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.

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CajunGirl2015 09/23/2014

My sister's numbers keep dropping instead of increasing. Over the past six blood draws, they have all dropped just a little. Usually when MDA gets her lab results, they call and say not yet we will see at the next draw. Yesterday when they called, they told her she needed to keep her appointment with the doctor because he needed to see her. They said it was a cause for concern, but not a cause to freak out. Needless to say, she is past concern already. She hasn't quite reached freak out yet but if the lab they draw at the doctors Friday is down again, I'm sure freak out status will be reached.

I guess we will see what the doctor says on Friday. I'm sure she is headed for another BMB. Please pray that this is just another slow body response and not something else going on. She is now 70 days past her last consolidation treatment. All of you know how it is and how up and down emotions are during these treatments. Please pray for calm and peace for her during this difficult stretch. I'm sure we will get to the other side but emotionally getting to the other side is so hard.

Thanks
Debbie

LoraBerg 09/23/2014

Debbie, prayers for calm and peace for your sister. And also a non-serious explanation as to why this is happening.

Mine took a week long dive about 40 days past consolidation. They just recently began coming back up, and then came up fast. I hope this happens with your sister as well. The docs didn't give me an explanation as to why... Just lazy bone marrow and my bodies reaction to the chemo.

Please keep us posted.

Lora

Noodle65 09/23/2014

Debbie,

I am so sorry Jo is having to deal with continued slow count recovery. I can certainly empathize with her frustration-18 months after DX I'm still battling with my platelets. I seem to recall she went over 80 days between her last session and her med team decided to not reduce her dose of chemo-right? That coupled with the cumulative effect of chemo, this delay is to be expected.

My chemo dose was reduced for all sessions because my counts took so long to recover. I sometimes worry about the reduced dose but there is nothing I can do about that.

Also, I had a BMB between every session to ensure continued remission. I actually took comfort in the results as that is the only definitive way to know what is going on in the marrow. I will pray for peace and for counts so Jo can avoid another BMB and get on with her treatment plan.

Blessings

Julie

LoriChallinor 09/23/2014

i will be praying that whatever the cause, it is not serious and she can continue with her treatment as planned.

dbrowncsuaedu 09/23/2014

I just recently got my platelets to come back up but they are still not in the normal range. Chemo takes its toll, but I know of none who do not get to a point, as I did, where we are no longer neutropenic and we can just assume a new normal that does not have any real impact on our lives. In a sense the marrow needs to heal and to regenerate itself. Sometimes this takes a long time -- and certainly longer in some than in others. We are all praying for you and your sister -- I know that this can be extremely trying. -- dave

leapea1208 09/24/2014

Debbie
I'm sorry about Jo's levels and hoping the counts recover this week. Chemo wreaks havoc on the marrow and Jo may just be more sensitive to the affects than others. I'll pray it's nothing serious and if they order a bmb, the waiting for results, is the worst part. )We have another(Tonys 10th) schd for day +90, oct 8th). Aggghhh
but her doctors will know the answers and the best plan.
Take care of yourself too
Xxoo

Lea

CajunGirl2015 09/24/2014

Thanks guys. Her levels have done the dance since she started and we have now gotten used to that but this is the first time that she has almost reached the level for another round of chemo and then they started falling and continued to fall. She gets lab done twice a week so for the last 3 weeks her levels have been falling instead of coming back up.

Julie, they did decrease the dose on her last consolidation round. I actually get to go to the doctor's appointment with her this time so I'm glad to be able to hear what he has to say and what the plan is to get her back on track. I know that a lot of times they just don't know what the reason is for slow recovery or dropping numbers but hopefully they will determine for sure that she is still in remission.

Thanks again, you guys are great!

Debbie

Noodle65 09/25/2014

Debbie,

Praying tomorrows labs are up so Jo can get her next consolidation. I'm so glad you are able to go with her to MDA especially if she needs another BMB as I know they are extra painful for her. Please know I am praying for a great outcome!

Blessings

Julie

leapea1208 09/27/2014

Hoping yesterday's labs were better for your sister

Noodle65 09/29/2014

Debbie,

How did Jo's apt/labs go?

Praying

Julie

CajunGirl2015 09/29/2014

Her platelets and other counts continue to decrease just a bit with each draw. She is fortunate that they were almost to where she could have chemo before they started to fall. Because of this, she has not yet had to start back with the transfusions. They were down a notch again this morning. Doctor postponed appt to this Friday because he wants to do a BMB on the same day and they could not do it until this Friday.

I guess we are in limbo for just a bit until we get the BMB so that she can ease her mind about what is going on. Hoping and praying it is just sluggish blood cells. We will know more after appt. Friday and BMB results later. Long time to worry but that's the way it goes it seems.

Noodle65 09/29/2014

Debbie,

So sorry Jos counts are not up. Where are her platelets and ANC. I seem to recall her platelet parameter for chemo is 60-right? I sure hope Jo does not have to wait like she did for her last BMB results-that was crazy long, 3 weeks plus. Praying her numbers climb before Friday.

Julie

LoraBerg 09/29/2014

Debbie,
I know the waiting sucks. Hang in there. Praying that the decline in numbers is nothing serious. Keep us posted on the BMB. Is she getting it at MDA? If so she should get preliminary results the same day.

Lora

CajunGirl2015 09/30/2014

Thanks guys. Her platelets were at 46 (they had lowered her target to 50 for chemo) before they started slipping. She is now at 32 for platelets which is not too terrible except when you consider that it has dropped every time. This will be the 4th week now. She said her WBC is also dropping but she is still in the range where she does not have to wear mask yet. She didn't tell me her ANC .

She will get the the BMB at MDA this Friday but she is in a clinical trial and she has never gotten preliminary results the same day. It did take a while last time to get the results. Maybe it has something to do with the trial, I'm not sure. Thanks for the prayers!

CajunGirl2015 10/03/2014

Saw the doc today at MDA. He says her platelets are just really sensitive to the intensive chemo they are using. If her marrow is clean, which we will find out in two weeks, then they may switch her to a less intensive chemo but have her do it for another year with BMB every 3 months. So good news as long as BMB comes back clean. Thanks for all the prayers and good thoughts!

Noodle65 10/03/2014

Debbie,

That is good news. I can so
relate to sensitive platelets. As I've said before, I would take as much chemo as they will give me. Did the doc mention what chemo :O wouldget for a year. I am so sorry to hear you'll have to wait two week s for bmb results.

I am confident results will be clean

Praying for jo

Julie

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