35 replies to this topic

[Trey]

Jennifer,

If you lowered the dosage from 800mg to 400mg and then the PCR went from 0 to 4.0%, then you either need to increase the Gleevec dosage again back to 800mg.  If the other drugs were an option for you (you indicated they are not) you should switch to another drug now.

[Trey]

mabdou,

PCR and FISH numbers do not directly match.  It is like mixing apples and oranges -- two different things.  FISH is an actual percentage of leukemic cells in the blood, but PCR is not.   A 10% PCR from one lab might be the same as a 1% PCR from another lab, but all FISH results are equal and interchangeable. 

[mabdou2005]

Hi trey

Today i had a new CBC test after 13 day on 600mg G the Wbc become 11000 insted of 23900 and plt is 370000 insted of 4280000

My Onc refuse to start with 800mg of G

This 2 weeks i try to stop any food or drug interact with  G  and it was first time to me to learn from this site  that there is a food or drug can interact with G

I stop all as follow

1- pomegranates which i used to eat or dink juice every day with a huge quantity becouse i like it very much

2- all kind of citrus fruit

3- green tea

4- drug atorvastatin

5-ibuprofen

6-celebrex

   

Are you think trey that all this was effect in efficient of G becouse the way to sprycel or tasigna is closed again i missunderstand it price it is 1000$ per week not per month

Appreciate your input and happy new year and merry christmas

 

M abdo

[Trey]

It is probably just the increased dosage of Gleevec that is showing this positive effect.  But you should probably stick with the changes you have made, at least for a while.  Will be interested in your next FISH or PCR result. 

[jessw333]

Hello all, I am in the same exact situation. I have been on the Gleevec for almost ten years. I played with fire though and didnt take it as directed. Now I am not reacting as I use to. I may have to up my dosage to 800 instead of 400. I hope that works!

Are the side effects way worse? I might take 400 morning / 400 night.

Good luck to you!

[mabdou2005]

Hi jessw

For me ther is no any different between 400 and 600 mg of g the side effect is the same but for you the right choise if G is not working good you has to switch to srycel or tasigna  and this is the right way for me it was impossibal  i hope you can switch drug

Happy new year and merry christmas

M abdo

[GerryL]

Hi mabdou,

Just a note on you stopping your atorvastatin -

I had to stop taking mine due to the liver storing it up, so my doctor recommended I try taking Psyllium Husk instead. I just got my latest Cholesterol blood test results and I am now in the normal range (it took around six months).

Not sure where you are from but you should be able to get Psyllium Husk either from your supermarket or a health food store. Just make sure you take it away from the time you take your medication as it can prevent the stomach absorbing your tablets. I take two teaspoons in a glass of water, followed by another glass of water.

[mabdou2005]

Hi trey

Today i had anew cbc after one and half month on  600mg of G  today the WBC is 7000 and the PLT is 400000 is that mean that i have no resistan to g ? And  is this mean the the PCR is going down or i don't match?

M abdou

[CallMeLucky]

This looks like good news to me.  Your white blood counts and your platelets are back in normal range.  It would appear the 600mg Gleevec is working.  Probably too early to see anything on a PCR, but remember that there are three treatment milestones we look for.  The first is the Complete Hematological Response (CHR), which signifies blood counts have returned to normal range.  Next step is Complete Cytogenetic Response (CCyR) when the PH+ chromosome no longer shows up in a bone marrow cytogenetic test and/or FISH test.  Then the Major Molecular Response (MMR) which is demonstrated by a 3 log reduction in PCR.

It looks like you are at CHR - congratulations, that is a very good sign showing the drug is working.  Your next goal, and the most important one, is to get CCyR.  That is the milestone that has driven a good long term prognosis.  It looks like you are well on your way.  Be sure to keep taking your meds and over the next 3-6 months things should hopefully continue to improve.

All the best......

[mabdou2005]

Hi lucky

Thank's alot for your favor in explanining the step of recovery i tray many time befor  to understand  but now i can

BS

M abdou

[markmendonca]

call tasgina they help me. my copayment was $2900.00 i called and filled out paper work and i pay $33 mail order. here is the number 1-866-972-8313 good luck , Mark

[Trey]

Mabdou,

The results look very good, so the 600mg seems to help you.  The FISH will tell the real story of progress, but this is good news. 

[mabdou2005]

Hi Trey

Last week i had  new CBC and PCR  the result of cbc was Wbc  5000 and plt 320000 iwas very happy and  i expect thal i will have a negative PCR  but unfortunalety it increase to 23% instead of 10%  i go to the doctor and he till me tasigna will be avilalabel in medical insurance during 3-6 month and he till me to keep stay on 600 mmg of G till i make anew PCR after 3 month he refuse to increase the dose to 800 becouse it is not allawed in insuranse

Now i don't know how it is danger to stay 3 or 6 month in this situation ?

How is the wbc is decreased to 5000 instead of 23000 and PCR increase from 10% to 23%

Befor i have the last bcr i am was in avery good health but now iam very depressed

Appreciate your input

M abdo

[Trey]

Your blood counts are good, so you should be able to wait for the Tasigna to become available.  The PCR is not so accurate at the higher levels.  You are not in "danger" based on this information, but a switch to Tasigna is a good idea when it becomes available.

[mabdou2005]

Appreciate your high response Tery  if i make  Fish  test after one month it can help or not ?

Thank's a lot

M abdo

[reedmary3]

my mom was in the same situation, I think she was on Gleevec (sp?) for almost eight years. It started not working for her so she upped the dosage and I think that helped....Good luck!