Acute Myelogenous Leukemia (AML) Support Group

Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.

307 Members

1,142 Posts

0 Online

jandrew1032 02/27/2015

Hello all,

Julian has been home for about a month now and has been doing well. He has had weekly blood work since we left Minneapolis. While we were in MN, all of his counts were awesome and mid-range. WBCs were 7-9 range most of the time, ANC 3,000-5,000 range, Hem was coming up at around 11, and platelets in the 300s. Over the past four weeks, his WBCs were slowly dropping (6.6, 6.4, 6.1) and his ANC was holding steady around 3,000. Everything else was the same. This week, I found out that his WBC is now down to 4.9 (5.5 is the low end of normal for his age), ANC is now 2.3, platelets are 272 (down from 316 just last week), and Hem has held steady at this point. I know these are not terrible numbers, but this is exactly where his counts were about one month before we learned that he had relapsed, and I am panicking! Plus, his WBCs and ANC have not dipped this low since early December. His doctor says these are normal fluctuations, but in my mind, "fluctuations" include some up and down, not just down. I am so worried. Is there any possible explanation for this besides early relapse? He has not been sick at all. He looks so good, and now I just don't know what to think. Has this happened to anyone else?

Jacki

worriedmom2014 02/27/2015

Jackie

Jeremys numbers dropped too and I think Tonys did also but they slowly came back up. I am happy to read that Juliann is doing well.

Juliann is in my prayers.

Hugs and prayers

Karen

mtnbyker 02/27/2015

I am 14 months post transplant today and my numbers still move around. I had my numbers change by quite a bit in 3 days time a little while ago and then come back up the next week. I try to hold myself to the if the doctors aren't worried than im not worried. easier said then done I know.

I pray for your little guy and your family every day. One day at a time.

dave J

jandrew1032 02/27/2015

I hate typos...that title was supposed to be "scared." Anyway, I appreciate your replies. Part of me is feeling a lot better...I have been telling myself that I am just too reactive to these changes, and of course, super reactive to anything that drops out of that normal range. The other part of me still fears that the counts might not come up. One thing that does make me feel a bit better is that his hemoglobin has been going up for the past month. I think if he were beginning to relapse, it would most likely be down a tiny bit, or at least not up. I guess time will tell. I know transplant is different than chemo only and that sometimes counts fluctuate more, but we have been so lucky up until now.

xuelan 02/27/2015

Jacki,

No worries. Those are normal variations. My WBC has varied as well, but always normal. Interestingly, except for my HCT which runs 38-40 (as opposed to my usual 45 before AML), my WBC runs around 5-6 thousand and platelets around 200 thousand. I don't worry about fluctuations. Don't hang on the numbers. JULIAN IS JUST FINE!

Cliff

dbrowncsuaedu 02/28/2015

Thanks Cliff -- my thoughts exactly. Some of the variations (especially in a few days that daveJ was talking about) could be due to measurement error. I would not think that all of our blood had the same content. So a lot depends on what blood happens to be there when they draw it. These are relatively small variations and there is nothing in minor variations that I have ever heard that predicts a relapse. If there is a major change then they will look into it, but even then it would take a BMB to confirm a relapse. Please let the med folks do the interpretation and if they feel for his case this is normal variation, then go with it. Everything seems quite positive, and you should be as well. Be as positive as you can with Julian -- kids can pick up on your being overly concerned. I don't mean to stick you with one more thing to worry about, but it is really important that you be optimistic. The fact that he looks good is probably more important than any blood numbers. If he were having a relapse he would not look good or feel good at all. Take care -- dave

Noodle65 02/28/2015

Jackie,

I empathize with your concerns regarding Julians downward trending numbers. Although I am chemo only and cannot compare to Julians situation, I have experienced I similar downward trend. Over the past six months my wbc, platelets and anc have been trending down. At last month's check my wbc was 3 platelets 129 and anc at 2. My med team was not concerned. Two weeks ago I ended up in the emergency roomwith kidney stones. The good part of the experience is my counts were awesome, wbc 6 platelets 150 and anc 5.5. I go for my monthly checkup Tuesday and I'm anxious to see if the numbers jump was due to the lab change. The main thing my team relies on is my pcr test that I have every other month that checks for signs of any inversion 16. I'm beating two year since dx on the 22nd and continue to praise God for healing me. Praying for Julian

