Update July 2013 Trial with B + R -- Idelalisib (GS-1101) OR CAL 101 Study (III)

[MartyR]

Hey, - its Monday morning here - three days after completing my first round of treatment.

In general I feel reasonable - a bit tired and lethargic - but none of the more unpleasant side effects - SO FAR!!

The infusions went well over the two days and whilst my Temperature, BP and Pulse Rate rose and fell this did not cause any concerns to the medical team looking after me.

The only minor observation I would make is that the Trial Regime insists that the GS-1101 / Placebo is taken before infusions and then @ 12 hour intervals. As my first tablet was not available until 2pm - it meant after a long day in bed - that I was woken @ 2am to take my second tablet. (After discussion, the Trial Centre has now agreed to a gradual relaxation of their "12 hour rule" so that I can take the tablets @ a reasonable hour. )

Also I have brought home a pharmacy full of Antibiotics, Antiviral, and the Trial Tablets.(twice a day for whole Trial)

Even though I feel ok (ish) I realise that I must not become complacent - my immune system will be at its lowest 5 to 12 days after this treatment and that these types of treatment are cumulative. - !!

It would still be interesting to hear from anyone else who is on this Trial - or even just experienced the B + R treatment???

I know that our God will continue to look over my family - helping us through these difficult times.

Marty

[AussieNeil Administrator]

Thanks Marty for your update.

Nice to know that the Trial Centre were prepared to relax the 12hr rule - these treatments can be tiring enough without further sleep interruptions!

Email notifications look to be working again - I received an email notification of your posting above. Congratulations on using one trial to join another!

Neil

[sparkler]

I'm thinking of you Marty and wishing you well. Thanks for taking the trouble to write and share your experiences with us.

sparkler x

[MartyR in reply to sparkler]

Hi Sparkler, Thanks for your kind note. I am hoping that my remission and experiences will help the next "wave" of CLLs that are on W&W - like you.

Marty

[HAIRBEAR_UK Founder Admin]

Hi Marty thank you for sharing your journey.

You are a true pioneer, possibly one of the first to use a novel treatment combination and definitely the first to have been included in email notifications.

Nick.

[MartyR in reply to HAIRBEAR_UK]

Hey Nick,

Thanks for send me a note - me ..... a trailblazer .... wow - I hope I can live up to all expectations and not be surrounded by wild indians on the plains.

And yes I did get e-mail notifications which are a great help.

Marty

[saintjohn]

Hi Marty.

Hope thing keep running as smoothly as they appear to be in your post.

Stay well and Keep fighting.

regards

John

[MartyR in reply to saintjohn]

John, Thanks for your words of encouragement - as I have said before I am keeping focused on a positive outcome and doing everything to achieve this! Sorry to hear about your chest infection - it sounds very painful! Still if you have survived the recent years with the "saints" fortunes - you can survive anything! Marty (Man Utd fan.)

[Mikey47]

Good to hear that it's going OK, Marty. B + R is an option I'm looking at in preference to FCR.

Hope it continues to go well.

Best Wishes,

Mikey

[MartyR in reply to Mikey47]

Thanks Mikey - at this very early stage things appear to be going well and I will continue with my updates. If there is anything else I can help you with future treatment decision - ask !

Marty