Living with CML - Chronic myeloid leukaemia

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

Just spotted a new CML blogging

Me, CML and everything else

Hello Philadelphian

Rob

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

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

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

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

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

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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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

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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

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