35 replies to this topic

[mabdou2005]

Hi all frined

Today i had a new CBC to check if the WBC go down than last month which it was 13900 but unfortunately it go up 23510 and also PLT go up to 428000 insted of 279000 last month also basophilis 4%insted of 0% also absolute neutophilia with left shift up to 2%promyelocytes  i go directaly to my Onc which he order a PCR test

Iask him if  we increas the does of G to 600 iinsted of 400 mg but he till me we have to wait the result of PCR after one week i ask him about sprycell and tasgina he told me the arrived egypt but not in the health insurance and with a very high price more than all my salary and the will not be in healh insurance for free befor many years

Iam very depressed that G is not working good the only hope i have now if 600mmg of G can work or this is a dream?

[Judy2]

I am so sorry about your news. Is there a way for you to get your medicine free from Novartis or Bristol-Myers or do they just have that option for U.S. citizens?

Judy

[mabdou2005]

I dont think so in my country becouse we had G free in 2007 after 5 year with ahigh price

[Trey]

There would be a better chance that increased dosage might work if you go to 800mg.  The increase to 600mg does not seem enough to overcome the issues you currently have. 

[mabdou2005]

Hi tery

I think you now my history from begining is that a accselatered phase

( no blast cell in all last cbc ) or it is kind of resistant to G ? 

If i start in sprycel for 3 or 4 month than go back to G can it work again?

Is that issue is the end of the game?

thanks for reply

M abdo

[Trey]

It would be better to switch to Sprycel if it were available to you.  Your response to Gleevec so far does not appear to be acceptable.  If you have become resistant to Gleevec, it is very likely that it will never work for you again.  Some types of low level resistance can be overcome by increased dosage.  So it is possible that 800mg would work.  The only way to know is to try it. 

[valiantchong]

Hi M addo,

If I were you, I will increase the dose first to 800mg rather than wait for the PCR results and see. Either way you do not have a better choice, since second gen TKIs, Sprycel or Tasigna is not available for you now.... You could start earlier rather than wait for your PCR results, then again, do get the opinion from your doctor. Some doctor will include Hydroxyurea and Interferon alfa together to bring the WBC down, but than again, why wait ?

[mabdou2005]

Hi tery hi valiantchong

I am just have a good news tody i call the customer service in novartis co they  inform me that i can take tasigna with a reduced price about 1000$ insted of 4000$ with apatient assistance program with this price i can buy it  but i have to prepar areport from my onc with all test

Saturday i will have the New PCR and go to my ONC to see what  he will decide but any way now i have ahope yestrday icant sleep all the night from thinking  i hope tasigna can solve the problem better than 800 of G

Thanks for all frinds advice me

M abdo

[valiantchong]

Good to hear that... All the best to you on Tasigna... Hope for the best.....Do monitor your EKG for any heart beat prolongation on Tasigna as it is a known side effect...

Take care...

[pammartin]

Good luck and take care.  I wish you the best on Tasigna.

Blessings

[random]

Hi M abdo,

I'm glad that you find this option. Tasigna seems stronger than G, so I wish you all the best also.

Please keep us up to date.

[Vilarinho]

Dear mabdou2005.  I've just read your news and hope that you will soon have good results from the new medication.  I was put on 400mg Gleevec in 2005 when first diagnosed after almost a year the dosage was raised to 600mg and in 2008 my PCR was 0.  It has remained at 0 until May of this year when the PCR was 2 and then in August 4.  My Gleevec dose has been raised to 800 for the past two weeks and on the 27th December I'll have another FISH test to see if the 800 mg is having any effect.  It seems that raising the dosage of Gleevec is worth a try, as apparently it has been effective in some cases.  I hope that whatever happens you will get the medication you need at a cost that you can afford.  Again, I wish you well and hope to hear good news from you soon.  Vilarinho

[tiouki]

Hi madbou, good to hear you can get Tasigna, it is very likely that it will work on your gleevec-resistant CML

Also if cost is really a problem maybe you can talk to your onc about taking a reduced dosage that should work well also.

Good luck take care

Pierre

[Sneezy12]

Jennifer, this seems to be unusual after over 4 years of treatment. Were the PCR values 2.0and 4.0 or was there a decimal in front? Frank

[Vilarinho]

Thank you  Frank for your response.  Apparently this is very unusual but not impossible, my oncologist actually accused me of not taking the Gleevec because I might have thought that I didn't need it anymore.  He did say that in most cases like this it was attributed to the patient not taking the Gleevec as prescribed.    The reports were a 2 and 4, no decimal in front.  The FISH test two weeks ago showed only 0.4% and this is the first time it showed up.  I'm very interested to hear if anyone has been in this position and had the increased Gleevec reduce the PCR again.  My oncologist said that if this increase didn't work we would try something else, I'm not sure what.  I'm actually afraid that I might not get a chance to get one of the other drugs as I'm now 68 and where I live they don't start a patient on these expensive drugs after age 65.  We shall see.  Thanks again, I do so appreciate your imput. JJ

[valiantchong]

Base on your fish result of 0.4% you are still in CCR or 0% of Ph+. However FISH is not sensitive enough to measure response lower than CCR, you will need your PCR results to compare your historical PCR trend.

You state that your PCR results 2 and 4, were it 2% and 4% ? If your FISH reults is 0.4% your PCR should be in 1 decimal place to the left or 1 log. Theoreticaly should.not be more than 1%.

[mabdou2005]

Thanks all frined

I am just have the PCR result Now from the lab site it is 10% positive  bcr/abl genrearrangement by Real time PCR  is this mean that if i increase the dose of G to 600 or 800 mmg it can work becouse 1000$ is alot of maney in egypt but if i have to do i will do

Appreciate your input

M abdo

[Trey]

Because of your situation, it would be reasonable to try increased dosage Gleevec for a couple months then have another PCR.  I would highly suggest going to 800mg Gleevec instead of 600mg since the 400mg does not seem to be working very well.

[Vilarinho]

I receive the results from my PCR test three months after the blood is drawn.  For some reason the May test wasn't available to the oncologist when I went in for the August appointment. I don't know when the results from the PCR test taken two weeks ago will be available.  The oncologist didn't put a % mark next to the written results he gave me.  The FISH test just showed the increase for the first time two weeks ago and from what I gather this is a normal progression.  I'm afraid that I don't understand your query of my results and wonder if somehow I'm not understanding how significant these tests are after all.

[mabdou2005]

Trey is 10%positve pcr is better than 50% positve fish also is this mean thal 90% of blood cell is good and 10% is leuckimc cell

I will go to my onc satuerday and i will feed back

Appreciate your input

M abdo