Good luck for tomorrow saffronseed must be a relief to know it can go ahead! Like you said we all just want to get it over and done with!
Tina love the hat it looks fab. I am off wig shopping tomorrow with friends treating it as aday out. All rather strange, think they are looking forward to it more than me! Dont even think I will wear a wig! Still only have to pay £3.00 so might as well get one!
Tors totally understand where you are coming from. I was what I thought a fit young woman before this all started and now I find myself worrying about every ache and pain and on days just feeling totally c**p.But I will get to end of all this!
I have suffered with low temps lately 35.3 and never now whether I should contact docs or not as just feel really tried not “ill”.
Shocked other day as 12 yr old daughter asked if she will get BC when she is older! I hadnt even thought about her worrying about getting it herself! Just shows that their minds wonder the same as ours!
Well good luck to everyone having/had treatment this week or those going through surgery!
hi everyone,
really pleased your levels raised enough saffron, good luck tomorrow. Its odd idn’t it that you sort of look forward to chemo?
Thanks Tina and Tedoris too for your encouragement, i feel a lot better tonight, and really appreciate it. Once i finish these antibiotics I will have a few glasses of red wine.
Hi
Bought a thermometer today in preparation for chemo. Must be a verp poor parent not to have one already! My temp is 34.5 so either I’m hypothermic or the Boots thermometer is rubbish! What is my ‘normal’?? I’ll ask at the hospital tomorrow I think…
Suex
I had my first chemo 30th April and like you read too much info
that was really unhelpful. I read that sugar, dairy, red meat
and everything else you could imagine was bad for cancer only
to be told after that to carry on as normal with a well balanced diet was the best option. Why is this not explained beforehand??
Because everyone is different you need to listen to your own body
and give it what it craves for but in small doses. Drink plenty
of water and make sure you have the anti sickness injection because
the pills tend to make you more nausea. Try not to worry and take
a day at a time it is a long journey. Good Luck Dorcas.
Hi All,
Saffronseed…so glad your counts are recovering so well and you can go ahead…yes keep on with the wine hun it looks like it’s the miracle cure!!!
Tors…sorry you are feeling a bit down and gosh…your long list of worries!!! I sent you a pm as we are pracitcally neighbours, looks like we may bump into each other at hospital. Hope you feel much better very soon…me too re the healthy and fit person (I can’t say young as I am 10 years older than you but even that’s not old!!!) then suddenly bam you’re dropped into a world where every slight twinge shouts DANGER!!! I have a dance school near home so that’s my exercise and normality each wek for me.
Tedoris…hope all is going well for you…glad you enjoyed the concert.
Scoobs…sent you a pm too, I’m still waiting for apptmnt to see oncologist but that will come soon i think. Thermometer…look like i will be adding one to my shopping list, there’s so much I still need to find out about chemo and coping…so glad we can come here and get so much helpful information and support.
Catch ya’s all soon
Hugs Suze xx
Hi this is my first post - not sure if Im in the right place but Im sure someone can put me right! I had my first FEC a week last Thursday (29th April). I felt sick for the first 4 days, went off tea and coffee and had cravings for certain foods - a bit like morning sickness really. Since then I find that I have bursts of ‘normal time’ followed by rests and my appetite is normal. I havent lost my hair yet but it is thinning. I seem to be coping okay really and wondered if it gets worse as you have more treatments? Also my 8 year old son started coming down with something last week so the hospital advised me to go to my GP and have my blood count taken. The hospital rang me on Friday to say I was neutrapenic and I had to be extra careful because of the risk of infection. So all weekend I stayed in, cleaning and disinfecting the house and washing my hands over again like I had an acute case of OCD. Anyway today I get a phone call from the GP who had just got the results of my blood test and she was really concerned that the hospital hadnt done anything and when I told her I had my 8 year old son off school she nearly had a hissy fit. Now I feel really worried even though I feel totally fine and my temp is normal. I dont really understand how far you should go with the keeping away from people. At first I wanted to carry on as much as I could but the hospital advised me not to go to college but to work at home and I have had to put my teaching classes on hold. I also have a small glass workshop that is open to the general public and as much as I would love to go in I dont want to put myself at risk. People have said say dont isolate yourself but I really dont know what to do for the best really - I know my really long list of things to do has now got one thing on it and that is ‘Look after yourself’!! Any advice before I go and buy myself an isolation tank?
lizzy I agree its really hard to get the balance between isolation and a normal life.
the advice I have been given is don’t go to crowded area’s events particularly when your immune system is at its lowest day 7 - 13. You also shouldn’t go near anyone with any sort of infection/cold etc - and that could be close family (how you manage that I don’t know). If your temp rises and your blood count is low then there is a danger that you become neutrophenic and it is life threatening so you do need to be alert.
