Testing, Testing, 1, 2, 3

When you watch people setting up a microphone to use in the public arena you often hear them say. Testing, Testing 1, 2, 3. sometimes this seems to be repeated endlessly which is a bit how I feel undergoing another battery of tests that hopefully qualify me for a phase one trial of the new drug, code named BGB-11417, for my lymphoma. I find it really interesting the criteria for this trial, in that they need potential enrollees to be at a stage where chemotherapy isn’t really working. But, they also want you to healthy enough to survive the trial. I know this is probably because if I croak it before the trial ends it might skew their figures for overall survival. The haematologist did confirm that given how unusual my response to chemotherapy has been I am the perfect candidate for the trial.

The other thing that I found interesting, after having done some research on phase one trials. That the most important part of this trial is about dosing, what is a safe level and what level produces side effects. Effectively the outcome for the patients is secondary to this result. So they want patients the drug might help, but at this point in the trial if it benefits you then that’s a bonus. So for those of us who cannot afford to wait for a phase two trial, where the emphasis is much more results orientated, I guess we just keep our fingers crossed.

Anyway back to the testing. Last week I started the process by having my fourth PET scan in the last year. This produced mixed results with some areas having resolved themselves, but overall the lymphoma is progressing and becoming more active. It would also appear that my ribs are now involved, which I guess will be confirmed by the bone marrow biopsy that’s part of the testing regime. One of my “favourite” things about reading the report is all the medical terminology sending me rushing to Dr. Google to try and figure out what they are talking about. It’s not as though you use words like “right pontine tonsil” or “interpolar lobe” in everyday conversation. Sure there are clues in the words as to the area but who knows what pontine means.

As for blood tests, I have been having these on a twice weekly basis for the last few weeks as my blood counts try and recover from chemo. Yesterday, finally after six weeks since I had chemo therapy my red cell count topped 100 with the normal between 130 and 210. These results however cannot be used for the trial as they don’t allow names as part of the tests and they have to have my trial specific number. Yes I have been assigned one already all tests are anonymous. Then I needed an ECG normally one is good enough but not for the trial. Three ECG’s are required and they need to be taken exactly two minutes apart. Just in case something happened while I was lying on the bed I guess. As this study is privately funded the ECG machine was brand new and much smaller than any I have seen before. Talking with the nurse about it she told me it had been supplied by the drug company and would need to be returned at the end of the trial. Just another few thousand dollars in an overall budget of millions to get this drug up and running.

I still have a few tests to complete including a core biopsy of the enlarged node under my shoulder blade, otherwise known as Fred. I also need both an echocardiogram and something called a multigated acquisition scan (MAS), not something I have had before. Turns out that the MAS will require me to be injected once again with a radioactive die that will measure the efficiency of my heart to pump blood. I read with interest that it’s a test that is considered unnecessary unless you have had various treatments such as a stem cell transplant. Which obviously counts me in. I feel that with the amount of radioactive material I have been injected with recently, I should definitely be glowing in the dark.

When I met with the haematologist last week he did talk about possibly putting my name forward for a different trial. He said he would need to try and work out which one he felt I would best respond to and would let me know. The second trial involves a drug called Glofitamab this drug has already undergone some trials with a reasonable success rate. So it will be interesting to see what he decides. I think from what I have read about things the Glofitamab trial has proved itself but the trial for BGB-11417 is a very promising idea. So I will leave it to him to make the best decision for me.

One thing I do know is that chemotherapy is at the moment not an option given how it has smashed my bone marrow. The fatigue factor is just huge in my life and with a consistently low red blood cell count I find myself without the energy to perform simple day to day tasks. Maybe after allowing time for recovery it might be time to consider more chemo but given also how refractory to different regimes I have been, I do wonder about this.

Despite the ever growing battery of tests required I am still positive about the phase one trial for BGB-11417. I have an appointment with my haematologist in a couple of weeks. So I would imagine that the days leading up to that would be like waiting for your school exam results to be published, have you passed or failed. So it will be with these tests, do I qualify for the trial or not. If not then I will be left wondering what other options are available, if yes then I will start the new treatment within a couple of weeks.