Living with CML - Chronic myeloid leukaemia: Thoughts

''study hard, think quietly, talk gently, act frankly' - Symphony for One By Seth Palmer

Wed, 30 Jan 2008 11:59:18 GMT

I saw this posted by Seth's mum earlier today and was truly moved by it. I found it generating a huge amount of thought provocation in my head (and still is doing). In particular I really felt that the words 'study hard, think quietly, talk gently, act frankly' where a wonderful way to aspire to live to as a personal ideal. In case you didn't know Seth past away just before Christmas last year and had been battling with AML for some time.

Symphony for One

'To live content with small means:

To seek elegance rather than luxury: and refinement rather than fashion; to be worthy, not respectable, and wealthy, not rich; to study hard, think quietly, talk gently, act frankly;

To listen to stars and birds;

To babes and sages, with an open heart; to bear all cheerfully, do all bravely, await occasion, hurry never.

Let the spiritual grow up through the common;

To choose to get better, never even; to trust a stranger, to keep a promise, to love.

To know G-d.'

Symphony for One « Surviving Leukemia

Rob

Technorati Tags: Seth Palmer

Quick personal update

Fri, 04 Jan 2008 17:01:58 GMT

been to the Royal Berks today, all blood counts look normal and so keep on with the 400mg of Imatinib.

Have the fun of another bone marrow test, but this time an aspirate rather than a biopsy which will hopefully be not as bad as last time...from my understanding less material is needed and hence a smaller needle and less effort. So that is booked in for early Feb.

Hopefully get my December PCR results soon from the Hammersmith so fingers crossed on that front

Rob

Technorati Tags: CML, Leukaemia

Not the happiest of Birthdays...

Mon, 24 Dec 2007 10:17:55 GMT

So I was having a pretty good birthday so far today, got some great presents and Felix helped me un wrap them this morning which was great fun, the goldfish we had bought yesterday was still alive and swimming about and work was nice and quiet.

Then I checked on all of my regular RSS feeds and came across this, 'The blog we didn't want to write' . I had been following Seths journey to fight against AML since he started his blog up in February of this year, I was really praying for him to pull through but it seems things didn't turn out. I never met Seth but traded the odd email back and forwards, my heart goes out to his friends and family.

Rob

Technorati Tags: AML

This weeks trip to the Hammersmith

Fri, 07 Dec 2007 09:22:32 GMT

Was a good one (on Wednesday), the main good news is that my PCR is down to 1.9, and in reality this was my September numbers, as I had not got around to asking about them. So a good response (the words excellent where not used this time) considering I started on Imatinib 7 months prior to that. Dr M said they would be looking for a 1.0 result after 6-9 months, so pretty much on track All my CBC number looked fine and in reality they have been pretty much in normal ranges for 9 months which is another good indicator of everything working...

In the weeks leading up to the trip I had started to get myself worked up about CML and the PCR number for some reason, i think it was a combination of stress at home and work but after the visit it feels like a weight off my shoulders. It was the first real extended time of worry about the future since the original diagnosis nearly a year ago. Why I had got myself in this state I don't know but a combination of a number of factors I guess, and this lead to sleepless nights which just added to my general feeling of being down. It is probably a natural reaction that most in this situation go through at some point.

Back again in 3 months when hopefully we will be talking about <1.0

Life has been hectic since my last post both at home and work, but things are looking pretty good all around at the minute maybe something to do with having next week off to do all those pre-xmas jobs and shopping and some rest hopefully...

It is coming up to my 1 year diagnosis (December 12th), not sure how I am going to feel on that date.

Rob

Technorati Tags: CML, Imatinib, Leukaemia, PCR

CML in my case is not...

Thu, 01 Nov 2007 13:54:39 GMT

Carboxymethyllysine
Cement Mortar Lined
Chirp Managed Laser
Chicago Miniature Lamp
Council for Mortgage Lenders
Customer Minutes Lost
Copley Motion Libraries
Chronic microvascular leukoencephalopathy
Concurrent Mapping and Localisation
Citizens for Media Literacy
Commodore Markup Language

or even

Classic Mogul League

For the full list see of 250 -Acronym Attic search: What does CML stand for?

Rob

Technorati Tags: CML

PCR down to 4.0

Wed, 12 Sep 2007 16:50:21 GMT

Was the only real item of note on my visit to the Hammersmith today, which is positive and Dr M was still more than happy with the rapidity of the reduction in my PCR count. Apparently the steeper the curve in terms of reduction the better positive reaction the Imatinib is having.

Besides that it was a longish day, getting into London, 2.5 hours wait at the hospital for what was no more than 5 mins with the Dr. I am not complaining at all, some times there are delays etc.

At least I got to catch up on some reading whilst waiting, The Bourne Ultimatum by Robert Ludlum, I struggled at first to get in the book as there are lots of references to things that have happened in the past. This is compounded I suspect by the fact the previous 2 stories in the series (Bourne Ultimatum & Supremacy) in terms of films in no way resemble the books, and I have only seen the films rather than read the books, so nothing really seems to follow based on the films... Anyway I am now and truly into the book and a good read it is although some what of a hefty tomb.

Rob :)

Technorati tags: CML, Leukaemia, PCR

Friday went ok

Mon, 10 Sep 2007 16:40:42 GMT

at the Royal Berks, all the numbers seemed to be OK, Dr S even decided that I only have to see her every 2 months rather than the current 4 week routine. Unfortunately I still need to go to the hospital to pick up my drugs as they won't give me enough to see through those 2 months :(

This week is Hammersmith week, so will get to hear what they have to say and see if it matches the RB...

Rob :)

This week is bone marrow extraction week...

