Living with CML - Chronic myeloid leukaemia

Yesterday I went for my 3 month check in with the Doctors at the Hammersmith hospital on a very sunny and warm day in London.

Main news is that my PCR numbers (basically the number of cells with Leukeamia) is up from last visits 0.1% to 0.2%  which was a bit of a worry as it was the first time the numbers hadn’t gone down. You could read this as one of 2 ways, either it as a 100% increase or it has gone up by the small amount of 0.1%.  Anyway Dr M said he wasn’t overtly concerned at this time as the numbers are still low and it could have been just a blip.  I guess we will find out on my next visit, if it has gone up again then maybe time to get a little more concerned.

Also I mentioned I was getting a lot of pins and needles in my left arm whilst running in the gym after about 25 minutes so he sent me for an ECG to have my heart tested. I left the results with him and he said he would call if there was anything to be worried about, which he hasn’t yet.  Although I did scan the notes and it said something along the lines of due to patient age/profile possible candidate for LVH   and reading up about LVH doesn’t sound too good.  Something else to consider as I have read that Gleevec can have side effects on the heart although uncommon.  I feel fit and healthy although a recent blood pressure test at the gym put it towards the higher end of the acceptable ranges, and it is only on the running machine I have problems.  Maybe i should stop running

That was it really, but a quick hello to the chap I met with AML in the blood room.

Rob

Quick update from me, well err life goes on really, take my tablet once a day etc  however Sunday had one of those CML days where I needed an extra 2 hour sleep during the day…next up is a trip to the Hammersmith in a couple of weeks.

But in the mean time spotted this article

Enhancing Effects Of Drug Used To Treat Chronic Myeloid Leukemia

“The therapeutic effects of the blockbuster leukemia drug imatinib may be enhanced when given along with a drug that inhibits a cell process called autophagy, researchers from the Kimmel Cancer Center at Jefferson Reported’

Autophagy is a process that allows cells to adapt to environmental stresses, and enables drug-treated CML cells to escape cell death. Imatinib is a tyrosine kinase inhibitor that suppresses proliferation and induces death of the malignant cells that cause CML. However, additional effects of the drug have not been studied in detail, according to Dr. Calabretta’

Rob

From the BBC

BBC NEWS | Health | Cell find 'lifts leukaemia fight'

although related to AML an not CML thsi article from the BBC is interesting  and ‘…sheds light on how blood cancer cells work may improve the power of leukaemia treatments.’

‘The study, published in the journal Cell Stem Cell, might one day reduce the chances of leukaemia returning after treatment, say experts.’

Rob

Last week I had my 3 monthly check in with the Hammersmith hospital to see how things where going.  Well the really good news is that my PCR i snow down to 0.1, wonderful news down from 0.319 in November. 

In the past 0.1 to me was seen as the holy grail of CML treatment and to get to it meant a 3 log reduction and something called MMR (major molecular response), but in talking with Dr M he told me the target was actually now 0.07  which to be honest I wasn’t to upset about.  The fact it (the counts) are still going down with very little impact to my daily life is a great feeling.

I asked the question on the cmlsupport forums about my confusion and got the following answers

‘I asked Prof Apperley [the Prof at Hammersmith] about the numbers for the magic 3 log reduction at the CMLsupport conference in London last November. She confirmed that the target is 0.07 at Hammersmith.

With regard to the 100% PH+ at diagnosis, yes you probably were, I think most of us were very close to that figure. But I'm not sure that you can directly correlate that 100% PH+ to a starting point of 100% for a PCR reading....other more scientific brains than mine will be able to explain it far better than I am able to! :-) I do know that the PCR figure can be higher than 100% at diagnosis if there are additional chromosomal abnormalities present.’

So with retrospect it means that 0.07 is now the target and maybe I was 100% at diagnosis or maybe 70% at diagnosis.  It doesn’t really matter of course they are just numbers, it is what you do with your life that makes them count.  and on such a topic I have included some recent pictures of Felix, Sarah and myself in the recent uk snowy conditions

Rob

Well it is 2009 and not much to say on the CML front, life goes on and the CML is not effecting much at all.  Take my tablet once a day and keep the CML away… Have my 3 monthly appointment on the 28th Jan, and as ever hoping for that 0.1 PCR that will give me the major molecular response that all CML’s look for.

One think is a quick pointer to Michael Polson caring bridge site that he has just set up at http://www.caringbridge.org/visit/michaelpolson who is just about to go through stem cell transplant on the 19th Jan, so good luck :)  I have added this link to the list as well.

Rob

I had almost forgotten that 2 years ago to the day I was diagnosed with CML, and I was hit with that metaphorical train….

