sessions. Many have been mentioned on differnt threads. You would think there would be a standard basic regieme country wide that could be adjusted as needed. I wouldn’t want to be over prescribed but I would want to be supplied with the “just in case” meds.
I wonder how many of the doctors doing the prescribing have been through the side we are on. I had IV steroids and ondansetron before the chemo then three meds to take at home.
Ondansetron 8mgs twice a day for three days
Dexamethasone 2mgs two tabs three times a day for three days
Domperidone 10mgs two tabs four times a day if required
Peachez and Den42 my sympathies are with you hopefully your problems are now over and on your next visits you will be properly catered for.
Peachez go for it all -if needs be you could cancel out at the last minute by playing the chemo card if you didn’t feel up to it. I was having renovations done when I was diagnosed and was quite shameless and played the cancer card several times when organising days and times of delivery, installation etc.
Definitely, Peachez, do things while you can, but cancel or cut things short if you need to. People will understand. Rest before and after. Immunity doesn’t go all at once, if I understand correctly, and probably the same thing with red blood cells.
I certainly sat down when I needed to; I think it was just having sung the anthem, sat and then stood almost immediately for a hymn that brought it on. Then I was ok until near the end of the service when similar repeated standing and sitting (so automatic I stood before remembering) brought on another wave. So I sat for the remainder and then sat with some of the older ladies for coffee.
I mentioned it because I think a number of us are in or heading for week 2 and red blood cells can take a dive along with white. It certainly wasn’t serious, and unless it gets worse, I’ll save it to mention next appointment with the oncologist.
Diana, my tablets are similar to yours, along with an anti-indigestion tablet that begins with an r, but I had the IV after the FEC, not before.
These seem to be pretty common as a starting point, but of course age and medical history may play a part in prescribing. If there a range of possibles, specialists may have their favourites.
Thank you lovlies, confidence restored for the coming activities,and will be jumping up and down for better meds for Fec 2. Thank you all so much! xxxxxxxxxxxxxxxxxxxx P
just popped on to say hello, glad everyone seems to be feeling more comfortable.
i must say i,m impressed with you all - you all seem to know alot more than i do about everything. Me thinks i need to pay more attention lol. i,ve got no idea what tablets i had, but they worked - so thats good, chucked the packets away now. i wonder if that was a mistake cos i,m changing hospitals for the rest of my chemo. oh well never mind.
I’m sure the new hospital will get the records from the previous one and I seem to remember the chemo nurse telling me that my GP would get information about treatment and drugs.
Hello Fellow Feccers. just back from hospital.white blood cells took a nosedive and had a temperature of 37.6 Friday. Weekends are never the best in hospital as there was lots of bank staff and hardly a sniff of an oncologist. Felt very tired and washed out, still do.and this is day 11. Not had any good days yet. Hospital visit tomorrow so I shall be having a few questions as the next 4 months are stretching ahead looking bleak. I don’t want to dread the Fec 2 but I haven’t had a good day yet and the only outing I’ve had is to hospital. Moan over, I haven’t been physically sick but feel yuk!!! I don’t want to be a bedridden invalid for 4 months so will be asking questions tomorrow. Jan x
Hi Jan
Poor you- hope they gave you something to boost your white blood cells so you start to feel a bit better soon. Will be thinking of you tomorrow - good luck with yet another hospital visit- let us know how you go.
Love Diana x
Hello fellow feccers
I was wondering if anyone can tell me when the danger time of low immune system is over. I am 7 days post Fec1 and have been very lucky as apart from feeling tired I have not been too bad. I am having a blood test on thursday (Day10)If this is ok then has the danger point passed and if it is still low do I still have to be extra cautious about infection or can I relaxed a little. I ask as me and my husband would like to get out and about a little if possible before Fec2
Thanking you in advance for your insights and best wishes to everyone
Janet
According to the brochure, the low point for immunity is days 10 to 14, and then it starts to improve. I’m pretty sure I’ve read that people often do most in week 3, because they generally feel a bit better then.
Obviously if you feel unwell or get a fever or other worrying symptoms any time you should report them, but we need to keep our morale up as well. I think the general tiredness gets worse as we go through the cycles, so it may be now or never!
