Maintenance Cycle 1

Vega started Maintenance today. After a delay of two weeks, her bloods had recovered enough to start with chemo again today.

Vega’s blood counts 09/10/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 8.6  (9.5-15)

WBC (white blood cells)- 2.52  (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 1.85   (>1 is not neutropenic, normal range starts at 3)

Platelets 167  (150-450)

And here we are, finally, holding the holy grail in our hands. This is the low down-

Maintenance runs in 12 weekly cycles. During these 12 weeks she receives 5 different drugs. She has intravenous Vincristine once a month (three times per cycle) together with five days of Dexamethasone, her steroids (also three times per cycle). I am giving her Mercaptopurine (6MP) at home every night. She also takes oral Methotrexate (MTX) once weekly, on a Wednesday night, except in week 3, when she has a lumbar puncture to receive the Methotrexate intrathecally. She continues with her Septrin (Co-trimoxazole, an antibiotic), which she takes on Saturdays and Sundays only.

The 6MP and MTX are count dependent. That means that Vega has a bloodtest every Monday to check her blood levels, most importantly her neutrophils and platelets and then her weekly dose of those two chemos is adjusted accordingly. If her neutrophils or platelets go to low, the dose is halved or even withheld. If the go to high the dose is increased. The aim is to give her the highest tolerated dose throughout maintenance, without crashing her counts. Ideally her neutrophils will hover around the 1 mark. She therefore continues to be immuno compromised but never quite as bad as she was in the past few months, allowing her to attend nursery and get on with life more or less.

Now I am German, and dare I say I am quite organized. Well actually I am a bit of a control freak by times. But this whole treatment plans, chemo, flowcharts, appointments, bloodtest and count adjusting business is seriously a full time job, even for a well organized anal German. It has been until now and it still is. The time I spend daily- not weekly!- on the phone to some doctor/ nurse/ pharmacy, is shocking. Today I picked up our stash of poison and such at the pharmacy at the Marsden. Here it is-

Tonight I scrambled my way through this new regime, what medication has to be given when, with food, without food, away from milk, grapefruit, bananas… arghh jeeez! Well I have 18 months to get used to it. 18 months of giving Vega chemo every night.              We have our final chemo date. It is set to the 28/05/2014. Vega will be 5 1/2! I am not complaining. I am glad that there is an end in sight, even if it is so far away that I can not (yet) see it. But it is there.

One of the best things about maintenance is the lack of hospital days. I don’t mean inpatient stays, although I do hope those will be fewer too, but the days that we have to attend the Marsden or even Kings for administration of cytotoxic stuff. Our next appointment is in two weeks time for a lumbar puncture but then we won’t be at the Marsden until the 31/12/12- that is when Cycle number 2 starts.

 

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3 thoughts on “Maintenance Cycle 1

  1. ah Kathi, already at your second paragraph I was lost… German efficiency or not the mind boggles. You all deserve a medal, but most of all you all deserve lots and lots of good days ahead to reach 28 May 2014 laughing. May this wish be granted! lots of love

  2. Hi hunny,
    just back from 4 days away and read this – sadly i understand it all, ache at full-time ness of it all and remember oh so friggin well the carrier bags full of drugs – just thank god you are an anal german!!!!!!!! (unlike myself who once downed 10 anti sick tabs as opposed to 10 steroid tabs!! duh!) just keep that end date imprinted in your mind – better days may be far off – but they will come! Shame they cant give a nice carrier bag full of resources for carers, but rest assured we are all rooting for you on a daily basis.

    big hugs to you and your steroid grumpy bear xxxxxxxxxxxxxxxx

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