So frustrating! You gear yourself up to these things and then something happens, plus it delays it all! Grrrrrrrrr blxxxy disease. Feel for you. xxxx
Am sitting waiting to be seen feeling rather sorry for myself. Pathetic isn’t it. Had geared self up for round 2 tomorrow and organised things for kids school pick ups etc etc around it. Am also really cross - if I hadn’t called them this morning to ask for blood count I get the feeling I would have pitched up for chemo tomorrow and turned away
So my neutrophils were 0.1. Eek. Dr said unlikely that they will come up to 1 by tomorrow so looks like chemo delayed until after weekend. I hope they can find me a spot on Monday to have it done. Ah well, I suppose it was too much to expect things to run to plan. Just hope the gcsf jabs boost things up. Anyone had any experience of taking them? I read they can make you quite sore?
Sorry for moaning on. I think low blood count is making me feel achey and tired and emotional!
Hi Egg,
I have taken a course of 7 gcsf last cycle and will be again this cycle, from tomorrow. I found them ok apart from the embarrassing experience of breaking the first one by not taking the cap off and trying to force the syringe through it - oops!. As the instructions were at the level of ‘peel back the cellophane, take syringe out of wrapper’ etc we thought it would say if the cap needed to come off, but it didn’t say and it looked like it had a small perforation at the end as if the needle would go through it - sadly no. Apart from that, it really didn’t hurt as the needle is so fine and I didn’t notice any side effects last cycle.
Good luck and hugs !
I’m on my second round of 7 day G-CSF jabs. I’ve had sore joints for the first day but it quickly subsides. Nothing too bad.
Hi there,
I just get one injection to do 24 hours after chemo - it’s been fine so far although I have to get my OH to do it as I’m a wuss ? Apparently they cost £800 each one nurse told me! ? And the onc mentioned that Emend are £200 per pill ???
Just had my 3rd round of EC - feeling happy as onc said the lump was clinically smaller (not even a ruler this time!) and felt like it was starting to break up woohoo! He was happy with that and I have an ultrasound on Saturday to measure it more accurately.
I also found out that I don’t have the BRCA mutation so I’m super happy despite being pumped full of toxic drugs ?
Good luck to Suze and everyone else today!
Ali - you made me laugh as yesterday I was wearing this funny dressing gown I have that looks a bit like a smoking jacket, no hair, no make up and told my OH I felt like I should be presenting The Crystal Maze!! Good to know it’s not just me feeling like Richard O’Brien!!
Xxx
What no ruler??!! I’m trying not to prod the alien lump to avoid dissappointment. Maybe it will happen at round 3. I might buy onc a new ruler to celebrate if its shrunk!!
Thanks all for letting me know about gcsf. I’m just cross as I had bloods done yesterday morning, they specifically said they would let me know if they were low, but it was me who called this morning to find out. I keep thinking if I had known yesterday afternoon, I could have had a jab yesterday and today and then maybe had chemo as planned tomorrow. I suppose 2 days delay on grand scheme of things doesn’t make a big difference, but still… I guess I should get used to things not going smoothly and to spending many many hours just waiting in hospitals!!!
Wtp - great news on your lump shrinking!
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Wow £800 per gcsf injection.I get 7 that’s £5,600 plus £600 for the Emend that’s £6200 per cycle. And that’s without the cost of the FEC-T and radiotherapy and hormone therapy.Gulp.xxGod Bless our NHS and the wonderful staff!
Oh, egg how frustrating. But as you say a couple of days isn’t too long a delay. And better than being really ill. (Obviously, cancer is ‘really’ ill, but you know what I mean.)
wtp -wooohoooo re the tumour shrinkage. I’ve got my MRI booked for after my third cycle, so I’m keeping everything crossed.
Ali x
Mooney now that you’ve added it up I feel better that I’m having some expensive gcsf thrown at me?
I seem to have gotten hip pain already after the injections so am limping around like an 80 year old trying to get my young son out of the bath!
Thanks so much for that info blueash.
They tell us nothing here.
I had to fight for a precise diagnosis and my path reports.
No doubt if my bloods are not right I will simply be given “something”.
They seem to dislike giving patients information.
It’s so frustrating.
I’m feeling scared now! At my hospital we don’t get given gcsf injections - I only know about them from coming on here.
