Mantel Cell Lymphomia: My partner was diagnosed... - CLL Support

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Mantel Cell Lymphomia

pollyg2016 profile image
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My partner was diagnosed with MCL three years ago. He underwent chemo and then had stem cell transplant. Recently, a blood test has indicated that his white blood cells have risen and that his platelets are now getting low. My partner looks and feels great, without showing any of the symptoms he first had when he was originally diagnosed - muscle lose, night sweat, tiredness, gaunt appearance. The doctors say they want to put him on Ibrutinib as soon as possible, before he develops any symptoms. We are awaiting scan results to see if the cancer has come back or spread anywhere else. The doctor also says that his spleen might start to enlarge. I know the drug has only recently been trialled on humans, but I wanted to know the pros and cons of taking this drug. Is it a replacement for chemo? will he get the same side effects (hair loss, sickness)? Is this something he will have to take for the rest of his life? If he stopped will the cancer return? Does it interfere with him taking vitamins and supplements (plants based, not chemical based)? Many thanks

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pollyg2016
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Cllcanada profile image
CllcanadaTop Poster CURE Hero

Imbruvica (ibrutinib) is used for MCL and CLL, but the dose is higher for MCL.

The devil is in the details and because these cancers are different the way patients respond is also different, so CLL experiences may or may not apply.

I have included a link to the MCL part of the drug website, where you will find specific MCL information., as well as a nurse support phone number for information.

imbruvica.com/mcl/what-is-m...

Yes these pills replace chemo but are not chemotherapy. Generally speaking there is no hair loss, but it may go curly, there is often diarrhea in the early months, no grapefruit juice or grapefruit products, no St. John's Wort... no supplements of any kind unless specifically OKed by the doctor. The pills are used for life or until they stop working, and unfortunately the cancer will return at some point when treatment is stopped, but there are other drugs available to continue treatment.

Your doctor will go over everything with your partner and yourself, and it is important to read all the information you are given

All the best... Imbruvica (ibrutinib) is a good treatment...

~chris

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Here is a discussion of Acalabrutinib in MCL, for which it was just approved in the U.S.

onclive.com/web-exclusives/...

pollyg2016 profile image
pollyg2016 in reply to Cllcanada

thanks Cllcanda, interesting reading.

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