You are here

Newly Diagnosed !!

Categories:

I am Imran 30 Years old male diagnosed with CML 4 months ago. I am on 100mg dasatinib per day. after 4 months I am in complete cytogenic response.

but medicine is very expensive almost out of the reach. is there any alternative?

Thanks all..

 

Imran

Hi Imran,

Where do you live? It makes a big difference to the cost.

I was talking to my doctor recently about how costs to treat CML patients could be reduced, and one idea we spoke about was to "hit it hard" with dasatinib, ponatinib or one of the newer and faster acting TKIs. Once the disease is reduced to a lower level, switch to generic imatinib to maintain the disease in a lower state.

In some countries, generic imatinib is available so perhaps that would be an option for you when your CML is fully under control?

David.

Thanks David!

It's so nice of you that you replied that quick. I am from Pakistan but temporarily living in Saudi Arabia for a project. Fortunately I was working with a government institution here and I am getting the treatment free of cost. I am getting dasatinib for free here. may be after two years I will have to leave this country and move back to my homeland. Even if I get another job here I cannot get free medicine as it's free only for the Govt employees and the nationals. almost after how much time I can move to Imatinib? as imatinib generics are available in india and I hope I may get from there as I have some friends in India. But I don't how long I can live here without my family. I can't bring my family here due to agreement restrictions. So after all I have to move back. The only question in my mind is that after how long I may go back to my country and switch to Imatinib.

 

Thanks a lot.

Best regards,

Imran Abbas

As I cannot attach the medical report he is the exact text of my medical Report

================================================================

Patient Name: Imran Abbas (30Y, Male, Married)

Diagnosis: CML

This 30 years old Pakistani gentleman who was not known to have any chronic illness before, presented on 7th of August 2015 with easy fatigability for 1 month.

His lab investigations revealed high WBS (156) with peripheral blood film suggested for CML, BMA and Biopsy were done and diagnosis was confirmed to be CML, Chronic Phase.

He was started on Dasatinib on 9th of August with reqular follow up. His CBC revealed gradual improvement of the WBS and his last clinic visit on 17th of December , He was in complete cytogenic response.

He will continue on Dasatinib 100mg PO, OD with monthly follow upof CBC and will repeat BCR-ABL after 3 months for evaluation of response.

 

Dr. M Azfar

Consultant Medical Oncologist

PPFC-Buraidah Al-Qassim

================================================================

Hi Imran,

Thanks for the information. That's really helpful.

There's no particular required timetable for a potential switch to imatinib, if that was much more economically effective for you. People switch all the time, and most people still start off taking imatinib from diagnosis. There's every likelihood you would respond very well to it, as you seem to be doing so with dasatinib.

You haven't posted you BCR-Abl PCR result, which is something you might have got in a test result. It's expressed as a percentage. Complete Cytogenetic Response is usually about 1% on the International Standard (IS) PCR scale, I think. Once you get to 0.1% (i.e. a tenth of what you might be currently at) you are in what we call "major molecular response" and that is generally considered a "safe haven".

If I were you, I would want to get my PCR down well below 0.1% before I attempted a switch to another TKI such as imatinib for economic reasons. Get yourself well, then try the switch. You are very likely to achieve this well within two years so I think you are in a very good position and will have plenty of options. Some people achieve MMR very quickly, it takes longer for others.

I believe generic dasatinib may be available in India. It's certainly advertised, but I know the manufacturer of it is involved in legal proceedings there.

If any of that is confusing, which it might be because it's quite technical please let me know and I can explain in more detail.

David.

Thanks a lot dear for your guidance. I will ask about the test results and share here. About that percentage thing. Generic dasatinib was available but banned after some legal problems.

Anyway now I am feeling much relax that it will be easy to switch to imatinib when I will achieve some certain level of response. one more question is is 100m Dasatinib is equal to 100mg of imatinib or there is a difference? 

 

Thank you very much and warm regards.

Imran

Hi Imran,

As you know the normal dose for dasatinib is 100mg but for imatinib it is 400mg. 

David 

Thank you very much. I appreciate your cooperation. Thank you.

 

Good Day! 

Dear David I finished my BCR-ABL test a week ago and doctor told me that your BCR-ABL PCR is 2%. Is this ok or not? it was done after using Dasatinib 100mg for 7 months. And doctor told me that you will be all fine after a few more months. your comments please :)

Hi again,

I think 2% after 7 months is not bad at all! After a similar time post-diagnosis, I was 4%. Even a year after diagnosis I was at 1%.

I just got my latest result a few days ago (3 years after the 4% result) which was 0.008%. A record low for me.

So whilst you will certainly want to see a reduction from 2% in future, you're in a good place right now. The most important thing really is the trend that your results going lower over time and ideally get you to at least MMR, which is 0.1% or below.

So in short, you're doing just fine! Keep us updated with how you are getting on.

David.

 

Thank You!

I appreciate your detailed information. Pardon me for my late replies :)

I will for sure update you about my latest results whenever it happens.

Wish you best of luck and a health and happy life.

Thanks