I had my appointment at the hospital today with Dr Lee my consultant. I have just finished the first cycle of the CTD treatment so it was a catch up of how I am doing and what they will be doing for the second cycle.
When I arrived they took the usual bloods and then I had to wait about 20 mins before seeing Dr Lee. He brought up my case on the computer and already they had the results from the bloods they had just taken. That impressed me, I was surprised at how quickly they turned them around. He ran through the results and there were lots of them on the screen. One of the more interesting bit was a graph showing the paraprotein levels before starting the treatment to where it is now after 4 weeks. Dr Lee was very please with how the myeloma is responding to the CTD treatment. He explained that a normal persons (always knew I wasn’t normal) level for this reading was 35 (not quite sure what this reading but I was happy to listen) before starting the treatment I was 85; however already just after 4 weeks mine had reduce to 37.5 which was pretty impressive.
The minimum amount of treatment they give anyone is 4 cycles, normally it is at least 6. They are looking at only giving me the 4 as I am responding so well.
He has also made some alteration for this next cycle. One of the good things is that I only have to have one day of the cyclophosphomide (chemo). He has increased the Thalidamide from 100mg to 150mg a day. This is what is having the most dramatic effect on the myeloma. He has also started me on a cycle of Septrin (co-Trimoxazole) which I have to take on a Monday, Wednesday and Friday. Unfortunately this comes with side effects, which can be either sickness or a rash. Hopefully I wont get either, but knowing my luck I will get both! I am also on Bonefos (Sodium Clodronate) now which I have to take everyday for the rest of my life to strengthen my bones.
I have a new spreadsheet with all of the tablets on showing which ones I have to take on which days etc for this cycle. The list so far is:
- Cyclophophomide
- Thalidamide
- Dexamethasone
- Allopurinol
- Fluconzole
- Ondansetron
- Tinzaparin injection
- Lasopraz
- Co-Trimoxazole
- Bonefos
- Movicol
- Lactulose
I had to wait over an hour for the pharmacy to get the prescription together at the hospital, but I came away feeling really positive with the results so far. I hope to continue with the good progress so far and then look at getting the bone marrow transplant sorted in about 12 weeks time.
