Bobbie Update - Mar 22, 2009

I delay yet again in getting an update out to everyone within a reasonable time frame, but I was trying to wait until we had some sort of plan as to the next steps. At the time of the last update that I sent out, Bobbie had an upcoming MRI. The results of that MRI introduced the appearance of three new spots in her brain. After much discussion between her neurosurgeon at UNC, her medical oncologist at Rex and the medical oncologist in Charlotte running the trials previously mentioned, it has been decided that she will begin whole brain radiation treatments (WBRT) at Rex starting this coming Monday, March 23rd.

As it is described, this radiation treatment will run a course of about two weeks and each treatment will be about 15 minutes in length. The expected side effects that have been discussed are fatigue, hair loss, dry/irritated scalp, possible issues with short term memory in about a year's time and possible issues with cognitive processes (learning new things) over a longer time span. I would include a link to more information here, but everything I can find online is either not exactly Bobbie's situation or too intense for me to read in detail at 2:30am.

There is still a concern to treat other known tumors in her body (intestines at this time, specifically), but there is a question as to whether we wait to see if she can get into a clinical trial or proceed with the Temodar treatment, which will exclude her from eligibility for the current optional clinical trials which require at least 30 days brain health. A decision to this end will be made during or after the WBRT.

I apologize for the brevity of this update and hope that it doesn't present itself as hopeless or without a positive outlook for we maintain both hope and a look toward a long future with Bobbie front and center in it. If it seems less, it is probably because I am writing it at such a late hour, but I just wanted to get the word out so you all know that she is underway on Monday.

I will be sure to keep you posted throughout and we have continued to enjoy a couple more weeks of faux normality since the last update. She has spent a lot of time with Killian and having lots of adventures with him. For that, I am most thankful.

As always, we welcome all forms of positive vibes and thank you for the relentless efforts in sending them thus far.

Paul

Bobbie Update - Mar 3, 2009

Yes, I know that I am long overdue in getting an update out to you guys. Sorry about the delay.

The good news is that we have been enjoying a false sense of normality for the past few weeks as Bobbie has evidently been feeling the best that she has since probably May of 2008. So, that has been nice.

So, the nitty gritty on the medical front is this. Bobbie's medical and surgical oncologists agreed that she should attempt a fairly aggressive effort toward attacking the cancer at this stage. As a result, we were referred to a doctor at the Blumenthal Cancer Center in Charlotte, NC. He was very kind, patient, straight forward and informative. We met with him a few weeks ago and had a lengthy appointment (3+ hours) discussing potential treatments and the logic and realism behind entertaining each of them. The result is that she had 4 treatments to entertain:

2 FDA approved:

• Temodar
• Interlueken 2

2 clinical trials

• Temodar + trial drug
• Ipilumab (CTLA 4)

Of the two FDA approved options, the Temodar was mentioned in my last update along with the IL-2. The new oncologist described that he would not utilize IL-2 until Bobbie has been brain healthy for 6-9 months and has intestines not showing any sign of large tumors working as wall structure. The reasons are that there is an estimated 20 pound fluid weight gain and loss during the 5 day treatment and there is a risk that significant amounts of fluid could leak into the brain and basically squeeze it against the skull and risk death by stroke. Temodar remains an immediate option with about a 10-12% response rate.

Of the two clinical trials, Bobbie has been excluded from the Temodar plus trial due to her previous clinical trial with the brain tumor and the Giladel wafers, so that is not an option. She was explicitly not excluded from the Ipilumab trial (which is the one that all 3 doctors seem to be the most hopeful about), but all that really means is that she qualifies to apply for inclusion in the study.

And now for the tricky math - the Temodar treatment would automatically exclude her from any clinical trials, whereas the clinical trials do not preclude her from utilizing the FDA treatments. So, the current plan is to shoot for the Ipilumab study and hope that it does the deed. If that falls through, or even if it doesn't work, the Temodar option remains open as a fallback plan.

So, not a lot to report really other than we are moving forward. Her next steps are:

• a follow-up MRI and appointment next Wednesday, March 11, with her neurologist at UNC
• assuming nothing other than good news there, an MRI, PET scan and some blood work with the doctor in Charlotte in hopes of qualifying for the Ipilumab study - applications for that open within the next couple of weeks

It has been nice enjoying the last couple of weeks and hope that there is much more of that to come, regardless of what path lies ahead of us. Just wanted to at least get something out to let you all know what we're up to. If not before, I'll fire off another update once we know what's in store.

Thank you all for your inquiries in the absence of my updates.