9 replies to this topic

[everonward]

On the 22nd Feb I had a PCR draw at my local hospital - it was dispatched to Kings (London) that evening. Called Kings for the result - they calim never to have received it. Off to hospital later to try again. So 3 anxious weeks af waiting for my numbers has now become 5-6 weeks.

Not a happy Marian

[CallMeLucky]

That really sucks, so sorry.

It baffles me how things like this happen.  I mean people's lives sometimes depend on the timely results of these tests and the hospital just loses them?  I know it happens, but still, not acceptable.

[PhilB]

Hi Marian,

I'm sorry you are being messed around so much and I know exactly how you must be feeling, although admittedly they usually only lose my paperwork rather than the blood itself.  Not much I can say to help, except that as medical screw ups go it could be worse:

http://www.dailytele...0-1111115837271

[everonward]

LOL

so you have had lost paperwork too. About a year into treatment Kings lost my entire file and had to open a new one. Still blood was dispatched yesterday and so hopefully results in 2 weeks time. I'm feeling quite fir and well at present. This probably has more to do with being able to get into the garden and starting seeds off in the greenhouse. Seeing the children (not that are are really any more) stress over their various exams also helps to but it in perpective - I know that if there is a rise it will be small and that there are other drugs. Daughter is relying on her performance on one single day to dictate the next 3-4 years of her life.

  Marian

[everonward]

Ok so after lost blood and a redraw I finally have my results. Now I should be happy as 5yrs 6 mths down the line I am stable - well blood wise Plus I have been MMR since August 2008 and most PCRs goes down - albeit by a tiny percentage, but I so wanted to see a zero in the hundreths as well as the tenths.

Note PCRs since Jan 2010 so you can see my irritation - 0.029, 0.032, 0.026, 0.021 and todays result 0.020

I'm loath to ask for a drug change as 1. Here in the UK I am unlikely to be granted it, as my results indicate a functional cure and 2. I have been on 400mg Glivec since dx and have very few side effects and my LFTs are always good - so I clearly tolerate the drug well.

Oh well at least it's not gone up.

Marian

[CallMeLucky]

Progress is good, lack of progression is better!

Sorry it is not as good as you want, but happy it is good.

Hope you are feeling well.

[everonward]

Thank you CallmeLucky

I am feeling well and I am happy with the result - I know that a maintained MMR is as good as a PCRU. I  know that few of us actually achieve PCRU. The most important thing is that I'm fit and well and that my CML has little impact on my life.

[GerryL]

Be patient Grasshopper - slowly. slowly catchee monkey or PCRU in your case.

Congratulations on another good result.

Gerry

[Trey]

If you want to try to jump start another downward move, ask your Onc about taking 600mg for a while, maybe just a short time, or even every other day.  Side effects might increase, however.

[everonward]

Hi trey

Funny you should suggest this as I am thinking about asking him in May when I see him next.

Marian