Is Remission Possible

[Data]

My last biopsy showed I had monosomy 7 in 10 out of the 20 cells analyzed as the only cytogenetic abnormality. He was suggesting a stem cell transplant which I agreed to. At that time my blood counts were:
WBC = 1.9
Hb = 10.6
Platelets = 40

My counts (checked yesterday) have gone up to:

WBC = 2.7
Hb = 12.4
Platelets = 57

Is there such a thing a spontaneous remission? I am wondering if I should proceed with the transplant.

Any ideas???

Thanks


Data

[Neil Cuadra]

I'm glad to hear that your counts are up. Do you know your ANC? It would be great news if it was increasing too.

Spontaneous remission isn't unheard of, but your counts still have some distance to go, and these results don't tell you what's going on with the genetics. One CBC doesn't necessarily indicate a trend. What pattern do you see if you look at the sequence of CBC results over time?

Many people facing transplant face the tough decision about whether to wait in case of improvement, with a risk of getting worse, or schedule the transplant as soon as possible. It's worth a conversation with your doctor to ask if these results put any doubt into the plan. This is where the doctor's knowledge and experience will pay off.

[bailie]

I get CBCs constantly, at least one a week and sometimes more often. They can vary considerably just in a couple of days. I have charted mine for two years. Like Neil said, it is the trend that is significant.

I think it is very important to have the transplant in the best health possible. I did Vidaza then Revlimid for eight months prior to transplant to get my blasts down and CBCs into the normal range.

[Data]

Neil,
Thanks. I completely understand about not looking at a single CBC. One of my favorite sayings when someone quotes a single lab value is "a single value doesn't make a trend". There were two CBC in between the two CBCs I quoted in my original post and the levels were trending upward. My ANC is bouncing around a little (0.8, 0.83, 0.67, 1.0). I don't have the full CBC from Tuesday - the EPO clinic just called me today and gave me a couple of the values (namely Hb) and told me to hold the Procrit. I can get the full CBC results on Friday (three days after the labs are drawn). I definitely plan to talk to my doctor and get his perspective.

Thanks again and have a Merry Christmas.

Data

[rar]

Even when there is a trend it may be difficult to make sense of. I had platelets of 70 +/- 10 for 12 readings over a 3 month time frame. Then in 2 weeks I had a doubling in platelets. I had 140 +/- 10 for 8 readings over a 2 month period. My 3 oncologists could make no sense from it and say at least platelets are close to normal.

A year and a half ago after 2 months on an experimental drug oh a phase 1 trial my blasts went from 14% to 1%, WBC, RBC, and platelets were still all critical. 3 oncologists had the same advice. I was in very good health, blasts were under control, anything other than a transplant is only temporary, do the transplant now. It was about 3 weeks to the transplant. MDS appears to be cured with a few speed bumps in the meantime. I still on immuno suppresents and some residual GVH. I received good advice from my doctors. If you have confidence in them listen to your doctors.

Ray

[Cheryl C]

After getting all ready for a transplant my blasts dropped from 10% to 2% and have been stable ever since (often 0%). I still have MDS, but I live a normal life, with regular blood checks and IgG infusions 4-weekly.

[Data]

Originally Posted by Cheryl C

After getting all ready for a transplant my blasts dropped from 10% to 2% and have been stable ever since (often 0%). I still have MDS, but I live a normal life, with regular blood checks and IgG infusions 4-weekly.

Cheryl,
That is encouraging!!!! Thanks for the info. Hope you continue to do well.

Merry Christmas

Data

[Data]

Originally Posted by rar

Even when there is a trend it may be difficult to make sense of. I had platelets of 70 +/- 10 for 12 readings over a 3 month time frame. Then in 2 weeks I had a doubling in platelets. I had 140 +/- 10 for 8 readings over a 2 month period. My 3 oncologists could make no sense from it and say at least platelets are close to normal.

A year and a half ago after 2 months on an experimental drug oh a phase 1 trial my blasts went from 14% to 1%, WBC, RBC, and platelets were still all critical. 3 oncologists had the same advice. I was in very good health, blasts were under control, anything other than a transplant is only temporary, do the transplant now. It was about 3 weeks to the transplant. MDS appears to be cured with a few speed bumps in the meantime. I still on immuno suppresents and some residual GVH. I received good advice from my doctors. If you have confidence in them listen to your doctors.

Ray

Ray,
Thanks for the input. Glad you are doing well and I hope you continue to do so.

Merry Christmas

Data

[Data]

Originally Posted by Neil Cuadra

I'm glad to hear that your counts are up. Do you know your ANC? It would be great news if it was increasing too.

Spontaneous remission isn't unheard of, but your counts still have some distance to go, and these results don't tell you what's going on with the genetics. One CBC doesn't necessarily indicate a trend. What pattern do you see if you look at the sequence of CBC results over time?

Many people facing transplant face the tough decision about whether to wait in case of improvement, with a risk of getting worse, or schedule the transplant as soon as possible. It's worth a conversation with your doctor to ask if these results put any doubt into the plan. This is where the doctor's knowledge and experience will pay off.

Neil,
You asked about the Neutrophils. Attached is a graph of my RBC, Hemoglobin, Platelets, WBC, and Neutrophils. Everything seems to be trending up except the Neutrophils. I have an appointment with one of my doctors (not the transplant doctor) in early January and plan to ask him about the trend. Any thoughts?

Thanks and have a Happy New Year.

Data