Added to that, I had to go on public transport in the rush hour today and I’m on Day 9, a low day. Got to do it again tomorrow. I wore my mask and got some funny looks. I’ve made myself a badge to wear tomorrow saying Low Immunity - hopefully I won’t get so many strange looks. Also might get offered a seat. I just hope the mask did its job.
Although it was tiring doing a long working day, it felt so good to be a normal person for a change and to escape from my bubble. Also today was the first time I wore my wig. It was on twelve hours as I left home at 7.00am and got home at 7.00pm. Amazingly, it was really comfortable all day! I never expected that! I more or less forgot I was wearing it. (Didn’t wear a wig cap though - that was agony when I tried it). So feeling slightly better about hair situation.
Blueash, I’m still taking supplements. Got to try to boost my immunity somehow. All the medical staff I speak to about it say it’s fine to take them. Do you think they’re not doing any good?
Would love to reply to everyone but can’t remember all the things I wanted to say and I’ve got to go to bed early (and await the insomnia). So will reply to everyone soon. I just think you are all amazing. R x
Hi, Robin.
Don’t stress. While Blueash is correct about the motivation for the injections, quite a lot of areas don’t give them. I’m at Guy’s and they essentially said if your white cell count drops so low you’re in danger, we will treat you then! It seems to be purely a resourcing issue. They reckon only 5-10% of people need intervention on this. So don’t want to treat 90% unnecessarily.
I’m having to travel on the tube etc and currently wrapping a scarf over my face as I go, I’ve made myself quite nervous and then decided that as long as I’m rigorous about taking my temperature etc I can always access treatment.
Ali x
Wow Robin, what a long working day. How fantastic you feel able to do it. I know what you feel about the bubble it’s just lovely to be normal and glad the wig felt good. I think I may try mine without the liner. I bought a nice silky bamboo one but it makes the wig so slippy on my head. I tried to tie scarfs today inspired by Ali and found some good You tube tutorials. Came home this evening whipped the wig off and tied and wrapped and tucked a scarf. It only tucked me a few minutes and I think I have found the solution to what to wear at home!
I would try not to fret about the gcsf injections, I have a friend who has chemo in Lincs who doesn’t get them either, so not sure what the criteria is.
Lump smaller, whoo hoo WTP!
Love and hugs to all
Mooneyx
Jackie - good luck today with round 2. We were chemo twins but now i’“” be delayed. Am really keeping fingers crossed I can go on Monday and that blood count will come up over weekend. I couldn’t sleep last night from aching pelvis, and could barely walk down stairs this morning. Felt like was 80 years old and very sorry for self. But I guess bone pain is a good thing as it means it’s trying to produce some white cells. (I hope!) I think it may have been more painful because blood count was so low so I guess they have to work harder. Sigh…
This chemo thing really keep us on our toes doesn’t it ? I had chemo 2 on Tuesday, with Emend prescribed, and administered through newly fitted port - all seemed ok, did 48 hour fast again and not been sick, just very tired. Then last night I developed a painful lump near the vein in my hand, where chemo1 was administered way back in early Jan. You know that feeling about lumps?? So whizzed off to gp and phoned BC nurse. Gp checked it out, inflamed vein which must be from chemo 1 as this week’s lot went through port. I guess it shows what powerful stuff it is. I think maybe the steroids are not helping, but I just felt so panicked. Does anyone else feel like this when something crops up, or is it just me…?
Ebim - what dose of turmeric are u taking? I also had it but stopped as was told it could interfere with the chemo. So am trying to put it into food (soups etc) whenever I can instead of taking a high dose supplement. We all get told different things don’t we. I asked Registrar yesterday about loratidine with gcsf, her reply was “people take all sorts of things but there is no evidence” - but I know lots of people in the US are given it with the jabs. Anyway I took it but only after the jabs - today I am taking it before the jab to see if it makes any difference to the pain and also obsessively checking my temperature. Has anyone else found anything that works for the bone pain that I can just buy over the counter?
Thanks all,
Egg x
Hey, Jackie. Dr Google says 4-11 is normal, so I think you are fine. Mine were high after chemo 1.
If you hair hair has come out, they’ve definitely put some o that poison in you, so don’t stress.
Ali x