August - Clinical trial update - B + R and Idelalisib - CAL 101

[MartyR]

Hey CLLers

Unfortunately my second B + R infusions in this clinical trial were delayed by a week due to a query raised by Pharmacy - compounded by a lack of space in the Day Care Unit. Contact was made with the Clinical Trial Company and they have agreed to the delay of my B + R chemotherapy - but I continue to take the CAL 101 / Placebo twice a day - no antibiotics. (Then get back on program - in 3 weeks time!)

At my Consultant Appointment - 14/08/13 - Dr P "delighted" with my progress especially reduction in "nodes" and general blood levels.

Blood samples taken for Clinical Trial purposes.

Hospital Blood test - Results FBC 171.3/ Lymphocyte 166.9 / Platelet count / Neutrophil Count 1.30

Questionnaires on how I am feeling physically / mentally - I am concerned about Treatment / Infections / CLL getting worse / family worries.

But in myself I am ok (ish) just frustrated by delay & paperwork.

Eventually the two days of Bendamustine and Riuximab infusion went well with the associated preventative drugs taking care of any side effects. (In fact 30 mins after the infusion was finished I was driving myself home in my Mazda - roof down - enjoying lots of fresh air ! )

Whilst these Clinical Trials are "blind", I do appear to be one of the lucky participants - because as various haematologist have noted "something else is working inside my body to produce the physical and blood test results - over and above normal B + R reactions !" - or as one friend put it " your body must be made of steel!"

But maintaining my vigilance on infections and germs as well as being thankful to my God!

Marty

[AussieNeil Administrator]

Hi Marty,

I was wondering how you were doing on the trial, so thanks for your interesting update. Great to hear you are "delighting" the Dr and very pleasing to see your platelets and neutrophils are holding up, even if you can't escape the paperwork :(.

Neil

(PS I hope you don't mind me deleting some of the non-relevant tags)

[MartyR]

Neil,

Thanks for your encouraging words - when the patient is doing everything to his best ability, frustrating delays and paperwork by Others are never listed as a "side effect" for chemotherapy treatment.

I was trying to get the world record for "tags" and now you have ruined my attempt!!!!

(But no problem - really!)

So now just a few days to my four weekly IVIG and hopefully some comparison blood results ---->>>>. then back on the trial program.

So how are things going with you?

Regards,

Marty