I’d like to say I am stable but really not, it is progressing. Since July 2012 where m-band was at its lowest, 2.33g/L, the level hovered around average of +/-3 for a good 6 months. These were the readings with maintenance dose of Revlimid 10mg and weekly dexa 12mg.
But once I got off Revlimid, the marker slowly crept up.
I have been off Revlimid for half year now, Dr C thought it may be a good idea to give me break. It was definitely good, firstly blood count is normal for everything …. wbc at 6.9… wow…at this level, can fight most infections! liver function back to the black. Obviously, I can see that Revlimid does mess around with my blood count! And of course, no Revlimid means less fatigue! I literally can go a full day without sudden onset of tiredness and have to quit whatever I was doing. I really sensed the well-being and I like it. I want to stretch my day with the extra energy!
But it looks like I cannot do without some medication. All along I had this feeling that the marker would move. I have heard enough mm specialists telling their patients to keep the “lid” on and don’t let the snake get out of the basket…(Dr Richardson – drug holiday? Yes for those who have achieved molecular remission, otherwise not advisable. With residual disease, important to keep it control if patient is able to tolerate the regimen.)
Keep the mm under control!
…..maintenance…maintenance….maintenance
Anyway, the absolute number of 5g/L is not worrisome, so just get back on the bandwagon. Dr C has suggested Pomalyst which received FDA approval in Feb 2013 but we’ll need to get HSA approval to bring it in.
The view is that I have been on Velcade (induction) and Revlimid with dexa since May 2007; while these drugs were able to bring the myeloma to a low level, it has not cross over to remission, hence it may be timely to consider introducing Pomalyst. Starting dose at 2 mg 3weeks on and 1week off with weekly 10mg of dexa.
So if I start to look puffy again, blame it on the dex. And if I suddenly withdraw and take off, it could be fatigue.
But I am truly thankful for the past few months when the days were easier and better. I am also thankful that there new medication like Pomalyst and even more newer medications – monoclonal antibody – elotuzomub, daratumumab etc – these, I think may do the trick and switch on the immune system. We’ll have to wait patiently.
A friend said she always pray that I have good quality of life, with this on-going “chronic” disease. Yes, the answer to my myeloma (until a cure is found) is to get a sensible balance of good medical care and adequate level of medication and aim at a good quality of life.
I know there are others with more aggressive myeloma, I am so sorry and sad that yours may be a more difficult journey to travel. I have met many who have fought and lost the battle. But one thing I saw in them, they were brave and courageous. That is what counts, the life we lived however long or short.
Creator GOD, please help each one of us.
2 Corinthians 12:9 “my grace is sufficient for you, for my power is made perfect in weakness,”