Blinatumomab

Hi 

I'm not a member of this group but was passing and noticed that you hadn't had any replies. 

I typed 'Blinatumomab' into the search facility in this group but it only brought up a couple of very old posts. I'm going to tag Paul1969 into my reply as he is the Community Champion for this group and might have some information on this drug or be able to point you in the right direction to find some information.

Wishing you all the best

x

Ok thank you

Hi Feline-Fan

Sorry for the slow reply.. Whilst I had ALL I wasn't Philadelphia positive and my treatment was a while ago so no experience of Blinatumomab. It appears to be quite a new drug which is still being trialled after successful results so far. I would try speaking to your team or perhaps try the helpline (number below) and try and speak to one of the nurses. 

Good luck!

Thanks Paul

 Not sure it’s a trial drug anymore, as it was approved for use by NICE

 Seemingly quite widely used in America, but still early days for it in this country.

 Have heard a lot of good reports about it though 

Hi 

My son finished his month course of it last Friday. We now await a bone marrow biopsy next week and the result.  Hoping his levels of MRD will be low enough now  for transplant..

He is ALL B cell with Philadelphia negative

How are you getting on. 

Hayley x

Hello all,

i was diagnosed with B cell All Ph- back in March 2016 and underwent a Chemo and an allogenic transplant.

It worked for 4 years but have relapsed just 2 weeks ago and have started blinatumomab as my new treatment.

i was also hoping to find some information and patient experience but there doesn’t seem to be much.

i feel pretty normal except for a little knee pain with the first infusion. Other than that I’m currently on day 7 of 28 and it’s going pretty well. Minimum side effects. 

Hi. My son was on that for a month end of December to January 2020 . 28 day course . He found it excellent. It got his MRD  levels low enough for transplant on the 14th February. Our daughter was the donor. He had a bone marrow biopsy in May which revealed nil disease present. Due for another one November I prey it will be clear. He had ALL B cell Philadelphia negative.  He is going through a period of GVHD at the moment.  So back on a lot of tablets. Hope your doing well. Please feel free to chat. I know ALL is a rare one with adults. X

Hi hayley

so good to find someone I can share this experience with even though I’m sorry it has to be under these circumstances. I completely agree that this treatment is so much kinder on the body than the chemo that I had. Sometimes I feel so normal and healthy and question what I’m doing in hospital! I’m currently due my third bag today with a slightly higher dose than before and tapered steroids so here’s hoping i don’t have any other side effects from that.

Hi everyone,  I am also on this new drug Blinatumomab just finished 28 days of infusion ,will have bone marrow biopsy next week to see if it's brought me to remission...but no one's heard of this treatment ! How are you doing? I loved having the infusion at home. Hopefully it is working 

Hi my son was also on that he found it a lot better for him.  After his bag it brought the disease right down but not quite zero levels. He was in remission   in October for the top levels of cells but still had some residual disease left. He had a stem cell transplant in February.  Our daughter was the donor.  He had his bone marrow biopsy in May which thankfully came back nil disease. It's a roller coaster road. Take each day as it comes xx