I wonder if any of you have any advice about this, don’t worry if not as I will be grilling (gently) the nurse next Monday when it’s FEC round 2.
I had my bloods taken on Friday which was 11 days after my first dose and she just just phoned me to let me know that they were at 0.6 which is rather low. I’m feeling fine, just a couple of mouth ulcers and sore mouth which the doc did look at on Friday and I’m being scrupulous about antibac and mouthwash etc.
But here’s the thing if my neuts dropped as low as 0.6 on round 1 and it gets worse as you go along what on earth is going to happen negative neuts!
I’m just really hoping that the numbers are better on Monday. I’m not worried about the next dose being delayed, so be it if that’s the case. I’m terrified of having no immune system. The whole idea is just wrong to a person like me who has always worked on the basis of stay healthy etc. This is the opposite of everything I believe in and am having a moment of doubt as to whether this really is the right approach to healing. My god this is scary isn’t it.
So did any of you who are later in the treatment have numbers that low the first time around. I started at 6.7 which I thought was quite good.
Hi
Nobody ever took mine on day 11, only the day of chemo itself (by which time they would have recovered). I had problems I think from round 3 onwards, with no. 3 being delayed by a week. After that I was given injections to boost the white blood cell count, These are excellent and worked really well. Started off with 3, by the end was having 10 and did them myself as much simpler than trecking up to the hospital every day!
Hi there - sorry that you are having to deal with this. If it is any comfort, you are far from alone and it is very common indeed for the neutrophils to drop - to 0.18 in my case! What tends to happen is that for the remainder of your chemo treatments you are given neulasta injections to boost your WBC production. I had that the day after each chemo treatment and it was very effective. I think it is a really expensive drug, and that’s why it is only given if necessary. I am sure that everything will be explained to you. (Sometimes people get the drug that is given just once in a chemo cycle, and sometimes more often as in Sarah’s case above). It’s tough, but you will get through all this, and don’t forget it’s all for a very good cause! Let us know how you get on, we are all here for you. Sarah
Not to worry - mine have been low all the way through and so far I’ve avoided any infections. Some of my doses have been delayed more than once. It happens to some of us.
I have always avoided medicines like the plague so this chemo lark was a 180 degree turn
I now have neupogen to inject myelf with each cycle - sometimes I have to have it twice!
I’ve given up worrying about it and just get on with it.
At my lowest with a cold my neutrophils were 0.38 on the monday and I had to have my portocath insertion delayed by two days (should have been the wed). Re-tested blood on the Fri and they were 1.55 - so they rise quite dramatically in a short space of time.
I always have my bloods done the day before chemo - this is the one and only time in my cycles I have it done. I wonder why they test yours after 11 days just when they know your immunity drops?? Strange - but don’t worry…they have to be really low the day before chemo for them not to give it you.
Not all of us get them taken mid cycle so it could be we’re all low at this point? I get my blood taken the day before the next chemo which is the one they’ll work on I’m sure. I’m assuming you’ll be re-tested just before the next chemo? Hopefully the next few days will see them rise to a ‘good’ reading but there seems to be a way of dealing with the low WBC as mentioned above. I’d keep doing what you’re doing, being healthy and I’m sure it will make a difference.
Mine started off at 3 point something (so not very high) but were a bit higher for my next dose - maybe it was the anti biotics I was on giving the WBC a kick up the backside?
My neuts were low at mid point everytime on fec - they were tested because I always got infections - generally they begin to recover the further through the cycle you get.
At start of chemo mine were 6.4 and dipped to an average of 0.4 everytime (once dipping to nil !!!) - for each cycle, having looked at my wee chemo book they recovered as follows (either with or without anti-biotics)
Cycle 2 - 5.0 (with anti-bio’s)
Cycle 3 - 4.4 (with anti-bio’s)
Cycle 4 - 5.1
Hi Vertangie,
I know this drop will worry you, but you are doing everything you can to stay really healthy. I bet you are fine when you go back. On the bonus side, you will never feel so happy about having chemo when they say yes and the happiness will pop them up again to a better level.
