Rebooting Melissa

Day three of chemo and I must say, without tempting fate, she’s tolerated this so well.

So much so that we were wondering if it’s actually chemo those bio-hazard suited nurses are hooking up to her Hickman line.

Slight scare today in as much as her temperature went up to 37.5 from a base of a steady 37.1 - it resolved itself though and no-one (except me!) seemed to be too concerned. Celcius of course!

Mel was feeling good and in good spirits. Tired, but no nausea or pain.

Dose 3 of the HiCy came at 2pm which puts us on target for a 10am dose tomorrow which, fingers crossed, means she will be discharged from the hospital tomorrow evening.

Spanky will be v.happy.

With the chemo being done so early it meant I could go back to the apartment early at 9pm and get a decent nights sleep. I went to bed at ten and woke up at eight this morning.

Blood counts are dropping.

Oddly her counts at ‘baseline’ taken on Tuesday were significantly LOWER than the counts after the first chemo dose. I must ask Dr. Brodsky about that when I see him, if only for my own curiosity.

Blood counts:

Date   Hematocrit   WBC    Neutrophils   Platelets

4/22       37.1          5880        3670           314

4/24       36.8          9920        5840           338

4/25       34.2          7110        4740           271

4/26       32.4          5710        4580           249

So as you can see apart from the day zero anomaly the counts are decreasing as expected. It’s the WBC and neutrophil number that is the key, the neutrophil count will be at zero for 2-3 days before the ‘reboot’. They should rise slowly at first then exponentially after that.

Issues to be aware of (sorry in advance Mel….) - Constipation. One of the symptoms of Mel’s MS is her constipation, she stopped taking her regular regimen of laxatives etc as the chemo causes diarrhea, this was an error, even chemo is stronger than her iron bowels. It’s essential that you are very careful. Mel has a sore arse caused by constantly trying to go and any spotting of blood on the toilet tissue needs to be carefully monitored as once those platelets drop bleeding of any kind can’t be considered minor.

Fortunately she’s avoided bleeding. Sorry Mel, I’m telling this warts and all. Not that I’m suggesting she has any warts….!

Thanks for all the emails, comments, text messages and calls it means a lot, it can feel very isolating here at times.

And a big, special thanks to Michael Ballack and also the referee. That really cheered me up. If Ronaldinho is reading this….hat trick please on Tuesday. Thx.

For those of you who are interested in the brain physiology of MS, in particular the difference between black holes, T1 and T2 weighted lesions and what that means (it helps to make sense of your MRI) this article is really good, it helped me a lot when I first started trying to understand MS. Not that anyone truly understands multiple sclerosis but you know what I mean. Link: http://findarticles.com/p/articles/mi_m0850/is_4_20/ai_94040948

Also for people newly diagnosed reading this please have a read of this link, okay it’s from Bayer and I really don’t know where they got the 90% effective drug figure from (you’ll understand what I mean if you read it) but it’s one of the best ‘for dummies’ breakdowns of what is happening to your brain even when you feel good. http://www.mspathways.com/pdf/myth_of_mild_ms.pdf

My personal opinion, and I am about as far from being a doctor as it is possible to be whilst still being a human, is people with ANY enhancing lesions should consider this treatment, at least talk to your neuro about it, in the same way in cancer you wouldn’t say ‘oh it’s only a small tumour, I’ll wait to start treatment until I have a number of tumours’ any lesions is bad news, even in early stage RRMS as we can see by Mel’s MRI black holes can develop, and once that happens that part of your brain ain’t coming back. Brain plasticity is a wonderful thing but it is finite.

Anyway, that’s my update for today.

Cheers,

JK