Treatment

HI Andybyname,

In the last few years there has been a profusion of new drugs becoming available as well as many drug trials that a CLL patient can opt for.

To fully answer your question would require a couple of questions.  Are you a UK citizen and thus under the care of the NHS, and also what drugs are they offering.?

At present the CLL drug combination that appears to be the most successful for many patients is ibrutinib with venetoclax.

Dick

Hi Andybyname

Do you have a consultant Hematologist or an oncologist?  If I were you I would try to get to see a CLL specialist, it makes a difference to treatment and your first choice should be a trial, combinations, as Dick mentioned, are more likely to get you to MRD-  (Minimal  Residual Disease Negative) and a long remission. 

I have been on Ibrutinib for 8 years now as part of a long term extension study. The oral drugs are not chemo, they are inhibitors BTKi  they inhibit the signal process in a cell so that it doesn't replicate and dies off naturally, like normal healthy cells. 

A lot will depend on the gene mutation you have. No doubt you will be told about that at your next appointment.

It's hard to make any recommendation to you with the little information you have provided. Get copies of your blood results, ask questions of your consultant.

I can't really say anything else but you are in a better place now with the number of drug treatments available since I was diagnosed in 2010.

Best wishes

Mike

Hi Dick

Good to hear from you.  As I have said I have had CLL for five years and blood tests have shown up as expected but fairly stable over this time. Symptoms now of shortness of breath and fatigue but partly attributed to AF which I also have.  This is also effected by CKD which is stable but only recently shown up.  I am a UK citizen and under the care of the NHS.  Now under discussion with Haematologist re starting treatment to improve quality of life and give some relief from shortness of breath and give me a bit more energy.  Have been offered a slow acting drug Chlorambucil as an initial oral treatment to be reviewed after a few months with the option to upgrade to Ibrutinib, Idelalisib and or Venetlax or if I wish to I could have Rituximab and or Bendamustine  infusions straight away.   Strange to be offered a choice of treatments and for me to decide which path to take.  Unfortunately the treatment centre at my hospital is being refurbed so infusions would involve travelling about 30 miles each way to a different area. Final decision next week after my scan and the MDT meeting as to what the consultant  will suggest!!

Andy

Hi Mike

Thanks for your reply. Good to hear from you.  As I have said I have had CLL for five years and blood tests have shown up as expected but fairly stable over this time. Symptoms now of shortness of breath and fatigue but partly attributed to AF which I also have.  This is also effected by CKD which is stable but only recently shown up.  I am a UK citizen and under the care of the NHS.  Now under discussion with Haematologist re starting treatment to improve quality of life and give some relief from shortness of breath and give me a bit more energy.  Have been offered a slow acting drug Chlorambucil as an initial oral treatment to be reviewed after a few months with the option to upgrade to Ibrutinib, Idelalisib and or Venetlax or if I wish to I could have Rituximab and or Bendamustine  infusions straight away.   Strange to be offered a choice of treatments and for me to decide which path to take.  Unfortunately the treatment centre at my hospital is being refurbed so infusions would involve travelling about 30 miles each way to a different area. Final decision next week after my scan and the MDT meeting as to what the consultant  will suggest!!

Always good to hear what others have to say and what treatments they are having.

All the best

Andy

You wrote ' I could have Rituximab and or Bendamustine  infusions straight away'. 

While this is sometimes offered for those with CLL it is by now a rather old fashioned chemotherapy treatment. 

The Ibrutinib and Venetoclax treatments are known to be easier to take and produce lasting remissions.

Make shore that you have a FISH test for del 17p as the Rituximab and Bendamustine  infusions would not work under these circumstances. 

Dick