I don’t think we have to stay in isolation unless there is a really good reason to. I hope it’s true that the flu season is tapering off.
Jan, sorry to hear your still poorly. I have managed to stop throwing up, but my walk today did puff me out somewhat. Hope they get you sorted better for next time.
Agree with Cheryl, my bumpf says days 10-14 is lowest immunity point too. Pack a thermometer and your “Go straight past go do not collect 200 germs from the waiting room” emergency admission card wherever you go…!
I do hope I can get out for my fancy meal at the end of Jan (wedding anniversary) it will be just before Fec2!
Not sure if the following is of use butI know there is mention earlier in this thread about the white cell injection. I am pretty sure that someone on this thread had it under the nhs though I think it may be a bit of a post code lottery as to who in the UK can get it. My nurse said it cost £1,000 hence the lack of offer I suspect. However, it would be worth asking about it as it may be given under extreme circumstances and surely if a patient has been in bed and when not in bed, in hospital hopefully and nothing else there is a case for giving it? Would be worth kicking up a fuss for.
Den42 - postcode lottery indeed. Some women aren’t offered until/unless they have a nasty episode (neutropenic sepsis), some are offered it from start, and some (me included) are given it prior to starting TAX - but not with FEC. TAX is harder on the system, generally, than FEC - but if my bloods had been low with FEC, I would have been jabbed then. So far, all good.
Yup, on immunity - days 10-14 are lowest. You don’t have to sit in isolation, but if you were due to meet a friend, and said friend had flu or stinking cold, or shingles… then you’d want to cancel and maybe chat over phone instead. Also good days for pleading incapability if supermarket shop looming… but in all honesty, most of us just get on with it. Did consider making kids wear SARS masks as modelled in Japan during bird flu outbreak, but so far kids have been unusually germ free.
Week prior to chemo is def. best week for just getting on and doing whatever the hell you want… so go for it, all of you!!!
Hope you don’t mind me chipping and joining you. I had 1st FEC on 10th jan (after 2 attempts with doxsetacsa (Spelling ?)and so far have only suffered with woolly head and walking slowly.
I was given the injections to boost the blood cells without having to ask. In fact i asked whether i really needed them as i was worried about un-necessary side-effects (aching bones, sickness). The Onc said that they were offering it to me because i was young (41) fit and, cancer aside!, Very healthy. I inject from day 5 for 10 days. So far so good, but obviously early days. I’m in staffordshire.
My mouth felt like it was going to erupt last night, but i keep drinking, clean 3x a day and sluice with mouthwash. Ginger squash seems to calm it too. Is ginger known for soothing? I know it helps with sickness.
Some spices, like turmeric, have a mild antiseptic effect, but I don’t know whether it’s that with ginger or a counterirritant effect. We’re all in ‘whatever works’ territory in any case. I’ve been using the Difflam regularly and so far nothing more than sensitivity. I am letting things cool more than usual and brushing with a child’s toothbrush.
If I can ask, do you mean you had a bad reaction to another treatment and therefore it has been changed?
I was told that if my white blood count dropped below a safe level or if I developed an infection, I would be taken into hospital, but then I’m 20+ years older than you. Hmm.
Sorry, are we talking about red cell counts? There I was told I would get a transfusiion.
Couldn’t make my hospital appointment due to upset tummy. The Onc rang me up and had a chat about the neutroponic sepsis at the weekend. She has adjusted my meds. I’m to have the single injection and some different sickness ones. I thought I saw somewhere that we couldn’t eat live yoghurt but she said that is rubbish and she’s never seen a neutropenic sepsis with a live yogurt culture, so go for it. It helps balance your tummy. So much information and different advice out there. Thank goodness we can all share what we know. She did say days 8-14 are the days to be really careful about germs and maybe check your temperature from time to time. I am feeling a bit better this afternoon so maybe the good days are coming. Yipee!! x
i had an allergic reaction to a particular chemo mix - couldn’t breath, flashing lights. About 1 in 10 people have a reaction to this partic’ type of chemo so not entirely uncommon.
It is the white cells that the injectios are for. My mum was with me when i was asking about the injections and the Onc said “We wouldn’t be offering it to your Mum” She’s 65. I think it’s worth an ask to see if you can get it.