Thursday, 8 October 2009

To Afinitor and beyond......

Ok yes, I know, I know - it's a dreadful pun but I simply couldn't resist it !

I have just, this minute, taken my first dose of Afinitor. And this morning I had my first infusion of Zometa - and my 3rd dose of radio therapy. Starting one new treatment can be a bit daunting but three at the same time is definitely the most 'challenging' thing Ive done so far!

I decided I would go to the hospital on my own - I had no idea how long I would be there, it could have been most of the day as far as I knew, and it didn't seem fair to ask Martin to take the whole day off work just to hang around in the waiting area. He has already spent what must be days there already, bless him.

At 9am sharp Dr. P called me into his room where he was ready with the head pharmacist - and my Afinitor. I know it sounds silly but I was actually really excited to see the two big boxes on his desk, two months supply, with my name on them. My blood results had come back and they were normal so there was no reason I shouldn't start taking it that evening. The sooner the better as far as I am concerned - lets just get on with it. We then spent some time discussing the dose and possible side effects, which arn't dissimilar to Sutent although Afinitor is generally better tolerated. Afinitor is taken continuously, you dont have a break or cycles. 10mg a day. Side effects can include fatigue (yes, know that one), lung problems such as shortness of breath, cough etc... It can also increase your blood/glucose levels and cholesterol so regular blood tests are needed. A sore mouth is pretty common, something I had when on Sutent during the early cycles. Afinitor makes you immunosupressed so more likely to pick up infections - and you cant have any live vaccines whilst taking it. I guess that means I wont be able to have the flu jab this year, Ill have to check with my GP and see what he says.

So - not too bad then ! (she says, hopefully) As with any new drug the side effects will differ from patient to patient so I will just have to see what happens when I take it. We then spent some time discussing how I was in general - particularly in regard to the horrid effect steroids were having on me. I'm still retaining water, my feet and hands are very swollen, and I have the typical 'moonface'. I can start to reduce them slowly later this week when the last bit of Sutent should be finally leaving my body and my joints start to recover.

Apart from the lump under my right boob, which has grown and is now the size and shape of a large avocado, all the others appear to be the same - but its been a few months since my last CT scan so Dr P has booked me for one - its a good idea to have one as I start Afinitor anyway. And that was that. Big smiles all round as I left and pottered round to the radio therapy department clutching my bag of Afinitor. I felt ridiculously positive - and more than a little lucky. I'm not sure lucky is the right word, but everything seems to have happened at exactly the right time for me and I thank God for it.

Radio therapy was a new experience for me - I knew nothing about it really, except it uses radiation to kill off cancer cells. I didn't know, for instance, that a 'mould' is made of your legs and bottom to make sure your bones are in the right position every time you have treatment. A 'mould' of my bottom for goodness sake !! And its bright red !! I also have dozens of tiny black tattoos on my legs and chest wall which are lined up with the machine, again to make sure I'm in exactly the right position. Getting me in precisely the right position on the table, and it has to be accurate to within a few millimetres, takes about 20 minutes - the treatments, 3 of them, only take about 5 minutes altogether. Its just like having an xray - it doesn't hurt and you don't feel anything apart from being uncomfortable lying on a hard table for a while. For me the main benefit will be pain control - but it can make things worse before they get better and indeed that seems to be the case. Depending on which part of the body being treated you can also have other side effects but the main one is extreme fatigue yet again. Which will be great as far as I'm concerned as I'm still not sleeping very well !

Two down, one to go. Zometa is given as an infusion in the chemotherapy department so it was another short toddle round there. Ive never been in this part of the cancer centre before so was surprised to see how big it is. There were at least 20 other patients sitting in big reclining chairs having their chemo. I must have had my 'rabbit caught in the headlights' look on again because the nurse looking after me made me a cup of coffee and sat and chatted to me for a while before trying to get a needle in my hand. It only took her three attempts, I was very impressed. And then a teeny bag of Zometa was dripping away - I felt a bit of a fraud looking round the room, all the other patients had big litre bags of chemo and there was I with this tiny little thing that only took 15 minutes to run through ! A quick flush and it was all over - apart from discussing yet MORE side effects. 'Flu' type symptoms for the first few days, fatigue (!), nausea and vomiting, bone pain - in fact the 'usual' suspects ! Its also advisable to take vitamin D and calcium supplements. I was given my next appointment for 6 weeks time and that was it - all finished. It was only 11.30am - everything done and dusted in two and a half hours and I could go home.

