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Can any body help us please?

Hi every body again.
My mother is 53 years old and diagnosed with chronic myelogenous leukemia (ph+) in chronic phase about 5 weeks ago according to the bone marrow, genetic and CBC tests also splenomegaly.

Her CBC test results (28 August 2013) were as follows:
CBC: WBC 179.6 ---- RBC 3.41 ---- HGB 10.8 ---- HCT 31.7% ---- PLT 256
DIFF: NEUT 163.3 ---- LYMPH 5.88 ---- MONO 4.54 ---- EOS 2.87 ---- BASO 8.44 ---- LUC 2.97
Her doctor started treatment by administering Hydroxyurea (8 per day) to decrease WBC level.
(Side effects: Bone pain, Weakness, Felling tired)

Her CBC test results (7 September 2013) were as follows:
CBC: WBC 87.54 ---- RBC 3.54 ---- HGB 10.5 ---- HCT 34.9% ---- PLT 181
DIFF: NEUT 84.5 ---- LYMPH 10.3 ---- MONO 2.8 ---- EOS 1.6 ---- BASO 4.3 ---- LUC 0.7
Her doctor continued treatment by Hydroxyurea (6 per day) to decrease WBC level.
(Side effects: Bone pain, Weakness, Felling tired)

Her CBC test results (9 September 2013) were as follows:
CBC: WBC 31.01 ---- RBC 3.57 ---- HGB 11.0 ---- HCT 34.7% ---- PLT 150
DIFF: NEUT 79.9 ---- LYMPH 13.8 ---- MONO 3.2 ---- EOS 1.6 ---- BASO 5.9 ---- LUC 1.4
Her doctor changed treatment by administering Imatinib (2*200mg per day).
(Side effects: Weakness)

Her CBC test results (16 September 2013) were as follows:
CBC: WBC 4.28 ---- RBC 2.92 ---- HGB 9.3 ---- HCT 28.5% ---- PLT 117
DIFF: NEUT 26.3 ---- LYMPH 47.5 ---- MONO 13.7 ---- EOS 3.1 ---- BASO 5.5 ---- LUC 9.3
Her doctor continued treatment by administering Imatinib (2*200mg per day).
(Side effects: Muscle cramps (legs), Bone pain (legs), Edema (Hips), Weakness, Felling tired)

Her CBC test results (23 September 2013) were as follows:
CBC: WBC 4.10 ---- RBC 2.92 ---- HGB 9.2 ---- HCT 28.9% ---- PLT 166
DIFF: NEUT 50.1 ---- LYMPH 33.0 ---- MONO 11.0 ---- EOS 2.2 ---- BASO 3.8 ---- LUC 3.8
Her doctor continued treatment by administering Imatinib (2*200mg per day).
(Side effects: Very hard bone pain (legs), Can't walk, Nausea, Weakness, Felling tired)

Her CBC test results (5 October 2013) were as follows:
CBC: WBC 1.35 ---- RBC 2.67 ---- HGB 8.6 ---- HCT 27.0% ---- PLT 170
DIFF: NEUT 16.6 ---- LYMPH 45.0 ---- MONO 30.30 ---- EOS 1.9 ---- BASO 2.1 ---- LUC 4.0
Her doctor told her that her white blood cells and neutrophils level has become too low and it is very dangerous and she may take infection by these low WBC and NEUT levels (Neutropenia).

So he told her to do not take Imatinib for 2 days. Also he administered 3 ampoules (I think its name was zatziro) (1 per day for increasing WBC level to normal range) and Co-amoxy clav tablets (3 per day for facing with any infections she may take).
Also He told us that he didn't see any body with same response to Imatinib in last 2 years and it seems like that Imatinib is not working good -as it has to- for my mother and after increasing WBC and NEUT level, he may change (decrease) dose of Imatinib or switch to another drug.

Is there any body that faced with my mother's conditions before? (I mean Dropping on WBC and NEUT level in effect of using imatinib?)
If YES, How did he/she faced with that problem?

What will happen to my mother? We are all depressed. We love her very much. I want her to be ok but I don't know what will happen to her. Please help us...

Thanks
Shafagh

Hi Shafagh

I hope I can help you not to worry.

I am now 56, and was diagnosed over 6 years ago. Historically I had had a low WBC (average 2-2.5) for over 20 years before diagnosis. I moved home and changed doctors, and the new doctor wanted to establish a baseline for my WBC. We found it was increasing so I was referred to a haematologist and diagnosed Ph+ CML earlier than many, as your Mother seems to have been if her first WBC pre-treatment was around 180. Treatment was 400mg imatinib per day.

I responded fairly promptly to imatinib, and my WBC fell back to what was a normal level for me (2.5), with neutrophils at about 40-50% in about6 months. The doctor got worried and reduced my dose to 200mg/day, and my BCR-ABL% stalled at about 4%, and there was little improvement in my WBC. As I was having no issues with infection we went back up to 400mg, and I hit MMR about 18 months after diagnosis, and have been below 0.01% BCR-ABL now for 4 years.

