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.
Hello, this is my first visit and just wanted to tell my wife's story and see if anyone had any of the same issues. She is 37 and was diagnosed on May 6th 2012. Genetics test say chemo only no transplant needed. At least not now. Went thru a week of induction fine and the last few days of May her blood counts rose quick and bmb says remission. Checked back in the second week of June for 5 days of consolidation. When it was time for the numbers to rise they didn't. It was almost 2 months for her neutrophil count to get up enough to even get out of the house. Everything finally got up just enough to do another consolidation. It was done the second week of August. The results were the same. Very long time on everything. White count is the only thing that got up to normal. Dr. says chemo is over. Another round and it may never recover. Bone marrow has to have some damage so basically the treatment is over with just induction and 2 consolidations. Moving on to the last 2 months now: Platelets got as high as 95, red count as high as 27. Last monday platelets dropped to 74, red down again too. Yesterday, platelets down to 47 and red count down to 23, white count 3.3. Her blood has been being sent to mayo and been looking fine. Yesterdays sample was sent and hope to hear something by friday. Dr. says definitely something going on. Basically waiting on those results from mayo and go from there. Just curious if anyone had any experience with some of the issues we have. Thanks for reading.
We have others on this forum I know who have had similar slow-healing problems, and I am sure they will join this thread shortly. -- dave
The bone marrow can take a long while to recover in some people and be rapid in others. The guys on Team Transplant 2013 seem to all belong to the latter group, which is wonderful. My counts took an opposite pattern at first. My HCT rose steadily as did my platelets, but my white count would not remain at a decent level unless stimulated by Nupogen or Nulasta. Then, suddenly the WBC count normalized. Sometimes the stem cells just have to get used to the new bone marrow environment. Also, don't fret when the numbers seem to go up and down. They tend to do that for a while, although admittedly, your wife's situation is unusual, at least from the accounts of others on this website. Sometimes, even a mild viral illness is enough to send counts in to the cellar. Be positive about things and be sure to let us all know her next count.
Cliff
Welcome to our group. First and foremost, keep moving forward, stay positive, have your wife continue to take precautions to prevent infection and any secondary illnesses.
Though I did not have the same experience with counts as your wife, I have certainly heard about many others having issues. I am pretty friendly with many at my clinic and have talked to so many people that have dealt with counts being inconsistent. I suppose the tests done this week will give you both more information.
Please let us know how they turn out .
Peace,
Andrea
Nicole
Just like you I am a newbie to this group. I was dx with AML last Nov. 2012 and went to induction on that same day. I had bone marrow biopsy Dec. 31, 2012 and still had 8% blasts even though my blood counts were normal and I was playing tennis for 45 minutes on that week. I had a reinduction/consolidation with cytarabine last Jan. 2, 2013 and I was officially on remission last week. By blood work as of 2/18/13 WBC 4.4 RBC 3.87 Hemoglobin 11.9 Hematocrit 36.2 and PLATELETS OF 68. Yes it is my platelet that is slow to recover that is why my doctor is still hesistant for me to undergo another round of chemo. Although I am not playing tennis I still feel pretty good. I am currently on the transplant list and hoping to find a match soon. I think the bone marrow is so unpredictable and I am hoping that your wife counts will stabilize and gearing towards getting better. She is in my prayers.
Dids
The take-away message is that we are all different in our response to chemo and/or transplant. Your numbers look great, and the platelets will RISE AGAIN!!!! Truly, I like the numbers.
Cliff
One comment on the two consolidations. Where I was treated, the protocol is to do 3 consolidation rounds. I know in USA it's usually 4.
So I did research and I asked a lot, since I too was worried that maybe 4 is better than 3.
The conclusion of my research was that the consensus worldwide is that induction plus one consolidation holds a higher risk of relapse. And the risk significantly drops for those who have 2 rounds of consolidation.
The 3rd and 4th - nobody knows. There's no research done about 2 versus 3 versus 4. So I was basically told that anything beyond 2 rounds is "gravy"...
Abby2
I had my last chemo August 2012. My cell counts are still very low. I have to have a neupagen shot weekly to boost my white cell counts. And they are still very low. After six months the last two blood draws have shown a slight upward movement of my white cell count. So I have been told my bone marrow may never fully recover. But I can live with where they are now.
I had the induction and three consolidations. Couldn't do the fourth. My counts would drop severely and take a long time to recover. I am glad to hear Abby2 that the fourth round is gravy.
Your wife may have to live with a lower cell count. I feel pretty good most of the time. Have to be careful because of the low white cells. but I have adjusted. If need be, you and your wife will also.
It is my prayer that her counts recover fully.
Be blessed,
lily
I had induction and 2 consolidation rounds. On my second I got septic and they decided to give me a third but half dose. My white count and platelets never dropped day after day. I left the hospital and went back to work. Then a month later on a routine blood test. BOOM. they dropped hard. I was admitted (Due to the sepsis prior they didn't want me taking any chances) and waited almost 6 weeks for it to come back up!
The moral of the story is one never knows and the GOOD part is she is in remission!! Remember that! That is presently the key to all the news indeed.
Ed
I will be very interested to hear what they say. Nevertheless, I have confidence that your wife's donated marrow will get accustomed to its new surroundings over time. The environment of these engrafting cells is very important, and i would bet my bottom dollar that differences in this milieu are the likely determinants of the trajectory taken by the cell counts as the transplant recipient recovers. Have no fear.
Cliff