The whole point of this blog I am keeping is to “journal the journey”. I saw this today and thought it aligned well with what I’m trying to achieve and in general was great advice. You can read their blog entry here.
This coming Monday is what we celebrate here in the US as Labor Day. What it means is that practically everyone outside of retail has the day off – including the lab used by the drug company sponsoring this clinical trial. Since they have the day off and my blood samples from treatment day one would arrive too long before they return to work, my start date has had to be rescheduled. — sigh 😦
It’s now Thursday and I’ve had no appointments, no procedures, no lab draws since Tuesday. Tomorrow (Friday), I am supposed to begin treatment with IPI-145. I will report to the clinic early in the AM, get setup with an IV line and begin taking this investigational cancer drug. My near immortal B lymphocyte cells should begin to regain their mortality and start dying off like normal well behaved blood cells. That’s the plan anyway… Your prayers, comments and encouragement are most welcome.
1 week, 3+ CTs, 1 more bone marrow biopsy and countless needle sticks later, I’ve jumped through the last remaining flaming hoop to beginning treatment for this CLL in the IPI-145 clinical drug trial. Coming soon: more needle sticks and a few more CTAs – and hopefully smaller lymph nodes, spleen, liver and more normal blood counts.
The planets must have been a bit out of alignment yesterday. The calendar held a full day w/ 1 Dr visit, one biopsy w/ anesthesia and 1 set of CTAs (Computed Tomography Angiograms). At the last moment, the pathologist scheduled to obtain my marrow sample decided to have the biopsy guided by CT (different doctors, different part of hospital) which pushed the planned CTA procedure into scheduling peril.
I was released from the hospital three hours later than planned at 530pm and the imaging folks just one half mile away were supposed to wait for us. They didn’t but apparently they were nice enough left the doors unlocked. We set off an alarm upon entering. Some very friendly radiologists came up to investigate the alarm a few minutes later. They advised us to call the practice tomorrow and reschedule and I finally got to eat. :-).
The CTA is still needed to stage my CLL for the treatment/clinical trial scheduled to begin later this week. Until then, I am once again “nil per os”. Here’s to hoping the planets are in a little better alignment today.
They call it NPO, Latin for nil per os which translates to nothing by mouth. It’s standard protocol for anything with anesthesia and many imaging tests. Well, I am npo today. I have a bone marrow biopsy and aspiration scheduled (w/ anesthesia thankfully) and a few CT angiograms. They should give the oncology/clinical trial team a good indication of the size of my lymph nodes, spleen and liver as well as some measure of how advanced the CLL is inside my bone marrow. Treatment with this new drug is supposed to improve all of those measures over time.No, I am not even remotely looking forward to today but its a set of hoops that must be jumped through to kick this disease’s butt.
This one’s been weighing on my heart a lot lately. Even though I am only now feeling the physical effects of advancing CLL and facing treatment, I’ve had nearly two years to think about it. Sheila and I are filling an almost parent-like role for our two grandkids (5 & 7) right now; we take care of them sometimes 6 days a week. We feed them, pick them up from school, put them to bed and make sure they get their baths. At this point, they really have no understanding of my condition and I have no good ideas about how to share any of it with them.
That’s my Grandpa & me. He died from a malignant brain tumor when I was 3 (back in 1967) and I had no idea that he was sick. All I knew was my best friend was suddenly gone and it deeply and negatively affected me for many years. I certainly don’t want to do that to them but don’t want to scare them or overwhelm them unnecessarily.
How do you talk to kids about scary stuff like cancer?
Hi! I’m Don. I was diagnosed with Chronic Lymphocytic Leukemia (aka CLL) in September of 2011. Since then, we’ve done lots of bloodwork and a bone marrow biopsy in something known in clinical circles as “watch and worry”. We’ve steadily and patiently watched my white blood cell counts rise and my red blood cell & platelet counts fall.My lymph nodes have gotten pretty big and in general, I am fatigued and don’t feel really good most days.
Fast forward to August, 2013.
This week, my platelet count had fallen to 74000 so my oncologist Dr Flinn and I both agreed that it was time to begin treatment. I have a genetic mutation called short arm chromosone 17p deletion. FCR (Fludarabine + Cyclophosphamide + Rituxan) is the standard chemotherapy regimen for CLL these days but it’s not known to be all that effective in terms of achieving durable remissions for those of us in the 17p club. Without a bone marrow/stem cell transplant, this is not generally considered a curable cancer and managing it over the long term is what we’ll have to do. We looked at some new therapy options and I believe we found a good fit. It’s all unfolding really fast and in the last few days, I’ve enrolled in a clinical trial for a new B cell receptor pathway signalling inhibitor currently called ipi-145. I will begin treatment next week. We’re gonna drop-kick this cancer with zero mercy! This is where the story begins.