Need Help

well, maybe it's just your body adjusting to the meds. you must take them in the same time each day and, as you take tasigna, one hour after a meal and two hours before the other. your bcr-abl is not that high, the important thing to know is your phase of the illness: cronic, accelerated or blastic. try to calm down.

regards,

lucas

Hi,

We're really lucky insofar that even if one drug is not working well for us, there are other drugs on the market for CML which almost certainly would.

Hydrea (hydroxycarbamide) lowers you white blood counts by killing the cells, but not the underlying cause that is making too many of them. So I think it is perfectly normal for them to increase when you come off the hydrea, as the Tasigna (nilotinib) won't "kick in" immediately and the BCR-Abl is still present in your body and hasn't been killed by the hydrea.

You are right, BCR-Abl can be over 100%. For me, or was over 300%! The 10% at 3 months rule is a good marker, but not an absolute requirement. If we you were 16% at 3 months, but showing a steady decline I don't think there would be any concern. If you were 50%, then I guess it probably would - but others will know better than me.

NB: the 3 month marker is from the point you start taking the TKI, not the hydrea.

I'm also about the same age as you - I shared many of your thoughts and worries 18 months ago when diagnosed, but am in a much better place now. I didn't hit 10% at 3 months, and I had to change from one TKI to another. But I recently made it to MMR, and finding life can return something close to normal.

In terms of life expectancy, I don't plan on going anywhere soon and as long as I keep taking my TKIs I fully believe that I'll live out a normal life span.

David.

Hi Francis and welcome to this forum,

I agree with David on his thinking about why your wbc has increased very slightly when you stopped taking Hydrea and started your TKI (nilotinib).

HU only works on the peripheral blood cells and is used specifically in the first weeks after diagnosis to reduce high white cell counts. It does not have an effect on the cause of CML- that is the abnormal fusion gene known as BCR-ABL. So once it is stopped the Ph+ cells will still be in the majority as they are in continuous production. Nilotinib will already be targeting those 'switched on' cells and I am sure your cell count will begin to reflect that by your next blood test.

TKI therapies only target the cells with the BCR-ABL fusion gene (located on the Philadelphia chromosome) and block the signalling protein (Bcr-Abl) the product of the fusion gene.
By blocking this protein, which signals the cells to keep dividing and reproducing copies of themselves, the PH+ cells start to die off and their numbers will reduce to very low levels over the next 3 and 6 months.

Optimal responses are considered to be:
at 3 months from starting therapy, a complete haematological remission (no PH cells in your peripheral blood)
and
a major cytogenetic response shown by q-PCR testing to BCR-ABL at 10% or lower.

At 6 months a reduction of BCR-ABL (by q-PCR testing)to between 1% and 0.1% (MMR)or lower. By 12 months it is preferable to have reached MMR (0.1% BCR-ABL). But this is considered to be an optimal response and there are many patients who do not quite hit these milestones within the times shown above, but who nevertheless continue to respond well and go on to experience a more gradual reduction over a longer time period.

As David has said, there are several TKIs available and one of them will suit you as an individual. All the 2nd generation TKIs -including nilotinib- have proven to be extremely effective in getting newly diagnosed patients down to very low levels of positivity with the first months of therapy.

I am sure your doctor will reassure you on this. Meanwhile, try to be confident that you are responding well and you will see your wbc return to a lower figure - probably at your next blood test.

If you continue to take your TKI therapy as prescribed, you will continue to respond well and the cells with the BCR-ABL gene that remain in the marrow, will be reduced to such low levels that will be very little risk of CML causing you any problems for the future.
You have every chance of living a normal life-span.

I hope your doctor is willing to reassure you and answer all your questions. Where are you being treated?

I know it is hard, but try to relax and have confidence that your therapy will not only control CML but will allow you to lead a normal life.

By the way, your English is excellent.

Sandy

Hi, francis

I'm 32 too and i was dx last december. I had a complete hem. response fast, but i missed the "10% in 3 months" (i had 14,41% - i was in generic imatinib and now on glivec). you'll find a lot of people here that missed this milestone but is alive and very well. DR. Cortez, from MD Anderson, said that the "10% in 3 months" mark is not a great cut point and the long term outcome for those who didn't reach the mark is very good too. 87% will be alive in 8 years, i think (vs 94% of the people who got 10% or less in 3 months). But remember: the treatment acts different for everyperson. Try to do your part. the first and second months are pretty hard but it gets better.