I felt ok-ish. A bit shaky from all the poking and prodding and my legs were aching badly, but generally alright. I spent the rest of the day trying to take it easy and watching and waiting for something to happen but it didn't. Apart from the pain in my legs which I was taking oramorph for every 4 hours everything was fine and I even managed a nap in the afternoon.

And I have just taken my first dose of Afinitor - I remember taking my first Sutent, sitting there and waiting for something to happen - not knowing if it was going to work or not.

I'm a bit apprehensive to say the least about the next few weeks - I know its going to be tough - I know its going to be hard work staying focused and positive. But Dr P obviously thinks I'm capable of coping with it. And I have all the support I could possibly need so I'm just going to grit my teeth and plough on through it....and concentrate on the benefits I should feel in a few weeks time.

Talking of support I want to thank everyone for their comments on this blog. You have no idea how much they mean to me. If I'm having a bad day reading them gives me just the boost I need to keep going, keep fighting. Knowing I have so many 'friends' out there, whether personally affected by KC or not, gives me such strength - and not just me either, Martin loves reading them too

I'm utterly convinced that soon, very soon, we will find the right path to deal with this horrible disease long term.


mortonlake said...

all i can say my love is, jane you put me to are one hell of an amazing lady,and im proud to know you through your journal.keep in there girl.take care,love

Yasmin said...

Wow thats a lot of treatment, and how you face it all I'll never know but you do and that's the thing your still kicking and fighting, I hope you see a marked improvement over the next few weeks because if anyone deserves a respite it's you. Chin up

Take care


Anonymous said...

Jane so delighted for you that the new treatment has started,keep that awesome positive attitude and am certain you will soon see results, thank god you have such a wonderful team and a consultant that fights to get your drugs approved and available for you.Blessings on you, and your family, shall be waiting for a positive update,you are one awesome lady.

cruelladesurf said...

Hi Jane, I've recently started following your blog and it's a privilege to read of the courage and positivity behind stories such as yours, as well as the knowledge that having bad days is part of being human and that getting them off your chest may help yourself and others. I think journals like this offer real comfort and optimism to those in similar situations. The people who find the time and courage to share them offer a real gift to the rest of us, difficult though it sometimes is. Keep fighting girl, I'm rooting for you every single day. C xxxx

Deb said...

I 100% know that you are definitely capable of coping with the new drugs and radio therapy. Everyone is learning so much Jane through your travels with cancer. You are blazing a trail for everyone, so keep positive, don't quit and remember, we are ALL rooting for you!!!
You are such an inspiration to everyone.

Emma said...

Hi Jane

My mum takes Zometa (along with Herceptin and a chemo in tablet form I can't remember the name of). She says the worst day is about three days after the dose, when she is zoned out all day (my father claims there is no difference) and then she is fine for the rest of the time. She also says thanks for the udder cream tip!

Take care. Thinking of you (off to see Dr P again tomorrow).


Andy said...

Hope all goes well.

Joanne said...

You are one amazing person. You give me so much inspiration in my battle with RCC. Keep on fighting!
Joanne (Ontario, Canada)

Jackie said...

Hello Jane, I've been off here for a few days, had a birthday 53 I can't believe it, they told me I would be unlikely to see 51, little did they know how determined we patients can be at times. I'm still on sutent, cycle 6 now,very little side effects except the inevitable fatigue! I feel I'm following in your footsteps as I read your blog and it does me wonders seeing the hope you give to all of us. I hope you manage the side effects as well on these treatments as you've done in the past, keep us informed Jane and we'll carry on fighting it together.
Any updates on that bucket list???
Jackie xx

Alexei said...

I love your positive attitude Jane. You're a great example of courage under fire. Shedload of positive thoughts coming your way. You remind me of the Mary Tyler Moore song "we're gonna make it after all."