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Hello!my name is Faidra, I am 35 year old and I diagnosed with cml in March during the lockdown in Greece.
I had no symptoms but I had only a strange pain in my chest and I did a usual blood check up. The results were ok only the number of wbc was 16. The bcrabl was positive (p210) and I am positive to ph+. I had no blasts, my spleen was 12.5 cm and my doctor said that I am a typical cml patient.
After that I started tasigna 800mg per day.I dont have serious side effects from the treatment except for hair loss.
I already had my new bcrabl, and it was 0.01%(mr4).Could you please tell me how important this is??
There many times that I get stressed and worry for this new situation, the succession of treatment etc.
Thank you
Faidra

Hi and welcome to our club of unfortunate fortunates.

Wow number 1 you’ve been caught very very early I had a wbc of 330 at diagnosis and you’re only just above the normal range of 4-11. Number 2 you have zero blasts that’s fantastic and 3 you’ve hit MMR very quickly and MMR4!!!. (Can’t say I am surprised with such low numbers). MMR is the gold standard of response. To put your results in perspective you’ve achieved in a few months what has taken me years to reach and I am still not MMR (very close but not hit yet)

Let it all sink in but you’re fine and going to be fine and this for you is a chronic condition that will require daily meds and one day maybe no meds but for now live your life as per normal. I too take tasigna and have few symptoms that are negligible for now.

You’re extremely lucky in an unlucky lottery.

All the best

Alex

Faidra,

Having a bcr-abl of 0.01% after only four months is outstandingly fantastic!

You caught your CML very early and you have responded to treatment exceedingly well. You are in a good place and since your bcr-abl is well below 0.1%, you have beaten this disease. I often tell people who ask me about their CML who have levels such as yours that they will die of something else, not CML. Focus on your overall health. Read as much as you can particularly articles concerning your immune system health. Stay informed on CML developments. It is possible you may become "undetected" for CML in the near future. When that happens, you can start a two-three year clock to attempt drug cessation and test for remission without drug.

Your ongoing challenges may be side effects (lowering dose over time is an option) which take time to develop in some cases.

 

Hi Faidra,

I am also in Greece, and a couple of other people in this forum. I was diagnosed last year, and we are roughly the same age, I m turning 34 next month. I'm also on tasigna, but on 600mg, it seems to me that your dosage might be a bit high, but I guess that's why you hit low numbers so fast.

You are doing EXTREMELY well as others already noted. 😊😊

Please don't hesitate to contact me via a personal message, we can connect, and we can exchange info on doctors, labs, etc! Don't be shy, it took me a while to. Find some people in Greece with the same condition, we can help each other out.

Regarding this forum: you will find no better source of info. These guys are great, they know what you are going through, and have valuable insight. Take your time to browse through the forum, you will quickly see you are one of the luckiest cases, and you will imediately feel better. 😊

Regards,
Koralia

Hello Faidra. I was also diagnosed during the month of March at 35 years old and put on Tasigna. The only difference is that I was prescribed 600mg per day. I am just here to echo what everyone has said. You are doing great!

Hey Faidra 

First of all congratulations for the MMR, you have it sooner than expected.I was expecting my third baby when I was diagnosed with CML, but luckily everything went well and here I am healthy and happy. All you need is a positive attitude. I am myself a Research scientist and I have done studies on CML before I got diagnosed with it.After the discovery of TKI’s CML is no longer considered a Cancer, rather a disorder, which is completely CURABLE not only treatable.So I think we all should thank God for that.

Stay Positive😊

Hi Alex,
Thanks for your reply.
My doctor said the same as you, that I found it very early and is optimistic for the treatment.
I wish you get MMR soon!!!
Best wishes
Faidra

Hello scuba,

Yes, I'm very lucky to have found it so early.
I should be optimistic but sometimes I am anxious and unsure to all these.
Best wishes
Faidra

You are in a good place.

