Ups and downs of Sprycel Dosage

Bit of a rollercoaster ride with my medicine.  My liver is showing signs of grumbling and to be on the safe side, the Doctor has listened to its complaints and I have gone from 60mg, to 80mg to 60 mg to 40 mg to 60mg to 80 mg and am now back to 60mg again!  I NEARLY made it to the recommended dosage of 100mg, but alas it was not to be - we have to listen to oliver and bow to his demands.  After all it's probably not him being fussy, it's probably all those years of alcohol-infused neglect that have led him to be sensitive.

There's no-one to blame if you get CML, it's not something I brought on myself through smoking or sitting in the sun too long.  I was just randomly picked on by a very small but powerful force of nature that has changed my body chemistry, starting with one single stem cell who decided to have a party in my body and needed some more friends.

I think my liver has decided that it's just one party too many and he wants a nice quiet life, he just wants to sit in front of the telly thank you very much and the only action he wants to see will involve Bruce Willis in a dirty vest or Angelina Jolie in a much smaller tighter one (I mean vest in the English sense, not the American, ie. small piece of underwear worn on the top half of your body, also called 'wifebeater')

So he's sitting on the couch with a cup of cocoa in his hand and grumbling about the tiniest increase in dosage and for now we must listen to him. But I'm staying hopeful that he'll fall asleep soon, let his guard down and get comfy; relax into his new feeling of protection and nod off.  Then we can sneak up the meds slowly - he won't even notice when he wakes up at five in the morning with a crick in his neck and dribble down his chin and a repeat of Dukes of Hazard on for the fifth time!  If not I could try bribery, but something tells me he's not going to accept a few beers as payoff.

Fingers crossed!

No complaints from my Liver !

Yeah for my oliver! I've been upped to 80 mg of Dasatinib because he/it didn't complain. I haven't experienced any of the horrible cramps that I got with the Gleevec and have better energy levels too. Keeping my fingers crossed ...

My head is full of blog.

it's 5:00am. I can't sleep. My head is full of things and I need to blow it out into some enormous hanky (or should that be, hankie? Hmm, spell check hasn't rejected either.)

I have a blood checkup in a few hours time, a liver ultrasound tomorrow and it was my son's birthday yesterday. All in all I'm not feeling relaxed enough to sleep. Rather than toss and turn, wiggle, yawn and scratch my head a lot (note to self: check for headlice) which keeps hubbie awake I chose to come down here and have a glass of milk like some little old lady. Which is how I feel at the mo'. A bit stiff and a touch grouchy but hopefully not smelling of wee.

I've been on the Dasatinib for two weeks now. First 40mg, now 60mg. Liver is ignoring it at the moment and my blood work has improved - those little white blood cells that have been flooding my system are disappearing again. I'm not experiencing any bad side effects, not even the vomitting and diarroah (hmm, no red line under diarroah, could it be that I've actually spelt it right? It's a sad state of affairs when you find you've subconsciously learned to spell diarroah!)

But I have this nagging feeling that I'm more irritable than usual, a little over-reactive to things and when you have a son who is sweet and placid and well behaved and generally the most gorgeous boy in the whole world then I shouldn't be feeling 'scratchy' at him, but I have been. I had been planning his 5th birthday party. Not exactly a party per se, as I was insistent that he was not to have any presents (he already has a huge pile from friends and family and I'd told him that he could have a loot bag, just like his friends, which he was perfectly happy about) but a gathering of his friends at a play place, one of those large colourful, generally loud, padded, slidey, climby, rumbly tumbly kind of places. Just buddies having fun, no need for party games or stuff, just hanging out with the homies. I was trying to write directions for some of the Mums who were turning up but J was in a needy mode, he wanted me to build K'nex, make a sock puppet, fix his police station, play cooking and read a book, all in the space of about an hour. None of which I did because, as I kept on telling him, "mummy's busy, she needs to write directions so your friends can come to your birthday gathering". But after an hour I said (in big capital letters) "OK, I'LL PLAY WITH YOU AND FIX YOUR THINGS AND MAKE THINGS AND THEN THERE'LL BE NO PARTY TOMORROW OK? YOU CHOOSE WHICH YOU WANT - PARTY TOMORROW OR PLAY NOW? OK". Well, he could have just chosen one, but of course he chose both, which didn't do anything for my temper. I feel like a mean mum and I just hope it's not this medicine that's revealing my Mr Hyde because if this keeps my leukemia under control then I'll be on it for life and J doesn't deserve a Mum like that.

Mugga and PFT

Hmm, had my Muga and PFT thingy today.

