I woke up twice during the night of 19/20th with a completely dead left arm… I have had this feeling before (to a lesser extent) when I have slept heavily on a limb but this time the arm was hanging down at my side. Janet managed to get it back to almost normal on both occasion but my hand remained numb and 'heavy'. I woke in the morning and went for my consultation, complete with heavy hand. The worst news for me was that it was impossible for me to pick up and play guitar.:'-( 🙁
I had my bloods taken and was seen by my original consultant. She is fine but I had hoped for my now regular consultant… we seem to have established a good relationship.
Any, it didn't matter. Before she had had the chance to switch on the computer Janet jumped the gun (first time ever) and asked the question: 'Is the Velcade working?' To which the consultant said 'Oh Yes!'
We had to wait while she examined the top sheets on my file and the results on the computer. We had been reminded in the Day Case Unit that we had to achieve 50% of my starting point by the half way mark of the end of Cycle 4 – I had had 2 Cycles to this point and this was my first interim results so we were anxious to see how we were getting on and by exactly how much we had reduced (if any) the light chain plasma cells reading… our starting point was 250 and we were due to go start my 3rd Cycle straight after this consultation.
My consultant looked up and said, 'I see that you are quite anaemic (HGB 8.3) and I understand you are having some Peripheral Nueropathy problems but we can try and help that by reducing your Velcade dose from 2.77 to 2.1, we can afford to do that.. we can even drop it some more if it persists… but your treatment is working very well… (Janet and I are fit to explode by now)… you started at 250… no, 264 at the start of V1/1… and your reading today is… 13. (Big Smile).
Janet,,, '30?' Me (the deaf one) 'one three?'
Consultant: Yes 13, one three.
So… I have nearly made it. CR (Complete Response) 0… which I had hoped to achieve by Cycle 6 almost in touch after 2 cycles. In the words of the Day Case Lead Sister when she asked 'Absolutely fantastic, no truly, an absolutely fantastic result… Wow!'
We were sent away for 2 hours or so while they made up my Velcade and we celebrated by ordering our new car and shopped at a new ASDA. We returned for another 1.5 hours wait but we didn't care. The Day Case nurses said that there is a very good chance that the PN in my hands (less so in my right) will return to normal in the days after treatment and the inability to play guitar is the only blot on the landscape after this wonderful news.
The consultants want to see me on the Monday following the end of Cycle 3 to see where we go from here. I was told that when I achieve CR that they will give me 2 more Cycles to make sure. Because I started Cycle 3 on only 13… and taking into consideration my PN problem… there is a chance that they might consider this cycle as one of the extra 2… with Cycle 4 as the final Cycle of my 'Velcade Treatment' and then… remission. I do hope so.
After such a miserable start to yesterday, today life seems very sweet… even if due to the 8.3HGB I am having to celebrate from my bed. 😎 🙂
Dai.
DaiCro 13 years, 4 months ago.
