Wednesday, May 2, 2012

Virtual Cancer Buddy and brief update on Clinical Trial NCT01217749 (PCI-32765 and ofatumumab)

Well I am  finished my final weekly infusions of ofatumumab and so I now can put some energy into some projects dear to my heart.

This is near the top of the list.

Please go to the link and spend the two or three minutes letting me know what are the most important health data and web support tools that you would want to have with you at all times.

As some of you know, I like Chris D, and many others with CLL or cancer have a thumb drive in my pocket that has some medical history, but it would take a dedicated doctor or nurse to find it and open it and root through it if I wasn't able to guide them. And if I am able to guide them, they don't need it.

The idea is that this would be more accessible, simpler and more robust, but because it could contain more that just the dry spreadsheets and contact information it would be something that you would be constantly consulting and would be regularly updated.

It would be your boon companion, virtual cancer buddy.

Your feedback will help to design it.

Do you want easy access to the latest clinical trials?

Do you ache for a calming MP3 to help manage the stress?

Do you long for tools to aid on the difficult decision processes?

Do you wish you had easy access to reliable research information?

Would an integrated appointment reminder be important?

Do you want your advance directives accessible?

Would it help if it could Skype to others with cancer?

Where do want it? On your phone or ipad or computer or everywhere?

Please check out and see the whole list.

The plan would be to provide this as a free service to cancer patients and their caregivers as a value added service from their treating hospital or oncologist.

Thanks a bunch for your help.  The survey only takes a few minutes at the very most.

Next week I finally start PCI-32765 or ibrutinib. These last 8 weeks of ofatumumab have been a long prelude with only very modest results on my nasty but not enormous nodes. Truth be told, probably all the benefit came in the first two weeks. Not so the advisers events. The persistent and humbling myalgias that have me limping around the apartment at times are my only side effect now. That and a completely mucked up circadian rhythm that has me up to 3 or 4 AM most days.

I am glad for a the five week break from "ofa".

I am ecstatic that I get to taste the magic sauce next week.

I am looking forward to being home again with my family and friends and cat and showing off my shrunken lymph nodes from ibrutinib.

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Anonymous jcleri said...

We are all looking forward to having you back home where you belong.....make sure you leave those stupid nodes in Ohio.........



May 3, 2012 at 7:22 AM  

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