Tina,
very interesting about the injections.I have the one injection 24 hours after chemo_must be the neulasta.My gp mentioned I could have another injection,if my blood count was still low,but I didn’t ask any details.Can you have the neulasta and the other one.I think I need to start asking more questions when I go to the chemo unit,as I’m pretty clueless.
Hope number 2 goes okay for you tomorrow,and SE aren’t too bad.
G-CSF may sometimes be used before high-dose chemotherapy to make the bone marrow produce more stem cells. These extra stem cells can then be collected and given back to you after high-dose chemotherapy treatment. The stem cells then go back into the bone marrow and produce blood cells.
There are three different types of G-CSF:
lenograstim (Granocyte®)
filgrastim (Neupogen®)
pegylated filgrastim (Neulasta®).
These drugs all work in similar ways. The molecules of the pegylated filgrastim have had a substance added that helps the drug to work for longer.
G-CSF is available as a white powder, which is then dissolved in sterile water, or a colourless fluid in a small glass bottle. It is also available in a ready-to-use pre-filled syringe.
How G-CSF is given
G-CSF is usually given as an injection under the skin (subcutaneously), most often in the thigh, arm or abdomen. You, or people caring for you, can be taught how to give these injections so that you can continue the treatment at home. Alternatively, the injections may be given by a district nurse or GP practice nurse.
How often it is given
G-CSF is usually started a few days after the chemotherapy has been given, and is given daily for up to 14 days. Pegylated filgrastim is given once with each cycle of chemotherapy. Which of the types of G-CSF you get will depend upon the chemotherapy treatment you are having. Your doctor or nurse can give you more information.
Possible side effects
When G-CSF injections are given, the amount in the body increases greatly, becoming much higher than that which occurs naturally. For this reason, it causes side effects even though it is a naturally occurring substance. The side effects are not usually severe, however. People react to drugs in different ways, so it is not possible to predict who is going to have side effects or which they will have. The most common side effects are listed below.
Bone pain Some people have discomfort or a dull ache in the bones of the back, pelvis, arms or legs. This goes away when the growth-factor injections stop. Your doctor can prescribe painkillers if needed.
Red, itchy skin Your skin may become red and itchy around the area in which the injection is given. This will disappear once the course of injections is over.
Fever, chills and fluid retention G-CSF may cause fever, chills and fluid retention. Fluid retention may lead to swelling of the ankles or breathlessness.
Occasionally you may experience nausea, vomiting or diarrhoea.
Info from fact sheet I was given, I think from the Macmillan website. Hope it may help! xxx/tina
Tina, that was a really helpful and well informed summary, well done! i cant even read 4 words together or remember my name at the moment! Well done on school run. I think I may have to start telling more people, I have been hiding this with only a select few knowing, and i think maybe i may accept it more when i “come out”? Who knows!
Feel more positive today. Phoned to volunteer for a survey thing the local health authrority is part of, to help find causes etc of breast cancer. I just have to fill in a questionairre and have blood sample taken from my cannula at start of next chemo. Feel a bit stronger and played out with my boys a bit. I have also made an appointment with headstrong for hair scarf/wig/make up day, after somebody on here recommended them. I need to have my nhs wig trimmed and am thinking of phoning the trevor sorbie salon. Has anyone done that?
Cluck, hope your bloods are ok. Keeping on target to get this over asap feels so important doesn’'t it?
xxxxx
Hi Tors, well done, I think there are good days and not so good days, all we can do is try and do what we can to get through, I hope I will one day be able to look back on this year and think I coped ok and life in the future is not just all about bc anymore. People at school have been fab and Ihad lots of hugs and offers of help. On the flipside, chemotherapy day tomorrow and not looking forward to it! Hope tomorrow is another good day! Good idea with the survey! Xxtina
hope today has gone alright for you Tina, i feel better today, have got ready and been to vote, getting out has helped.
my scalp is sore today , think is a sign hair en route down the plug hole.
