It’s now been almost four full 28 day treatment cycles with investigational PI3K inhibitor IPI-145 and it’s time for another CT scan (#4) tomorrow. This will be my third since August and they’ll be measuring my spleen, liver and many lymph nodes for shrinkage or reduction in lymphadenopathy as a result of the therapy. The key words I’ll be listening for from Dr Flinn afterwards will be Partial Remission or simply PR. 50% reduction across the board should be attainable from the numbers I’ve been watching and it would be an awesome Christmas gift!
After 3 1/2 28 day cycles of treatment in this ipi-145 clinical trial, The trends from my CT scans and CBC tests are all pointing towards more normal blood counts and hopefully a partial remission. The WBC and Neutrophil counts show quite a bit of variability from week to week but they are trending in more normal directions. Can’t thank Dr Flinn and the team at Tennessee Oncology/Sarah Cannon Research enough.
Merry Christmas to Don!!!
From what I’ve read, this seems to be the minimum goal for success in treatment of this CLL but a definition has eluded me until now. According to the journal “blood” 2008 111: 5446-5456 Prepublished online January 23, 2008;doi:10.1182/blood-2007-06-093906 it is:
5.2. Partial remission (PR)
PR is defined by the criteria described in sections 5.2.1, 5.2.2, or
5.2.3 (if abnormal before therapy), as well as one or more of the
features listed in section 5.2.4. To define a PR, these parameters need to be documented for a minimal duration of 2 months (Table
4). Constitutional symptoms persisting for more than 1 month
should be recorded.
5.2.1. A decrease in the number of blood lymphocytes by 50%
or more from the value before therapy.
5.2.2. Reduction in lymphadenopathy (by CT scans in clinical
trials 57 or by palpation in general practice) as defined by the
18.104.22.168. A decrease in lymph node size by 50% or more either in
the sum products of up to 6 lymph nodes, or in the largest diameter
of the enlarged lymph node(s) detected prior to therapy.
22.214.171.124. No increase in any lymph node, and no new enlarged
lymph node. In small lymph nodes (< 2 cm), an increase of less
than 25% is not considered to be significant.
5.2.3. A reduction in the noted pretreatment enlargement of
the spleen or liver by 50% or more, as detected by CT scan (in
clinical trials) or palpation (in general practice).
5.2.4. The blood count should show one of the following
126.96.36.199. Neutrophils more than 1.5 ϫ 109/L (1500/uL) without need for exogenous growth factors.
188.8.131.52. Platelet counts greater than 100 ϫ 109/L (100,000/uL) or 50% improvement over baseline without need for exogenous growth factors.
184.108.40.206. Hemoglobin greater than 110 g/L (11.0 g/dL) or 50%
improvement over baseline without requiring red blood cell
transfusions or exogenous erythropoietin.
Failure is not an option! We are going to get there and hope and pray for eventual full remission.
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 ↑
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! 😀
It’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.
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.