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Advice Please

Hi ..I would like some advice please.
I went to see my consultant yesterday
and he wants me to go on 800 ml of Glivec. My results from the last two Pcrs are 11 March ..hb 11.2 wbc 5.9 pl 244..bcr/abl 0.173

Yesterdays results..hb 10.5 ..wbc.4.8
pl 211..bcr/abl 0.308. I am concerned about side effects I am on 6oom ml now..my consultant has put me on reserve for 800..my body took a while to adjust to the 600ml...can anyone put my mind at rest please..and do you think from the latest results i should be on 800 now instead of waiting.. also should I be on any supplements to help me..and what ones if I do..thanks Linda

Linda, You may have seen from a recent post of mine that my PCR's had risen from a low of .139 to .208 to .431, and that consultant has put me up to 600mgs from 400mgs.
All the advice seems to be that you need at least 3 readings to show a trend in PCR's, rather than rely on just 2 readings. Even then if one is below a 2 log reduction, there still seems to be no universal agreement between specialists over how PCR increases should be responded to. Some say that if readings go up by double then a possible change of dose or therapy is needed, whilst others will only react to a 5 times increase. Accuracy in sample processing between labs seems to be a key factor. Your readings could just be a blip in the sample accuracy. I've alerted my specialist to the plasma monitoring info posted by Sandy (see April 11 newswire at side of page), and I'm awaiting the results as to how much imatinib my blood contains at the lowest point- just before taking the next dose. It may be worth suggesting this as an avenue for investigation if your next PCR reading is still on an upwards trend . Your other blood counts look fine ( have you read the section in FAQ's on this site re blood counts - it is a really informative read and indicates when action could be taken if counts do get too low. )
When is your next PCR?.
Andy

Hi Linda,
I agree with all that Andy has said and regarding pcr's rising it really does depend on the sample taken/lab testing it/whether it was contaminated etc etc. That is why, as Andy has said, you need to look at the trend of results rather than one or two. Most clinics recommend looking at 3.
the difference in your two results
0.308 minus 0.173 = 0.275 which is not a large rise. But maybe your doctor has other reasons to suggest an increase in dose. You really should ask him why he thinks you need it..... then suggest you have a 'plasma trough level' test which will show how much of the drug you consistantly have in your blood. The level should be at or just above 1000ng per ml which is the optimum level for Glivec to work well. Individual patients differ in the ways they absorb drugs and this is a reason for the differences in response/side effects etc. between individual patients.

Take a look at the EUTOS programme as Andy suggests (under the newswire section)and take the information to your doctor. He may be aware of this initiative already but it is worth asking for the test before your dose is increased. It is free.

try not to worry too much, your levels are pretty low and you really should wait for another pcr result.

best wishes,
Sandy

First

Y A H O O O !!! Y I P P E E E !!!

Number 1191 in the Zero Club

Zavie

Now

The difference between your two PCR resuts is not clinically significant to warrant a change in treatment. The PCR test itself could have a margin of error that is greater than 0.135 which is the difference between your PCR results (not 0.275).

Because you have achieved CCR, I don't see any urgency in trying to lower your PCR result by increasing your dose, especially if it will affect your Quality Of Life.

In a recent telecast, Dr. Druker pointed out that if a patient maintains CCR for a couple of years, there is virtually no chance that they will relapse to AP or Blast Crisis. (http://lls.hipcast.com/deluge/074596e8-877d-7241-1780-3247db8a3727.mp3.)

My advice would be to either get a second opinion or find a doctor who prescribes to Dr. Druker's approach in treating CML. Take the time to listen to the broadcast, especially the Q and A part.

Zavie

Zavie Miller (age 70)
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 Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb/07
3.5 log reduction Jan/08
3.6 log reduction Apr/08
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204
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