I am planning on returning to work next week. I will work from home mostly when i need to go into the office I will travel in my own car and just pick stuff up - I won’t eat or drink anything from work and will take all my stuff in. If it doesn’t work out then so be it but I do need some sort of normality in my life and hopefully being back to work will give me that. My health is my priority at the moment though and I have around 3 months left where I need to be totally selfish and think of me and I decide where I go and don’t go (no one else).
Just off to my 2nd FEC now - Am feeling good at moment and hope that continues…
x
Thank you for replying - I am so fed up as I am usually so active, now I feel like someone has hit me with a frying pan and stopped me dead in my tracks!
I need to find out more about being neutrophenic I am going to ask the oncologist next week. I have been reading some of the posts and apparently you can have injections to boost the cells. I have been eating really healthy but apparently this is good but wont help replenish the cells?! (and Im sick to death of pine nuts!) I just hope that I can have my 2nd treatment next week so I can mark another off the calandar.
Good luck with your 2nd session - I hope all goes well x
Hi all,
Just had first FEC and all went smoothly - luckily I didn’t have any sort of allergic reaction and my vein behaved. Feel fine at the moment and am trying to drink lots as advised. I’m usually rubbish at drinking enough liquid so will have to force myself! The district nurse is coming tomorrow to give me the bone-marrow boost injection. Apparently she might train me to do it myself after that. Does anyone else DIY?
With a family especially I don’t think it’s realsitic to be completely isolated from risk of infection. I think you just have to be sensible and ring the hospital if you’re at all worried. GPs don’t necessarily have a lot of experience of chemo so I’d follow the hospital advice. (The nurse today gave me an NHS thermometer as I explained my problem with the one I bought yesterday. Just checked my temp to see if it worked: 35.8! So I am clearly cold-blooded. If it gets to 37 I’ll be worried!)
Sue xx
Hi Sue, glad all went well today, these are the counts they use for to check your risk of infection,
usually with the G-CSF injections the count recovers very quickly. I had the neupogen when my count went to 0.5 and the neulasta after the 2nd FEC. Neulasta is longer lasting and you only need one jab, with the neupogen you usually have several jabs. It’s easy to do yourself. It’s the chemo dosage that based on height and weight, not the G-CSF, but I only got weighed once right at the start of treatment.
Risk of Infection based on Absolute Neutrophil Count (ANC)
ANC greater than 1500 No increased risk of infection
ANC 1000-1500 Slight increase in risk of infection
ANC 500-1000 Moderate increase in risk of infection
ANC 100-500 High risk of infection
ANC less than 100 Extremely high risk of infection
Have today been told there is slapped cheek syndrome in my youngest class at school. Hope he does not bring that home!
Hope the side effects hold off for everyone. Tinaxxx
Hi everyone.
I feel so so so much better today! Have energy and less anxious.
Salsasuzi- yes we are neighbours! I have PM you back. Hang off buying the thermometer, the lovely chemo nurses give you a good free one on your walk round visit
Scoobs- I have to sing/hum to distract myself everytime i have an injection/needle so the nurse said I wasn’t a candidate for diy jabs! To be honest it was quite nice to have the nurses visit me for a few days after the chemo as i felt like they were keeping a watchful eye over me. Well done on your first fec, take those sicky tablets! I drank the small bottles of water that are 500ml each and 4 of them is 2 litres and was easiest to keep track of. My normal temp seems low too, low 36’s so if i get to 37 i will be worried too!
Lizzy- the neutrophenic thing scares me too, as is pretty obvious from my posts recently!Yes, there are injections you can be given to boost your white cell count, i had one a day for 5 days after my chemo which was the same day as your first one! I have been told that being neutrophenic is not a probem in itself, its just a problem if you get an infection as then your neutrophenic status means that your body cannot fight off the infections well and a minor one can turn into a serious one quite quickly without medical intervention. The hospitals seem to take it really seriously which is scary but also good. The dr at a and e told me that if i had any signs of an infection such as high heart rate, high temperature etc they would have admitted me to be on the safe side, and when he said I could go home, he told me to check my temp 4 times a day over the 7 to 14 day period ( I have done it much more!) and if i get breathless, high temp, cough, burning when i wee, general feeling of not being well etc then to go straight back as they would check me again and better safe than sorry.
The balance between isolation and living as normally as possible is so so hard. I have collected and dropped off my son at school, but didn’t go in the classroom, just stayed in the playground. I haven’t been in shops, but did wander round the garden centre and sit at an outside table in the cafe.I went for my wig trim and just made sure i sat alone and kept my distance a biut. I couldn’t go near my boys much last week as both were the epitome of a walking germ bed and that was really hard. Paranoia v sensible is hard balance to strike!
Saffron- hope number 2 went well and that you get absolutey no side effects whatsoever…
Tina you are a good source of really useful information - I have saved loads of your links and info its so useful to have to refer to - Thanks for doing it very much appreciated.
