This has been a week of ups and downs but nothing serious. Increased shortness of breath on exertion, a little weight loss and some slight nose bleeds. It could have meant my blood counts were falling. This is a potential side effect of Rituximab and can occur quite suddenly anytime between now and February. Anyway in clinic this morning the blood counts were stable so I was trying to make 2+2=5! In fact my weight had recovered a little this morning and no further nose bleeds or breathing problems today. I think this is just part of the general background 'noise' of good and bad patches on the winding road to recovery.
The Rituximab IVI that I had 10 days ago has worked a treat. The EBV has dropped to zero and Prof thinks it will probably stay that way. It is one of the many weekly blood tests I have will continue to be closely monitored for the moment. As well as the full blood count and EBV they also checked the level of chimerism, kidneys, liver, magnesium, calcium, Ciclcosporin level and CMV! I think that is all!
Meanwhile the steroid dose continues to be decreased. Ten days ago I was on a hefty 40mg daily. 'Hefty' for a GP, not for a haematologist. By next Monday I'll be on 10mg with hopefully a further reduction next Thursday. The other immunosuppressant, Ciclosporin, stays the same for the moment.
I also see the dietitian every week because my BMI is a little low. This week she added yet another food supplement, Calogen, to the Scandishakes, Fortisips and Complan!! When the Complan and Fortisips are used up then I just continue with the first two three times a day. At least the Scandishakes taste OK. Haven't tried the Calogen yet.
A couple of other things. The reason I don't get clear answers about the MRD (Minimal Residual disease) result is because my tumour doesn't have an MRD marker. Apparently only 50% of tumours have the marker and mine isn't one of them. Instead the lab fall back on an older test called FISH which is much less sensitive but a lot better than nothing.
The other thing Karine and I learnt was how very very expensive one of my drugs is. The anti-fungal preparation costs £300 per day. I have got five little packets of this stuff plus an opened packet, enough for about six weeks, £15,000 worth! No wonder the NHS is in financial trouble!
Meanwhile I continue to slowly improve. The GvHD is under control thanks to the steroids and Ciclosporin, it had better stay that way as the doses are reduced!
Many of the side effects of the chemotherapy are gone but the Cilosporin causes a variety of annoying problems. Dry mouth and food tasting of cardboard. The fatigue is gradually lessening.
I've stopped taking afternoon naps. Still getting insomnia from the steroids, hopefully that will go in the next few weeks as I come off them altogether. In the meantime reducing the dose quite quickly like this is making me very trembled all over, a recognised side effect. Another new experience. This year has certainly been rather novel. My side effects are having side effects as Snoopy said!
My brain seems to function in a rather random manner. I think one word and say another, forget things I know full well and sometimes quite simple tasks defeat me yet when I come back to them a few hours later I have no problem. We played a board game with Noelle and Graeme a few days ago and I made a complete dog's dinner of the final scoring so next time someone else will have do it. No one seemed to mind too much, the fun was in the playing of the game. Talking to other stem cell transplant patients at rehab this lunchtime several of them complained of the similar problems with words and memory. It's 'chemo brain'. No one seems to know how long it will last but it does go after a while.
Enough for now.
* Arctic Monkeys - 'Whatever People Say Say I Am ....' - 1st track
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