Mon, 30 Jul 2007 11:17:34 GMT

So I go into the RBH again this week to give my second bone marrow sample, I still recall the discomfort of the first time i did this way back in January. Back then it was just after dx and my head was so full of everything and nothing about the Leukaemia. Now some 7 months on, with treatment going well, and my understanding of what is happening I am feeling a little apprehensive about it all...I know it is going to be uncomfortable and maybe a little painful, I know it will be sore for a while afterwards, I know I will probably be a little grumpy for a few days. But it is the only way they can get a really accurate picture of what is going on, so a mans gotta do what a mans gotta do....

One thing I haven't got used to totally is the pacing it still, this weekend we had a weekend away from Felix (thanks to Sarah's parents for baby sitting) so we drove down to Brighton and spent the day there, and we did what we used to, which is to walk everywhere. During the day I was fine but by the time it came to dinner I was getting tired, we had some problems finding a hotel, so just turned up at a few and eventually found a wonderful place called West Stoke House Hotel (http://www.weststokehouse.co.uk/). A guest hadn't turned up and so we where able to grab the last room, which was huge with a bed big enough for about 10! We had a lazy day and the headed home and once there I crashed out and slept solidly for 90 minute in the afternoon. At the minute I have a desire to do more from an active lifestyle, but when I do things that in the past I would shrug off I get very tired afterwards. I hope this will change in the future...

I havent posted many links recently but here are a few

A bit of a bruhaha about Novartaris ~~and the cost of there drugs~~ and a whistle blower http://www.pharmamanufacturing.com/onpharma/?p=1273 over a drug called Tasigna which is a new drug for CML under going trials which is aimed at patients who have CML resistant to Dasatinib and Imatinib

ONCONASE (a natural protein from the leopard frog) study http://www.mesotheliomanews.com/2007/07/25/latest-research-shows-promise-of-onconase-as-treatment-for-mesothelioma/

Hope For Improved Leukemia Diagnosis And Treatment Using Molecular Detectors - 'University of Florida researchers have successfully used molecular probes to detect subtle differences in leukemia cells from patient samples, an achievement that could lead to more effective ways to diagnose and treat cancer. '

Rob

Technorati Tags: TASIGNA, ONCONASE

80% in 5 years

Fri, 06 Jul 2007 15:58:39 GMT

I met up with an old friend who I hadn't seen for a while (he knew about my CML) and discussion of course turned onto that subject and how my treatment was going. So I repeated the often quoted line of

"The chance of a CML patient surviving more than 5 years is 80%...' this is something i have often seen quoted on the Internet (so it has to be true doesn't it), and also some figures I recall from various meetings with various specialists. Anyway he was quite shocked at this prognosis, or maybe it was my blaze comment, almost as a throw away comment. I could see he was turning the numbers around in his head and thinking, so you have a 1-5 chance of not making another 5 years. So I chipped in with all the new developments in drug treatments (Dmatinib etc). But it was only later when I reflected on the conversation that it made me think...

Back in December when I was originally diagnosed, I was obviously very scared of the real prospect of not living too much longer and all that emotionally brought up, not seeing Felix grow up, not growing old ungracefully, all those things you want to see and do, not seeing Leeds United win the premiership (ok I may never live that long!!!). However now I feel very positive at my outlook, and really believe I will live a long time. But I do sometimes sit back and think, hey don't be so flippant about it, this is a big deal and don't just carry on being so blaze about it. I am sure it is my way of coping with the whole Leukaemia thing, I am not in denial or anything, I just think about it less and less and try to not let it dictate my life. I do think about it every day, probably because of the blog and checking the various feeds and support communities, and yes I have to go to various hospitals for various test every now and then, but it is just something I am living with.

I know it is not so easy for those close to me to take the same outlook, and at times it is hard for them to talk about it. Being a carer is just as hard (if not as hard) for the patient and my eternal love and thanks go to my wonderful wife Sarah in this respect. Being one stepped remove but entwined in the situation is hard for her I know and how she copes is fantastic.

We hope to both go up to Edinburgh for the 6th annual CML UK Seminar, and take some time out in Edinburgh at the same time, just sorting out the babysitting in advance. And I hoe this will give Sarah the chance to meet and talk with other carers who all do a wonderful job.

Rob

Technorati Tags: Leukaemia, CML

Geoff Thomas riding the Tour de France route again

Tue, 03 Jul 2007 10:30:25 GMT

Although nothing on his web site, I spotted this article on the BBC web site

Geoff's latest bold Gallic Goal

He is going to be riding the tour de France route again , raising money for Leukaemia charities

'The foundation's aims are to raise money specifically for the development and delivery of new treatments to patients with blood cancers. Five centres have been identified - Birmingham, London, Manchester, Nottingham and Oxford - and the immediate goal is to pay for a clinical trial nurse in each of them.

At £30,000 each, this kind of expertise does not come cheap. But as Thomas has discovered, beating cancer is largely a numbers game.

"The technology is catching up with cancer but it takes a lot of money and expertise," said Thomas, who starts his 2007 Tour with a prologue in Hyde Park on Monday 9 July'

Good Luck Geoff

Rob

Technorati Tags: Geoff Thomas Foundation, Leukaemia

Ceflatonin

Fri, 15 Jun 2007 10:24:16 GMT

I am still amazed by the amount of information and work being done on research and new drugs on all forms of Leukaemia, of course it is big business..

Ceflatonin is a new one to me until I saw this information...

ChemGenex Announces Publication Confirming Activity Of Ceflatonin In T315I-Positive CML

"The T315I mutation is known to confer resistance to both Gleevec (imatinib mesylate) and second-generation tyrosine kinase inhibitors (dasatinib and nilotinib). "

"We believe that Ceflatonin offers significant potential as a therapeutic alternative for these unserved and growing CML patient populations..."