Cheers,

Lucas

PS: i'm brazilian and your english is better than mine :p

Fortunately this forum and you exist to give me some strenght; it is really boring because I am somebody very impatient and in this illness we have always to wait after all these blood tests. Hope to see Bresil/France in world cup final.

I have generalized anxiety disorder. The hardest part about cml for me is the psychological part. I don't have any side effect (just itchy skin after shower). my Hgb is great, i don't feel nausea...but it's hard to keep my mind focused in my life and not on CML (life is bigger than this disease, man!!). i can say i much better now and i think less in cml and i don't think much about my lifespan, i just think how to have a better life now and don't get much stress.

You're in a great medication. i remember read that only 1% of the patients on tasigna progress to AP/BP in 5 years. We have to think that, in someway, we are the lucky ones. in 2002 there was only one TKI. Nowadays we have 5! There are a lot o new things to come too. medications to eliminated the residual disease, immunotherapy, etc.

I hope Brazil can win the world cup this time :D. i supposed you must be a juninho pernambucano fan. he's great!

Cramps are very common. it gets better too. You should look for a psychologist because be a fan of Brandão it's a crazy thing :p But, seriously, it's a good ideia to find a psychologist. i'm seeing one and it's helping me a lot. good luck!!

I had problems with imiatinib (bone pain, which wouldn't go away) so I switched to dasatinib. It's been working very well for me, and besides some muscular cramp which can be dealt with easily enough I get very little trouble from it. I am off to a yoga class (first one!) this morning to see if that it something I will enjoy which will help stretch me out a bit and help with the cramp. I think we all find ways to deal with the smaller side effects.

I often think I get more tired than I used to, more easily -- but perhaps that is just a normal part of life called "getting older" !!

I don't think I returned to a completely normal state of mind for quite some time. It took a long time to process in my head - perhaps even up to a year. But life is pretty normal now. You will find the same, in time.

Those who are getting cramps...

I drink a lot of tonic water. It has quinine in and it generally proves quite effective.

Hi Francis.. The first thing is to not worry

I have an email address for you. Barbara lives in Lyon to and is someone very good to talk to. Also a cml a patient. Please contact her by e-mail ...........

Barbara will be able to help you and someone good to talk to.

Hello Barbs; nice to meet you. I must see Franck Nicolini on June the third and have a blood test per week until this Rdv. i didn't expect that there were two people in Vienne and one in Givors who have cml; I feel less alone. It is really difficult for me to wait all these tests; I am afraid of the future and I really enjoy all the messages I receive from all of you in this forum. Sorry to describle my life because I was so bad on sunday some people I called friends before told me that my cml was due to my stress and was psychosomatic; I felt really guilty but I decided not to see them anymore. Now; thanks to you it is better. Thanks again from all of you. Barbs; I would be very pleased to chat on your mail.

Ps I'm also a football fanatic. I'm from Chasselay MDA foot ..... Who played Monaco

Hi Steven and Francis,

to protect Barbara from unwanted email traffic or spam, I have deleted the email address Steven's post and sent Francis the email address privately. This is an open site which is why we do not recommend putting private email addresses on here. I am very happy to put people in touch privately.

Sandy

Hello; yesterday I had to go to hospital because of quite big pain on my thorax. They haven't found anything but they did a blood test and my wbc were the same than the last week at 10500. Il feel desesperate because I don't understand why they don't decrease under 10000. Is it normal after 24 days of being treated by tasigna?

Hello.  I know your question was for David but In my experience I would not switch to anything after 3 months unless your PCR is not moving at all in which case I would quickly switch. 

I was at 23% after 3 months on Dasatinib which scared me (I though the nurse mispoke and meant to say 2.3%).  My doc said he wanted to wait for 6 month result which came in at 1.8%.  I have not switched.  Had another "bad" result after 12 months at 0.31% and my doc at the time wanted to switch me.  I got a second opinion (with my original oncologist) and he wanted to wait for next result.  My 16 month result was at 0.111%.  I'm praying of course to be well under 0.1% by 18 months but that is mostly for peace of mind because it is my understanding that there are people who have remained between 0.1-1.0% for years.  

My two worst results came at very bad/stressful times in my personal life so I think this was a contributing factor but I am not sure if anybody else has noticed that as they review their trends.