Hi Saffronseed,
Sorry to hear you had to be admitted to hospital.Fingers crossed everything is okay for chemo next week.I nearly got admitted last tuesday for same reason.I’ve had a chest infection(still got it)and my temp went up to 37.7,the hosp said if it went to 38 I had to go in.Thankfully it just stayed at that level for a couple of days,so I was able to stay home.My doctor told me that if your white blood count goes low on 2 occaisions,they can give you an injection when you have your chemo,to stop it happening.Apparently they don’t give it to you ,unless you really need it because it costs about £800.
I’m hoping my levels are okay for next week as its chemo 3 on wednesday
Above should read chemo next wednesday
oh saffron, thats awful for you, and heres me thinking i have had a miserable weekend. But thanks for telling us as we all need to be on the lookout don’t we. I hope you are feeling bit more up today, and get on to your oncologist about the £800 injections next time.
Am in semi isolation at home as my two boys are ill. Stuck up in my bedroom. Husband was at the childrens ward over the bank holiday with my 4 year old, after the out of hours gp service told him to go, and he has tonsillitus which has affected his airways so is on anti biotis, inhalers, steroids etc, and my youngest has a stinking racking cough and cold, but they are both crying for their mummy and i feel awful not helping them and turning my head away from them, and i just felt rubbish not being the one who took him to hospital as thats my job.
feel less sick but got no appetite and everything tastes blurgh. Have had sore throat, temp seems alright, but i phoned helpline and they said to get my gp round to check no throat infection. so am waiting now. Its hard to know if you are feeling ill isn’t it because the parameters of how you normally assess it are totally gone so how do you know if its the ill you are gonna feel from chemo side effects or if it is scary ill?
Just thinking saffron, that what you have gone through this weekend is what we are all worried about at this stage, but that its reassuring that you were taken care of and treated so promptly and are back home. It must have been very scary, well done for getting through it. xxxxx
O my gawd sounds even worse being in isolation at home and not being able to see to your children and your husband being ill too - what a miserable time for you all.
I agree about the illness thing - (me never being ill in my life) I tend to just shake things off but its a different story now - even a temperature is serious and you were right to ring the helpline. I only popped into the hospital with a swollen wrist - I did feel a bit ‘fluey’ but otherwise ok - they were very very good and wipped me in straightaway and I have been looked after - so not complaining it was just out of the blue for me as I felt ok (ish) and nothing I would worry about normally - but things are not normal and we should all remember that.
Re the injections I am already having them! I have 5 after each Chemo treatment - but even with them (so I am told) your white blood count will fall during days 10 - 15. The injections are to help get it up for day 21 (next chemo) - the problem for me was that they dropped and I had a temperature and become neutrophenic. They will not give me any more injections as they can only stimulate the Bone marrow so much or that in itself is dangerous (its not a cost thing - for me anyway).
sorry about your appetite too. I am the opposite I can’t stop eating and I am always hungry! everything tastes the same as it did to me and there is nothing I can’t eat. I did go off milk a bit for the first week and avoided tea with milk and cereal but am now back on it. The nurses have told me that to get my blood count up for next week I should eat a lot of good healthy food and mild exercise (walking) so that is my plan. I am still on antibiotics at the moment though so am being careful about where I go as I don’t want to catch anything.
I just hope the time passes quickly for us all and we are through this before we know it.
take care
x
will try and eat, will try and eat, will try and eat!
Just re read my post, its my 4 year old that has tonsillitus etc, its my 2 year old who has a stinking cough and is spluttering all over, and its my husband who i think is wondering where on earth this has all come from and just would like to go and watch the football really!
Hi Saffronseed, I hope you are feeling better today, what an ordeal to come through really, my neutrophils were 0.6 and they would have not done chemo or the operation for the portacath if they had not recovered after the injection. I will now have one injection after every chemo. Shocking really, because I felt fine, too and took a week of high antibiotics at home. Did not realise you can still get neutropenic despite the shots!
I had the choice between the portacatch and hickmann line. I chose the portacatch as it is completely hidden under the skin, about 5cm scar though just above the left breast (my mx is the right side). My veins were shocking and after they got blistered from the epirubicin they would not do chemo again through the arm.
