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.
Hi everyone(brand new here today and very scared right now)
My husband has been in remission 1 year (to the date almost) he is 41, was diagnosed w AML (inversion 16) and C-kit negative last year, at diagnosis his WBC was almost 160,000, with very Low red and plate counts. He was in complete remission after induction and we did 4 rounds of high dose Ara-c consolidation chemo. The bone marrow biopsy after round 4 showed complete molecular remission & no inversion 16. His counts at his 6 week and 3 month check up were great, all in normal range. At that time 12/2013) His WBC was 4900, ANC 2500, reds13.7, plates 255. He runs 2 miles a day, fast, and physically feels great, no fatigue, etc.
he and our baby both came down w a bad cough 2.5 weeks ago (assumed it was viral, bc theres a lot of that going around near us, so did the pediatrician) when We went for his blood work last week, we were pretty surprised to find out his white count was low, 2900 and his ANC was low (1500). The Doc checked him out and thought he looked fantastic, she was surprised too, but said it was most likely bc he had a bad cold for a few weeks. She ordered another test for today to see what his counts were doing. We went in, looking great, feeling great, full of energy, and shocked to see his whites down to 1850 and ANC 500!!! There were no blasts, & no immature grain. She ordered a bone marrow biopsy for us Friday, but still thinks it is his body's response to this virus. His platelets and reds stayed the same.
Has anyone experienced WBC and neutrophil drops due to a bad cold, flu or virus? Any input is greatly appreciated! Please i'm a very worried wife. We are fearful it's the leukemia coming back, even though the white count is low as opposed to high. Sitting on pins and needles
Lea
My husband has been in remission 1 year (to the date almost) he is 41, was diagnosed w AML (inversion 16) and C-kit negative last year, at diagnosis his WBC was almost 160,000, with very Low red and plate counts. He was in complete remission after induction and we did 4 rounds of high dose Ara-c consolidation chemo. The bone marrow biopsy after round 4 showed complete molecular remission & no inversion 16. His counts at his 6 week and 3 month check up were great, all in normal range. At that time 12/2013) His WBC was 4900, ANC 2500, reds13.7, plates 255. He runs 2 miles a day, fast, and physically feels great, no fatigue, etc.
he and our baby both came down w a bad cough 2.5 weeks ago (assumed it was viral, bc theres a lot of that going around near us, so did the pediatrician) when We went for his blood work last week, we were pretty surprised to find out his white count was low, 2900 and his ANC was low (1500). The Doc checked him out and thought he looked fantastic, she was surprised too, but said it was most likely bc he had a bad cold for a few weeks. She ordered another test for today to see what his counts were doing. We went in, looking great, feeling great, full of energy, and shocked to see his whites down to 1850 and ANC 500!!! There were no blasts, & no immature grain. She ordered a bone marrow biopsy for us Friday, but still thinks it is his body's response to this virus. His platelets and reds stayed the same.
Has anyone experienced WBC and neutrophil drops due to a bad cold, flu or virus? Any input is greatly appreciated! Please i'm a very worried wife. We are fearful it's the leukemia coming back, even though the white count is low as opposed to high. Sitting on pins and needles
Lea
I told you that things would get better. The platelets are the true barometers. When they stay up the world is wonderful. Trust me, the ANC is very fickle when one gets a viral infection. I certainly understand the anxiety. I had a period about 5 months after my transplant when my ANC just would not stay up and I had to get neulasta. I even got IVIG. Eventually, my neutrophils started to behave and now they are very peacefully doing their jobs.
I couldn't be happier for you and your husband. To avoid a BMB is like avoiding taking castor oil...both are about equally pleasant.
Enjoy the weekend.
Cliff
PS: I don't know how I avoided C. diff. It seems that everyone else had the pleasure! Just lucky I guess.
He feels great, no fatigue, no fevers, but this wasn't what we expected from today's results. This is 2 full weeks of low ANC/WBC and 4 blood draws. Feeling Very deflated...
Don't feel deflated just because your husband's counts are a bit fickle. I assume he is getting either Neupogen or Neulasta to stimulate the neutrophil precursors. As I mentioned, I had a problem with my WBCs for a while, even after my counts had been in a good range. Suddenly, there was just a decrease and I was supported through that. It has never recurred. I too was frightened, so what you both are experiencing is expected, but try to just put those fears on the back burner and continue to just live. Again, I truly do not think that there is anything so unusual about what is happening.
Be well.
Cliff
No there has been no mention of Nulesta or any other rx to aid in the white growth. They have never even discussed it with us. It's like they are all just bobbling around this low level up and down a bit. Tony is always positive and focused but after today(esp bc he was feeling so well& energetically these last few days) he took it pretty hard.
I do not think that his doctors would take any risks w him, so I'm trying to take comfort in that, as well as in your words of wisdom.
If u don't mind me asking, I thought I read you wrote in a post you were diagnosed with a low WBC (not high like most) I have heard that happens and that's what scares me most.