Scoobs you can do the injections yourself - its a very fine needle in your tummy and doesn’t hurt - however I just cannot bring myself to jab it into myself so my husband does mine - the nurse showed him how to and now he quite an expert - it saves you having to wait around for district nurses to arrive.
Lizzzy eating well and sleeping well with some exercise will help your blood counts go up naturally (so I am told) mine increased from 0.7 to 2.6 (yes 2.6) in a week by just doing the above - although i did sneak a glass of red wine on Saturday (as advised by BCN. I think fatigue is a natural side effect of the drugs being pumped into you - you need to rest when your body wants you to.
Tors glad you are feeling a bit better and have more energy.
Salsasuzi I too had a thermometer from the clinic as I felt the one I bought was faulty - but no my ‘normal’ temp is around 35.6… I thought was low but the nurse said that is ok… When i was neutrophenic my temp spiked at 38.7! It was 38.2 when i was admitted with neutropils at 0.3. I think you know as you feel ‘unwell’.
I just got back from my 2nd FEC - my veins were ok and didn’t even hurt this time! so far so good I feel ok - so please that I am now a 3rd of the way through my chemo…
good luck to everyone and keep those side effects at bay xxx
i love the maths after second chemo- one thrid of the way through, then after 3 you are halfway, then after 4 you are two thirds, thenafter 5, you only have one left!
I like your maths, I’m only one behind you.
Take care
Love Maria
exactly! i have the date for my next one, 1 June, so then I will be half way through wooopeee…
well i will be a thirsd way through hopefully by next thursday night…keep sipping that water saffron!
Saffronseed, I am doing the same maths as you, we are are only a few days apart, my 3rd FEC is 27/5! Hope that by the time school holidays start I am done!!! Tamoxifen for you after that, too? Tina
Actually my maths are right but after the 1 june I will have finished my FEC and then I start 3 Tax, so I will be halfway through but have a new regime to get used too (which I think will be more problematic from what I hear).
I have to have rads afterwards not sure how many but think its only 9 (as they tend to give you fewer but higher dose’s in my NHS trust). I think I will have a short break between chemo finishing and rads starting though but not sure for how long… I would prefer to just get it done and over with. I will then be on hormone tablets from 7 years they said but not sure which one yet and I don’t know when it will start. I am concentrating on my chemo at the moment.
No dreadful side effects really even had two cups of tea today which was good, so fingers crossed…
hope everyone else is ok - had my head shaved today its all gone now… got the wig out the box its a bit itchy but will get a photo of me in it and put it on the site!! I am currently wearing scarves which are ok and not getting any funny looks which is reassuring.
Hope everyone else is ok and keeping well…
Hi everyone
saffron, i too have 3 tax cycles after my 3 fec, and i get the impression that they are worse, though my friend who is an oncologist just says they are “different”…
But i think by the time we are getting the first tax dose, then there just being 2 chemos left must be a pyschological lift? I then have 15 sessions of rads, followed by a boost of 4 rads, so 19 in total. Then 5 years of tamoxifen.
Well done on the head shace. I used the cold cap but have had a sore scalp and my hair is straw like today, so i think these are signs …
Salsasuzi- i am in next thursday for my second fec ( if my bloods are ok!) so might even bump into you in the waiting room, i will be the one spaced out on larazapan and clutching a hot water bottle to my right arm in an attempt to soften up those veins!
I had a Headscarf etc appointment yesterday and it was really good, I think hats are the way to go for me, and they had these little hair pieces and half wigs that you can wear to stick out under your hat/scarf. I was really amazed at how real it looked, and was so much cooler and comfier than my wig.
Hope everyone is doing alright and not suffering too much from se,
xxx
Sorry to but in however just had a quick read of Tors post with regards Taxotere. I have had 4 x Ec followed by 4 Taxotere, had my last Taxotere today!! Hurray it seems like forever since Diagnosed back in October and I can’t believe it is finally over. I am triple negative so no hormones for me.
I can honestly say that I have found the Taxotere a lot easier to bear than the EC and I was terrified. I tried very hard to avoid any posts about it before I had my 1st cycle of Tax because everything I read was negative. Don’t get me wrong I had side effects, including sore throat and mouth, thrush, heart burn and extremely sore fingers, I also have aching joints and it looks like I’m going to lose 2 toe nails. Which all sounds awful, but I only feel unwell and sorry for myself for one day the rest of the time it is completely bearable. A week in and I’m virtually back to normal.
All I wanted to say is that everyone is different and everyone will feel differently on each chemo, and you never know you may find the Taxotere a rid ein the park!
Well good luck to everyone who is just starting chemo just take as much rest as you can, drink plenty of water and enjoy the time your feeling well.
Love
Jayne
x