Living with CML - Chronic myeloid leukaemia

latest PCR

Thu, 14 Aug 2008 11:17:04 GMT

Well back from my regular trip to the Hammersmith to see Dr M, latest on the PCR is 0.41 down from 3 months ago of 0.49 (not the 0.4 I might have said). I was a little concerned that it had only gone down by 20%, but Dr M didn’t seem to worried when I quizzed him, and the fact that it was still going down well coupled with all my other CBC counts being OK and my good tolerance to the Imatinib was an OK thing.

Also it was the end of my 3 month trial and had some extra tests including an ECG and an echocardiogram as well as a sight test that I think I did quite well with.

Besides that not much to say on a personal note, except go off on holidays to Cley in Norfolk tomorrow

Rob

Technorati Tags: PCR, CML, Imatinib

New CML Blogger, Philadelphian

Wed, 16 Jul 2008 12:14:21 GMT

Just spotted a new CML blogging

Me, CML and everything else

Hello Philadelphian

Rob

Technorati Tags: CML, Leukaemia

Math Could Help Cure Leukeamia

Fri, 20 Jun 2008 08:11:03 GMT

This is a really interesting article

“In a recent study that combined math and medicine, researchers have shown that patients with chronic myelogenous leukemia (CML) may be cured of the disease with an optimally timed cancer vaccine, where the timing is determined based on their own immune response.”

Math Could Help Cure Leukemia

"Our results suggest that it is not only the drug that sends the leukemia into remission, it's also the natural immune response," Levy said. "After starting imatinib, the anti-leukemia immune response gradually increases. However, it begins to weaken after it reaches a peak. This typically happens well into the treatment."

Not sure my O level maths would be up to the job!

Rob

Technorati Tags: Leukeamia, CML

a trip to the hospital but nothing to do with the CML

Fri, 13 Jun 2008 13:23:54 GMT

Well actually my 3rd trip in 7 days, as last week I managed to break my nose by not catching a ball during a softball, they are not very soft!!! There was lots of blood, swelling and bruising, which has gone down a lot. Today was a quick meeting with an ENT specialist to check me over and to book in for having it properly straightened, a week after next. So will back again then, when I will be put under general anaesthetic and my nose put back to (or as close as possible) to its previous shape.

Being a regular now with hospitals, I just grab a coffee and take a book to read while I wait at the various waiting rooms. You have to have patience (no pun intended) with the NHS…

Rob

Couple of interesting CML links

Mon, 02 Jun 2008 11:37:14 GMT

Combination Of Two Novel Anti-cancer Agents May Help Fight CML Resistant To Current Therapy

'“Our findings suggest it may be possible to develop a clinical regimen combining a third-generation Bcr/Abl kinase and aurora kinase inhibitor, such as MK-0457, with histone deacetylase inhibitors, such as vorinostat," Grant said."’

and

Leukemia Stem Cells Identified

‘"One of the main challenges in cancer biology is to identify cancer stem cells and define the molecular and genetic events required for transforming normal cells into cancer stem cells," said Wu, who also is a researcher at UCLA's Jonsson Comprehensive Cancer Center and senior author of the Nature study. "With this study, we've been able to do that in one type of leukemia."’

Rob

Technorati Tags: CML, Leukaemia

Latest PCR 0.4

Wed, 21 May 2008 16:15:02 GMT

Well just back from the Hammersmith for my regular 3 monthly check in and the good news is that my PCR (from my previous samples in March) is down to 0.4, from the previous 1.07. This is great news and basically means that everything is going extremely well and should hopefully continue to do so for the future as well :)

It also means that I have archived a Complete cytogenetic response or CCR for short, which means that I have archived the 2nd stage of remission with CML (see the end of this FAQ for more info).

Also gave about 15 bottles of blood for the clinical trial i mentioned earlier as well as answered numerous forms about side effects and my current mental state and outlook on life....

So a good trip with good numbers :)

Rob

Technorati tags: CCR, Leukaemia, CML

Quick personal update

Fri, 25 Apr 2008 13:07:22 GMT

Been a while since I have written anything on this blog. Well in truth there hasn’t been much to tell, life goes on, I take my tablet every day, I don’t have any side effects (except the general tiredness).

Today was a quick check in with Dr H at the RBHS, all counts still in the normal range and largely uneventful trip except for the fact that I could get 3 months of Imatinib at one time, instead of the monthly amount I get. This is because I have agreed to be part of a clinical study…

Long Term Therapy With Imatinib: Development of Late Side Effects and Compliance to Treatment

This won’t have any effect on me directly, I still take my drugs in the normal way, just that they can see how often I am taking it and what that means to the way my body is reacting to the drugs. Some extra tests will be carried out at the start and the end of the 3 month trial, but shouldn’t really effect me at all. I was more than happy to volunteer.

Tonight we are all going away for a night down to the south coast, staying at the cottage at the Crab & Lobster, and then going to watch the racing cars at the Goodwood

Rob

Technorati Tags: CML, Leukaemia, Imatinib

Hello Rio.