Rob

Technorati Tags: Ceflatonin, CML, Leukaemia

Weeks holiday and recent readings...

Fri, 25 May 2007 13:21:56 GMT

So I am about to go on a weeks break, not really planning to do much just some well earned R&R. We have a few things planned such as taking up my birthday present from Sarah of some Glider flights at Lasham Gliding. This has been on my list of things to do for a long time, and Sarah got me the present before I was diagnosed. Hoping the weather will hold. I am sure we will do some other family stuff, but it is my first real break from work since being diagnosed back in December.

Also have a regular catch-up at the Royal Berks, and am expecting (hoping?) for a quick blood test, which shows all is going to plan.

I probably won't be getting on the PC too much so will have a lot of catching up to do on my return, however some of the interesting stuff I have read recently include..

Mutations of Mortality, I have added the blog of Terry Hamblin, Professor of Immunohaematology at Southampton University, to my feeds list in outook. His blog is entitled Random thoughts of Terry Hamblin about Leukaemia, Literature, Poetry, Politics, religion, Cricket and Music.

Some cancers linked to very low frequency Electromagnetic Fields - this report of Swiss railway workers seems to be reported on a number of sites, and the original report claims 'we found some evidence of an exposure-response association for myeloid Leukaemia....' the original research can be found here http://oem.bmj.com/cgi/content/abstract/oem.2006.030270v1 but you have to pay for the full text... I am not sure what exactly Extreme Low Frequency Magnetic fields are, what causes them or if the sub station at the bottom of my garden emits such things...

Baldy Blog's (aka Adrian Sudbury) Video Diary parts four and five, these snippets are great for getting an understanding of the chemo and bone marrow transfer he is under going works and how he is dealing with the therapy

Dasatinib Effective in Blast-Crisis Chronic Myeloid Leukemia - interesting snippet of research about Dasatinib

From the Adelaide Advertiser 'researchers funded by the Peter Nelson Leukaemia Research Fellowship Fund have made a world breakthrough by discovering a simple "on-off" switch giving leukemia cells an advantage over normal blood cells...'

Rob

Technorati Tags: Leukaemia, CML, Dasatinib

Some better news...

Fri, 25 May 2007 12:44:24 GMT

Today I got a cheque from my life insurance company(Canada Life). Honestly I would rather not have the CML and not have the money, but it is of some comfort because it means one less future thing to worry about. At least in the short /medium term we won't have to worry about money if for whatever reason I cannot work anymore. The whole process was quite easy if a little drawn out, filled in a form with doctor details etc and that was it. I hadn't been counting on it. Although I had been told that the cover included all types of Cancer & Leukaemia, I was half expecting the insurance company to have some sort of issue or claim that with current treatments (Imatinib etc) that it wouldn't pay out, but to their credit they did.

I had only got this cover because it was offered by my employer as part of the benefits package, and it was one of those items that you couldn't really opt-out of and take the cash benefit instead. I had a reasonably low amount of cover, (hindsight being a wonderful thing), but then as fit and healthy person you would have no reason to think you would have this type of thing happen to you.

So first thing to do is get the money in the bank and then seek some serious financial advice.

Rob

Technorati Tags: Canada Life, CML, Leukaemia

More on Geoff Thomas

Tue, 22 May 2007 15:49:49 GMT

A while back I blogged about the Geoff Thomas Foundation, well I spotted this interview he did with the Daily Mail on Piercing and tattoo News

Geoff is promoting a new joke book called White Van Wit, which is being sold for £2.49 in aid of Leukaemia Research in all Wicks DIY stores

I cannot find anything on his own web site so not sure how old this is or if it is still available....

and before you ask I am not about to go and get bodily parts pierced or painted, the link came from a technorati search, honest

Rob

Technorati Tags: CML, Leukaemia, Geoff Thomas Foundation

Something of an update

Tue, 22 May 2007 15:38:02 GMT

This weekend was a bit of a struggle, I came down with a little cold which seemed to wipe me out and I am still having the effects of that tiredness so far this week. On a more positive note my cramps seem to have subsided some what.

As always your own problems are put into perspective with the stories of others, such as Davos (King David The Wicked). I am not a religious man so I won't promise to pray for you, however you are in my (and I am sure countless others) thoughts, your strength and courage is very powerful for others, please don't forget that.

Rob

Technorati Tags: CML, Leukaemia

Five-Year Follow-up of Patients Receiving Imatinib for Chronic Myeloid Leukemia

Tue, 15 May 2007 16:35:11 GMT

Not sure if this is old news or not but one of my automated feed searches picked this bit of research up from late last year

Five-Year Follow-up of Patients Receiving Imatinib for Chronic Myeloid Leukemia

for patients on early phase CML taking Imatinib the study showed 69% complete cytogenic response within 12 months raising to 87% by 60 months, and overall survival at 89% at 60 months...

more details at clinicaltrials.gov

The co-incidental thing about this is that the web site says the original article was dated December 7th 2006, which was the day after my fateful failed blood donation...

Rob

Technorati Tags: Imatinib, CML, leukaemia

Some links and a bit of an update..

Thu, 10 May 2007 16:14:37 GMT

This week has been quite a strange one, we had a great May day bank holiday, did lots of close by family stuff and a number of what in the past I would have classed as small strolls (4-5 miles) in and around Finchampstead and Wick Hill. I was still feeling energized and ready to tackle the world, then I woke up on Tuesday morning feeling absolutely exhausted, a quick shower made no difference and I headed back to bed, where I stayed most of the day. For the rest of the week I have felt pretty bad, generally tired and feeling groggy as well as some, and how to say this politely, errr movement problems in terms of, no I won't go into detail...

