Is neccesary to make a Bone marrow biopsy every year during the ibutrinib monotheraphy treatment?

[Cgr2018]

My brother is not in a trial, and I Wonder if he needs to make a Bone Narrow biopsy this year? He he is on monotherapy imbruvica treatment since july 2018, i mean, 12 months on treatment. Thanks!!!!

[shazie]

I have never done a BMB and I have been on Imbruvica for five years.

[Cgr2018 in reply to shazie]

Thank u so much. He feels pretty well with this treatment and the lab results, 2 months ago, are really good, with all the things ok. But when he must come again to make the lab tests, I feel very nervius, because he is 17p del, and always Im affraid if imbruvica still working. The treatment works very well for him since he started 1 year ago. And Im affraid when the appointment with the doctor is near. Thank you so much for your support!

[Hidden]

unless his labs are coming back perfect=why. My doctor says she will have another done on me if and when my labs come back within all normal ranges

[Cgr2018 in reply to Hidden]

His Labs are perfect, since he started the monotheraphy with imbruvica. And he feels really well, practica sports, etc. But Im always feel fear about if the treatment stops working and this kind of things

[Cgr2018 in reply to Hidden]

Thank you for your support!

[mrsjsmith]

I had two back in 2007 when I was on Chlorambucil, but have never had one so far on Ibrutinib. But they are no big deal !

Colette

[Cgr2018 in reply to mrsjsmith]

Thank u! Im feel nervious and pray for the monotheraphy with imbruvica still working good for him. He is on his this treatment for 12 months. Best wishes for you!

[cajunjeff]

The main reason someone on mono therapy with ibrutinib would need a BMB, outside of a clinical trial, would be if the doctor is considering stopping ibrutinib to see if a durable remission has been obtained.

The better the degree of mrd undetectability, the more durable the remission might be. The deepness of the remission can only be known through mrd testing.

The goal is not for us to stay on ibrutinib forever, its to find ways to get us off all cll meds. They are seeing 30% complete responses on ibrutinib five years out now. We may start seeing some folks get off ibrutinib in the future, but I dont think they would risk it just because blood counts have normalized.

Other than that, I don't see the benefit of undergoing an invasive test, outside of a trial, just to determine mrd status if there is no plan regardless of status.

Why stop ibrutinib if its working? Well they really do not know the long term effect of being on it and what problems long term use might cause.

The complete response rate climbs with each year of use, so I think you will see some people get off ibrutinib, particularly if bmb mrd testing shows a very deep remission.

[Cgr2018]

Thank you! The response will be better with the pass of the time? Im affraid if imbruvica stops working. 2 months ago the results were pretty good, everything normal. And he feels pretty good, but always im affraid about he is 17p, but I think also imbruvica works many years for this cll patients.

Im sorry Im always feel very anxietity when the appointment with the doctor and the lab test are close, near, because are the next week.

Thank u so much!

[Hidden in reply to Cgr2018]

i am 17p and tp53. I have been on ibrutinib for 5 months and have seen continuing results from it. My doctor says i will get a bmb if my blood work shows me cleared. It did not occur to me to ask why. I assumed it was just to know but maybe she will say discontinue at some point.

[Peacekeeper]

When I was on Ibrutinib I got 12 monthly BMBs as all my disease is in the marrow and my blood readings were normal bar the neutaphils and platelets pulled down by the ibrutinib. They needed too see how it was helping the reduction of the % packed by bad cells.

BMBs not a big deal here my Doc gives me a light anesthetic so in dreamy land.

[Big_Dee]

Hello Cgr2018

I have finished my treatment and my blood tests are normal. I asked my doctor if I would need a BMB to determine remission, she said no. I did have BMB to determine extends of my CLL infiltration in bone morrow when diagnosed. In actuality, BMB is not going to cure anything other than give you little more information. Blessings.

[Cgr2018 in reply to Big_Dee]

Thank you so much!

[Cgr2018]

All my blessings for you, too. 😊

[kathymac52]

My husband is 11 q deleted, and he just finished a year on Ibrutinib. He will not stop taking it even though his doctor said he was in remission---normal blood work, and CT scan showed spleen, liver, appendix, and lymph nodes all shrunk back to normal. No bone marrow biopsy for him. I hear your concern, and I share that with you....every appt. with my husband, I worry and fret....and my stomach is in knots. I try not to think about it, after the appt.....but I always worry about hearing the bad news again, as he did not do well on BR chemo as a first therapy. So happy that it is working for your brother.

[Cgr2018]

Thank you so much, Kathy. My brother is also 11q, but when be relapsed on 2018 (he was 3 year sin remission by the BR) he also has 17p del. Now his labs are pretty good, he feels Healthy, weight gain, practica sports. The next week se hace the 3 months regular visita to the hematologist, and always I feel very anxious, depreda, and affraid if ibutrinib stops working. its very hard for me and my Family, because he is 35 years old. And, despite he is very well as I told you, im always feel affraid when the appointment with the doctor is coming. I think also feels healthy is a good sign of the effectiveness of the treatment.

Best regards!