Now that I’m in my 4th cycle of the clinical trial, I don’t have to make weekly visits to the clinic. This is the first week since August that I’ve not had to go in to Sarah Cannon for labs etc. Every two weeks for cycles 4 and 5 and then monthly beginning cycle 6. Woot!!!
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
126.96.36.199. 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.
188.8.131.52. 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
184.108.40.206. Neutrophils more than 1.5 ϫ 109/L (1500/uL) without need for exogenous growth factors.
220.127.116.11. Platelet counts greater than 100 ϫ 109/L (100,000/uL) or 50% improvement over baseline without need for exogenous growth factors.
18.104.22.168. 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.
While I am battling CLL (Chronic Lymphocytic Leukemia), there’s another chronic form of Leukemia out there called CML (Chronic Myelogenous Leukemia). NBA Basketball legend Kareem Abdul Jabbar is living with and managing CML via a cutting edge medication called Tasigna. Our blood cancers are essentially incurable but with modern research through clinical trials, drug treatments are emerging which allow us to live on with them. The results are truly changing and saving lives.
Sheila and I have checked in to Sarah Cannon Research Inst and are in my treatment room, here for the next ~7 hours. With the thrust of a thousand prayers, we now have begun the journey to CLL recovery. The next month will be busy with lots of visits and labs but I am now taking the ipi145 investigational drug.
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.