So much has changed, yet so much has stayed the same.

I still have Leukaemia, yet 2 years ago 100% of my blood had the bad stuff, yet now thanks to the drugs (Gleevec) only 0.319 of 1 percent have the markers.  Which is great yet still not quite to that 3 log reduction (0.1) and MMR (Major Molecular Response) that all CML sufferers seek.

2 years ago I was probably not even  wondering if I would reach this date, and the thought of what life would be like so far down the road was something I could not even comprehend.

Life has changed so much, my outlook, priorities and view on events and people either small or big have been effected.  Yet some things stay the same as I mention and this is almost the hardest thing to comprehend sometimes, how can you have cancer yet live a normal life, well in some ways it is the best way to cope, at least in my opinion.

I have learnt so much in the last 2 years about stuff that I had no reason to understand in the past.  Made some new friends online, most that are still here, yet sadly some like Adrian and Seth are no longer here but there legacy continues.  I have changed jobs to a role I had always dreamed off (dream is maybe too theatrical) to and the blogging here really made it easier for me to start blogging as part of my job

Yet it is the silly little things that make it all come back to you, such as seeing Felix at his pre-school nativity play (if anyone remembers a cheetah in the more orthodox telling of the story can you let me know :) ) today makes me feel so lucky and alive.

So thank you to all my friends (either real, or virtual) and family that have been nothing but supportive of my over the last 2 years, without you all I am sure that even if I was here to type this I wouldn’t be in the current frame of mind.

Especially love to my darling wife Sarah and beautiful son Felix

Rob

Off to the Hammersmith tomorrow for a follow up to my jabs from last month but should be just for a few extra blood tests to see how my immune system coped (or didn't)

Anyway spotted a couple of new CML articles, that are both interesting and good news for all CMLers

Second-generation Chronic Myelogenous Leukemia Drugs Show Promise As Frontline Therapy

'Two drugs approved as fallback therapy for chronic myelogenous leukemia (CML) appear to outperform historical benchmarks of the frontline medication when used as a first treatment in separate clinical trials, researchers at The University of Texas M. D. Anderson Cancer Center reported at the 50th Annual Meeting of the American Hematological Society.'

'While both dasatinib and nilotinib have so far outperformed a 400mg daily dose of imatinib at all times, longer-term results are converging with those seen with an 800 mg daily dose of imatinib'

Why Gleevec-type Drugs Control, But Do Not Eradicate Leukemia

'Oregon Health & Science University Knight Cancer Institute researchers are closer to understanding why certain chronic myeloid leukemia mutations are not stopped by the revolutionary targeted cancer pill, Gleevec, or similar therapies in that drug family.'

"What we found is that only simultaneous inhibition of both proteins effectively suppresses leukemia cell growth, suggesting that the reason imatinib is so clinically successful may be due to its capacity to inhibit both the cancer-causing BCR-ABL and the complementary protein KIT," said Amie Corbin, OHSU Knight Cancer Institute senior research scientist.'

Rob

Just spotted this on the BBC web site BBC SPORT | Football | My Club | Torquay | Chris Todd fights back

Sounds like he had some luck getting a diagnosis and is quickly on Imatinib.

Good Luck Chris

Rob

Well last Wednesday I went to the Hammersmith and got my latest PCR numbers which are continuing to head southwards to .319 (down from .4 from the previous visit).  So this is good news and the Dr’s appear very happy about it, although we did discuss the possibility to do a blood harvest some time in the future as now my numbers are getting so good.

Also whilst there I volunteered for another test this time to see my reaction to getting a Flue jab and a type of pneumonia jab at the same time and see how my immune system would react/cope.  The actual injections where painless enough, however I then spent 2 days off ill with flu like symptoms (shivering, fever, fatigue) etc, also both arms ached, the flu side for 3 days and the other one for about a week which really spoilt my sleep patterns.  But feel fine now.

On slightly worse news, my sisters have finally received there results and one is a complete no match and the other only a partial match and not good enough.  So if I have to go down that route then they will be of no help.  Ho hum, any way I hope I never have to go that way.

Rob

Another potential use for the wonder drug Gleevec (Imatinib)

‘Researchers at the Indiana University School of Medicine report that the anti-cancer drug Gleevec holds out promise to become the first effective treatment for neurofibromatosis, a genetic disease that has resisted treatments until now.’

Gleevec Holds Potential As First Drug To Successfully Treat Neurofibromatosis, Scientists Report

On a personal note I had a regular trip to the RBH last week, all the blood tests where fine and picked up some new tablets.

Next week it is my 3 month trip to Hammersmith so will update after that

Rob