Good luck
Lily x
I can totally appreciate how disconcerting it is to discover that your neutrophils are low at this early stage and how on earth you’re going to last the distance. The first chemo is the unknown and there is nothing to compare it to. As other posters have mentioned, you may be given neulasta jabs 24 hours after chemo to keep your WBC up if neutrophils become a problem throughout the treatment.
I developed neutropenic sepsis on the 8th day after my first chemo with a count of 0.04 and was admitted for 6 days. I had no infection. I was told that because chemo drugs attack rapidly dividing cells, your blood cells (along with hair, skin etc) are first in line to be wiped out. In fact, my oncologist saw it as a good sign that the chemo was doing its stuff!
Surely, your nurse would have asked you to go back into hospital if they were concerned and get you on antibiotics if there were signs of infection. If you’re worried about your immune system/neutrophils/white blood counts there are loads of threads here that will arm you with information. My top tips are to be scrupulous with food and take care to avoid food that may contain bacteria and could be the source of an infection whilst your resistance is down - uncooked fruit or veg, live yoghurt (inc drinks like Yakhult), commercial ice-cream, uncooked cheese (especially mouldy types), pate, uncooked eggs, butter, shellfish, even freshly squeezed juice. Keep an eye on your temperature and get yourself to the hospital if you develop a fever.
Good luck, and I hope that your second cycle goes smoothly.
That really does help. There’s no signs of infection and the temperature etc is fine and I am healing OK (bruises from a little DIY etc are going away) so I think I am on the way back up. I was just really disconcerted that I felt so fine and evidently wasn’t. I’m used to trusting my body that’s all.
I have been using anti bac and on pregnant womens diet (pate has never looked so good but not to be) so I’m fine, just nervy.
It is interesting that not everyone has mid cylce bloods taken.
They’re called Nadir bloods which is basically taking them at the low point. I wonder why this isn’t standard as while it’s unerving to know what you’re like at the low point it is good to know how at risk you are so you can make informed judgements about going out etc.
Had blood taken last Friday prior to today’s switch to Taxotere. Was phoned on the way home by chemo ward nurse to say results were back and neutrophils had dropped to borderline, so i went in this morning early for another blood test. Started steroids yesterday (Sunday) in preparation for new chemo regime, and this morning’s blood test showed neutrophils had risen from 1.0 to 6.7, presumably in 24 hours after three doses of Dexamethasone. So the chemo went ahead - although a 3 hour wait, first for blood results to come back and then for the Docetaxel to be mixed up in the pharmacy.
I’ve got quite good at sudoku recently. A side effect of quite a lot of waiting!
Although shows how fast steroids can work on the neutrophils prob. I was taking a smaller dose for two days on EC but not starting until morning after chemo.
I have just had my last FEC treatment and feel on top of the world for having got through it all. On my fourth treatment I got neutropenic sepsis on day 14 and was found to have a complete blood ‘black out’, as low as the blood can go. Spent a week in hospital sobbing daily as it was taking a long time to bring my count back up with the neurolasta. I had my chemo delayed by a week and my neutrophils had shot up to 4.7. Was given a reduced dose of FEC for the last 2 treatments and was absolutely fine.
It does seem so tough and scary on this journey but when you get to the end its such a sense of achievement. I feel like whipping my wig off and running around shouting with joy.
I always got anxious on those low neutrophil days but if you keep away from folk with bugs etc if possible it does help. I hope the rest of your treatment goes well and try not to worry about it. Apparently lots of us get incredibly low readings mid cycle but if you have no cause to go for a blood test we are none the wiser about it.
Angie, I have nadir bloods taken as a matter of course too, or I will have on Friday. I’m half dreading the results - mainly because I’m away this weekend to watch my son in a kite competition. It’s camping or “prepared out” type food for me all weekend, and I’m going to have to just be really really careful :-S If my bloods are really low, I’ll have to give it a miss, but I really don’t want to.
Lanterna, I have a Sudoku book sitting right next to me! Also a good time waster is gin rummy - I rope my poor OH in every night at the moment, even though with my chemo brain I am totally useless!
