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)

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.