Julie

dbrowncsuaedu 03/01/2015

Julie -- good point about the change possibly being caused by a different lab doing the measuring. No measurement is perfect. Consistent measurements from the same lab will produce relatively more reliable results, but the results are relatively more accurate because the same instruments are used in their analysis. But they could be consistently higher than actual (or lower). So it is better to have your measurements all done by the same lab, and not to take small variations in the absolute numbers too seriously. Large major changes -- that is a different story, and that is what the oncologists are looking for. -- daveB

amesch1 03/02/2015

Everyone is different but fluctuations do exist. I've experienced them and I'm sure a lot of others can tell you about their experiences too. The main thing is trends. Depending on past history it may be a trend to peak go down and then come up, etc.

leapea1208 03/06/2015

These are normal post transplsnt movements, it's not like chemo-only, it's a whole new immune system getting used to its environment
They will bounce back
We suffered w this many many MANY times
Xo

jandrew1032 03/10/2015

Thank you all! I am relieved to share that Julian's counts bounced back up some last week. We sent bloodwork for an engraftment study simply because his BMT doctor offered this to put my mind at ease. We should have those results by next week. Hoping he's still 100% donor! It's hard not to focus on every little thing. This week, he has bruises on his shins...more than what he has had. They are fading quickly, and his younger sister has bruises on her shins too. Somewhere in all of this, the line between normal and abnormal gets blurred. Sometimes I think that once we get to some undetermined point in time, I will stop worrying. I don't know if that point will ever really come. Some days I feel like I'm there, but other days I still think too much. I appreciate all of you and your experiences. Prayer is probably the strongest medicine for me. I pray daily for Julian and all of you. Thank you all for your support and prayers!
Jacki

Noodle65 03/10/2015

Jacki,

Such great news regarding precious Julian. What a blessing to have a med team that wants to reassure that all is well by ordering an engraftment study. I know we all look tho the day when we worry less. As a mother of three young children, you have weathered this with such grace and strength. I recall you sitting by Julian side during transplant while awaiting the birth of your third baby. I do not think I could have survived that daunting journey. You are such an example of strength to me. Having fear and concern for Julian is expected. I believe watching a child with this or any cancer must be so hard. Relative to bruising, my only symptom of aml, I still display them routinely. I get a weekly massage and often come home with a few bruises just from that. As long as they fade I relax. My platelets are still not on the normal range. So happy for your great news. Praying for you and Julian

Blessings
Julie

worriedmom2014 03/11/2015

Jacki

Great news! We will never really stop worring about our children but hopefully with time we can worry less. Julian is in my prayers.

Karen

dbrowncsuaedu 03/11/2015

Don't worry about not worrying -- I think some Moms get the feeling that they really need to be worrying all the time and if an hour goes by when they do not, then they must not be good mothers. I am not saying that this is you, but for sure it is some people. We have to admire their love, but it is not in the child's interest or the mother's to be in constant worry. Let me suggest that each day when you wake up you give thanks for one more day with Julian and that you decide to enjoy him to the fullest extent possible -- and let the Lord worry about the future. You only have so many days of life yourself -- don't squander them in worry and concern -- be as positive as you can and it will spill over. Just my thoughts -- ignore it if you think I am out of line. -- daveB

JesusisOurSaviour 03/11/2015

Dear Jackie,
I am so Thankful to Our God, for your wonderful news. I know most people if not all, who post on this board, are praying for precious Julian. He is a strong little fellow!!
He and your family are on my prayer list.
Hugs for you all.......Sandra

mtnbyker 03/11/2015

Sandra I think Julian takes after his mom, they are both tough as nails!
Thank you lord for answered prayers and Julian's good health.
DaveJ

Join the Conversation