I had similar with two cycles of my chemo. I dropped to 0.1 seven days following the first one and ended up being admitted and narrowly missing a visit to ITU! I had loads of IV ABX and was ready for my next cycle on the day it was due!! I wasn’t gien the choice or chance to have Neulasta jabs (I only found out about them when it was too late really) that other ladies get, so you can imagine how concerned I was after number 2 & 3 cycles… luckily the lowest I went was 0.8 and that was fine as I was well in myself. When it came to cycle 4 I got so ill that I as once again admitted for a week and my Neuts were down to 0.5 that time, I had a raging chest infection that lasted in all about 9 weeks - suffice to say that I go no more chemo as it was cancelled follwing the 4th cycle as I was not well enough to receive further doses.
I think that some people are more prone to infection regardless of the neut levels… I am one of those so I guess it was par for course really? I also have a kennel of 35 dogs to care for so I was battling to keep away from bugs etc, I had to wear latex gloves (and also told a mask - I refused this!!!) after the first visit to hospital as my Onc team were concerned I would catch something from my dogs… In fact it turned out that what I caught the first cycle was from our water supply which runs off the mountain here into our tanks.
I’ll see what they offer me. I was quite down last week, it was a very depressing one which I think wouldn’t have helped (if laughter helps the neuts I imagine being sad doesn’t).
I’m picking up now and have found some things that have cleared up the sore mouth in 24 hours woohoo, still a little sensitive but not painful. bruises are disappearing and cold sores gone which I guess means out of the woods probably.
I think we just all have to antibac all the time at this stage and stay away from salads we didn’t wash ourselves etc.
Caron: I too am going away thins weekend camping can I suggest you have a look at tinned goods eg pineapple etc as it’s safe and even things like tinned stews aren’t exactly bad nowadays, I’m raiding M&S on the way out on Friday. I have pot noodles in case of emergency, they actually taste OK on the chemo!
Hope you’re all having a good week and thanks for sharing.
BTW if anyone else is suffering cold sores you can get a lip balm that contains lysine which apparently just kills em but it’s a vitamin rather than a chemical so should be a bit easier that those chemical things. it was a fiver (for a lip balm!) but my lips are smooth and silky for the first time in weeks
If you too need it google for
Aloe Vera Lip Balm With Lysine And Tea Tree
I will not suffer in silence… I prefer to just not suffer
hiya Vertangie
Just me, just popped onto say, cumbria docs must have same system, I have my bloods done on day 10. I was so upset as mine were down from 6.5 I think to 0.4, was really scared as felt fine but had a runny nose (which is starting again), I was given antibiotics in case i felt ill but didnt, it was the immune system really down but nothing I could do - just to let you know when I went for my chemo it was back to 4.5 so dont panic, apparently it can be different each time.
Any advice for achny type spots, itching like mad, all viens broken on face and lumpy and white spots - parrently a reaction to steriods
as for spots, really hard to say as they’re steroid induced, not something I’ve had before but I do have a few breaking out right now.
I’d recommend a gentle steam clean like if you had a cold, just holding face and head over a bowl of steaming water. Don’t make yourself dizzy though.
Should help the skin breathe a bit and is certainly not a bad thing for cleaning the sinuses either… actually a nice steamy bath does the same thing and maybe a bit of aloe but as it’s not dirt related it may do no good but the bath would relax you.
I use homepathic healing cream (have been since my mastectomy, I healed so fast from that and mum said it’s good on the face too so what the hell)
Helios do that if you want some. I will never bee without it again personally (that and the aloe mouthwash that seems to have fixed me in 1 day, might just be the ole immue system bouncing back but hey let see if I get sore mouth next time round.)
My neut count went down to 0.17 on day 10 after first Tax, and as I had a sore throat I was kept in for four days on IV ABs. Felt tired, but otherwise ok. My hospital only check our blood count the day before chemo, so I’ve been cheeky and asked my GP to check it for me on day 9 this time. He was happy to do so, and it will help me in respect of not wasting loads of time waiting for a blood result if I do feel unwell or have a raised temp again this time. Last time it was 9pm when my temp went up and so it was midnight before I actually got a bed in the ward, by the time we got there,waited to be seen and waited an hour for blood results. I was exhausted…not very helpful! I’m hoping to be one step ahead from now on! Hope it works! Be prepared is my motto!
Hope all went well for everyone on this thread. Just realised it’s a few weeks since last posts!
