You are here

Another new member

JUST KEEP TAKING THE PILLS DEAR!

Hi, I'm a new member having been diagnosed on 23 July 2009 after a routine staff medical. I thought I'd introduce myself and tell you a few "highlights" of my experience so far.

I was surprised by the diagnosis, with a count of 319, as I'd had no symptoms (OK, in hindsight, falling asleep at my desk probably wasn't just due to boredom). I was also surprised how the Doctor told me, saying, "The good news is - you have CML!" It's good to see how very excited haematologists are about Glivec and the other "new" treatements.

I was checked into hospital 3 days later to start treatment and so that I could be babysat (technical term) through the first few days, or at least so my kidneys could be. An equation:
3 litres H2O IV + 3 litres H2O by mouth / 24 hours = Lots of visits to the loo.

After a few days on Glivec by blood counts were stubbornly not moving and it was realised that my blood was like porridge (another technical term) so I was moved to a different hospital which had fancy centrifuge machines named after the Spice Girls and other celebs. With the help of Ginger and Ant my counts were quickly halved and the drugs started to work.

During this time my hugely enlarged spleen took on its own celebrity status, with doctors queueing up to have a feel. My favourite quote was, "Wow, that's a real beauty!" And I just thought I'd had really firm abs!

Some side effects were easier than others. I turned out to be allergic to Allopurinol and the glow from my cheeks was enough to light and heat a small village. But the weight loss had its compensations - guilt free Mars Bars, those nutritionally complete milk shakes (0 to 300 calories in 60 seconds), and a happy hour back home fitting into clothes I haven't been able to wear for up to 17 years (hoarder, me?). But what's with this going off the taste of wine?

I got home after 15 days in hospital with roughly normal blood counts and plans to go on holiday the following week. I ended up going 3 days late as my platelets went briefly AWOL but got there in the end, passing through customs with a selection of drugs any international drug smuggler would have been proud of. Two blood tests in a Madeiran hospital later (part of the deal for the doctors to let me go) I returned home feeling well and rested. I've now been back at work for 2 weeks and am making the most of the rare opportunity to legitimately take it easy.

I'm still having fortnightly blood tests and things have not fully settled down but I feel fine and am confident, thanks to the wonderful doctors and nurses who have been looking after me.

I plan to attend the Nottingham seminar in November and look forward to meeting other CML patients there, as well as experts, carers and others.

Sorry about the rather long posting - I promise future ones will be shorter.

With best wishes
Cathy

susan dickerson
Wow Cathy what a time you have had, I thought mine was good but yours is better. Welcome to the cml club, where are you from I am from West Yorkshire and have had cml for 9 years, first on hydroxearea and allpurinol then interferon and chemo injections which gave me a partial response but then stopped working, now on gleevec and have been for about 6 years, and zero. Hope to see you at the Nottingham seminar Take Care Sue D

Hi Cathy and a warm welcome to you, although I am sure you would rather not be here! I'm sure you will find this site full of information as you go along & theres always people here to offer advise and support. I was diagnosed 2 years ago & also had a huge spleen, I think I had ever medic in the hospital examine it, to prod & poke & it caught a few of the out in the process, much to the consultants delight!!

You sound very positive and i am sure this will help you through.

Looking forward to meeting you at the Nottingham seminar.
All the best
Ali

Hi Sue and Ali
Many thanks for your welcome and kind words. I have to say that this support group certainly lives up to its name, it is full of information, warmth and support! It is also nice to hear my experiences are not unique as I haven't yet met a fellow sufferer to compare notes with.

I live in Orpington, south east London, Sue, a bit of a distance from West Yorkshire I'm afraid. However, I hope to say Hi to you both, and lots of other now familiar names, at the seminar in November.

Best wishes
Cathy

Hi Cathy
Welcome to the club. I too am relatively new (diagnosed Dec 2008) and though I live in Australia, I have found this forum great to be a part of. I think my strongest feeling at the time of diagnosis and for the next few months was fear. Leukaemia was such a fearful word and my knowledge was shamefully limited to know ing it meant cancer of the blood. Knowledge has given me confidence and belief in my ability to live with CML. You sound like you have a great sense of humour and that will help you as well. Having a laugh always makes things seem brighter. I have now been on Glivec treatment since January and have made the zero club in 7.5 months. I feel so lucky to have a treatment available to prolong life. It seems weird for a doctor to say we are lucky to have CML, but CMLers know exactly what they mean. Stay well and all the best to you!
Jeanette

Hi Cathy
Glad to hear that you are doing well. I too went off wine, but after some extensive field research at our favourite restuarant in Beckenham I now drink Rose wine, which is better. My consultant at Kings has said that one of the things you must do with Glivec is to take at least 1/2 pint of water with it not just a sip and swallow. I was dx June 2008 and don't get too many side effects. Best of luck for the future.

Tony

Hey all.

Cathy, I love your post. I couldnt have put it better myself. My experience was exactly the same, my spleen has been the subject of many discussions at Mayday hospital in Croydon and my initial count was 235.

I think my Ultra Sound scans have been circulated around the staff room with a post it note 'Av a look at this beauty!' stuck to the top. People meet you and say 'Ohh, YOUR the girl with the Spleen.'

I was diagnosed on the 9th September 2009 and am 4 days into my Glivec treatment. So far so good. No results yet but keeping fingers and teas crossed.

Im just around the corner in Shirley, Croydon so if you want to talk just let me know. Your sense of humour is very similar to mine.

pesty@hotmail.co.uk.

xx

Hi and thanks for your greetings Jeanette and Tony, and welcome to the club Pesty.

It's funny but I've gone from newby to old hat in no time on this forum. I feel like a vet compared with you September diagnosees(!). This is a great forum both for information and for that far less tangible warm feeling you get when you realise you are not alone and people out there care. I could spend all day writing to everyone I read from in here but unfortunately my honeymoon "taking it easy" period at work has ended in no uncertain terms (I'm fielding demanding emails between sentences right now).

Jeanette I'm dead impressed with your hitting the zero club in such a short period. That really is great news. We should all have a toast to Glivec, with Rose wine of course thanks to Tony's extensive research.

I love the spleen stories. I have to say that one of my symptoms (in hindsight of course) was that I was losing weight but my waistline was not shrinking. And I was having to get up in the night to pee (you really wanted to know that didn't you?). I now realise that having half your abdomen filled with "super spleen" did all that. It has now shrunk to almost normal proportions and lost its novelty factor. I am considering getting a dotted line tattooed on my belly saying "my spleen woz 'ere" to keep up the interest!

Tony and Pesty, we all seem to be pretty local to eachother. Are either of you planning to go to the seminar in November? It would be good to meet up either there or over a coffee sometime, in Bromley perhaps as that is fairly central. Let me know if you are interested and we'll sort something out.

All the best to all of you in CML land.
Cathy

Hey, Coffee sounds great and Bromley is fine. Just let me know when and where. My email is pesty@hotmail.co.uk if you want to contact direct.

I am def considering going in November but was a bit nervous on what to expect!

Thanks

Michelle