As always I don't know if it is the CML, the imatinib or neither...

Work has been busy too, so little time to catch up on the various blogs and newsgroups but here a few items that I have been reading recently....

Scientists discover genetic 'shut down' trigger - A fundamental genetic mechanism that shuts down an important gene in healthy immune system cells has been discovered that could one day lead to new therapies against infections, leukemia and other cancers. Results of a University of Pittsburgh School of Medicine study on the mechanism, called a somatic stop-codon mutation...

She Invented (Gertrude B. Elion) - Purinethol... the first leukemia treatment... and more from Wikipedia

Surviving Leukemia - I stumbled across Seths Blog about his experiences with AML (Acute Myleoid Leukaemia)

The Struggle to Move Beyond 'Why Me?' - NY Times written by Alice Lesch Kelly article on the question a lot of us ask about why did I get cancer...I love the last paragraph "I'll never know why i got cancer. What I do know is that the sooner I let go of the need to find something or someone to blame the sooner I'll be able to put cancer behind me and enjoy life, however long or short it may be. Only when I accept the sometime cruel randomness of fate will I be able to call myself a survivor." Thanks to Erin for the link

Rob

Technorati Tags: CML, Leukaemia, Cancer, AML

WBC back up again

Fri, 04 May 2007 13:42:34 GMT

So following my blood test my WBC has gone back up to a more normal level 4.2 from 1.4

Which is good news as I will expect to be able to stay on the recommended 400mg of Imatinib rather than a reduced dosage.

It remains to be seen if the message between the 3 parties gets through. I will be chasing up with the Royal Berks next week to make sure it has.

Interestingly I got to see the full details of the tests and it shows some other readings that are outside what they should be..

What?	My Count	Normal Range Low/High
Red Blood Cells	3.7	4.3 - 6.2
PCV (packed cell volume) or Hematocrit (HCT )	0.39	0.40 to 0.54
MCV (mean corpuscular volume)	105.8	76 - 96
MCH (mean corpuscular hemoglobin)	36	31 - 36

I suspect they are all interrelated for being out of range...

All other counts seem to be ok, haemoglobin = 13.4 , Neutrophils 2.2 , Lymphocytes = 1.6 , Monocytes = 0.3, Basophils = 0.0

Rob

Technorati Tags: WBC, Imatinib, leukaemia, CML

I was about to run down to Starbucks for a second coffee

Thu, 03 May 2007 09:34:43 GMT

after I read this...

Moderate Coffee Drinking Reduces Many Risks

...moderate coffee consumption (3-5 cups per day) may be associated with reduced risk or certain disease conditions, such as Parkinsons disease...

... other studies have found it reduces the risk of Alzheiners disease, kidney stones, gallstones, depression and even suicide.

Until I got to the last paragraph where

.. there is some evidence of increased risk : leukemia and stomach cancer. The evidence for the former is intriguing...

so maybe not....

I did however find the first coffee controversy dating back to 1570 amusing

Some Monks petitioned the pope to condemn this drink, so popular among Muslims. Pope Clement VIII, liking how it kept the monks form falling asleep during mass, purportedly blessed it instead.

Rob

Technorati Tags: coffee, leukaemia

If you had to donate bone marrow would you?

Fri, 27 Apr 2007 12:08:08 GMT

Like Michael I had been on the bone marrow donor list, that was before I was struck off the donor list due to the CML...

It had occurred to me (before the diagnosis) that if I had actually been a match for someone how would I feel about donating? I think I would have gone through with it but would have had so many concerns about the actually process. Deep down I suspected that I hoped that I wouldn't have to make that choice and I would be no ones match...

The sacrifice of some of your time and little pain to save a complete /anonymous stranger who you would never meet, should be a no brainer but I can understand why you would have second thoughts...

Rob

Technorati tags: bone marrow donation

ACAI granola bar

Mon, 23 Apr 2007 13:55:47 GMT

Remember the super berry ACAI? well I spotted these in Saturdays Independent I don't think I will be going out and buying a box of 24, but if I see some anywhere I will probably try one out...

Also you seem to be able to purchase bags of the berries in pulp form, but what I would really like is something which I could add to my breakfast cereal, so a real piece oof fruit rather than powder. I will drop the company Pulpa an email and find out how i can get hold of some. They seem to sell all sorts of good for you type foods as well from Brazil

Rob :)

Technorati tags: ACAI, Pulpa

A few days reflection

Mon, 23 Apr 2007 10:33:37 GMT

Technorati tags: CML, leukaemia, cmlsupport.org.uk

I was quite down last Friday following my low WBC number, as mentioned earlier, everything up till then was really going by the book, I had got to hematological remission without too many problems, living with the Imatinib wasn't causing too many side effects, and those that there where where manageable.

However a weekend away my wifes sister and family on the south coast (Weymouth), and some good words from Elizabeth on www.cmlsupport.org.uk have made me feel a lot more positive on the situation. Completely knackered running around after the kids and playing in the sun took it out of me, but such a great way to spend your weekend :)

I am treating this as a blip nothing more and nothing less. It is just one minor little hiccup that in the bigger picture will hopefully fade away and be put right.

Positive Mental Attitude right!

Rob :)

Now my white blood count is too low

Fri, 20 Apr 2007 14:59:52 GMT

So I was hoping that today's blood test would not show up any problems, however it has come back with a low WBC number of 1.4, which is obviously is of some concern. Dr O suggested that if no improvement in 3 weeks then she would reduce the Imatinib down to 300g from 400g. From that I ma guessing that the drugs are being a little too aggressive and so a lower dosage would help improve matters. It could be why I have recently been feeling so tired recently...

