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CLL Support Association
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Treatment for cll stage 4 with 17p deletion for 63 year old women?

Hello my mother diagnosed with cll stage 4 with 17p deletion in December 2017. She is taking chlorambucil. But in the blood test lymphocytes are increased. Physician said her survival is only 1 year. I'm much worried. She also recommended ibrutinib. But very expensive. Actually I cannot afford.

Shall I continue with chlorambucil? Or suggest any treatment etc.

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Hi Poojaa, welcome to you and I’m so sorry to hear this news about your mother’s situation.

Could you give a little more general information to help members advise you more fully.

Which country are you from is an important factor in terms of your health system and what’s available. Is there no public funding for Ibrutinib there or insurance cover? Ibrutinib would be the ideal for her 17p deletion but I understand your dilemma over affording it.

Her specialist seems very alarmist about her prognosis. Is he the only person she can see? With the right treatment, her life could be prolonged massively dependent on other factors. Those are her general health. Does she have other health issues and how is the CLL affecting her? Do you have any idea of her blood results apart from the raised lymphocyte count? Is her spleen and lymph nodes badly swollen for example? Is she very anaemic and tired?

I’m sorry you have this worry and the treatment proposed is rather an old one by present standards. However without knowing some of the other information, it’s hard to make helpful suggestions.

Best wishes,

Newdawn

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Hello,

I'm Indian. She don't have any risk factors except recently diagnosed cll. We have insurance but tat to very least amount. She is taking now Chlorambucil with dexamethasone. She is active. Her spleen is 5 cm and liver is 6 cm. Mild anaemic. Wbc 89900. Platelet low. Lymphocytes 91.

What kind of diet she can take. Can I opt any other medicine.

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I was initially surprised at your mother’s advanced staging but India seems to use the Rai-Sawitsky staging system. CLL patients are categorized as below:

* Low risk (stage 0) – Lymphocytosis in the blood and marrow only

* Intermediate risk (stages I and II) – Lymphocytosis with enlarged nodes in any site or splenomegaly (spleen enlargement) or hepatomegaly (enlarged liver)

* High risk (stages III and IV) – Lymphocytosis with disease-related anemia (hemoglobin < 11 g/dL) or thrombocytopenia (platelets < 100 x 10 9/L)

Ideally, as you already appreciate, your mother’s treatment would be with BTK oral meds like Ibrutinib because chemotherapy hasn’t been demonstrated to be a useful or durable treatment option for patients with a higher risk 17p deletion.

The use of Chlorambucil with dexamethasone (which is a steroid) will assist in the shorter term as her Consultant has said. It seems to be more widely used in India from the research I’ve read. I’m not sure if any other options have been mentioned should she become refractory to this and need further treatment?

I’m afraid I have no idea what’s available in your health care system or how it could be funded Poojaa and it’s very frustrating to me that you cannot presently access the Ibrutinib which would be the treatment of choice in these circumstances elsewhere.

Others may be able to make alternative treatment suggestions but I rather think the Consultant would have considered them already had they been available or fundable. This may help to explain the different use of therapies;

emedicine.medscape.com/arti...

‘Treatment recommendations for patients with del (17p)

Although these patients have a poor prognosis and there is no clear standard of care, the National Comprehensive Cancer Network (NCCN) guidelines suggest the following regimens (in order of preference) as first-line treatment [15] :

Ibrutinib [13]

HDMP (high-dose methylprednisolone) plus rituximab

FCR

FR

Obinutuzumab plus chlorambucil

Alemtuzumab with or without rituximab’

In real terms, your mum is relatively young, her levels are not desperate (however you don’t say how low her platelet level is) and as she has no co-morbidities, she really could be assured a much longer life with the access to the right treatment. In terms of diet, simply continue with nutritious food and good levels of hydration.

I really hope you can find it and importantly, access the funding for it.

Best wishes,

Newdawn

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Hi Newdawn

Regarding my mother our consultant suggested ibrutinib. But it is very expensive we can afford for a month. Later don't know what to do.

For past 1 week she is complaining her stomach is stony hard. No flatulence.

I'm very much worried. My mom is very big support for me. Im really scared.

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Chlorambucil is a fairly old and gentle drug; you might want to see how well your mother goes on that first. Ibrutinib is a maintenance drug - and trial results show that people do best if they stay on it long term, that is years, not months. As your mother's consultant whether going on and off it would be advisable.

Neil

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I am 17 P deleted on Venetoclax plus imbruvica and doing well so far . Maybe you can contact the drugmaker and see if there is a compassionate use program in India . Pharmacyclics and Abbie .

Because of her genetics 17p deleted she needs to get to a targeted therapy somehow in my opinion .

I see a lot of clinical trials for new CLL drugs in China. Is that a crazy idea? Or maybe a clinical trial in Australia? I am just throwing out these ideas - I don't know if these are possible .

The CLL Society website may be helpful to you as well .

Be well,

Hoffy

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