Neulasta is given once for each cycle of high-dose chemotherapy, at least 24 hours after chemo, and no sooner than 14 days before your next chemo infusion. Neupogen is given in several injections on a daily basis, until your neutrophil counts come back to normal levels. You may need just three or four shots of Neupogen, or as many as 10, depending on how well your system responds to the drug.
Effectiveness Is comparable apparently.
Bone pain is the most common side effect for both drugs.
Cost Per Injection
One 6 mg Neulasta injection will cost around £2000, depending on the supplier. One 300 microgram Neupogen injection will cost between £285 to £300.
One 6 mg injection of Neulasta costs about the same as 10.4 300 microgram injections of Neupogen.
There are NHS guidelines on when and how often they are given due to the costs.
I hope you recover quickly!!
Sorry to hear your kids have been ill, tors! Mine have been coughing&splattering, too, it is going round at school! How awful having to keep away when they need you most. I hope it’s not a throat infection! Hugs to all, Tina45xxx
Shocking really how BC turns your life and that of those close to you upside down! I wonder how being “normal” will feel like when this is all done!
thanks Tina thats interesting about the G CSF injections. I had lenograstim (Granocyte). If there is something stronger out there that maybe more suitable for me, I will ask about it when I see the Onc next monday.
my veins are very painful and I don’t think will last another round of chemo - they can’t even get blood out of them now as they are so hard. I may go for the Hickman line although I know its a bit inconvenient and has to be flushed - I just don’t fancy another Op (coward that I am).
I am also losing a lot of hair too - Its not unexpected but again adds to the overall distress of everything…I’ve had it cut very short but its still coming out in handfuls! and my head is sore too.
apart from that everything is the garden is rosy!
x
Hi Saffronseed, I had the neupogen, there are only three types available in the UK of GCSF
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.
I did not fancy another op either, luckily, the surgeon did some work on my scar at the same time. With the portacatch, you have to wait for 5 days before they will do chemo. My schedule is now a week out.
My scalp was pretty sore, too before the mass drop off last week and it is still falling out now. I knew it was coming, I still sobbed. Went to school this morning without the fancy hat on and quite a few people did a double take when they saw me, from just below shoulder lengths last week to no.3 crewcut with bald patches, it is like sticking a label on yourself, but I wanted to face it and “come out”. My boys were ok we had talked about it before, I hope there were no awkward questions for them afterwards!
Try and get your energy back! Tinaxxx
am sick of this already, stuck in, feel yuk, had enough, know it could be worse but still feeling very down and peed off, have had enough
sorry you feel so down Tors it is not nice at all.
I have a ‘holiday’ planned for a couple of weeks time - just a few days away on the south coast - and it has helped me get through some of the darker days knowing there is something nice on the horizon - JanB (on here) suggested that I book stuff to ‘look forward to’ days/weekend away and I must admit it does make you feel a bit better - its difficult to plan though around hospital dates but definately worth it.
Hi
Sorry to hear everyone having a rough time. I must be pretty luckly but frightened of speaking too soon. Getting all the ‘normal side effects’. Can’t taste anything really and a big no to dairy. Just wish I could make a day through with out flopping on my bed in the afternoon! Must not make it a happit.
It is good to look forward to things and I am really hoping planned concert tomorrow goes well. Think its keeping me on up side at moment. Just booked hotel as refused to earlier just in case. Going to go get measured for a bra whilst in Edinburgh as no suitable stores by me! I have lump at end of back scar that gives me trouble with any starps so hopefully I can get something sorted.
I have been reading all about these injections and bit worried as I have’nt even been offered them but on other hand is it yet another chemical for body to cope with??? Will write down to ask onc at next appointment.(will forget otherwise)
I have had a PICC line fitted given choice at begining of treatment. Went really smoothly. Glad I did as my veins are usless. Agree with tina one in chest at least no flushing but yet another general??? All these choices! Do we ever no if we make the right one! Any way so far it has been fine it sits on the inside of my arm so is taking abit of getting use to. Nurse came to redress day after and will be out to flush on friday. Although feel its yet another tag!
