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.

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

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)

Swellings and rashes and gasps - oh my!

Today I went to do my blood work as usual. Usually there's an assorted collection of phials, they are all coded by colour and I've been trying to figure out what they all are. There was a new one today - light blue - I asked the Vampire what it was for and she told me it was for checking my blood coagulation, "oh" said I, "are you going to have some surgery soon? she said. "No" said I, but then spent the next three hours in the waiting room worrying that Dr. Messner was going to drop some horrible news on me. But he didn't - phew!


Liver is still doing well. (or 'Oliver' as Heather has christianed him) and I can double the hydroxyurea but have to keep a look out for swellings, rashes and shortness of breath and if I get a pain in my chest I have to go to Emergency straight away (well, duh!) Because of Oliver's prejudice against the Imatinib (Gleevec) it's looking like I will be starting the next generation, Dasatinib or nilatinib WHEN Oliver is feeling better. Only 10% of users on Nilatinib experience liver problems, so that sounds positive but I read that Dasatinib has a side effect of inflammation of fat under the skin - not good! I have a generous helping of fat under the skin and I really don't fancy the idea of it all getting inflamed. At least with the Gleevec it was just my eyes and ankles that got swollen and having slightly swollen eyes was advantageous as it hid the wrinkles ;) but swollen fat? I really can't face my bum and thighs getting more 'inflamed' than they already are!

Off the Gleevec

Well, I've been off the Gleevec for about six weeks now. I came off it because my liver was reacting to it. I'd initially had to have an increased dose as it wasn't working too well and pretty soon my liver decided it didn't like the extra work and started complaining.

Poor old liver, I feel like I've let down a good friend. It's been there so many times for me before, working tirelessly through those Southern Comforts, Bombardiers and Mojitos and I never even said thank you, now he's unwell (funny that I should assign my liver masculinity, I'm sure a shrink would offer a reason) and there doesn't seem to be much I can do to help him. I've had no alcohol for six weeks but other than that, what can I do? The silly thing is that I'm feeling the best I've felt in a whole year. I woke up two days after no-gleevec feeling stronger, more flexible and finally alert. I've been free of 'brain fog' for six weeks now and have started losing all the weight that I'd gained on the medicine - apparantly some people lose weight with Gleevec, but oh no not me, I had to gain, though there has been a lot of comfort eating if I'm truthful.

I've barely needed a nap and have even been known to chase Jarvis to the slide and beat him down it. That would have been unheard of six months ago. To add insult to injury my blood is now better than it's been the whole time I've been on Gleevec, infact it's verging on normal, probably the reason that I have more energy as my red blood cells are back on duty.