Mon, 31 Mar 2008 09:37:08 GMT

Just a quick Hello to Rio Williams who has started a journal over on Caringbridge

Rio Williams at CaringBridge..

You will have to enter you email address to get access.

Keep up the journal Rio as I am sure we will want to keep up to date with your progress

Rob

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Growing Old and Grey Gracefully.

Wed, 26 Mar 2008 14:44:10 GMT

So no Just For Men for me then :)

'A second review of the evidence on personal use of hair dyes found some studies suggesting a possible association with bladder cancer and with lymphoma and leukaemia.'

Hair dyes found to increase cancer risk

however the report does also states

"But the panel found that the evidence was inadequate and concluded that personal use of hair dyes was “not classifiable as to its carcinogenicity to humans".

Rob

Technorati Tags: leukaemia

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Dragon Boating in Wales...

Wed, 26 Mar 2008 12:24:33 GMT

on odd title for a blog on leukaemia but I spotted this today

"A CHARITY that helps leukaemia patients find bone marrow donors is holding a day of sponsored dragon boat racing to raise funds for their work.

The Anthony Nolan Trust is putting on the event on June 8 at Atlantic Wharf, Cardiff. No experience is needed to take part and anyone wishing to enter a team in the race should ring 01202 600629 or e-mail sharon.wells@anthonynolan.org.uk"

Race needs you - icWales

So if you are interested in doing a spot of dragon boating and you are in Wales (or indeed happy to go to Cardiff) then follow the info above.

And if you can't make the Cardiff event there are a host of other Dragon Boat events for the Anthony Nolan Trust around the country, plus other fund raising activities

Rob

Technorati Tags: Anthony Nolan Trust

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More news expected about SGX393 this week

Wed, 26 Mar 2008 09:32:52 GMT

A while ago I blogged about a new CML drug called SGX393 well it looks like there should be some official research published this week sometime according to a number of sources such as the one below

New approach to help control drug resistance in leukemia

"“The effectiveness and safety of Gleevec for most patients remains remarkable,” said Deininger. “However, it is important for patients to know that, with the addition of a drug such as SGX393 to the set of current approved CML drugs, we may have the therapeutic tools to achieve and maintain even more effective and longer control of their cancer. This is not equivalent to a cure, but it could potentially represent an important advance in the management of CML.”-Oregon Health & Science University"

as soon as I spot the official announcements I will pop up some links

Rob :)

Technorati Tags: SGX393, CML, Leukaemia

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Count your white blood counts using a mobile phone

Wed, 19 Mar 2008 11:18:28 GMT

Wouldn't it be great if you didn't have to always go to the hospital to have your blood checked, well maybe in the future you won't have to and it can be done via yuur mobile phone and a 60x microscope attachment...

'It was designed by researchers at the University of California, Berkeley to provide a cheap, reliable way for doctors to diagnose patients in remote areas over the phone.'

OhGizmo! » Archive » Cell Phone Microsocope Can Diagnose Your Parasites

Rob

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Philadelphia - Great Sandwiches Shitty Chromosones

Mon, 17 Mar 2008 12:17:51 GMT

I have just ordered one of these t-shirts from Mikes Cafepress store www.cafepress.com/8232

Thanks to Rob who posted it on his blog :)

Some other nice little items on his store so check it out, should take a couple of weeks to arrive

IMO having a healthy sense of humour about this battle with CML helps me cope with just getting on with life in general.

Rob

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2 out of 200

Fri, 29 Feb 2008 14:27:04 GMT

That is the result from the latest FISH test (Fluorescent in situ hybridization) which I received today from my trip to the Royal Berks. Which means out of 200 cells tested only 2 are Leukaemia cells...this is pretty much in line with the 1.07 PCR (Polymerase chain reaction) test which looks for a lower level of the disease. That to me is a good sign as both tests are showing a very similar value and one isn't widely different.

Talked a little about the research mentioned earlier and the need for 3 months Imatinib at one time on my next visit, and Dr H is going to talk to the pill counters to see if that can be agreed.

Not much else, just trying to get everything sorted for my Seattle trip leaving on Sunday...

Rob

Technorati Tags: CML, Leukaemia, PCR, FISH

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Genetic Cancer Link Between Humans And Dogs Discovered

Fri, 29 Feb 2008 14:03:48 GMT

Well I don't have a dog, never had one, not really an animal person so to speak...

But apparently we share more with our canine friends than you might at first think, especially CML wise!

"Cancer researchers at the University of Minnesota and North Carolina State University have found that humans and dogs share more than friendship and companionship -- they also share the same genetic basis for certain types of cancer. Furthermore, the researchers say that because of the way the genomes have evolved, getting cancer may be inevitable for some humans and dogs."

"More specifically, Breen and Modiano found that the genetic changes that occur in dogs diagnosed with certain cancers of the blood and bone marrow, including chronic myelogenous leukemia (CML), Burkitt's lymphoma (BL), and chronic lymphocytic leukemia (CLL), are virtually identical to genetic abnormalities in humans diagnosed with the same cancers."

