So I am back from Mayo and as you can see by the look on Dr. Buadi's face he is happy.
Am I in complete response? No. Am I surprised? No. Dr. Gregory did a good job preparing me before I left and I am grateful. Am I responding? Yes. Do my numbers continue to improve? Yes.
The thing is Amyloidosis is not curable. In most cases it is an illness you manage. While some are lucky and go into a remission or a complete response, many do not.
Aside from a few minor hiccups I've led and continue to lead a pretty privileged and wonderful life. I think to some extent that has allowed me to believe that I would be one of the lucky ones who would go into complete response. So far I am not. Here's the thing though. The illness is being managed and that is a success because for most of us with Amyloidosis that's the best we'll do and there's nothing to say I may not go into complete response sometime in the future.
The new plan is to continue the velcade but instead of 4 weeks on and one week off I will go to 4 weeks on and 4 weeks off. This is a maintenance plan and the thinking is I will continue to respond with this treatment. I am thrilled because this ties me down a lot less than the other schedule.
Dr. Leung, my nephrologist at Mayo prescribed Aranesp. Aranesp is a Darbepoetin alfa injection used to treat anemia in people with chronic kidney failure. This should help with my fatigue. He has also prescribed Spironolactone. Spironolactone is used to treat certain patients with hyperaldosteronism (the body produces too much aldosterone, a naturally occurring hormone that increases the reabsorption of sodium ions and water and the release (secretion) of potassium ions in the distal convoluted tubles of the kidneys.) Too much aldosterone can increase blood volume and, therefore, increase blood pressure.
I am scheduled to go back up to Mayo in 6 months and it is my intention to use these next 6 months to get myself in better shape. When I relapsed at about this time last year I was still so weak from the Bone Marrow Transplant that I started my chemo treatment in pretty bad shape. I want to build up my stamina and strength not only to improve the quality of my life but also so that if I relapse again I am not so weak.
I continue and will continue to back off of the steroids. The key is to keep my creatinine under 3.5. If it starts to go back up then we'll reassess. This is the bad part of not being in complete response. As long as I continue to produce the amyloid protein I am not a candidate for a kidney transplant so managing my kidney health is paramount. Luckily my kidneys can function well enough at my current creatinine level that I do not at this time need to worry about dialysis or a transplant. In fact I am losing less protein in my urine even from when I was here last Sept. which is great news.
Dr. Buadi would like me to consult a sleep clinic. I guess it is quite common for amyloid patients to develop sleep apnea and everyone who has had the misfortune of being around me when I sleep says I appear to be struggling to breath. I know I am not waking up rested.
I am trying to think if I've forgotten anything. My attitude is good and I feel a little less like I am treading water now that I have a new plan. I needed to accept the reality of the fact that this illness for me is in all likelihood something I will manage for the rest of my life. I think there was a part of me that always knew that because I named this site Susan and Amy not Susan beats Amy. Amy and I are in this together and I just need to keep the upper hand. However, she is still an unwanted guest and would not be missed if she decided to leave.