Well done tors, shows how strong you are! Yes,Ihad the scalp hurting a while before it went. Today was another experience, had allergic reaction to the epirubicin, they now think the blisteringlast time was allergy related, too, so the whole chemotherapy day was 7 hours long! They will review treatment plan if problems again. Glad got another one over and done with. Hope saffronseed and tedoris doing ok! Xxtina
Hi just popped on to see posts…
Glad to see you are a lot better today Tors and Tina the second one under your belt - sorry to hear about the allergic reactin though hope they get it sorted for you.
today I feel normal… I Feel the ‘normalist’ i have felt since before chemo and back to my old self. Even my veins have stopped aching! However my hair is coming out fast now, not sure how long I will hang onto it for and I will get it shaved off when it gets too thin - then I will probably stop feeling normal so I am clinging onto this feeling for as long as I can.
Next chemo due on Tuesday, although blood test on Monday. I just hope my bloods have recovered enough for chemo to go ahead.
I intend to have a good weekend, lots of fresh air and walks, BCN advised a glass of red wine would help with improving white blood cells… so red wine it is!
x
Hi Saffronseed,
So pleased to see you are feeling ‘normal’ whatever that is these days!
Good your veins are being kind to you!
Bad your hair is coming out fast!
Good Luck with your bloods on Monday!
Very Good Luck with your Chemo on Tuesday!
Oh yes and we must do as the BCN tells us! so have one for me!
Lots of Hugs
Sandra xxx
Hi Sandra hope you are ok and the wait for your mastectomy isn’t dragging too much. Yes I will have a glass for you too! but not until weekend as I am still on antibiotics at the moment.
To be honest I have got to the stage of resignation with my hair, I keep pulling my fingers through it and it comes out in clumps, I do have very thick hair and had a good cut last week I am hoping to hang on to it until Tuesday (thats my next goal!)
I never got my prothesis on friday either as I was in hospital- have another appt the week after next so having to live with my softie till then - but will let you know what its like when i get it…
love and hugs back
x
Hi Saffronseed, No it is not dragging, it is coming round very quick! the day before is our 42 Wedding Anniversary (not really that old!) so it will be a ‘funny’ week!
You are lucky to have a thick head of hair, dread my coming out, it isn’t thin, but then again is isn’t thick! probably say in between!! Lol! silly woman that l am.
‘They’ tell me the softies are not very good, so hope you are coping with it?
Just sent Maria a pm, as she is having her first chemo on Tuesday, l said l thought you were having your 2nd on the same day, you can compare notes!
Good Luck
Lots of Hugs
Sandra xxx
Hi Everyone, had my 1st Epirubicin chemo last Wed. Is anyone else on Epirubicin then CMF?
Was so worried about having chemo but was ok after. Only sick that night. Took anti-sickness tabs for few days after and much better today. Have described nausea to friends as like morning sickness. Actually expected it to be much worse but not sure if 1st is easiest then builds up? BCN says everyone different but now worrying when hair loss will start. Keep looking at hair thinking will I still have it next wk? Got wig ready but dreading wearing it. Still feels unreal. Am being positive and would love to hear from others at same stage of treatment
Hugs to all.
Kiti x
Hi Kiti,
you are just a head of me, I will be starting the same regime as you on 17th May, worried about the sickness… (delay in starting as currently in New Zealand with work, back next Friday! & it keeps me sane just a bit longer)I wonder that I am feeling so normal is that I have not yet started treatment. I wish you well
Love Jenny
Hi everyone - just to answer your question Jenny - for me the ‘sickness’ feeling wore off after about 6 days to such an extent that I didn’t need any anti sickness tablets at all. I have been eating normally and the only thing I haven’t been able to stomach is alcohol- I just don’t fancy it - although I am going to try and have a glass or wine at the weekend. My hair started to drop out around day 15 of first cycle and I am expecting to lose it all by day 2/3 of 2nd cycle. Everyone is different though, I think its the tierdness that builds up over the 4/6 cycles not the sickness.
Sandra Softie is ok - its comfortable to wear but it does ride up and even though I pin it to my bra it seems to gradually get higher and I am concious that I am not even - so the soon I get my prothesis the better.
Hope everyone else is coping with everything and not too tierd after watching the election - not sure about what it all means for us…?
Hi everyone
Just back from Edinburgh went to see Florence Machine. Concert was brillant and florence is totally mad I would get locked up if I danced like that! Any way it was great to get away and feel ‘normal’ for a least an hour while she played. Glad sickness has passed but feeling extremly tried (perhaps over did it alittle). I have been suffering with very painful hips and sore scalp! Hope this is normal!
