My Leukaemia is up by 50%

So may a little red-top over the top use of statistics here…

I went for my 3 monthly visit to the Hammersmith yesterday in all the snow and stuff and got my latest PCR (well from back in October) and it has risen to 0.129 which can be read as an increase of over 50% from the previous 0.08 number or just a modest increase of 0.049. Either way the doctors where not concerned as my numbers have been low for some time now, as you see by the table below.

Date PCR
June 2007 4.4
September 2007 4.0
December 2007 1.07
March 2008 0.49
May 2008 0.41
July 2008 0.319
October 2008 0.1
January 2009 0.2
April 2009 0.13
July 2009 0.08
October 2009 0.129

 

remember lies dam lies and statistics….

Rob

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I’ve made it to 40

Today is my 40th Birthday.

Which I must admit at times over the last 3+ years I didn’t think I would. Especially after that first meeting with the GP who told me I had 1-3 years to live as I had CML just over 3 years ago.  Of course what he didn’t know was the wonderful drug Gleevec/Imatinib that has taken me down from over 70% to just 0.08% of CML infected (is that right term?) blood cells going through my veins.

It has been an up and down journey but I am just happy to have reach this milestone in relatively good health with a wonderful family and friends who have supported me through all the good and bad times.

Cheers

Rob

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PCR update down to 0.08%

Things have been so busy that I had forgotten to update the the blog on my last visit to the Hammersmith a couple of weeks back.

Well the really good news is that my PCR is down to 0.08%  which is almost at the target or 0.07% which would give me what is called a MMR (Major Molecular Response) or for those more mathematically minded a 3 log reduction from my original counts.

Major molecular response (MMR) which is when there has been a 3 log or more reduction in BCR-ABL transcripts from PCR compared to diagnosis values (1000-fold reduction). Complete molecular response is when no BCR-ABL transcripts are detected by PCR.” – http://www.cmlsupport.org.uk/?q=pcrresults

So that really is a good thing, and my lowest counts since diagnosis nearly 3 years ago.  Maybe next time around I will get down to 0.07 As to what is the goal after that well I guess it is to have less that one in a million or 0.0000001%.

As recently I feel fine fit and healthy and live goes on.

Below is a picture of a 4 year old boy and (one of) his recent birthday cakes.

 

At diagnosis I was not sure I would see that day as so much was going through your head so i treasure every moment like this so much more and feel so happy to share all these little milestones.

Rob

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Finding Key To Cancer Drug Gleevec’s Limitations

So Gleevec is to most of us CML patients a wonder drug that helps us get on with our lives, but not for everyone.  It does not cure the cancer however gives most of us a prolonged life, but for some patients it doesn’t stop the disease.  However this article is quite interesting Finding Key To Cancer Drug Gleevec’s Limitations as it states for most who stop Gleevec (not all however) the CML comes back.

Until imatinib was introduced in 2001, people with CML faced a grim prognosis, with few surviving five years after diagnosis unless they received bone marrow transplants. Imatinib has reversed that prospect, allowing 95 percent of people with CML to survive five years.

Yet it soon became clear that the disease almost always returns without maintenance treatments of imatinib. Imatinib treatment cures the disease in at best 5 percent of cases. Maintenance treatments are a concern, because the drug can cause side effects such as extreme fatigue, nausea, diarrhea and muscle pain. These force 15 percent of cancer patients to stop taking imatinib; some then undergo bone marrow transplants, the only treatment known to cure CML

Ross says that the study findings point to a new goal in CML treatment: to find ways to make imatinib specifically kill the leukemia-initiating cells that at present remain unaffected by the drug.”

Rob

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Quick update on PCR and stuff

Things have been very busy at work and home the last couple of weeks so I have been unable to put up my latest results from my recent trip to the Hammersmith.  Good news is that my PCR is now down to 0.13, so not quite its lowest ever level (0.1) but pretty close.  And quite a relief following the previous results which had shown an increase for the first time.  Was reasonably painless and quick this time and was out of the hospital before 12

We discussed various issues including Swine flue and Chicken pox (as Felix was just diagnosed that day) and really nothing to worry about.  However I mentioned the exercise issues again and was recommended to drink some milk before exercise and also eat some potassium rich fruit such as bananas.  So have been trying that and so far so good.

I spend less and less time these days trawling the web for info and worrying about the Leukaemia and hope to one day forgoet about it altogether.

Thats it really

rob

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PCR up for the first time ever

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

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Enhancing Effects Of Drug Used To Treat Chronic Myeloid Leukemia

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

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