Please help us understanding this test results

Hi,

I understand this is a really stressful time. Everything is hard to understand at first, but it will make more sense over time. But the thing you need to know most right now is that the prospect for your mother living your normal lifespan really is excellent.

Your mother has PH+ CML. This is a disease that 15-20 years ago had a very poor prognosis, but not has been revolutionised. Imatinib, the drug that your mother is taking, revolutionised the treatment of this disease and turned it from one that only a few people survived over 3-5 years into a disease that doesn't shorten the expected lifespan for the vast majority of patients. Truly amazing. Imatinib is however, a drug for life for most people (although there are a few cases where this isn't true) so your mum is likely to have to take it, or a similar drug, for the rest of her life. So even if she has difficult side effects with imatinib (some people do) there are other drugs on the market now that do the same thing.

Spleen size, blast cells and other things inform the stage that the disease is in. It's good that your mother is in the chronic (first) phase, as this is the time the disease is easiest to treat. Patients in the accelerated and blast crisis states have poorer prospects, but still can be treated. The fact that she came up as Ph+ is actually good, since that's the type that most of us have and is the most commonly treated. It is possible to have Ph- CML, but it is rarer. Like me, she had a very high white blood cell count, and the hydroxyurea (also called hydroxycarbamide) helps cut down down the white blood cells sharply. This doesn't combat the disease, but sort of 'mops up' some from the high count she had. She won't keep on taking that drugs, it's just at the start. The imatinib will stop them climbing to really high levels again as it starts to almost eliminate the disease from the body.

She's taking 4 imatinib a day - are these all at the same time? Do you know the dose, because usually people would take 1 x 400mg pill a day, not 4 x 100mg, as far as I know. Gleevec, the brand name for imatinib, comes only in 100mg and 400mg pills.

Also, has she been given allopurinol or another anti-gout medication? With the massive breakdown of cells in her body at the moment, as the medication starts to kill off the bad ones, lots of urea crystals can form which can give her painful joints. Allopurinol and other drugs help stop this.

Which hospital is she being treated in?

Feel free to come back with as many questions as you have - you'll find people on this board will be really knowledgeable!

I'm glad you found us.

David.

PS. The FAQ and videos on this web site are great (see the links on the left side of the page) for explaining what CML is, and how imatinib works. I'd recommend looking through a few.

Dear Shafagh

I can't answer all your questions, but perhaps I can just say that, like me, your mother will probably have to take imatinib for the rest of her life. Imatinib is a very good drug. I have been taking it for nearly 4 years now, and feel very well almost all the time. I have a blood test every few months, and the results get better each time, though quite slowly. Someone told me that this is a marathon, not a sprint race!

It is very likely that she will be OK, though there are a few things that may bother her. She will probably feel tired more easily, and she may get some other side effects such as leg cramps or puffy eyelids. These get less annoying over time.

You asked whether there would be better treatment in another country - I don't think so, it sounds as if her doctor is very good. I hope you will go on asking questions, there is a lot to learn about CML, but you don't need to know it all at once.

Please try not to worry too much about your mother, and I hope she feels a bit better soon

Olivia

Hi again Shafagh,

To answer your specific questions, see my responses below:

> How long will she use this drugs?

For the rest of her life, most likely.

> Will my mother be ok with this treatment method?

Imatinib is a very successful drug, and if your mother has responded well to it (like your Doctor said) then it is an excellent drug, and has many years of clinical data to back it up.

> Is there a better treatment method in other countries that we can take her?

There are other similar drugs - dasatinib and nilotinob are two others which are sometime used as 'front line" therapy. There is lots of debate as to whether they are truly better than imatinib over the long term, and there are clinical studies looking at this right now. However, the preliminary results so far say that there is not a lot to choose between them so in reality there is not a treatment option available in other countries that would be significantly better. Imatinib is an excellent treatment, no matter where you are in the world. If your mother lived in the UK, she would be given the same medication.

> Is PCR test equal with blast percent that we saw at my mother's bone morrow test result (wich was 1%)?

No - PCR is quite different. This is where things can get confusing at first. The blast cells is a totally different measurement from a PCR test, which measures BCR-ABL. As the imatinib works, the blast cells in her blood will reduce and it is not one of the key measurements you will get to know.

There are two ways that we measure CML - one is what is called a "cytogenetic test" (usually known as a FISH test) which is a count of cells in your bone marrow (as a percent) that have the Ph+ gene. Even when this shows zero cells, the scientists know that the disease has not totally been eliminated. This is when the another test - the PCR test - is very useful as it is much more sensitive.

