TMZ

Was your chemo temozolomide or PCV or PC (without the V) ? The C of PCV (lomustine) is very harsh and they give you a 6 weeks' break. With temozolomide you usually get 5 days on and 23 days off. Anyway it is true that any chemo hits your white blood cells and your bone marrow badly, and just how badly seems to be dependent on the individual. Some people (typically in the US) take temozolomide for many years without their bloods going so low. Others cannot even do a few cycles.

Hi Glenn,

First of all - welcome to a team that now one wants to join. GBM4 eh? Well you beat me - I have anaplastic astrocytoma but only a 3.

Before I continue, please bear in mind that these are only my experiences. I am not in anyway a doctor.

I wouldn't read too much in to the holding off from the chemo.

A friend had a problem with his WBC going up and down so that first he could have chemo then he couldn't, then he could then he couldn't. I was lucky (if "lucky" is the right word) in that I could keep going through each round with just the normal breaks.

Having the MRI scan in October makes sense as she will then have the results ready for you to have a look at when you see her in November. Have a look at the scans. She should be able to show you this side-by-side with the last scan so you can see for yourself if there is any difference. Hopefully there won't be a change - or if there is then it is going in the right direction!

I always want to see the scans for myself even if the oncologist just says "oh everything is good". Now my Macmillan nurse will tell the oncologist "See, I told you he will say that!" Make sure you get copies for yourself.

I have a neurologist. I have known him for a few years now. He'll be chatting with you, whilst seeing of you are coping with the situation and looking over any medication you may be on. e.g. I'm on pills to control fits that I would otherwise have.

I assume that she has referred you to a haematologist to keep a check one your bloods over a period of time.

I have wittered on far too long about more than what you wanted to hear. So I'll stop!

How are you feeling otherwise (beyond the tumour.)?

Cheers,
Richard

Hi Glenn,

Good to hear from you. Sorry treatment stopped because of WBC. I know when you posted on the GBM4 site you mentioned low WBC and I said Graham was self injecting with nivestim to help with this as he'd just started PCV. Well they do work, his count was really high (liver was rubbish so delayed cycle 2 by a week). Not sure if this would be suitable for you, or how often they are prescribed. 

Take care,

Love Lisa x

Hi Guys.

 Thanks for your reply's. I can only wonder why my Oncologist did not appear to be overly concerned about my WBC count, so it has put me in the unknowing bracket, if she is not concerned, why should i be.

I am on 3 gram KEPPRA and 300 miligram PHENYTOIN  per day, then nightly injections of a blood thinner called CLEXANE  .

Not sure what Chemo I was on when i first started, but it only lasted 2 weeks, and i took the balance of the Chemo drugs back to the Hospital. As I have not started my next round of TZM yet, i am sorry i can not answer that.

I am still getting tired every afternoon, but life goes on.

Glenn 

Not sure I like this new forum, not as easy to get around as the last one,  IE; there is no post box to click on, only the reply box