Wading through the ups and downs and ins and outs of a chronic cancer can often be challenging. I have been on Sprycel for three years; I would say that given the risks and complications of living with CML, I am doing quite well.
The pain issues are the most difficult to deal with, but since I have had two consecutive PCR tests that were negative; I am reluctant to jump ship. I am hoping to maintain the negative status for two years as there are trials for going off of Sprycel, after a two year period of being PCRU and I am approaching the one year mark!
That being said, I am still in search of the Holy Grail! I want the lowest dose possible; I want to maintain PCRU, which means holding the cancer at bay, while minimizing the side effects. So, for the past month, I have been taking 70 mg of Sprycel, with Bragg’s vinegar, 7 days a week. This past week the pain in my feet has escalated, so I took a two day break.
Because of this two day break, I decided to try 100 mg, 5 days a week, with a two day break. My oncologist would prefer that I stick with the 100 mg, 5 days a week vs 70 mg 7 days a week as he believes that CML responds more favorably to the higher dose than the consistent lower dose. He also believes that my body will benefit from the breaks which will help to alleviate my side effects, including pleural effusion.
I am on day three of 100 mg and I hate to admit it but the numbness in my hands is returning; that disappeared on 70 mg. My hip muscle and joint pain is also returning. I have two more days prior to my next break; it will be interesting to see what happens.
My next PCR test is in April; my hope is that it will still be negative, and that I will be able to go to 70 mg, 5 days a week. Only time will tell.
It is a constant balancing act!