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 http://www.virtualcancerbuddy.com/ 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 http://www.virtualcancerbuddy.com/ 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.

Virtual Cancer Buddy

Hi friends,

I have been dreaming.

Actually at the urging of a forward thinking doctor friend, I have been wondering what might be in the best interest of all cancer survivors in a high tech approach to managing what is increasingly being understood as a chronic disease. That is certainly the case with CLL as the new therapies evolve.

I am envisioning something much more than a simple excel sheet that tracks labs. What I want is some kind of virtual helper that electronically nudges me to take my meds on time and do my aerobics. I don't think this is a fantasy. Hospitals are already exploring using patient portals to help manage heart failure and diabetes after discharge. Cancer care has a more distant and broader horizon, but I still think it can work.

What would you want included in this virtual cancer buddy?

Here are some thoughts I had in no particular order.

Contact info for providers?

Personal reminders of meds, exercise, appointments, lab?

A patient portal to ask questions or review labs?

Annotated interactive med lists that highlight possible risks, adverse events, and interactions?

Lab flow sheets with graphs and alerts?

Vital sign flow sheets?

Diet and exercise charts and advice?

Stress reduction techniques?

Glossary of terms?

Information for family and other caregivers?

Help with the decision process?

"Red flags" and what to do if you have one?

A "Siri" that answers your questions?

Please email me or post your thoughts and suggestions. Do you agree with my list? What would you add or delete? Dream big. Forget being practical. What do you really want? I will organize them and present them here and to my contacts in the hospitals systems and see if I can get some traction. At least I can make sure someone is hearing us.

I have posted this identical request on CLL at ACOR and the CLL Yahoo group and got very valuable responses that I am trying to tie together, but my blog reaches different readers and I want to hear what you have to say.

We are all in this together.

Brian