Things have been progressing pretty well for me over the last few months. Especially after some fairly grim times earlier this year. With those improvements in health I have written less and thought it was about time for an update. The treatment I am receiving in the clinical trial for Glofitamab appears to be working and my Lymphoma is slowly disappearing.
in 2020 to check my progress and before a Stem Cell Transplant I had three PET scans. Being checked for acceptance into the Glofitamab trial meant one more scan and then as part of the trial, one every nine weeks. Making the scan I had, on Monday, this week my seventh PET scan in the last 17 months. When I retired to bed that night I felt sure that the build up of radiation from all the scans might be causing me to glow from the inside. I even lifted the bed covers to check. Seriously though, I do wonder if the radiation does all flush out as quickly as they say it does.
One thing I have learned over the last, almost two years, is that you need to stay on top of your own treatment. A number of times I have had to chase the hospital for an appointment or test and so it was again this time. When the PET scan centre rang me to book my scan we had a long conversation about the need to complete the scan before my next infusion, as per the trial protocol. They sent me an email to confirm the appointment but foolishly, having already done this six times before I never even bothered to read it. So of course when I turned up last Wednesday for the scan I had arrived on the wrong day. If I had simply checked the email I would have seen they had booked it for the day of my treatment the following Wednesday, and would have been able to rectify the situation. DUH!
Of course Murphy’s law applied here with no other appointments available prior to the one they had already made for me. A phone call back to the Clinical Trial Centre to see if they could work their magic on the appointment schedule, was successful. Friday afternoon at 2pm, they could fit me in. Only to receive a call Friday morning to say the machine wasn’t working and they would reschedule but had no idea when that would be. Thankfully it must have been a fairly simple fix as they called me Friday afternoon with an appointment time for Monday. Since they don’t usually do scans on a Monday so they used this as a catch up day for all the missed scans from Friday.
Ever since my first lots of chemotherapy in 2016 its become progressively harder for anyone to find a useable vein, either for an infusion or like on Monday a PET scan. My right arm veins are so heavily scarred that it’s impossible to use them, but usually my left arm provides something useable. Although sometimes even after they have found the vein it has no blood flow making it unusable. After 45 minutes of fluffing around and three attempts the nurse finally succeeded in placing the lure on the inside of my wrist. This is not a place I would ever recommend you choose to have a lure placed. It is the most painful and uncomfortable spot you can possibly imagine. When the nurse removed it she told me to expect a large bruise which you can just see starting to develop. Oh the joy’s of having cancer treatment. 😀
I assume that lots of people like me will keep their scan results and compare one report to the next. Although I know that my reports show continued improvement and I have learned what some really longwinded medical terms mean I still get confused reading them. I don’t understand why they talk about something in one report that they don’t mention in others. In my latest report they talk about the node in around my Aortic Arch (near the heart) that hasn’t been mentioned in 3 reports, I thought it had resolved itself. Sure its only low level activity with a Deauville score of 2 (1 is lowest 5 is highest) but mentioning it now just makes me confused about why?
Because of the Covid 19 lockdown here in Auckland I had a phone consult with the Haematologist this time so didn’t see the report until after the conversation. She calls the results amazing and I am not going to disagree with her. Certainly comparing PET scans from the beginning of the year to now the difference is massive. She still won’t use the words total remission and I guess that’s true as there is still low level activity but I’m hopeful that day is coming soon.