Yesterday hiked up tiger mountain. 3 miles up, 2000 ft. of elevation, took 1.5 hours, max heart rate 151. 45 minutes down. Kicked my butt. I used to do this with a heavy pack in under an hour. I get my transfusion next week, I suspect hematocrit is about 27, normal for me now at fill up.
I get a Google Alerts everyday for Myeloma. Your blog showed up today. You seem to be one of the few myeloma patients that has not rushed to treatment. Some people seem to be able to coexist with the myeloma cells without too many problems. Your normal blood productivity does seem to be compromised. The other common problem is bone involvement. About half of the myeloma patients get diagnosed because of a bone fracture. My wife fractured three of her vertebrae a little over two years ago. She has had very little mobility since. She only walks to the bedside commode or the bathroom when she is doing better. The myeloma can silently destroy your bones. There are some easy urine bone distruction tests or bone density test that can check for myeloma bone involvement. Have you had any of these? You said your total protein was 4.2. How much of this is due to the myeloma? This is determined by the blood test SPEP.
ReplyDeleteJerry, thanks for your comment!
ReplyDeleteCorrect, no treatment yet other than transfusions about every 6 weeks, 3 units. My only symptom is fatigue brought on by anemia. Mine is described as "smoldering". My hematocrit is down to about 27 each time, and each unit is supposed to bring it up 3 points. My doc has bone surveys done about once a year, and so far no involvement noted. Have had a couple marrow biopsies, and blood tests every 6 weeks. The doc looks at lots of blood data, which frankly I don't yet fully comprehend. So I don't know how much protein due to MM.
Sure sorry to hear about your wife's situation. I had never even heard of this disease until I got it. I hope progress is made on treatments. My doc wants to treat conservatively, and maybe for me that will work since I am otherwise pretty healthy, but recently I have read that more aggressive treatment seems to prolong life. We shall see.
Brian, I am still a little puzzled by your doctor saying your myeloma is smoldering. I thought that label was for asymptomatic myeloma. You have the symptom of anemia and require transfusions. What does your doctor say is causing your anemia?
ReplyDeleteWhat type of bone scans have you had? If it was just x-rays they do not detect early bone involvement by myeloma. Myeloma is a silent killer of bones. You won’t know it until you have a fracture unless you have PET/CT and/or MRI scans.
I don’t like labeling myeloma. Myeloma is patient specific. I think you should treat myeloma like an enemy. It can kill you. Know as much about your enemy as possible. Know where it is, how much there is, what it is doing, and what can I do to kill it. If it is being lazy and not causing you any harm then you might just want to watch it. If it is massing and causing you problems then you might want to do something sooner rather than later.
Jerry, I don't know what to tell you. I think, but am not sure, that some of the blood chemistry needs to reach certain levels before it has progressed from smoldering to next level. It is the myeloma cells crowding out the others that is causing the anemia.
ReplyDeleteBone scans have been xray. Thanks for the heads up, I'll ask the doc about other scans.
SO far mine has been lazy, so the watch and wait approach. All the time new therapies coming along giving us a better chance.
I appreciate your comments.