Wikipedia states "White Blood cells or leukocytes are cells of the immune system which defend the body against bot infectious disease and foreign materials." I haven't come down with anything recently but i guess that I am more at risk at the minute, so will try and stay away from the sick and poorly ;)

I don't know if this is a normal reaction, and its my bodies way of trying to sort out what is going on with the CML and the Imatinib, or if there is anything I can be doing from a diet point of view to help the situation, will hop onto www.cmlsupport.org.uk and post a question, as I am sure someone else is either in the same situation or been through it, and has some advice....

It has been at least 4 weeks since my last test (done at the Hammersmith) and I had only been on Imatinib for 2 weeks at that time, and my WBC was showing a value of 11, and when first diagnosed it was 170 ish.... To be honest I am a little depressed about it, everything so far has been going to plan and progressing as expected or that I could hope for, and this has brought home some reality that this is a bigger deal than I have been making out. Have I been in denial or just been Mr Positive?

The good thing is that I don't have to go back to the Royal Berks, and can get a sample done at work and then sent to them, which will save me a lot of time.

On the cramp front I asked if there was a link, and no there isn't apparently :S so that is something else to wonder about...

Rob :(

Technorati tags: CML, leukaemia, Imatinib

Too much living...

Wed, 18 Apr 2007 19:15:53 GMT

to get around to updating the blog (or reading others, and the message boards), work has been hectic, and have been taking the opportunity to take advantage of the unseasonably warm April weather.

The general aches and pains have largely gone, which is a real positive, occasionally I feel the need to have some ibuprofen but that is on the rare occasion. I am still getting muscle cramps in my feet and hands and will talk with Dr S when I see her this week. The general fatigue is still there, and that is the hardest thing to get sorted. I have probably been burning the metaphorical candle from both ends with my work and personal life, and just need to work out how to pace myself better. I have also found that if I eat a healthy balanced meal with my tablet then I fell less nauseous so have been trying to eat like that which seems to work for me.

This week is my first visit to Dr S for 6 weeks on Friday, a quick blood test which I will hope will reveal nothing toward, a new prescription of imatinib and hopefully I will be on my way.

Rob

Technorati tags: CML, Imatinib

Co-incidence?

Wed, 11 Apr 2007 13:08:09 GMT

I was reading James Strength today blog and he was discussing a movie called The Secret , and about 5 minutes later my line manager walks past holding the same DVD, which he had borrowed from someone sat next to me.

Fate, co-incidence, randomness or proof of aliens and big experiments?

From the sounds of it, it is not the type of movie that I would rush out and watch, but I am little intrigued now because of this co-incidence...But before I judge it, i would have to watch the movie or read the book...

http://www.thesecret.tv/ is the web site of the movie, i'll let you have a look (there is a video) and judge if you think that what The Secret is claiming is fact or fiction...

Info and reviews of The Secret at Internet Movie Data Base (IMDB) and Wikipedia

As mentioned in earlier posts I am somewhat of a healthy skeptic about lots of things, and reading the synopsis keeps me in that skeptical mood. However if it works for others then great and I am all for that :)

I have never really been a big believer in fate, intelligent design, God, or as Han Solo said I've never seen anything to make me believe that there's one all powerful force controlling everything...

So is getting CML fate, design, bad luck or due to some set of coincidental factors that has lead to it? and I think that what a lot of people with CML want to know is, WHY? and no one has a definitive answer..

Rob - apologies for the star wars quote

Technorati tags: The Secret, CML

Not looking quite so yellow...

Tue, 03 Apr 2007 16:35:23 GMT

was how a good friend said I looked last night, over a quick beer, we hadn't seen each other for I guess a month so I take that to be a good sign. The fact that I didn't know that I actually looked yellow in the first place was something of a surprise, but when I got home Sarah confirmed that I did indeed have more colour and was less yellowy than before...

This really is in line with how I have been over the last week, almost on a daily basis I feel some sort of improvement, less aches and pains, less nausea and less tiredness. In fact on Sunday we took advantage of the good weather and did some serious pruning of one of our apple tress (we should have done it about 5 months ago)! and followed by a nice walk in the sunshine at Windsor Great Park. In the past this would have resulted in me having a snooze for a couple of hours but I felt ok this time which was great as it gives me some positive experience to draw on, and hopefully step up my physical activities and try to get back to as normal as possible :) i still drop a couple of ibuprofen before i go to bed and have recently had some pains in my neck muscles but overall things are getting better.

Easter is coming up and we are headed up north to Leeds for some family stuff, and hopefully a night out for me and Sarah as we leave Felix with my parents.

Rob

Technorati tags: CML, leukaemia

The Internet is changing the way people manage their health

Tue, 27 Mar 2007 14:07:53 GMT

I spotted this over on the Cancerblog, which was talking about the way in which the internet has changed peoples views on managing there health and a recent study by Cisco Systems...(see link below),not specifically cancer or CML related.

Link to Internet changing the way people manage their health - The Cancer Blog

When I was first diagnosed, after the initial shock and tears had gone away I was straight onto the net to start researching the disease, and I found the resources available to me where excellent and actual help me get over those first few days. Being able to read about others experiences and the available treatments, side effects and positive outcomes for some very re-assuring. However a few days later I was without broadband for 3 days and this was an immensely frustrating period as I was so desperate for more info and the feeling of being unable to find out for myself was so frustrating.

I have often had the conversation with people subsequently about how did people manage without the Internet... when trying to come to terms with health problems. I suspect you had to rely on the information provided by your doctor and local support groups. Whilst this may have been expected as the norm, I think the lack of access to information about research, alternative therapies, bloggers, treatments etc would have been very frustrating.

