Hello all,
I was hoping to draw on your knowledge and wisdom.
My dad lives with CLL, with 3 relapses along the way over the course of 14 years. On our recent visit with oncology we were told he has relapsed again with no further treatment options. He has previously been on Ibrutinib, idelisabib ventoclax ( excuse the spelling).
His doctor told us the only option we have is for the doctor to contact a company who may offer him, pirtobrutinib on compassionate grounds.
Have any of you been prescribed this drug or know of any situations where a drug has been granted on compassionate grounds.
Other than the CLL, he's a pretty healthy 72 year old, if that makes sense. It's hard to think there's no other options.
Thank you all for listening to me x
Hi NikkiT and a warm welcome to this corner of the Community although I am sorry to see folks joining us and sorry to hear about your dad.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well..... especially as I having relapsed may times over my 25 years...... but eventually Allo (Donor) Stem Cell Transplant stopping the relapse cycle 9 years back.
There are a number of active members on the group at the moment so let’s look for them to pick up on your post.
Although CLL it has the word Leukaemia in it, in Hematology terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.
Do check out Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment..... and do have a look at their Lymphoma TrialsLink
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
I just put pirtobrutinib into the search tool 
near the top and there were only 2 hits.
