Hi everyone. I haven't been here in a long, long time. The boards are so different. It is taking me some time to get used to the new format.
My mom had her SCT on March 11th and had been doing very well up until a few weeks ago when her counts started dropping. As of Monday, her WBC was 1.68, her Neutrophils were 66 and her platelets were 93,000. She saw the doctor again yesterday and her counts had dropped some more (I don't have those numbers). He told her that there are no leukemia cells in her smears but that he wanted a bone marrow biopsy done. She had that this morning (she is being treated at the Cleveland Clinic) and we won't have any information until (at the earliest) Friday but most likely next week. He ordered all kinds of tests so the results will come in at different times.
I am wondering if anyone knows what would cause this to happen? Her 100 day mark is June 19th. She has had some slight GVHD - mostly diarrhea but nothing serious. Could the dropping counts be the signs of a relapse? She had no cancer cells when she had the SCT in March.
Thanks in advance for any help or information anyone can give me.
Polly
Counts can drop for a number of reasons. My counts have recently dropped a few weeks ago and I am over a year out. Anything from an infection, to GVHD can cause the counts to drop. Any sort of change in medication can do the same thing. The docotors usual thing is to order a BMB so dont be alarmed, especially so close to the 100 day mark, which right now would be about the same time the would do a BMB anyways.
~Frank
Thanks for posting and the reassuring info, Frank. Here are her counts from the beginning of May through June 1st. You can see that they were dropping significantly each time she went for labs. I was just reading on the AML board and saw a few posts where dropping counts were a sign of relapse so I am a little anxious to say the very least. My mom is 66 years old and I don't know that they would do another SCT on her or if they did, she would be able to survive it. She developed congestive heart failure from all of the chemo she had prior to the SCT and is very thin and weak. Her doctor told us before the SCT that if she didn't have the transplant, her survival chances were only 1% - 2%.
On May 4th her WBC was 3.80 and her Platelets were 181,000 and RBC was 3.85
On May 18th her WBC was 2.88 and her Platelets were 128,000 and her RBC was 3.70
On June 1st her WBC was 1.97 and her Platelets had dropped down to 111,000 and her RBC was 3.37
hey,
cmv reactivation has an effect on the bone marrow. my platelets were dropping but recovered after treatment for cmv started
sc
Hi, What is CMV reactivation? Thanks!
cmv is cytomegalovirus, one that is present in most people and remains inactive because the immune system is enough to supress it.
in bmt patients, due to a weak or recovering immune system, the cmv virus becomes active usually with no visible symptoms. though as it begins to increase in numbers as viruses multiply, it causes myelosuppresion (suppression of blood cells production in the bone marrow). its treated with an anti-viral drug called valgancyclovir that gets rid of it till its not detected in the blood.
tests showed cmv was active and platelets were falling. the drug caused a decrease in virus and increase in platelets at the same time.
i do not know if it causes drops in wbc as well.
sc
I would no be to concerened at the moment. Wait until you hear the results. like I said anything could do this, but I remember when it happened to me every time I thought it was relapse, so I dont blame you for hinking the worst. You have a better chance of it being something totally unnreleted to leukemia.
~Frank
Dropping counts can be a sign of relapse. They can mean any number of other things, as well.
These are significant drops, so it's good the doc is doing the BMB to make sure there's no relapse. But, again, a lot of things can drop counts. Mine started dropping about three years out. No one knows for sure but it looks like there a decrease in the cellularity (blood cells in the marrow compared to fat cells) might have been the culprit.
No one knows why it dropped and my last BMB showed it back to normal levels. My counts seem to be coming back up, too.
While that's pretty rare and I'm not suggesting that's what's happening to your mom. it does show how far out counts can drop and how varied the cause can be. As for CMV they probably told your mom if she tested CMV positive or negative before the transplant. If she tested negative and the donor was negative, it's not an issue.
Blessings
It's good that they're doing the bmb. If nothing else for peace of mind. If she and her donor were a cmv mismatch, they would be testing for cmv regularly at this point. It's typical for counts to be odd around day 60. In her case they've lasted a while so I'm glad they're doing the bmb.
About 9 months out my counts started to drop and the doc ordered a bmb. It turned out that a couple of my meds weren't getting along. They cut both of them out and my counts bounced back. I hope it's something as simple as that.
Take care,
Kelly
Keeping my fingers crossed for you! Let us know how the BMB comes out.
Hi everyone. Thank you all so much for the information. It's all so overwhelming. The biopsy was yesterday and they said we might have preliminary results today but my mom has heard nothing. An interesting note is that she had been taking three 500 mg Cell Cepts a day. On Wednesday, her doctor lowered the dosage to one 500 mg Cell Cept/day. I did some internet searching and read that Cell Cept can lower the WBC significantly. She was also taking 3 Prograf (sp?) each day and the doctor lowered that to 2 a day. Would that have anything to do with her counts being lower or do you think her doctor is just trying to see if her counts go back up if he lowers the medication dosage? Also, do those meds affect platelet counts and neutrophils? I have so many questions and as good as the Cleveland Clinic is as far as their treatment goes, I have to say I have not been impressed with the way they communicate with the patient's family even when the patient asks them to communicate with her family. The bone marrow transplant coordinator told my mom she would ONLY communicate with her. One phone call to my mom and that was it. That part has been very frustrating for me as I was very involved in her care when she was at the other hospital for her induction and consolidation. The doctors, nurses and staff at that hospital were much more willing to communicate with family and friends if my mom gave her permission.
Again, thank you for the information you have provided. It has been very helpful to me.
Polly
Tex, When your counts started dropping 3 years after your BMT were you relapsing or was it just because of the decrease in cellularity? Did you relapse after your BMT? Thanks for all of the info. I don't know how you are able to keep up with so many different people and situations but you always seem to post when someone has a question. I am very thankful for your knowledge and information. Polly
Tex has never relapsed post SCT (sorry for answering for you tex). ANY changes in meds can effect counts, but you probably are going to keep coming up with scenarios and thinking the worst until you get the results. Your best bet is to just try and relax and wait for the results. Easier said than done, but if the doc didnt say "Thgis is or could be leukemia" I would not be worried.
~Frank
Frank,
Thanks. I didn't think Tex had ever relapsed post SCT, but wasn't 100%. The doctor told my mom it could be leukemia, a virus or donor cell engraftment(??). He said because the peripheral smear didn't show any blasts, it was encouraging. I don't think her blood smears showed any blasts when she was dx in October but I could be wrong on that too. After that all he said was bone marrow biopsy. My sister was at that appointment and said it was the quickest one she had ever been to. I went to the biopsy yesterday. It's going to be a long weekend. . . and I am not even the patient.
Well hang in there! waiting is by far the worst part. I pretty much live on xanex while waiting for results ![]()
~Frank