Acute lymphoblastic leukaemia

A support group for anyone affected by acute lymphoblastic leukaemia (ALL) to come together, share experiences, and ask questions.

Blinatumomab

feline-fan
Posted by

Hi there

 Just wondering if anyone has had success with the above named drug? 

 I am about to be started on it, so any help, advice or support it might be received 

Thanks

Tamsin xxx

 Diagnosed  With Philadelphia + with ACA B-ALL in June 2018.
Suffered a CVA (Stroke) in early July 2018 -  leaving mobility and eyesight issues 
August 2019 - on 1st cycle of Blinatumumab,  due to relapse during Maintenance phase . 
Type 2 Diabetic Dx 2004. Stage 4 Osteoarthritis in both knees dx in 2013.
latchbrook
Posted by

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  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

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

feline-fan
Posted by

Ok thank you

 Diagnosed  With Philadelphia + with ACA B-ALL in June 2018.
Suffered a CVA (Stroke) in early July 2018 -  leaving mobility and eyesight issues 
August 2019 - on 1st cycle of Blinatumumab,  due to relapse during Maintenance phase . 
Type 2 Diabetic Dx 2004. Stage 4 Osteoarthritis in both knees dx in 2013.
Paul1969
Posted by

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!

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

 

feline-fan
Posted by

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 

 Diagnosed  With Philadelphia + with ACA B-ALL in June 2018.
Suffered a CVA (Stroke) in early July 2018 -  leaving mobility and eyesight issues 
August 2019 - on 1st cycle of Blinatumumab,  due to relapse during Maintenance phase . 
Type 2 Diabetic Dx 2004. Stage 4 Osteoarthritis in both knees dx in 2013.