Saffronseed I had my PICC line fitted on the day of my chemo it was done under local. It is placed in my upper arm and threaded through a vein to my chest. I had a chest xray to check position. It has to be flushed once a week. Not sure if this is simular to Hickman some enter on the chest! Have a glass of red for me not quiet ready for wine yet!
Hope everyone is fine, thinking of you Tina having just had your second chemo sounds like you had a rough time! Hope next few days arent too bad.
Any dates for you Sandra trying to catch up with threads but head not taking them all in!
Hi Tedoris glad you enjoyed the concert its great when you can ‘forget’ the treatment even if its for a little while. You seem to be doing really well so fingers crossed for you it continues.
My veins feel a bit better today although still a bit painful not throbbing like they were - I will ask about a line though (I don’t really fancy it but I think its better than the alternative)
Tierdness is something that I have noticed too - its strange because I am not really doing a lot but any exertion at all seems to take its toll on my body and my eyes get very heavy and I can drop off to sleep in a moment…
I will have that glass of wine for you too! I will make the most of it as I am sure next week i will not fancy it at all…
x
hi everyone,
hope you are all doing ok, and tina that your chemo is going alright( think its today, am getting lost with everyones timetables).
I have had a crppy time. I felt last week around day 6/7 i was doing alright, even though i was on antibiotics for a throat infection which i am sure i picked up from my boys who were ill all last weekend.
I didn’t feel better by saturday and felt wobbly, so off to hospital and was scared at how efficient they were at A and E. As soon as i showed the receptionist my Christie card and told her i was on chemo, i was taken straight through past the full waiting room, into the a and e bit, spoke to a nurse who whisked me straight into an isolation room and within 5 mins my obs were being done and my blood taken. They were marked urgent and back within an hour. My white cells were 0.8 which is below the threshold of 1 which means i was neutrophenic, therefore at risk of getting infections etc. I thought they’d keep me in which would have really upset me as it was my sons birthday yesterday and i didn’t want to miss it. In the end they sent me home as no evidence of infection, but strict advice re taking temperature etc.
Now i am scared that despite the bone marrow boosting jabs i still fell below the level. I am scared that
- I might get an infection and die
- i might end up in hospital a lot in isolation after getting infections,
- They may reduce my chemo dose so will it be less effective?
4.I may not be able to have chemo at all ( they haven’t said this as i haven’t been able to speak to my consultant yet) - Its another hurdle and i feel like i am holding on by my fingernails already and this nearly pushed me over
- I may not be able to have my next chemo if my count doesn’t recover. Will this delay affect the effectiveness of the chemo?
- If they delay the next lot, my timetable will be longer and i am just coping being psyched up for it as it is
- I am avoiding pepole like the plague and not going out to shops etc but then feel even more like i am withdrawing from my own life and makes me feel worse,
- I am finding it hard to find a balance between living my life and being totally obsessed by breast cancer and getting an infection
- my body is letting me down again as my neutrophene levels shouldn’t have dropped this low, especially with those jabs
- If my white cells have dropped so low, is there more chance my rubbish body also isn’t fighting any residual cancer cells because my body is just useless?
- I thought i was a fit 36 year old young mum and now feel a wreck with a rubbish body
- does everyone feel up and down emotionally and close to tears after this? Whats down to the effects of the chemo? Whats due to my emotional state?
- Is there anything i can be doing/eating/drinking to help them recover?
- I am sick of needles. getting a vein for the blood was hard again and it hurts and i hate it.
So thats me!I would love anyone who can help with any of this to post back as i feel a bit lost. Thanks everyone.
xxxx
ps. I did have my wig cut at trevor sorbie in manchester and it looks so much better, the lady was lovely, i was seen in a lovely seperate private room, it was not a hurdle at all and the trim really made it more like my own hair, and the clever fringe length covers my eyebrows a bit so will not be so obvious if they come out. It cost £60 for the appt but figure thats less than i would spend on haircuts over the next few months. I would recommend it definitely.
Hi Tors I understand exactly what you are saying and where you are coming from. Me too, a healthy and fit person, never had a days illness in my life and suddenly diagnosed with BC and the world has changed!
