Imbruvica follow-up

[AdrianNS]

Hi there,

I’m a member for almost 1 year already of this great community, so far just reading about experiences and trying to keep positive about my husband’s evolution, diagnosed in June 2017 with Small B Mantle Cell Non Hodgkin Lymphoma. Since September 2018 on Imbruvica, after RCHOP and Radiotherapy proved not to be 100 % effective. So far, he’s doing well with Imbruvica, no side effects.

As 1 year passed, it’s time for evaluation and, to our surprise, the doctor recommended him only a CT scan of the neck area, where the lymphoma was initially observed (finally he is stage 4, as per bone marrow biopsy and 4 regions CT scan). I say surprised because, after having RCHOP and radiotherapy last year, the CT scan showed almost nothing while the PET-CT revealed a new activity area that was never present in the previous scans, leading the doctor to the decision to move him on Imbruvica. So…. I’m coming to you with the kind request to tell me how are you doing? How do you monitor your evolution under Imbruvica? What are your doctors looking at and with what frequency? We are in Romania and here, the relation with doctors is very difficult (due mainly to their incapacity to properly communicate with patients) and putting trust that the doctor is really interested on patient well being is not an option…. Thank you for your attention, GinaD

[lumedeiros]

Hi, Gina. In my first years after RCHOP, my doctor recommended CT every 6 months, mas blood tests every 2 months I'm taking Imbruvica since 2018 January and last blood tests - a complete and precise test - just revealed that the cells are free from cancer. So, now I am doing blood tests every 3 months . I guess they are willing to wait for symptoms appearing to morder a new imagem test.

[AdrianNS]

Thanks a lot, lumedeiros, for your reply. You are mentioning about a "complete&precise test". What is it about?

[lumedeiros in reply to AdrianNS]

Two approaches: a CT scan to find any lymphonodes bigger than normal ; a Blood test to look for sick lymphocytes. I am translating the name of the blood test: immunophenotyping. (I don't know if I am writing correctly, but...). Best of luck!

[GinaD2018 in reply to lumedeiros]

Thank you lumedeiros. Really intersting what you say about immunophenotyping. He was never done this type ofblood test. We will go to ask for it. Thanks God, the CT looks good this time.

All the best!

Gina