5 years and counting……

May 2007 – May 2012.
I am rejoicing! 5 years is considerable time and I am indeed grateful that I am still around blogging about my myeloma journey. Admittedly there have been some difficult situations and struggles but on the whole, it has been an upward trend (I don’t mean the m-spike, that one is steady). I mean I am coping very well. My doc says my MM has reverted to MGUS-like state. I am not sure if he is just giving positive vibes or making medical sense. But really to be certain, we (I) have to have BMB to check on the gene signature and plasma cells in the “factory”.

BMB is scheduled on 12th June after end of this cycle. I will also have IVIG to boost the immune level (according to doc, each IVIG he prescribed should be effective for 6 to 9 months).  The m-spike chart for the first 3 years was “wildly” up and down, i.e. a short med free holiday will see the numbers climbing. But in the last 2 years, my doc has come up with a combined treatment protocol for both MM and MDS – this low dose and well-spaced program is able to keep the m-spike steady and under control and hopefully to reduce it further. It is now at 3.6g/L 
For MM, Revlimid 10mg and dexa 20mg weekly for 3 weeks on and 1 week off. I had negotiated for 2 weeks off but it may not doing good, so back to just 1 week off. Zometa every 3 or 4 months.  For MDS, Vidaza at 6 monthly interval seems to be doing the job in keeping that part of the equation balance.

I am rejoicing BECAUSE my weight has come back down to pre-MM! and I don’t feel so bloated. I dread the effects of dexa and hope that continuing at 20mg would not add weight on me. Dexa makes me hungry and I try not to give in to the hunger cravings and eat small or half portions. 

I find going along the non-SCT route has its pros though sometimes I wish I don’t have to take any medication! I really get so tired of having to pop all those pills and bearing its side effects . Though I have to admit mine are rather mild compared with what others have to bear. But I really dislike the tiredness and fatigue. Then again those who go the SCT route are still strongly recommended to go on maintenance and they go on the same kind of dose and regimen that I do. So where is the benefit?  And then again SCT does not guarantee a longer remission, most relapse and have to get back to treatment. But one serious disadvantage is that some take almost 1 year to recover their immune system from the SCT and for some the weakened immune system stays weak. That is besides having to encounter some serious infections during the SCT itself!  So SCT does not sound too appealing to me, definitely not at this point in time.

So I am thankful for the route we (with our doc) chose. It gives me a reasonably good QoL (Quality of Life). Hoping and praying that this will still work for me … 5 years and more…. 
By GOD’s grace!!!