Genetic Cancer Link Between Humans And Dogs Discovered

University of Minnesota (2008, February 28). Genetic Cancer Link Between Humans And Dogs Discovered. ScienceDaily. Retrieved February 29, 2008, from http://www.sciencedaily.com /releases/2008/02/080228112011.htm

Rob - Woof Woof

Technorati Tags: CML, Cancer

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PCR down to 1.07

Wed, 27 Feb 2008 21:26:50 GMT

...so not quite the 1.00 (2 log reduction) that I was looking for, still good news, still going down, still the other blood counts all within normal range. This BTW was based on the last test from my recent bone marrow sample.

This time things went quite smoothly at the Hammersmith, in and out with 1:15 mins, unlike last time where I was sat around for a couple of hours.

Talking with Dr M 3 main things came up, besides the PCR number...

1. Looks like they want to do some research about how people react to Imatinib, so I have some stuff to read up on. Pretty sure I will volunteer as it won't put me out too much and if it leads to a better understandings then fine. Biggest issue is that on my next visit I have to bring 3 months supply of Imatinib and the Royal Berks only give me 1 month at a time.

2. Although it now looks unlikely i will need a stem cell transplant, I met up with a nice lady who I gave my sisters details to , again. So hopefully that will now happen

3. We also discussed fathering a child whilst on Imatinib. It seems the advice has changed to that of, there is no evidence of any problems and the limited research points to no problems. However that doesn't give any guarantees. So that is wonderful news andone that Sarah and I will have to talk about in more detail.

Rob

Technorati Tags: CML, Leukaemia, Imatinib

Busy Busy Busy

Mon, 25 Feb 2008 17:11:40 GMT

Well how time flies, I have been so very busy at home and work that the blogging has dwindled over the last few weeks.

I accepted a new role in the company I work for, which I am really super excited about however they are sending me over to the US (Seattle) for 2 weeks to meet the new team and get some intense training... fly out Sunday so it has been a bit of a mad rush getting everything in order with my old role as well as trying to work out what my new one is going to be like.

So with that in mind I have been trying to get a lot of time with Sarah and Felix at the weekends and evenings, which has left me very tired.

Added to that I have a trip to the Hammersmith on Wednesday to check up on status etc, will get my results from the last visit, and then on Friday a check in at the Royal Berks and a new prescription. I am hoping the downward trend in numbers is continuing and I am under the 1% value in the PCR tests.

Rob

Writing Helps Cancer Patients

Mon, 25 Feb 2008 16:58:10 GMT

I know this blog has really helped me in dealing with the whole leukaemia situation but now a study says that writing can help people with cancer and make an improvement to there lives...

'A new oncology study suggests a single twenty-minute writing session may help change the way cancer patients think and feel about their disease and have a positive impact on an individual’s quality of life.'

George Town University Article

Rob

Technorati Tags: blogging

Strong bones and bent needles

Tue, 05 Feb 2008 19:30:40 GMT

Today I had another bone aspirate, where some of the liquid is taken out of the bones to do some test to see how well the Imatinib is doing.

Suffice to say it was a lot better experience that the last time I did this 6 months ago.. but it couldn't have been much worse. I mentioned to the Dr about the problems form last time and I think I may have got an extra shot of aesthetic...it took 2 attempts this time to get enough out, the first attempt resulted in a bent needle due to my 'strong bones'...there was a couple of stabs of pain but nothing to compare with 6 months ago. That I can live with

So a lot less discomfort afterwards as well, plus a lot more mobility.

Rob

Technorati Tags: CML, Leukaemia

''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

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Blog list: Leukaemia Blogs

Wed, 16 Jul 2008 12:26:29 GMT

Leukaemia Blogs

James - Strength Today
Matts - CML Diary
Annies - Living With CML
A mothers perspective of having a child with CML.
David's Journey with CML
Jon's CML Diary
Life With Cancer (Erins Story)
Glamour Editor and mum to be
Geoff Thomas
Ex England International and Ex CML patient. Now raising money via his foundation.
Skip Duffie
29 years and counting
Becky
Beckys Blog...
King David (the Wicked)
Seth - Surviving Leukemia
Seth expereinces of AML
Adrian - (Baldy Blog)
Adrians - CML & AML at the same time!
Glen - My Pinnacle
Arts CML Updates
Berties Blog
triumphs and successes of Leukaemia Care's fundraising
Dr Razak
CML Patient and Orthapeadic Surgeon from Malaysia
Kermit Hops The World
A stuffed frogs perspective...
ChipChat
Chip VanAlsburg’s Personal Weblog
My Leukemia (CML) Blog (That sounds inviting, no?)
Rob Van Daleen CML blog
Boxing with CML
Rhonda Radliff's blog about boxing with CML
Rio Wiliams
Caringbridge site for Rio (aged 14)
Philadelphian
...about hope, happiness and everything!