Hello to you all
Last Wednesday saw us at Hammersmith again, as always PCR results are 6 weeks old, as were the blood results due in main to abscense of technician to process bloods, same again this time !. Still interestingly, Hb remains the same, wbc and nfls are increased as are platlets (but not by much) The 6 week old results showed at last a pcr of 1,(log 2) which I am told is the best yet, so very happy as downward spiral has been maintained. Another interesting fact is that I am no longer feeling cold, which is a problem that has plagued me since starting with all of the many and varied medications for cml. Has anyone else noticed this at all, or is it just me ?. After 5 years of Glivec at low doses, and only getting as far as 80% Ph-ve, and 1 year of Dasatinib at 50mg daily, we are at the amazing point. Talk is now of a slight increase in doseage to maybe 70mg provided platlets hold out. No dibilitating side effects from the drug,(wish I could have said that in 1996) anyway, even if there were, the alternative does not bear thinking of.
Do have fun and always keep smiling
Keith
You are here
PCR on 20th February
Y A H O O O !!! Y I P P E E E !!!
Number 1158 in the Zero Club
Zavie
Hi Keith,
Your message is not clear and I'm assuming that you have a 2 log reduction (which corresponds to CCR) and gets you into the Zero Club.
Your next goal will be to get to a 3 log reduction.
Waiting 6 weeks to get the results of a diagnostic test is simply not acceptable. Any treatment change that might be indicated by the test results comes a month late.
Zavie
Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, K2G 3X3
dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in the Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.2 log reduction Jun/07
3.6 log reduction Sep/07
3.5 log reduction Feb/08
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
Yahoo ID: zaviem
YM: zaviemiller
Skype: Zavie Miller
pre CML i never really felt the cold too much, was that type who could go out in short sleeve shirt in minus temps and not worry, however now I feel the cold very much and wrap up warm, it could also be old age I suppose...
however my wife complains of me having cold feet, which she says I have never had in the 10+ years we have been together
Similarly, my wife used to be the cold one. Now she notices that I am cold, particularly cold hands (she doesn't often feel my feet!). I do need to wrap up warmer in cold weather. Interestingly, I suspect that I also feel the heat, so it is probably the temperature regulation system that is out of kilter.
Very pleased for you Keith, & hope your results get better and better. I too feel the cold much more than I used to before I had CML. I thought it was only during the ill periods, but I still feel cold generally. I am next at the Hammersmith on the 30th April. Couldn't make the Support Group meeting.
Best wishes,
Phil.
Hi Keith,
Congratulations on your results. I too have a 6 week wait for PCR test results. I am treated at West Cumberland Hospital but samples have to go to Newcastle for processing which apparently slows things down. I gave another armful this morning and I am hoping that on April 7th I will also have achieved a 2 log reduction.
All the best
Colin
Thank you all for your kind comments. I am told that my cold feet are the stuff of legend, perhaps I have got used to it ? Hands also tend to be on the frozen side, but also I now do not notice them so much, Carole does though.
The delay was caused by an necessary technician not being available in the Leukaemia Centre at Hammersmith, to 'drive' the blood analysing machine, so all bloods had to go to main lab, and as always they go to bottom of the pile.
Thank you for explaining the mystique of pcr and log values, I am not so scientific as you all are, just a worn out old cowboy !, but still winning prizes in fast draw competions, but that is another story.
Have fun and keep smiling
Keith (1158)
There must be something in this coldness business,there are just too many of us reporting it,just to say we are getting old is the easy option to explain it. Has there been any study of it? As far as I can tell it's just brushed aside. Yesterday I could not keep warm no matter what I did, I felt cold to the very core,heating up high,even took to wearing a coat and bodywarmer, and that was indoors. I have been monetering my temperature, and yesterday it was 34.4 at it's lowest.Today I am much warmer, and it's back up to 35.9. Ive always said my thermostat is on the blink.
Keep putting on the layers,
regards,Les.
I also feel the cold really bad since starting on Glivec for CML. (Dx May 2007).
Sometimes I am ages wearing my coat in the house when I get home from being out. Esp feel the cold in my feet.
Also (as another of you posted), I can suddenly get hot and take ages to cool down. I work in a hospital and the ward is always very warm (winter and summer). I can be boiling hot at work (particularly if we are having a stressful shift) and am then wishing for the cold flushes to reappear.
Still, I'm not writing to complain because Glivec has brought my PCR down to 0.38 (Feb 12th result). I am just mentioning the dodgy temperature control so readers can see a theme.
Love to you all
Jeannette