hi all
any help appreciated …
my neutrofils are turning out to be a chronic problem as the levels are very low and I keep being delayed despite neupogen injections.
What would do you do ?
MORE - try and do more exercise to get it all pumping and hope that it gets everything going a bit
LESS - rest more so less strain on the body and more resources available for bone marrow production
I am currently doing a middle road where I am working (a lot of it sedentary) but nothing to push my pulse up … having said that if i do too much I feel quite peculiar!
Which way would you go ? …
Thanks for your help
Love FixBix xxxx
Hi FizBiz, I understand your dilemma - I, too, have had my chemo delayed a couple of times because of low counts (although not to the same extent as you - I know the trouble you had in having your first dose of TAX) and I have asked myself whether perhaps I am doing too much or not doing enough. It really is a difficult one. I have found, though, that as the chemo has progressed from one dose to the next I just don’t have the energy to do much more than I am already - which is really very little anyway, i.e. after my first dose I was able more or less to exercise on my cross trainer for 30 minutes every day over the 3 week period but after my last dose of epi I’ve only managed to do an hours exercise on it overall.
I did get in to the habit of drinking green tea and manuka honey just after my surgery and continued to do so during the initial dose of chemo but my count was nevertheless too low for the second dose to be administered as planned - so I reasoned that, if after trying to eat/drink properly and exercise, my neutrophils were still low I perhaps ought to just try and take it more easy. I did, but the chemo has still been delayed since!
I do think that I need to eat a little more healthier than I am and probably need to drink/eat the green tea/honey in much higher doses than I have done but the oncologist nurses have told me repeatedly that my low counts are probably genetic. I do worry sometimes that people are just excusing themselves of any responsibility to do anything about it when genetics is raised as a reason but I do also believe that there is probably something in it too.
As for which way I would go - given that neither way seems to have worked - having always chosen the harder path in the past I would now opt for the line of least resistance and tend towards less rather than more!
How are you managing on this regime? Have you had your second dose yet? Perhaps you are on your third (and last?).
Love Naz
Hi Fizbix
I think you should listen to your body. If when you do strenuous stuff you feel weird, you need to rest. A lot of the body’s renewing and repairing is carried out when we are asleep, so don’t push yourself too hard! Try the rest and see if that helps with the neutrophils.
Cathy
x
Hi Fizbiz,
I had same prob with chemo and drunk loads of green tea and water with fresh lemon in and manuka honey, also you might be able to get different injection so you could ask them I had neuralasta and friend had another one which did not work for her so she was changed and then seemed bit better. There is something called Life mel honey which has own web site I think but you can get at Victoria health, it suppossed to be really good worth googling it. I drunk lots of fresh juices dont know if helped but did make me feel abit zingy after I had drunk them.
I rested for when I needed to which was a lot time as I felt a bit heady and odd if I over did it, well by that I mean did normal stuff!!! Try listen to body like Cathy suggests,
Take care and hope you can move on soon
Dawn x
Hi Fizbix,
It’s important to get a little bit of excercise when you feel well enough but in answer to your question I would say definately rest, less work and if possible relaxation i.e. treats such as massage or cd’s of tranquil music/sounds.I have realised, that after trying both routes, a calm mind is very beneficial although trying to “not think” is a lot harder than it sounds !!
I started my chemo on 15th dec last year and have one full cycle left and one thing that has become obvious to me recently is that every time (first half of treatment) I felt a bit better I would start rushing about to catch up with things that I had neglected and end up making myself “back to square one” with some treatments delayed and ending up having to have neulasta. If I had my time over again I would be a complete slob from the beginning with regard to housework/obligations/cooking things with a lot of preparation involved etc because since I have become so I feel so much better .
love Kay x
In preparation for starting chemo on Monday and having read most of the chemo threads of late here can I also add a 3 option of laughter to your list. Several people have suggested it helps with white blood counts and if not at least it’ll cheer you up.
