[Kelleyemery]

Just confused

by Kelleyemery on Wed Jan 22, 2014 11:49 pm

Feeling a bit depressed with the ups and downs of this stupid disease.

I was near the end of my first three months of chemo. Creatinine going down finally, GDR getting better. I had to miss a week because of weather. The following week I asked if we could lower the steroid because it was starting to get to me a little bit. The following week I go for chemo, they can't do it because the neutrophils are low and my creatinine and GDR are back to when I started three months go.

So discouraging.

I don't know if the changes as from missing a week or lowering the steroid -- any input?

Whichever it is, I am worried about the quick change, figuring I won't get a very long response time. I am high risk and also have proximal tubalopathy, which I guess there are only one hundred known cases of. Anyone here have it?

Been doing this for months and still don't understand all my test results and such. As soon as I think something is good it changes to bad. I try to have a good attitude, but not today.

[Dr. Edward Libby]

Re: Just confused

by Dr. Edward Libby on Fri Jan 24, 2014 12:45 pm

Hello Kelleyemery,

You have lost nothing by missing a week of the steroids. As far as taking a lower dose, that can compromise your response somewhat. But there is no question that dexamethasone can be very hard to tolerate. So your oncologist has to balance the side effects of the drugs with the efficacy of the combination. If your kidney function is getting better that is an excellent sign. We want to try and protect and conserve your kidney function if at all possible.

What is the reason you are defined as high risk ?

[Kelleyemery]

Re: Just confused

by Kelleyemery on Sat Jan 25, 2014 8:10 pm

Thanks for responding. Was already a bit depressed and even more so with no responses of support. I am high risk because of the chromosomes and the proximal turbalopathy I assume. Do people do well on chemo and then all of a sudden go back to their beginning numbers? I think the worst part of all this is you just don't know what is going to happen from week to week, but I guess no one does really. Thanks again.

[Dr. Edward Libby]

Re: Just confused

by Dr. Edward Libby on Sun Jan 26, 2014 12:56 pm

Hi,

The reason I ask about why you have been defined as "high risk" is that sometimes this designation is made in error. So I wanted to know what chromosomal abnormality you have.

Yes, the disease can stop responding to treatment. If that is happening, your oncologist will try a different class of drugs and there is good chance that control can be gained over your disease. Are you seeing a myeloma specialist? This may be helpful if your disease is resistant so early in the treatment.

The current treatments for newly diagnosed myeloma are quite good and chances are that your myeloma will respond and possibly even disappear.

Hang in there ... learn about your disease ... talk to your hematologist/oncologist ... and get support from your local myeloma patient support groups.