I so understand your anxiety and empathize with your entirely; however, the posts from moondreamr and Cliff who have encountered similar challenges give me faith that this is a result of the virus. I am sure I will encounter a similar trial and I take solace in their experiences. Lilypad does not post often but she is chemo only and had to have nuepegen for several months to keep her ANC up.
I am grateful that your med team is so aggressive and watchful regarding your husbands counts. Sometimes, a BMB is best to put all questions to rest. I am praying that next week's labs are improved and you can settle somewhat. During my devotional yesterday, God gave this verse:
2 Corinthians 4:17
New International Version (NIV)
17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.
I pray it provides some peace-I believe this will pass.
Blessings,
Julie
At diagnosis, my ANC was .02 and had been for about two months although I did not have any illness with a low immune system-praise God!. I do not believe it is that unusual to have a low ANC at DX; however, I do not believe this is an indication of relapse because there are no blasts and platelets remain stable. My med team assures me over and over, stability is more important than the actual number. Your husbands platelets and ANC have remained stable-please take solace in that. I would recommend a discussion regarding nuepegen- I gave myself shots everyday from day 10 to 30ish to get my ANC to 1. Once it reached 1 for five consecutive day, the neupegen was stopped. Praying for the peace that passes understanding for you-we all need it in the face of the demon AML.
Julie
What we have right now is a low total white count (under 2000) AND a low ANC, which i know is less common for aml but still a possibility. The WBC is usually high and the ANC is usually low. But still, the docs and us take comfort in the fact the his reds and platelets are stable, and esp bc there are no blasts. It's just like sitting around waiting for the carpet to be pulled out from us, or a bomb to drop.
I don't know if our medical team uses the shots, it is definitely something I'm going to ask them should the next blood work show similar counts. This is just unsettling and Unchartered territory for us since his counts were so good last check up:(
I continue to pray
Our husbands were about the same age when diagnosed. Vince was diagnosed the day before his 39th birthday. He also was chemo only with induction and 4 rounds of consolidation (NK, NPM1+, FLT3-). He has been in remission for 19 months and had his last chemo Dec 2012. He also sailed through his chemo (as much as you can hope to) except for the final round. C-diff and an ecoli infection in his blood on Christmas morning (I was so scared too it just happened so fast). I dread those blood draws-I feel like throwing up all the way to the doctor's office. After his last consolidation platelets rose to almost 300 then dropped to a 100 the next month. They would then go up a little then back down and now over a year later have finally decided to stay up near 200. His mean platelet volume (MPV) has dropped every month his platelets have risen (from 10 now to 5). Are they inversely related somehow??? I don't know, but our doc doesn't seem concerned so I try not to be either. I tell myself if the doc is not worried then you shouldn't be. Easier said than done sometimes, but it really does help with the anxieties. I'll add your family to our prayers :)
Sending good blood counts your way,
Julie
At dx I had a wbc of 1.7 and anc of .02. My blast we at 22k my understanding is anything under 20k is considered cml. I have never heard that a high wbc and low anc were normal for aml.
Julie
How is your husband doing these days?
As you can see we have 2 Julie's on here (the fabulous Noodle65 and me) :) My husband is doing really well. Our doctor had told us that is blood counts might never be exactly normal, but they are "good enough" to be his normal values. He told us all the chemo suppresses the bone marrow and it just doesn't function as good as it use too. But his counts are all in the normal range (finally) except his mean platelet volume. It took close to a year (since his last chemo) to get to this point. Expect to see continued improvement with his blood counts (although it might be more like a roller-coaster ride instead of a steady upward climb). I look up too many NIH studies too (I try not to but I can't help it). He has also had to have blood draws every 4 weeks that went to every 6 weeks then to every 2 weeks then back to 4 weeks then back to 6 weeks and now we have just made it to every 3 months for the first time. You see the up and down of the roller-coaster here??? It is hard emotionally I know.
:) Julie
You and your family have been very heavy on my heart and I want you to know I'm praying for a great outcome this week. Please Lord raise that anc!!!! Julie, the other fabulous one, had helped me through my platelet saga. I am so hopeful that your hubby s numbers will be up this week and you'll be back on the monthly lab schedule.
God bless
Julie
Blood test this Thursday better show stable plates and reds still, a better recovered ANC, and most importantly still- no blasts. If the ANC is still low or anything else seems off they will go straight to the bmb...
Prayers and positive energy
We've been on a three month check up since last August and would love to get back to that asap!
Julie, glad to hear your hubby's counts are stable and behaving finally
Noodles/Julie I appreciate all of your support and encouragement
Xo
Lea
My husband is a runner too! He does seem to have more aches and pains then he did before chemo but he has discovered if he runs every other day instead of every day it helps. It is sometimes hard to tell if it was the same aches and soreness that were always there (he lifts weights too) or if it is new since chemo. He seems to be hypersensitive to every "feeling" in his body now. I think a lot of it is stress and anxiety. Praying for good numbers for you guys this week!!!
:) Julie #2