I too was in your postion - I didn’t got to A and E though (avoided that) but popped in to the hospital after a phone call, and after taking my temp and blood count (mine was 0.3!) they kept me in! I was neurophenic. My managed to creep up to 0.7 before they would let me out (4 days later) and I had to have intravenous antibiotics. it is very scary but I must stay very re assurring that they take it so seriously - If you get an infection and you are not treated then then it can be serious. The fact they acted as quickly as they did (for both of us) means that our lives were not in danger.
Like you I had the boosting injections too. I saw the Onc today to discuss my chemo tomorrow - she was very very relaxed about things. It is common that your white blood cells go down - but the injections should stop them going so low. However we are all different and for that reason they are changing the injections - I will have them earlier and for longer (for 7 days) she said hopefully that should do the trick and they won’t go down as quickly or so low. However our immune system is low between approx days 7 - 14 and at these times we should avoid close contact with anyone who has an infection. I agree its difficult to balance a ‘normal’ life particularly for those days and I will be keeping away from crowded areas etc for those days.
Your blood cells need to get back up to approx 1.5 (so the onc said) before they will do the chemo. Blood cells recover very quickly (apparently) and as long as you are eating well and doing some (minor) exercise then I was told my bloods would be ok. I had a blood test today in prep for tomorrow but the Onc didn’t think it would be problem (as I feel well).
I am not sure when your next chemo is but eat well and get as ‘well’ as you possibly can with plenty of rest (and some exercise) you should be ok. My BCN told me that a glass of red wine would help improve bloods too - so on Saturday I had did just that (and enjoyed it too)
My Onc said that once they get the boosting injections timed right then it should help and she didn’t think I would be neutrophenic again - I hope not as it is not nice being in hospital in isolation but to be honest if it happens again i would prefer them to admit me and look after me rather than take any risk.
I hope this puts your mind at rest a bit. Why don’t you ring your BCN and have a chat to her as I am sure she will re inforce was I have said.
Glad to hear your wig is ok and you are pleased with it - mine is still in the box hidden away. My hair is coming out in handfuls now and I don’t think I will be able to hang onto it much longer - a trip to my hairdressers probably on weds after I have had my Chemo tomorrow (all being well)
Anyway take care - I know its really sh*tty but you can do it - one under your belt and only 5 to go!!
hugs x
PS - yes my veins are playing up too - too many injections and when they took my blood in hospital had to have 6 goes before a nice kind nurse tried in a different place! however today I had no problems with my veins - I have been rubbing bio oil on my blood/chemo arm and doing exercies with it and the nurse said it as certainly helped as my vein is a lot softer than it was (its had a week to recover too)…
Hi Tors, sorry you are having such a rubbish time at the moment! My neuts fell to 0.6 before last chemo and with the neupogen got back up quickly, had the neulasta on Friday after chemo 2. Hopefully, you will also be ok for your next chemo. I have been told the dose won’t be adjusted, it’s based on height and weight. They might also give you anitbiotics to stop any infections for getting hold, I had to take 5 days even though I didn’t have a temp or feel ill. I think once you have you BC dx your confidence in your body goes completely, and these scary treatment which we know so little about and require us to trust the professionals are so intense and frightening. My schedule is off course by a week, but apparently that’s not a problem. If your veins are getting worse you might want to ask for a central line/access port. I found having the portacath at least took that worry away, as I really struggled with the veins, too.
Sending you a warm hug and hope you feel better, soon.
Like saffronseed said, it’s good to see that A&E was so swift, which is quite reassuring I think!
Take CarexxxTina
just got a call from the hosptial my white blood count 2.6 and my red 7.5 It means my chemo will go ahead tomorrow - so I am delighted - no delay. My white cells have gone up from 0.3 to 2.6 in just over a week - that glass of red wine certainly did the trick!
Tina are you just having one injection of neulasta perhaps that is what is calcualated on height and weight. Mine are daily ones and they intend to increase from 5 - 7 days so my blood count does not get so low next cycle and I become neurophenic.
I just want to get all this cr*p over an done with - I now have a date for my 3rd cycle, 1 June, then I will be half way through!
Good luck and hugs to everyone who is going through test, results, surgery and chemo this week! xxx