39 replies to this topic

[random]

Just wanna say some updates about my friend: after doc gave him twice dosage of Gleveec, his chromosome is now below 10%, so he must be responsive to Gleveec I belive.

So he hasn't switched to other drug.

[hannibellemo]

Glad to hear it, random. Please keep us posted on your friend's progress. I assume that is on the basis of a FISH? When his FISH is zero most doctors switch to monitoring log reductions by PCR. Just another little guideline to help you monitor your friend's response.

Good luck.

Pat

[Susan61]

HI:  To me from what I am reading, and not knowing what everyone else knows with regard to how your friend should be progressing or doses being taken.

He needs a new doctor for sure.  You do not play around with the dosing the way this doctor is. The 400mg is your basic dose of Gleevec.  It does not sound to me like the Gleevec is working as it should for him.  You did not mention if he is seeing a CML Specialist who treats CML on a regular basis.  Sometimes people go see a Oncologist who is not up on all the latest treatments etc.

   This doctor has been playing around long enough with constantly changing his dose, and yet your friend is still showing a high percentage of Leukemia Cells.  Tell your friend to take copies of all his records, and go get a second opinion for his own peace of mind as well as proper care to treat his CML.

He also needs a BMB again.  That is great that you are looking out for your friends treatment.  Push him to go get that second opinion.

This is just my opinion.  Do not let him wait until he is in the accelerated phase.

Susan

[Susan61]

I did not check the dates on these posts.  I just read that your friend is doing better.  I still think he should keep an eye on what is going on , and how fast he is getting and holding the right response to his Gleevec.  If there are any changes again, then get that second opinion.

Susan

[random]

Guys,

Havin' some updates. After switching from 200mg to 400mg my friend has the leukocytes below normal value and the chromosome value is 7%. Looks like Gleveec is doing its job. I wonder if he will reach 0% for the chromosome.

Guys, Trey, what do you think? Is 7% a resonable value?

[valiantchong]

Hi  Random,

The current practice is 400mg at the start of medication and need to achieve CCR (0%) within 12 months not 5 yrs.

I guess you need to advise your friend to change oncologist, you could check the milestone practices from ELN (European Leukemia Network) recommendation. www.leukemia-net.org

I guess he is pretty lucky able to hang on the suboptimal response for so long and be reponsive again.

Definitely need to be monitored closely may be mutation test is needed. If cytogenetic results does not showed any translocation than t(9,22) or other weird stuff trisomy. Most probably he be fine. I guess he should consider second generation drugs Sprycel or Tasigna.

What he needs now is to get him to reach CCR or MMR as soon as posible.

[random]

Thank you, valiantchong. I will reconsider the strategy. My first question would be, if he will continue to the same drug with the current results, what risks could be?

[valiantchong]

The risk is progression to more advance stage.

But hope that he be fine, but only time could tell.  Since his PCR reduced from 100% to 7% now, within a few months, I guess he is responsive to the treatment.

However he still need to archieve CCR within a year, and only second generation drugs could provide faster response than the first generation TKI Gleevec.

If there is any reason he could not access second generation drugs, which I think he should. He could stay with Gleevec but be will need to be monitored closely and achieve CCR as soon as possible. Do not wait, may be he should get a CML specialist for treatment. I think the doc he is now with is not a CML specialist. Pls check the ELN standard treatment milestone.

[Trey]

Random,

The 7% FISH is certainly better than the 90% from 6 months ago, so he is heading in the right direction again.  So the normal dosage of Gleevec seems to work OK for him.  But 7% needs to be driven down further.

Your friend needs to keep taking a high enough dosage of Gleevec or switch to another drug which might work even better.  Most of us live with low WBCs, so that is not a big issue unless they get extremely low.

I do not agree with V-Chongs assessments and inputs here.  Your friend does not show any sign of mutation or drug failure.  He just needs to take a high enough dosage drug, whether Gleevec or switch to another.  Your friend would probably have a better and faster response to another drug, either Tasigna or Sprycel.

[random]

Thanks, Trey. So Gleevec sounds fine for now? What would you do?

[Trey]

If it were me, I would switch to Tasigna or Sprycel, and would prefer Sprycel.

[random]

valiantchong you're right, the actual doctor isn't a CML specialist. I'm gonna search for a specialist. What keyword should I use?

[valiantchong]

Well, I do not know where are u from, if you are in US, there are lots of good CML oncologist around. I am not from US or UK so I could not recommend you. May be you could ask other people in this board. Since CML only affecting 1-2 people out of 100,000 people it is not easy to find a good CML doctor.

Actually I think your friend is responsive with 400 mg Gleevec. The main goal is to be CCR within a year and PCRU within 18 months. However the % of people achieving this is not that great with Gleevec. Hence it is better to move to second generation TKIs if possible.

Pls keep us posted on the progress, I wish your friend the best and may he be achieved the milestone as soon as possible.

[valiantchong]

You could check under http://www.cmleukemia.com/ this website under CML Expert tab for further recommendation. Hope this help... good luck

[random]

Guys,

Tryin' to keep you up to date:

The actual WBC values are 2.3 (I guess in fact it's 2.3 * 10^3).

FISH is 2%.

PLT 115.

Currently 400mg of Gleveec.

[random]

Just FYI - my friend is doing fine with Gleevec 400g daily - the current Philadelphia Chromosome value is ZERO. Some previous results showed ZERO also.

Great! :-)

[hannibellemo]

random,

Glad to hear it! Of course, I can't say that without asking a question. Is that FISH zero or PCR zero? They are completely different! FISH is good as that means your friend has achieved Complete Cytogenic Remission. PCR zero is great because that means your friend has achieved Complete Molecular Response.

Pat

[random]

Thanks Pat,

To be honest I don't have the paper results yet, however when I'll received them I'll post them.

Just wanted to update because I think every patient evolution may help others as well.

God with you all!

[random]

Doctor mentioned "Cytogenetic result", so I wonder whether it's FISH or PCR ?

[hannibellemo]

That means he has reached complete cytogenetic response.  I mislead you, that can be measured with both. At Mayo, my only experience, they generally don't start PCR testing until we have reached zero by FISH. However, on the International Scale by PCR 1% is considered CCyR and .1% is MMR (a major molecular response). Thanks for letting us know.

Pat