One of the last things that Dr S said to me after my first visit was to not believe everything you read on the Internet... and this is a very valid statement, but being a rather healthy skeptic I feel happy making my own decisions about what is good Vs bad information on the Internet. How much harder or easier it is for the medical profession now in the Internet era is probably a very valid question....

Rob :)

Technorati tags: Cancer

Quick update...

Fri, 23 Mar 2007 10:13:29 GMT

Not much happening really, I have to go to the hospital again today, but only to pick up a new prescription of Imatinib. Bit of a trek for that , but it has to be done!

I am still getting the aches in my muscles and occasional (and I think less frequent) pain in my knee and ankles. However this week I have been suffering from more muscle cramps, mainly in my my hands and feet as well as my back, not really sure if this is a side effect of the Imatinib or the CML as I have suffered from occasional muscle cramps for many years. Also I still feel nauseous for about an hour after taking the Imatinib, which really makes me feel grotty. Although some days it is better than others, a nice healthy meal with lots of vegetables rather than say pepperoni pizza seems to have less of a side effect. But having said that a bowl of homemade apple & blueberry crumble with custard has settled my stomach on 2 occasions this week :)

The process of getting my sisters tested to see if they might be a match has also started, with tissue typing bottles sent to their GP's. So fingers crossed that one of them can become my backup plan in case the drugs don't work <wanders off in The Verve mode...>

Rob :) - a pill a day

Technorati tags: imatinib, cml, leukaemia

Catching it early is a boost

Mon, 19 Mar 2007 09:57:18 GMT

Well according to Emerging Therapies for CML transcript.

If you look at early chronic phase patients, those who've just been diagnosed, current studies would suggest its only about 4% of those patients who develop resistance.

Resistance to Imatinib that is, the article also states that with the standard treatment of Imatinib.

80% of patients we see a disappearance of the Philadelphia chromosome.

So I feel more so than ever that being a regular blood donor could have saved my life...

To read the full transcript click here (PDF)

To Listen click part1, part2 (mp3)

If you are in the UK go to the National Blood Service to find out where you can donate.

The one thing that all the doctors you meet and talk to say don't believe everything you read on the Internet, but these figures are in line with what I have read about on other trusted sites, as well as consultations I have had.

Rob

Technorati tags: CML, Imatinib, Gleevec

Post Hammersmith thoughts

Fri, 16 Mar 2007 14:39:07 GMT

So my day in London for my first meeting at the Hammersmith Hospital went very well, in fact probably better than I had anticipated, and I learnt a lot more :)

The first thing that hit us was how friendly everyone was, doctors talking to patients on first name basis, and a real sense of camaraderie between people waiting to be seen, who it appeared to all know it each. Of course the CML community is probably not that big. Whilst waiting for the appointment one of the other patients waiting who was sat next to us said hello and introduced herself (embarrassed to say i forget her name), she has had CML for 2 years and was very open talking about her treatment and telling us about the work of the CML Support group (http://www.cmlsupport.org.uk). This made us both feel very comfortbale and it was good to actually talk to someone else going through the same thing.

I have visited the site and read some of the discussions, but have actively not been involving myself as yet, as I know how much time can be sucked up on these things. But maybe it is time to get involved a bit more.

Anyway we got to the actuall meeting with Professor Jane (everyone is on firstnames remember). We talked about the hows and whys of CML and how I was diagnosed, and what medication I had taken so far, and what side effects I had been expereincing. The good news on that front is that they are quite normal for some people and hopefully should disaappear or reduce overtime which was very good to hear.

We then talked about the treatments, Imatinib mainly but also Sprycel and Dmatinib (which are new drugs either just on the market or about to be licensed), and how they combatted the disease, and also more on bone marrow/stem cell transplants.

But probably the best discussion was around how she wanted to see my reaction to the treatment over time, and with timelines of when she would expecting things to happen if we are looking at the most positive outcomes from all this. The good news being that I had hit her first milestone, that of reaching Heamatoligical remission, which was basically to get my blood levels back to normal within about 3 months, which they have. Just hearing that I had could say at least one part of me was in remission felt wonderful, even tho in reality it is a small step. I guess for some startign from a worse position this milestone is of greater significance. Anyway the next milestone is 12-18 months away and that is really to see if the Imatinib is having a positive effect, I think it was called Chomosomic Remession but I am not 100% sure, the next stage being further down the line when they cannot detect any CML in the system (or it is so small they can't see/measure it).

So for now it is going to be popping the one pill a day opf Imatinib (she told me not to bother with the Allupurinol) and montioring my progress, a meeting has been setup for June for this, and in the mean time it is back in the hands of Dr S and Dr O at the Royal Berks.

We also have a plan to get my sisters checked to see if they are suitable donors, and they will be my back up plan if the drugs don't work. Which should happen in the next few weeks, although I am not sure if that will be discussed in June.

Afterwards if felt like I knew so much more, but on reflection it is more around knowing more of what the future should look like, hopefully, and all things being equal it isn't all bad news, of course it would be better if none of this had happenned ;). Talking with Sarah later I think she found this invalubale as even tho she is going through the journey with me (and is the most supportive wife i could ask for), she is one step removed. So she found it very comforting to know a little more and what the medium and long term goals and outcomes are.

Still not got the pacing it problem right as by the time I got home I had an extra 2 hours kip, from the days very mild efforts.

Rob :)

Technorati tags: CML, Leukaemia, Leukemia

Not too sure what to expect

Tue, 13 Mar 2007 13:47:08 GMT

from tomorrows visit to the Hammersmith Hospital...