I’ve got some audio recordings of Eddie Izzard and Bill Hicks for when I feel really exhausted but not sleepy. And just bought a few disney DVDs as they’re buy 1 get 1 free at morrisons and the Incredibles did make me laugh.
I think a little regular excercise will probably help. It’s amazing how much difference just a little makes. When I moved up here to cumbria I was a sickly tired unfit thing. Just walking 30 mins a day made me fit in about 3 weeks (up and down hills though). I’m not suggesting you do that but I’ve been told repeatedly that fresh air and breathing deeply does make you sleep better so even if you don’t feel like going far just sitting outside for a bit may help.
Hi FizBiz
I too had a problem with low WBC and neutrophils. I was given Neulasta. The only time I didn’t really need it was after a weeks holiday, when my OH looked after the kids and my friend cooked for me and I had managed to persuade my Onc that I should be allowed to swim as the pool wasn’t used my many people. I knew when I was low, because my glands in my neck came up so I only swam towards the end of the week when the glands were down.
If you can rest from as much as you can, let others take the responsbility but make some time for yourself and go for a walk if you have the energy but not if you feel peculiar. Don’t push yourself to work, someone told me to go back to work when you feel more than just up to it rather than just up to it. It turned out to be good advice.
with love Pauline
Hi Fizbix
I had problems with bloods when swapped from FEC to TAX but it was controlled with the jabs quite effectively. I would actually second what Cathy has said, we repair ourselves when we are asleep so I think rest is the way forward. Have you got many left to do, much as we like to keep active and fit if you’re getting towards the end you can always pick it up later.
Idon’t know of any magic cures for this problem other than plenty of R & R to get you through it.
Hope you get on Ok
AJxxx
MUSHROOMS AND NUTS WORK EVERYTIME
Hi Naz, Cathy, Dawn, Kay, Vertangie, Pauline, AJXXX, Joanne and anyone else I might have forgotten or who is reading this,
Lots of fab advice - thanks.
I think I need to do a bit of everything - a bit more exercise, a bit more rest, a bit more fun and less work! Nearly forgot lots of nuts and mushrooms. I’ve got the mushrooms - I presume any type of nut will do it?
Now I come to think of it I currently work 7 days a week (not all day) but that can’t be helping. I never get a chance to switch off. We have just agreed to try and have 2 days off together next week - unheard of!
By the way - in desperation I tried the Life Mel - did bu**er all! … and was extremely expensive. I was just deperate. Defintiely wouldn’t recommend it. It does taste nice - and I usually dislike honey. But in my view a total rip-off … or to put it a different way it just didn’t work for me.
Thanks again
love FizBix xxxx
Fizbix,
I think I would try a spell of not working at all at this point. My argument would be that your current middle road is not working enough, so you are rather stuck in limbo, working a bit and chemo a bit but not getting either to the point you want them to be. If your body needs more to fight back then doing nothing offers it the least resistance. I am not very experienced at chemo, only done one so far but I try to be like a cork in the ocean and go with what my body demands. So without any work (totally signed off until end of everything, including radio after 8 x chemo) if my body wants more sleep I have no alarm and I just sleep on. This sounds really indulgent and I know this is not an option for everyone, sorry, but made the decision to put health over anything else and sort the finance out later. I was astounded and still am at the hours I sleep without an alarm to wake me for any deadline. I am a 6 hour a day sleeper right from a child, but have just let myself wake and sleep as needed and ignored the clock. The side effects are gone, I can do what I want physically and still I have this big sleep need. It has to be all the rebuilding work going on inside. I started with neutrofils of 5.1 and have no idea where that stands on the scale of high/middle/ normal/low but will track it and report back from the next blood tests and see if my theory is working or not. I am not exercising. I feel really calm and rested compared to my usual mania, no stress until the next dose looms. Anyway just another viewpoint to consider and I hope whatever you decide to do, it works for you
Lily x