Nshah,
Thank you very much for the answer.
It 's still too early and sometimes I'm pessimistic, worried, anxious. I read some articles about cml. I think the quick response to my treatment is very important. I wish all of us to do well.
Faidra

Nshah,
Thank you very much for the answer.
It 's still too early and sometimes I'm pessimistic, worried, anxious. I read some articles about cml. I think the quick response to my treatment is very important. I wish all of us to do well.
Faidra

Hi scuba,
when do you think it will be the right time to discuss with my doctor the dose reduction ?? after the next bcrabl in October ?? if it comes out too low ??is it too early??
Thank you
Faidra

Hi Faidra,

You have had an optimal response to TKi therapy, however, to stand any chance of a sustainable TFR (treatment free remission) you will need to plan - as Scuba has already said - for at least 2 or 3 years (some CML expert clinicians would prefer 4 to 5 years) showing a stable deep molecular remission. 

So yes, October would be far too early to attempt stopping therapy. You can of course have a discussion with your doctor about this, but the longer you stay in stable DMR the better the chances of success.

Sandy

 

Hi Sandy,
Thank you very much for your answer. Of course I do not mean stopping the treatment, but for reducing the dose to 600 mg since I take the maximum 800 mg per day. My doctor from the beginning talked to me about treatment for at least 5 years.
Thank you
Faidra

I think we are very lucky to have this amazing company here! I am also from Greece and I have been following this website for three years. Not everyone has helped much and thank you all! I would also like to meet people with the same problem from my country. I do not know how this can be done. How do you send a personal message? I do not know! So I will give you my email. [mod removed email] ... I will be happy to contact you! Thanks .... and good fight to all! Thomas

Tom,

You can use the private message function on this site to contact people on the site.

David.

Thank you David!

Hi to all!!!
I am going to reduce the dose of tasigna I am taking. From 800 to 600mg.
I just turned and completed five months of treatment.
The reason I do this is because I talked to four hematologists (two of them are cml experts) and they all told me that my initial dose is too large and unsuitable for my case and should be reduced immediately. My doctor did not want  to reduce it because it does not cause me serious problems.

Then after I told her that I talked to four doctors, she told me to wait for the result from the next bcr-abl (in October) and then we will decide. But I actually pushed her to reduce my dose and she will eventually reduce it.
Although it has to be done, I feel a little insecure.
My side effects are mainly on the skin (skin and hair loss).
Do you think that I pressed her correctly ??
Will these side effects be reduced?
Thank you
Faidra

Wow! congratulations,

I'm a man, very tall and I weigh 120kg and I'm on 800mg and responded to it after ten days (all my blood cells were  in normal range). 800mg is a very high dosage, you probably weigh two times less than me. The absorption varies for every patient but still. If you can reduce iI think you should do so, 600mg is the normal dosage. Your hapinness also matters, I'm sure you like your hair very much! Don't forget you'll be tested very often and if there's anything your dosage can be increased you're in no imminent danger. You're MR4 it usually takes years for people to get where you are. But again if you rather have the piece of mind don't. Me If I had the chance I would do it in a heartbeat. I'm guessing your doctor wanted to get you undetectable as quickly as possible, you should ask her why, I'm sure she did this for a reason. But to me there's a point of diminishing returns. What's the point of having a car that does 300mph when you already have a 200mph car and the speed limit is 50mph. If I get at your level I won''t care much if I'm MR4.5 or less. But we all have different confort levels right. Do what feels right for you.

I'm really happy for you!

Hi Faidra,

Tasigna:  first line treatment in newly diagnosed CML is 600mg (300mg twice daily).  I assume the doctor who prescribed 8oomg per day is not expert in CML and may have misunderstood the management of newly diagnosed patients. It is a very good thing that you managed to speak with other expert doctors and took their advice. Hopefully you will see your side effects (skin and hair) reduce once you reduct your dose to the correct one. 

Tasigna at 800mg daily is used for second line therapy- i.e another TKI has not been effective enough or there has been intolerable side effects. 

Your response is very quick and is optimal but I am sure it would have been the same at 600mg daily, as you obviously have responsive disease. Have confidence and if you can, try to change your treatment to a CML expert.

Sandy

Sandy and Zaccar thank you very much for your replies.

I will seriously consider changing the doctor. Tomorrow I will start my new dose and I hope and wish that everything goes well !!In October i have the next pcr.

Thanks!!!

Faidra