It seems to have been something that has had a sort of aura about it from the very first meeting I had with Dr S back in December 2006. Although never said, it was kind of implied that nothing would be decided or happen treatment wise till after that meeting, since December I had been expecting the appointment at any time. The fact it has taken nearly 3 months and I am now on the Gleevec means I am even more unsure as to what to expect.

From my understanding these guys are the UK experts on Leukaemia, but...

What will they tell me that I don't already know?
Will they offer me some alternative treatments? but do we know within 3 weeks if the Gleevec is making any difference?
ask me to go on a trial?
Tell me more about CML and the future?
Will I be having more tests on the day? there was no mention of it in the appointment letter...
Discuss about getting my sisters tested to see if they are a match?
- if they are, then what is the procedure timeline for getting it done
- if they are not, then what? a search of the current donors? if no match what happens?

Questions Questions Questions.

So it will be up at normal time and then the train from Reading into London, with my ever supportive Sarah. Depending on how long it takes and how tired I am feeling we may do something in London, otherwise it will be back home to ponder on the days events...

For some reason I feel a bit nervous and apprehensive about the whole thing, and I don't know why that should be :S

Rob

Technorati tags: CML, Leukaemia, Leukemia

WBC normal

Fri, 09 Mar 2007 14:09:23 GMT

Its a Friday so that means I have been to hospital for a blood test, and the results show my WBC as being normal (7) which is good news :)

I haven't mentioned my aches and pains for a few days because I wanted to be a little more sure that things hadn't improved for the better temporarily. But since coming off the hydroxycarbamide and taking ibuprofen my aches and pains have largely gone. I still get occasional twinges in my knee joints but nothing that is really bad and it is controllable with the pain killers. So not sure if it was the combination of drugs or the pain killers but whatever it has had a very positive effect. I have managed to get a few nights very deep sleep which has helped significantly and I feel able to do normal stuff more that earlier in the week :)

So all in all a good end to the week, next week is the Hammersmith trip so will see what that brings.

Oh and I forgot, I don't have to go for another blood test/check up at the Royal Berks for another 6 weeks :)

Rob

Technorati tags: CML, leukaemia, leukemia

So thats what it looks like...

Thu, 08 Mar 2007 13:20:16 GMT

Taken from Jim Kimball's Biology pages on CML

http://users.erols.com/jkimball.ma.ultranet/BiologyPages/C/CML.html

this is what the difference between a healthy blood cell and a CML one with the Philadelphia Chromosome. I am quite a visual person and seeing a picture/diagram of something usually helps me understand it that much better ...

I added the bugger text and arrow btw ;)

It is amazing something so small and seemingly inocuous can make all the difference :S

Rob :)

Technorati tags: Philadelphia Chromosome, CML

How Imatinib works - in one sentence

Wed, 07 Mar 2007 11:56:43 GMT

So I get asked this quite a lot, especially as I have started on the drug, and I found the simple line from an article on the web from way back in 2001 on the UK Guardian web site called 'the cancer revolution'

'Gleevec... works in a similar way by attaching itself to a mutated protein on the outside of the cell, thus blocking the rapid and fatal cell growth.'

Its a good article (if old) and well worth a read if you have the time

Rob :)

Technorati tags: Gleevec, CML, Imatinib

Imatinib Reaction 2

Tue, 06 Mar 2007 16:49:53 GMT

So been a few days since last post. The uncomfortableness and more recently pain as got worse and more often, although taking the paracetemol still helps it is not getting any better, in fact I feel like I am going downhill.

Yesterday my knees pretty much seized up in the evening, something that a hot bath really helped with. My sleeping over the last few nights has been better but I am still waking up at 4-5 am and then being unable to get back to sleep. I shuffle around trying to find a comfy spot where the aches in the muscles and joints go away.

So spoke with Dr S today and she suggested trying Ibuprofen (which in the past disagrees with me but am willing to give it another go), and to also take me off the Hydroxycarbamide. The thinking I guess to reduce my cocktail of drugs in case one is causing the problems because of one of the others.

I am still really wanting to stay on the Imatinib and see if I can tough it out, the assumption being that it is a phase and not something that is likely to be a permanent side effect. Eventually there must come a point where quality of life (I am not suggesting mine is so poor as to stop the drugs) out ways the benefits if the drugs. It will be a subject I will broach with Professor A when I meet him next week if not much better.

Rob

Technorati tags: CML, leukaemia, Leukemia, Imatinib, Gleevec

Imatinib update

Fri, 02 Mar 2007 09:23:54 GMT

Well things seem to have got worse since my last post a few days ago. The muscle weariness and aches have become more painful and for more often/longer. Also I have started to get cramping especially in my legs but also my hands. I have suffered from cramps for ages but the pain of cramp is something you never get used to :(

Anyway today I am having a full blood test and a meeting with Dr S, so will let her know about all the side effects I have been having and how the situation has deteriorated...

I was so upbeat about finally getting on the drugs, but the last few days have left me getting more and more worried about my bad reaction, I had hoped it was a phase (maybe it still is) that would wear off but so far it is just getting worse.

Update 5:00pm ish - well not much of an update i gave some more blood which was going for a full test, so I didn't hang around for the results that could have taken a few hours! I did catch up with Dr S who said if there where any problems she would phone, she hasn't so assume not :S Also she suggested some Paracetmol for the pain in the legs which to be honest I was a big skeptical about, however it seems to have taken the edge away from the pain :) we shall see over the next few days if there is an improvement...

Apparently the muscle pains is a common side effect of the drugs...