The bone pain lasted 3-4 months for me, feeling tired I got through OK. Hot water bottles and wheat packs you heat up in the microwave helped with the bone pain.I've been back playing (fairly) competive tennis for over 4 years. My WBC is still around 2.2, neutrophils at about 50%. I carry a stock of broad spectrum antibiotics in case I need them, but haven't used any in over a year. My specialist regularly says she worries when she sees my WBC results, and then remembers its me and I'm fine.

My specialist and I now believe it was a mistake to reduce my imatinib dose to 200mg for that period, as it delayed my MMR and PCRU. There is no data to support 200mg being a therapeutic dose.

I have couple of questions your mother may want to ask. Is there in her records any WBC from the time before she was diagnosed? If she is like me and had a historically low WBC then I hope my case helps give you confidence. There are other cases on here where people's WBC have gone down low and recovered back to normal, and your mother may be one of them.

There is good data which says the faster you respond to imatinib the better the long term prognosis.My experience is that managing any issues with the low WBC while driving down the BCR-ABL is the way to go.

The other thing I would ask is where is your mother being seen. As she has had a possibly unusual response I think she probably needs to be referred to a regional centre of excellence where they see a lot of CML, and I wonder if that is the case. Don't be embarassed about asking this - she needs the best care she can get both in terms of medication, information and support, and that may not be available at the local general hospital.

I hope all this helps. There is a huge amount of experience in dealing with CML on this forum - we were all helped historically, and are glad to be able to help others.

Good luck to you and your Mother. The statistics are very heavily in her favour that she will do very well.

Alastair

Safagh

I agree with Alastair that you should not worry at this stage and give it a bit of time to settle down. It is really quite common for blood counts generally to drop below "normal" - to overshoot - when starting imatinib, and I noticed that your mother had only been on imatinib for about 3 weeks at the latest count. That is still very early. In most cases the blood counts recover back to normal after a bit of time.

In my own case, my white cell count dropped below 2 although I think my neutrophils stayed around 50%. My haemaglobin was also below normal. Looking at your mother's results, the WBC isn't too bad I think but the neutrophils do look a bit low, and her doctor wants those to recover.

In my case, the overshoot happened in the first three weeks or so. My doctors discussed giving me something to stimulate blood cell production (which is I think one of the two things your mother has been given) but as it happened, everything recovered back to normal after just over a month, and has stayed that way. I have also been "zero" bcr/abl by PCR for nearly 4 years.

The way I think of this is that the imatinib is killing off the cml Ph+ cells and since the bone marrow has, to start with anyway, comparatively few normal cells, it takes time for those to get production back to normal. But in time, they normally do and the imatinib just keeps the bad cml cells away.

Some people do have a bigger "overshoot" than others and may need to come off imatinib for a bit but I did notice that your mother's platelets seem to have recovered back to normal quickly. I can't say for sure but that is a good sign to me.

So, don't panic. I recall you live in Iran but your mother is seeing a specialist. Here, people are very closely monitored for the first 3 months or so while their blood counts settle down. As I say, most do so don't panic.

As for side effects, these are almost always worst in the early weeks and months, especially tiredness (low haemaglobin can be the cause of that and your mothers is low at the moment), bone pain and nausea. But over time it generally gets better. These are very early days still.

Keep us informed in case we can help more

Richard

Dear Shafagh,
I agree with what both Alistair and Richard have said. You should not panic or worry at all and given her white cells are low can be considered to show a good response to her treatment.

Neutrophils do recover after some weeks... if they continue to drop to say below .5 then she might do well to stop the drug for a week or so to enable them to recover. But this does indicate that the drug (imatinib) is working.

If you think her doctor would welcome some advice from other CML expert clinicaans then you might give him the link to the international CML foundation which was founded to help and support clinicians globally in the treatment of their CML patients. See link below.

I hope your mother continues to respond well,

Sandy

http://www.cml-foundation.org/index.php/ersap-dnt

Improving access to CML diagnostic testing and monitoring globally
Improving access to diagnostics is one of the most challenging issues to address on a large scale. Through small grants and partnerships with CML centres of excellence the ERSAP Diagnosis and Testing Program plans to enable centres in emerging regions to increase their local capacity to conduct diagnostic and long term monitoring of their CML patients. We hope that, for the first time in many cases, physicians will be able to locally confirm the diagnosis of CML patients, leading to better treatment and long term care. This has the potential to dramatically alter the lives of the patients and their families, in some cases whole communities.

iCMLf Programs

ERSAP Preceptorship Program - Enhancing clinical knowledge and skills in the treatment of CML through preceptorships at internationally renowned CML centres. This program is a unique opportunity for clinicians from emerging economic countries who treat CML to undertake an intensive educational program to develop and expand their CML management skills.

ERSAP Diagnosis and Testing Program - Through this program the iCMLf assists clinicians in emerging regions use objective testing to diagnose and monitor CML via FISH, cytogenetics, or PCR. Partnerships are established between CML doctors and centres in emerging regions and CML centres of excellence to develop diagnostic and monitoring services. Through this program the iCMLf will enhance facilities at a local level, building capacity to bring high quality testing to the patient.

iCMLf Virtual Education Program - A series of webcast presentations on the practical aspects of CML management. Innovative e-learning tutorials are provided as interactive webcasts on the iCMLf website as well as on USB flash drives for offline use. Leading hematologists provide lectures with updated information on treatment advances, including disease monitoring and new therapies.