Hi everyone. I think some of you know that I am having my treatment in Australia and up to now it has been wonderful. Last week I and to go to A and E with a fever of 38.1. The doc did various tests and finally sent me home with oral antibiotics saying that my neutrophils were low but not critical. He had told me that if they were under 1.00 I would be admitted. HOWEVER, today I had my appointment with the oncologist who was really shocked that I had not “been admitted for a week and on IV antibiotics”. It turns out that the pathology result showed my neutrophil results were actually 0.18 - ie less than a FIFTH of what should have seen me admitted! I was so pleased to get home to my own bed and a cup of tea, but now feeling I am quite lucky to have survived to tell the tale! Now have to have an injection fo Neulasta on the day after my Taxotere tomorrow. As it will be bank holiday was going to give it to myself (anticoagulant on one side of tummy - Neulasta on other!). However, have just been reading up on side effects and anaphylaxis is mentioned especially on first administration - so now thinking that does not sound safe at all and I should be somewhere with adrenaline!! (Anyone else given themselves first injection alone at home?). Hey ho, sounds like not just the NHS that has problems. By the way, I have written a “nice” complaint letter to the hosp asking them to investigate and see what happened. A stressed locum doctor - we’ve heard it all before! Best wishes. Sarah
Hi Sarah,
Its frustrating, isn’t it, when the occasion arises where you feel the need to make a complaint when ordinarily you would want to praise the medics for their service!
I don’t have any experience of self-administration so my instinct would be to try to arrange for a professional to administer the injections instead, especially on the first occasion. I would have thought that you would have enough with which to contend with the immediate side effects of the chemotherapy on Thursday without the additional worry of having to inject yourself afterwards but perhaps it being the bank holiday weekend it would be awkward to arrange.
Let us know how you get on but I’ll be thinking of you over the next day or two.
All the best
Naz
Hi Naz, I’ve just written to you about your ulcers, and now I see you’ve just written to me about this! I do find these threads so incredibly supportive. Thanks so much, yes, I’ll let you know how I get on, and make sure you do, as well! We’re certainly all in good company! Sarah.
Hi Seabird
I had Neulasta injections 4 times after each chemo, with one FEC and 3 Taxotere and the district nurse came to give it me and then went straight away so I don’t think there was any danger of any anaphylaxis. I did find though that my joint pains were worse and I am sure it was due to the Neulasta so watch for this.
Lots of love and hope you go on okay.
Liz xx
Hi Sarah Seabird
I am having neupogen and it says not to have it straight after chemo!!! Try looking it up on the internet and having a read.
Cheers my dear
Love FizBix xx
Hi dear Fiz Bix - I think we are both having something slightly different, although versions of the same thing. Mine is one that you have once only per chemo cycle, and it definitely says 24 hrs after chemo (I’ve been doing my research!). I think that yours is one you have for a few days on each cycle is that right (not putting in a question mark this time as I’ve done that twice and just lost what I typed both times!! So annoying!!) Sorry to read on our usual thread that you are so totally knackered - I’m on the steroids in big doses that you have around taxotere, so no sleep for me either! Biggest of hugs my cyber friend! Sarah xx Thanks Liz for your posting - yes, am forewarned about the pains, not thrilled about that as was bad enough on the Taxotere alone. I think if you do get an anaphylactic reaction it is usually while you have the injection, so at least the nurse was there at the time with you (and quite possibly carries adrenaline if she is giving injections like that). Anyway, I will check it out when I have my chemo today. Thanks Liz, hope you are OK as well. Sarah xx
Hi Sarah
I gave my first dose of neulasta and had no side effects, I had no adrenaline with me, and wasnt aware of anaphylaxis either, (very remiss of me as a nurse)
Linda
X
HI Sarah
I had neulasta after each chemo session 24-48 hrs sfter and I am sure it kept me out of hospital. I did have a few aches mainly after the first one with fec and the first taxotere but then again I wasnt sure if it was the neulasta or the major chemical mix in my body ! Its not a great injection as its quite viscousy ? but it really helps if you take it out of the fridge as its says on the packet a good 15 mins before use to warm up a bit . I had a friend whos a nurse do mine rather than go to the hospital and never had any other effects.
cally
Hi Cally and Linda - Thanks for your postings, and glad it all went OK for you. Interestingly enough, I am just home from my 5th chemo and the nurses and pharmacist there said no way would they let anyone give themselves the first of these Neulasta injections (that’s the one with the most risk). In fact they said that even the community nurses won’t give them as they don’t have the right equipment to respond to anaphylactic shock. So I have to go to A and E with it tomorrow (Good Friday) and they will do it there and keep an eye on me for half an hour or so. Must say I feel much safer with that arrangement! I had a lot of pains with the Taxotere, and have been told could get a lot more with the Neulasta, especially around the lower back, but will wait and see. If it can keep me out of hopsital that will be great! Thanks both and you, and best of luck with whatever stage you are at now! Sarah x
Also Sarah
Just be careful after my 1st dose of neulasta I still became neutrapaenic neuts were 0.3 and WCC count was 1.8, had a temp of 38.6 Dx UTI and was in hospital on IV Tazocin for a week,
Linda
x
Hi Sarah, thanks for your reply to my other post - I did get to see the Doctor and the Practice Manager is going to phone me to discuss possible alternative arrangements when she returns from annual leave… I’m just relieved to hear that you will be getting the additional injections - or at least the first ones - through A & E, just in case. I’m a bit of a coward myself but I do know people who self-administer (for diabetes) without any difficulty at all, although only after alot of practice!
Please excuse me but as I am writing to you, I have managed to gently pull out three strands of my hair - I’ve been pulling on my head for the last week just to ensure that the hair is still firmly in place, but clearly not for much longer now. Ah, well, it was always going to happen!
All the best for today and be thinking of you tomorrow.
Naz