Muga -At a high level, the MUGA test involves the introduction of a radioactive marker into the bloodstream of the patient. The patient is subsequently scanned to determine the circulation dynamics of the marker, and hence the blood. The patient is placed under a gamma camera, which detects the low-level gamma radiation being given off. As the gamma camera images are acquired, the patient's heart beat is used to 'gate' the acquisition. The final result is a series of images of the heart (usually sixteen)

The Muga was quite a curious sensation. The injection fills you with some kind of nuclear medicine to determine whether the heart's ventricles are healthy. He told me it would feel kind of warm, but he didn't warn me that certain areas would feel warmer than others. I had a horrible sensation of having wet myself! I could feel hotness flooding through my .... well, you can guess what part can't you?! I was put under a Gamma Camera and then the staff all vanished behind a little screen for a few minutes while I twiddled my thumbs. I've heard that there's some kind of alarm that you set off if you go through the American border within a few days of having had this test but I didn't get to find out, although Matt's seen someone else set off a big alarm there and hoards of Police appeared from nowhere and swarmed the car. That would have been quite exciting, but only worth doing if it was going to be hoards of Firemen, in my opinion!

The PFT was more activity based and involved me sitting in some sealed glass cupboard, with a clip over my nose and a tube in my mouth. I was instructed to take as big a breath as I could while they measured something and also had to do some strange panting dog thing with the Doctor cheering me on like some strange kind of manic dog trainer! Most peculiar. I left with a piece of paper, which didn't say very much except 50% which didn't sound very good. This test is so that my Oncologist will know if I'm ok to take the Nilotinib, which I want, so I'm hoping to pass. 50% didn't sound like a pass to me, but Matt looked it up - apparantly 50% is normal. Hooray for a C grade!

Aha! Red blood cells are normal this week, platelets are normal. Leukocytes are normal and liver is returning to normal. Good grief, could it be that I'm 'normalising'? if it wasn't for those damn cancerous cells circulating round like hungry sharks I could celebrate (only not with alcohol as I'm still banned!)

Dr. M seemed happy to put me on Sprycel/Dasatinib which you only have to take once a day once Oliver is in the clear. But I've asked for Tasigna/Nilotinib which has to be taken twice a day on an empty stomach because it seems to have fewer side effects, most particularly less people feeling tired and with less weight gain. I figure that I can be a better Mum if I have more energy, so it's got to be worth the medication constrictions

Double Booking

I have been double booked! Not in the exciting, "woohoo, I have two party invites for the same day, ooh, which to choose?" type excitement. No, it seems I am wanted at two different hospitals at the same time for a varied selection of investigative probings and exams - NOT really the same thing at all. Though some people probably get excited about probings and examinations, sadly; I am not one of them.

I have to be at The Toronto Western Hospital on 8th December at 11am for a Portal Vein Doplar (something sonic echoey a bit like whales talking to each other?) and an Ultrasound (to see my bouncing not-a-baby liver) AND I have to be at Mount Sinai Hospital at 8:30am for a PFT (Pretty Fucking Traumatic test?) followed by a 10:15 Mugga injection and scan. How amazing. You wait all year, trying to avoid invasive and stressfull examinations and suddenly three come along at once!

I'm not sure what these tests involve so far but I'm pretty sure I'll have to re-schedule some of them. The PFT is a lung check and the Mugga jobby is a nuclear medicine test with a gamma camera, so I might be glowing in the dark after that one, which will be useful next time I can't sleep and have to get up at four in the morning - at least I will be able to see my way down the stairs in the dark! They're both checks that need to be done if I'm going to start the Tasigna/Nilotinib.

The Portal Vein Doplar and Ultrasound are both checks on my liver, which hopefully don't involve the stabbing of long needles as used the last time a Doctor showed interest in my liver. The walk between the two hospitals takes 22 minutes according to Google Map (so nice that it gives me walking directions as well as driving) so I'm guessing I'll have to defer the portal vein doplar test at Toronto Western.

Weekly checkup

Hooray for my liver! He's still doing well, working hard and getting better, Dr. M actually patted me on the shoulder in approval. If things continute at this rate he'll be hoisting me up on his shoulder and carrying me round Princess Margaret Hospital! I have to stay on the same meds at the same rate (Hydroxyurea, or Hydrea, which is a chemotherapy drug often used
first in the treatment of CML. It's lethal to mature leukemic cells and can bring elevated white blood counts back to normal; however, it does not kill many leukemic stem cells in the bone marrow, and therefore does not effectively slow the progression of the disease) But he's considering that I need to start on Nilotinib (brand name Tasigna) because it has fewer liver complications (10 people who had liver probs on Gleevec got transferred to Nilotinib and only 2 of them developed complications) or Disatinib (brand name: Sprycel) which is already on the market and 300 times more potent than Gleevec. You have to apply to the company for Nilotinib and have to have an ECG before-hand but I had a sneaky peak round some websites and found that only 15% of people taking it felt tired and it seemed to have less fluid retention and weight gain than Imatinib/Gleevec - Hurrah! Less pleural iffusions too - double hurrah (I have no idea what a pleural iffusion is and I don't want to find out)