Monthly Archives: October 2013

What do I know now?


After completing two months (28 day cycles) of IPI-145 clinical trial, two CT scans, one (more) bone marrow biopsy and a lot of ekgs & lab draws the preliminary results are:
White Blood Cell Count ↓
Red Blood Cell Count ↑
Hemoglobin ↑
Neutrophil Count & Percentage ↑
Lymph Node Size ↓
Platelet Count ↑
Every trend is in the right direction and seemingly on the way to at least a partial remission (PR) from this CLL. Onward to treatment cycle #3. Happy dance time! 😀


Has it been two months?

CTIt’s that time again… I’ve now been through two 28 day cycles of treatment with ipi-145 trial ‘oral chemo’. The clinical trial protocol calls for me to have a CT scan today to re-measure my lymph nodes, spleen and liver to see how well the trial drug has begun to help them begin reducing back to a more normal size. So far, they’ve been packed like sardines with abnormal lymphocytes. Please pray that these rogue B cells have truly begun their great retreat.

IPI-145 Market Buzz


Disclosure: I take IPI-145 as part of a phase 1 clinical trial twice each day ;). I have some auto email alerts setup for google to send me about topics of interest and this one recently came to my inbox. The background is financial but the info I found interesting. The investment analysts seem to be excited about the future of this PI3K inhibitor drug under development. The full article is here (free registration req.). Here’s a snippet

Infinity Pharmaceuticals (INFI) is a drug discovery and development company based in Cambridge, MA.

The company’s lead product is IPI-145, being developed for both Hematologic malignancies and Inflammation. Investor’s focus is firmly on IPI-145 and its potential in various types of blood cancer (CLL, iNHL, MCL, T-Cell). IPI-145 is a potent, oral inhibitor of the delta and gamma isoforms of phosphoinositide-3-kinase (PI3K).

What are PI3Ks?

PI3Ks are a family of enzymes involved in key immune cell functions. The PI3K-delta and PI3K-gamma isoforms are preferentially expressed in leukocytes (white blood cells), where they have distinct and non-overlapping roles in key cellular functions, including cell proliferation, cell differentiation, cell migration and immunity. Therefore, inhibition of PI3K-delta and PI3K-gamma may have therapeutic potential across a broad range of blood cancers and inflammatory diseases.

IPI-145 is currently being evaluated in a Phase II, open-label study in people with indolent non-Hodgkin lymphoma (INHL), a potentially fatal blood cancer. The expansion portion of a Phase I study of IPI-145 in a broad range of blood cancers is also ongoing. The company is also exploring the potential of IPI-145 in inflammatory diseases. There is an ongoing Phase II-a study in people with mild asthma, and a planned Phase II trial in adults with rheumatoid arthritis.

IPI-145 has shown activity across a broad range of malignancies during Phase I trials

– 68% response rate in iNHL

– 86% PR response and Nodal response in CLL

Yes, you read that right. 86% PR (partial response) and nodal response in CLL.

The data suggests a shorter time to remission and higher overall response rate than Gilead’s new drug idelalisib which recently ended phase 3 clinical trials early and submitted new drug approval (NDA) request to the FDA.

Life Impacted

Bluebird House I just spent a full weekend with about 50 cancer survivors and about that many more volunteers via a non-profit program called Camp Bluebird.  We attended a camp style retreat at a massive 320 acre campground on the shores of J. Percy Priest Lake in Nashville. I truly had no idea what to expect before getting there 2 days ago and I could probably write volumes about the things we did, the people I met and shared with; the environment was so loving, healing and warm. I had a wonderful time and my extended family unexpectedly grew much larger this weekend.
I’m still not sure who Mufasa is but he’s watching! IMG_20131027_115034
Near the end of our time together, we honored and remembered the fallen with a massive balloon release. Teary eyes were not in short supply. 20131027_081325

I can’t wait for the Spring 2014 camp in April.

A great sucking sound

paying-billsYou know that slurping sound you hear when the sink is draining, just before the water empties or that one when the straw in your glass has nothing left to siphon up… I’ve said before the worst part of cancer is its ability to virtually bankrupt anyone not super wealthy. I had been keeping up with the bills I had incurred prior to beginning treatment but they’ve begun weighing down the mailbox each day with a vengeance. Insurance pays up to 80% but 20% of a large number is still a fairly large number. I got a new bill for lab/pathology yesterday that was over $1000 after insurance. It’s not the first and likely won’t be the last. It truly angers me that you never get to see the cost of medical services ordered for you before they’re delivered. They come back to re-injure you a few weeks after when you’re hopefully feeling better. The truth is nobody budgets or even could budget for this kind of stuff and it causes me a lot of stress knowing the bill collectors will all be calling at some point and my former stellar credit rating will sink even lower. I’ve always tried to honor my debts but at some point, you do stop caring about making sure everything and everybody gets paid each month. 😦

Rallying Cry

When I first got this CLL diagnosis two years ago, I picked out this Tom Petty song as a rallying cry; something to remind me of everything that was truly important to me on those coming days when it might not seem like the future was so bright. Right now, thanks to my clinical trial team at Sarah Cannon Research and Infinity Pharmaceuticals the future is looking pretty bright indeed but as a musician I still really wanted to do this and the song has taken on a very personal meaning. If you’ve seen my Fight Song page, you’ll understand. 😎

My good friend Chris generously supplied the guitar/drum track and we did the rest at home on some fairly inexpensive recording gear. Sheila and I are both singing and I played the bass guitar. It’s a bit country, it’s a lot Rock & Roll. No, we’re not pros by any stretch of the imagination but I was really pleased with how it came out.

Hey, I will stand my ground and I won’t back down!