Rob :(

Technorati tags: CML, Leukaemia, leukemia, Gleevec, Imatinib

Imatinib reaction

Wed, 28 Feb 2007 19:42:10 GMT

So been on the Imatinib for 5 days now, the first few days I didn't seem to be having any side effects, however since monday am things have been going down hill slightly. Not to the point where I feel I have to come off the drug and not such that it is having too much of a negative impact on the day to day world.

I have been suffering from 3 things really

1. Fatigue/tiredness...have been really wiped out, to such an extent I have been having a nap 1-2 hours during the day and still feeling jaded all the time..

2. Poor night time sleeping, I think this is related to the above and below, I have not had a great nights sleep for the last 3 days, either a wide awake insomnia type periods or a tossing and turning night.

3. Muslce aches, especially in my thighs and to a lesser extent my upper arms and shins. It feels like I have over done a work out, or had a long day on the hills...So not really pain more of a throbbing ache, although sometimes i get a more acute twinge

I am sure they are all related, the muscle aches effecting my sleep and hene the need to sleep during the day.

However nothing to cause me too much worry (I hope) I am seeing Dr S on Friday so will discuss my reaction with her and see what she says.

I am really hoping this is a phase as my body gets used to the drug and eventually (hopefully quickly) it will subside.

Also I have had some mild nausea feelings but nothing close to actually being physically sick

Rob :)

Now on the Imatinib/Gleevec

Fri, 23 Feb 2007 13:33:20 GMT

So finally after two an half months Dr S has me on a course of Gleevec (400mg), which is pretty much the standard treatment for CML.

There is plenty info on Imatinib (Gleevec or Glivec is the name it is marketed under) on the web, but a good place to start is Novataris own web site on Gleevec.

So today was my bi-weekly trip to check on my blood, and everything is looking as normal as can be, WBC was 14 and I got some other info as well but have left my notebook in the car.

I am happy to be on the Imatinib as it had seemed an interminably long wait for a referral to the Hammersmith, I think this still may happen in the near future. Reading up on the drug already (from day one) this seems to be the best course of action and although there are side effects not everyone reacts in the same way and I am hopeful that I won't get some of them especially the nausea.

It does mean a couple of extra trips to the hospital as they monitor me a bit more closely to see my reaction to the drugs over the next month or so, but it seems a small price to pay. So next Friday it will be a full blood checkup/analysis and then if going ok back to bi-weekly.

Am still on the hydroxycarbamide and Allipurinol, however Dr S suggested I should come of the former after next weeks session, so that will be a nice concoction of tablets in the evening :S

One thing that was re-iterated was to continue to use contraception and not look to father a child, and I need to look into this in more detail. This advice is pretty much in line with official guidelines from Novataris and the various agencies as no one is really sure of the impact of the drugs on the foetus and child.

I think that subject requires another post because I am feeling quite emotional about it. After the appointment I grabbed a coffee in town and in there where a number of mums and babies and as I looked on I had almost a little tear well-up.

Probably what I need to do is get onto some of the discussion groups, something I have resisted so far largely based on the knowledge of how much time you can spend in some of these forums...however I will be following Erins Story more closely, she went of the Gleevec to allow her to have a baby :) and she is now pregnant :)

Rob

Technorati tags: CML, leukaemia, leukemia, Imantinib, Gleevec

2 months is not a long time...

Mon, 12 Feb 2007 10:42:32 GMT

My previous post reminded me that it has been 2 months since being told that I had CML. In that time I have had

4 blood tests
1 bone marrow biopsy
6 Visits to the royal Berkshire hospital
1 belly covered in hot gel
0 visits to the Hammersmith hospital
My WBC go from 170 down to 12

I still feel physically the same, and from time to time suffer from fatigue and tiredness, however my life has been turned up side down as you can imagine.

Technorati tags: CML, leukaemia

Rob

Its hard to talk about it sometimes

Mon, 12 Feb 2007 10:32:32 GMT

So had a first time experience at the weekend. Since finding out about the CML 2 months ago, I have found it quite easy to talk to people about the disease, friends and family and work colleagues. Either it has been a conversation over a coffee at work for my close work friends, or via email for friends over the world.

It has been easyish face to face for me to let people know, "i have some health issues, I have been diagnosed with leukaemia...."

However at the weekend we where visiting some close friends (and ex work mates of mine) and I had intended to let them in on it. But even thou there was a couple of good opportunities it never seemed the right time, I think I bottled it a little, which is a first for me, I hope it is not something that happens to often.

I could put it down to a number of things,

lack of opportunity/ wasn't a good time
the boys where playing lovely together
didn't want to spoil the day (they where going out to a party later on)
Very close friends vs work colleagues
etc etc

but they are just excuses, and I felt bad about subsequently sending an email rather than doing it face to face. Bad because I was unable to confront my fears/doubts in telling them, I am sure they will not feel in anyway shunned or let down but I felt/feel really bad about not being able to discuss it with them.

Technorati tags: CML, leukaemia

Rob

Checkup update

Fri, 09 Feb 2007 16:28:03 GMT

Nothing too exciting to report, WBC down from 17 to 12ish

No news on the Hammersmith appointment, however I did see the letter from Dr S to the Hammersmith dated 26th Jan (date of last visit). Whilst their Dr O (she did my original meeting, Dr S being away/unavailable) rang up the Hammersmith but only got voice mail.

So the Dr's don't want to start me on a course of Gleevec till after the Hammersmith trip just in case the potentially other drugs aren't effected, which I understand, but still want to get that sorted as soon as...

UPDATE - by the time i got home I had a call from Dr O, I had hoped it was with some info about hammersmith, but rather it was just to tell me that after review they want my to go back to 1 mg (from 1.5) of the hydroxycarbamide....

Rob :)