An PCR test is a simple blood test that measures the number of Ph+ CML cells in your blood (not bone marrow). It is an important test to perform because it is very sensitive. It can detect 1 Ph+ CML cell out of 100,000 cells, so it can detect very low numbers of remaining Ph+ CML cells. The result you get from this is usually a percent figure, which is different and should not be directly compared as a percent to the result of the cytogenetic test. Basically, the aim is to get this number below 0.1% in about 12-18 months or so - but some people take longer, or shorter than this. After this, it's good to get the number as low as possible - people often get it to 0.01%, or even lower.

You said your mother had a 80% result from her bone marrow test. This sounds like a cytogenetic test - so 8 out of 10 cells in her bone marrow had the Ph+ gene. That might sound high, but lots of us had 100% at the beginning, so don't be alarmed. As time goes on, you will find that PCR tests are done often (just from blood), and the cytogenetic tests from the bone marrow are not frequent (which is good, as they are much more painful than a blood test!).

> Will my mothers Ph+ be negative?

Imatinib effectively 'kills' the Ph+ cells in your mothers bone marrow, but it is hard to get every single one. This is why she probably needs to continue taking imatinib for the rest of her life - if there are even a few cells left over, they would start to multiply again if imatinib was not taken. So, right now your mother has a mix of cells which are Ph+ and some which are not. Over time, as the medicine works, most of those Ph+ cells will be killed off but a few will probably remain.

PH+ cells produce the BCR-ABL protein, and this is what the PCR test measures. In time, when things have settled down, this will be the number you will track the most.

A couple of things you might want to ask her doctor the next time you see them:

- What was the result of the cytogenetic test on her bone marrow? This is the FISH test, and I think it's the one you already got that was 80%.
- Was a PCR test carried out, and if so what was the result? (The result of this might be given as a percent or possible as a number called a "log drop", both are the same thing just expressed differently).

NB: The answer to both those questions might be a percent figure - they are unlikely to be the same, and that is OK! They are just different measures, so just not comparable.

David.

Hi david.
Thanks for your complete answers.
I'm reading about CML entire the websites and books and researches in these 16 days and this website was very helpful for me understanding my mothers disease. I'm very happy to meet you and people like my mom that are treated on the same disease and hearing their experiences about side effects and other problems that we may face.
Her Doctor told us that she will have a PCR test after 3 months.
It seems like that we don't have any choice and have to wait and see the results and hope them to be good.
One other question that I didn't find its answer entire the web site is:
By taking HYDROXYUREA (in first days of treatment) and imatinib for 4 or 5 days, In addition White Blood Cells, other components of her blood (like RGB, HCT, HGB and PLT) were a little lower than the normal ranges that seems to be the main factor of her tiredness.
Will Those components increase over time?
best wishes
Shafagh

Hi and thanks Olivia.
luckily, we didn't see any side effects other than tiredness and sometimes feeling a pain on her kidneys in these 6 days that she's using imatinib.
can we consult with you about side effects you faced and the way you overcame them?
Thanks a lot
Shafagh

Hi.
Thank you Olivia for information you are giving us.
Today my mother was good. Suddenly she felt a very bad cramp on her left leg and after 1,2 minutes on both her legs. She was crying. We all scared a lot. Now I have 2 more questions:
1. How long This leg cramps will continue? (How many weeks after starting to use imatinib?)
2.How can we reduce this cramps?
Shafagh

Hi Shafagh

Sorry to hear about your mother's cramp. I, too, suffered with this badly, especially in my neck, but for me the cramps have got better over the past 3 years.

When I went to a CML patients' conference back in 2011 a fellow CMLer who was also a doctor and suffered from bad cramps on Imatininb recommended taking Quinine tablets whenever cramp struck. This is the same component as tonic water as Olivia suggests, but the tablets contain more quinine and work much faster. They are safe to take with Imatinib.

Also, make sure mum drinks LOTS of water both with her medication and during the day and doesn't eat grapefruit or drink grapefruit juice as grapefruit reacts with Imatinib.

Perhaps you could all view the cramps as a sign that the medication is working for Mum?? I know they are very, very painful, but I always found thinking it was the medication doing its work helped me.

Best wishes to you all. Here's hoping that the cramps ease soon.
Chrissie

Hi Olivia.
Thank you so much.
My mother didn't have any cramps to day and only she told me she's feeling a little pain on top of her left leg and she has a little edema on there. (where she had a cramp and pain yesterday).
Olivia? I have some questions for you again.
will these edema happen again for my mother wherever she had cramp?
Which phase was your CML when it diagnosed?
And when was it? (I mean how many years?)
Are you using just imatinib whole this years?
Thanks again
Shafagh