Hope kids get better Tors and well done saffronseed for getting through weekend. I dont think you can beat a walk by the coast!
What a big step Tina but you have done it now!! Pat on back!
i apologise in advance but i am going to have a rant because i am really really annoyed, upset and generally pssd off. I have had enough of sitting in my room listening to my mum mind my boys instead of me, i have had enough of being stuck in, i have had enough of feeling rubbish, its not like i am feeling really really ill, i just feel yuk, like i have a lump in my throat, no inteerst in food, dry mouth, worried sick of catching the germs downstairs, hating that the boys are missing me, not sure whether i am tired cos i am down or vice versa, or both, no energy, jst all crp crp crp crp crp, and to top it all off my husband is having to get collect me a prescription for piles relief cream caused by constipation, caused by chemotherapy, caused by yet again that stupid **** ***** *** stupid argh cancer, stupid stupid stupid. 3 months ago i would have been making tea for everyone and planning a weekend out with my husband and boys and now i am typing this cos i am so absolutely totally utterlrly peed off, why am i supposed to be in the prime of my life, in your 30s, best years when your kids are young etc etc etc and i am trapped here feeling crap waiting for my husband to get my piles cream prescription.
argh argjh argh
i appologise for butting in here ladies, but just wanted to send you a big hug tors, your last post perfectly captures me, my life, and cancer this time last year - i can so relate to you. it’s a s*** time. but it does pass, i promise. xxxx
butt in all you like, i want people to try and cheer me up or at least listen to me rant, it helps
xxxxx
hi tors sorry you feel so low. I felt like that yesterday but today was another day and I felt so much better - its almost we have to have the bad days to appreciate the good ones.
none of this is fair and its not a good experience - but I am sure you will get through all this and this will be a dim and distant memory that you will never forget but will give you strength to help and support others that will no doubt have to go through in the future.
Have a good rant and cry and get it out - be kind to yourself too - are there any nice treats that you fancy? if so get them.
The Pile cream will help (speaking from one who knows) I have always been constipated and the anti sickness tablets make it even worse. Get that cream on and they will shrink and that alone will make you feel a lot lot better. Get yourself more comfortable have a good sleep and tomorrow will be another day…
Hang on in there tors! You will feel better in a while and you will get through this. Hang onto the fact that this chemo nonsense won’t last forever… one day at a time.
I really feel for you. Go mad and treat yourself to a ginger tea!!
xxSue
Hope the concert is fab Tedoris!
tendoris - you said you had a Picc line is that a hickman line? if so how long does it take to get it in - can they do it on the day of chemo or do they do it before hand… sorry I missed your response first time round, just went back and noticed it! (sorry) you sound as if you are doing really well…
x
Hi Tors, wishing for a better day for you today! We will all get through this, and like Sue said before, one day at a time! Your children will not suffer if your mum and their dad look after them, you need to go through this so that you are there for them in the future!
Sending you positive thoughts, see if I am this plucky after FEC no.2 tomorrow…
Been out and about yesterday with not much hair and no hat on the school run and shopping and it was not at all as bad as I thought even though I think & feel I have aged about 20 years in the space of the last two months, have informed my hubby already that I will need serious pampering (probably costly…) at the end of treatment!!
Hope side effects are being tolerable for everyone. Big Hug, Tinaxxx
Hi everyone,
I’m on my way to have my blood count checked.I’ve still got a chest infection and now have tonsilitus,despite being on antibiotics-rats.I’m now on really strong antibiotics,but doctor wants blood count checked today and next monday to make sure I’m okay for chemo next week.I will be absolutley gutted if it gets delayed,so fingers crossed.Hope everyone else is feeling a bit better.Tina well done for braving the school run .I’m still hiding under a wig and a hat,but most people know I’m wearing a wig.People keep admiring my new hair cut,and get a shock when I tell them its a wig and I’m GI Jane underneath!
Tors,hope your feeling better today,I hate not being able to look after my girls when they’re ill.It will be worth it though.grandparents do a great job,and you’ll soon be able to spoil everyone when you’re better.I’m already planning special things I’m going to do when this horrible treatment is over-like having big family meals and holidays etc.