Neutropenia problems - Non-Hodgkins Lymphoma - CLL Support

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Neutropenia problems - Non-Hodgkins Lymphoma

gaby1953 profile image
6 Replies

My sister was diagnosed agressive malignant Non-Hodgkins lymphoma. She had chemotherapy using rituximab viusimilar and bendamusten drugs, after 3 weeks her leucocytes count is 200, the highest she ever had was 600 a couple of days ago, she was told the normal count is between 4000 and 10 000. The hospital give her medication and injections every day, but no improvement in sight. I have read on the internet that it usually takes 7-10 days for the leucocyte count to come up. But after 3 weeks no improvement

any recommendations on drugs or what the problem could be? Or how long it could take for her condition to improve?

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6 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

What is her absolute neutrophil count [ANC]? There are drugs like Neulasta which will bring up neutrophils. The rate of increase varies by patient...

~chris

gaby1953 profile image
gaby1953 in reply toCllcanada

ok will try and find out, all I know is that the drugs are not helping her. will let you know

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply togaby1953

You say aggressive NHL, did your sister have CLL and then transformed to this aggressive disease?

Sorry, just not enough details...

lankisterguy profile image
lankisterguyVolunteer

Hi gaby1953,

From your post, you sound very concerned and distressed. And your sister is fortunate to have you by her side.

Most of us here went through the same stages when we were first diagnosed.

The doctors use terms that are like learning a strange new language.

It took most of us at least one year of study and effort, along with a wonderful approachable CLL expert doctor, to be able to decipher what the docs are saying.

Since we are not medically trained, and the information you have posted is fragmented, our only suggestion is to seek the advice of an expert in her specific NHL (Non-Hodgkins lymphoma).

This group is primarily folks with CLL (Chronic Lymphocytic Leukemia- which despite the name is one of many NHLs). However there are many other NHLs with names like Follicular, Mantle Cell, Waldenstroms, etc. The typical treatments and reactions to Chemotherapy differ by the specific subtype.

cancer.net/cancer-types/lym...

For now the best you can do is, become an advocate for your sister. Then ask that the leading doctor of the team treating your sister meet with both of you and explain her diagnosis, what is currently happening and their plan for the next few days.

You should record the conversation with a smart phone or other recording device, after getting permission from the doctor.

Also you should ask how often this doctor and team have treated your sister's specific type of NHL. And whether there is a Research Hospital and specialist team that can be consulted for advice if the current team is struggling to control your sister's results.

Len

gaby1953 profile image
gaby1953 in reply tolankisterguy

Thank you so much, my sister is in a hospital in Germany, so should have good care, i live in Africa and worry about her a lot since her white blood cell count does not return to normal, now she is in her fourth week after chemo and yesterday her blood cell count was 400. I am just praying that her condition will improve soon. thanks for your wonderful reply

Justasheet1 profile image
Justasheet1

Len,

That was great advice for everyone here.

Thank you,

Jeff

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