If you have been following my blog, you will recall that I was originally to have been admitted for CAR-T cell treatment in late August. That had to be postponed and in order to control my cancer activity, I was then prescribed a second chemo cycle. That ended on 20th September and the trial has then required a minimum 2 week "washout" period in order that the medications leave my system. I have now received the hoped-for revised schedule.
This week I had a further PCR test to ensure that I am free from COVID-19 before being admitted. On Monday I will attend a workup clinic when my general health will be checked. A second PCR test will be required on Tuesday. Then on the Thursday, Margaret will drive me to the BHOC. She cannot go in so I shall have to attend with my suitcase. My first appointment will be to have a PICC line fitted. I've had these on two occasions in the past and they remove the need for injections and cannulas.
After the PICC line, I am to contact the ward to see whether a bed is available. If not, I shall have to ask Margaret to come back and collect me! Thank goodness she has plenty of fuel given the current problems. Hopefully I will be admitted.
I do not underestimate the effect my treatment will have on Margaret. For some time I have minimised my trips out and have effectively been shielding again. Margaret was able to attend a literary event in Bath last Saturday but now respects the need to avoid any infection. We can minimise the need for her to visit me whilst I am in hospital but thereafter it will be for her to drive me to the multitude of appointments needed to monitor the effects of my treatment. I have always described Margaret as my supporter but maybe she will have to take on the role of my carer for some time. The trial requires that I cannot be re-vaccinated until after day 100 which means that I shall have to maintain shielding for some considerable time. Inevitably this will also affect Margaret.
It is my intention to provide a single blog post which will be updated blow-by-blow during my treatment. This will depend on getting internet access and only if I feel well enough; we'll have to wait and see. The schedule first requires 3 days of high dose chemotherapy in order to make space for the CAR-T cells. There will then be two "rest" days to enable the chemo to leave my system. Only then will my cells be infused. From then on my time in hospital will be needed to monitor and treat any side effects.
As the blog title indicates, this clinical trial is known as Cartitude 4. Each trial is a learning process and has potential benefits to treatment options. It is now 10 years since I was first diagnosed with myeloma. This cancer is not curable but is treatable. I have received a variety of treatments but as time goes on, the number of drugs that I will respond to is diminishing and also the amount of time in remission. This trial gives me the potential benefit of a longer control of my cancer. It is a phase 3 trial and not without risks. My clinical team are rightly keen that I understand what is ahead of me. There is a common risk of Cytokine Release Syndrome when the immune system goes into overdrive. Also common are neurological problems and effects on blood cells. Fortunately other potential risks are less common. All the risks range in seriousness from mild to severe but....
Keep safe, keep well and KBO
Stephen
