Over the last 9 months, I have been a little worried about the subtle rise in my blood protein levels. I won't get into the specifics of the blood work or the tests and what they look for, as it will put you to sleep, but just know that I use the term "protein levels" generically to cover all of the blood work I have. The "protein" is essentially the cancer in my blood. It is not dietary protein and has absolutely nothing to do with that.
Although the increases still left me in the "normal" range, the continuous rise in levels made me very nervous. Was this beast awakening from his slumber? Average first remission time is 18-24 months. I opted to take maintenance chemo - a lower dose of Revlimid daily by pill - to keep the beast knocked out for a longer period of time. My oncologist was cautiously optimistic that it would 4-5 years before I would need aggressive treatment again. So I was scared.
Remission periods are unpredictable. In the case of MM, it is very difficult to predict anything given that every person's cancer is different and reacts differently to the treatments. However, the basic rule of thumb is that your first remission period is the longest. Each one following will likely be 1/2 the length of time of the first one. Soooo....my concern was that if I was coming out of remission at the 2 year mark...my overall life expectancy....well...you do the math. I also want to stress that this is the law of averages...not carved in stone. I am hopeful that I will be one of the few folks with this disease that live for 20 years with it...but I also have to be realistic. Average life expectancy just increased from 4 to 5 years with the drug protocols they have used over the last 5 years. I do not think that I will be average...I have always been an over-achiever!! I am young (in the MM world) and otherwise very healthy. I have responded well to treatment to date. I am 100% confident that I will be alive well past the "average" life expectancy. :)
Anyway, this past week I saw both of my oncologists. We talked about my test results and about my fatigue (see previous posting). My protein levels have stabilized. They indicate that there was some action but it is not continuing to grow. Just a little blip. Last visit we talked about increasing my chemo...now we are talking about trying a little reduction to see if my energy levels come up. Phew!!
One doctor suggested a medication vacation or holiday...this means taking some time off of the meds. The other doctor cautioned me that if I did that, and then decided to go back on the Revlimid, my insurance company many not agree to finance it. What?! Revlimid is $11,000.00 a month. A MONTH! My drug plan agreed to cover 80% and the drug company is subsidizing the other 20% so I pay nothing. I could not possibly take this drug if it was not covered. I am not prepared to roll those dice. I will not come off the chemo. And it has only been 3 months since he wanted to increase the dose by half...so it is not the time to mess around with it.
When you take Rev for treatment purposes, you take it 3 weeks on and one week off. For maintenance, it is a lower dose but taken every day. Both doctors suggested trying a 3on/1off approach for a few months to see if it makes a difference. So that is what I plan to do. Just a few months and then decide to continue or revert back to a daily pill. Wish me luck!!
The added benefit to taking it 3/1 is that my risk of developing a secondary cancer is reduced as well. I was cautioned before taking this drug that it can cause development of secondary cancers -- most commonly treatable cancers, like bladder cancer, thyroid cancer, solid tumours, non-melanoma skin cancers, etc. Apparently that risk is lessened in people taking the drug on a 3/1 cycle. Yay! Winner winner chicken dinner!! An added benefit. I like free bonuses!! I'll take it! LOL!!!!!
Anyway, at the end of the day, I am very relieved that my cancer beast did not wake up. He simply rolled over and farted and went back into a sound slumber. Sleep on, you bastard, sleep on!!
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