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.
I've been on this site on and off since about April of 2014 and have seen many stories that inspired me and some that also made me sad. I recently hit 17 months in remission when I visited MDA for my 3 month checkup. My labs were a little lower than I had thought they would be being that I've felt fine and started to work in a pediatric clinic as I prepare to make my way to PA school: WBC: 2,000, RBC: 14.3, PLTS: 117,000. Everything else was fine both on the differential and chemistry section of the labs.
Well, I rechecked the other day (2 weeks since MDA) and was once again disappointed by the results.
WBC: 1,860
RBC: 14.8
PLTS: 95,000
My numbers have always fluctuated even back to when I was receiving chemotherapy, but my WBC and PLTS haven't been that low since I recovered from my last treatment. My RBCs have been the only ones that have been in range since stopping treatments. I had my BMB in May and everything came back negative for leukemia. My local onc wants me to recheck next week and then see what the course of action will be from there.
It's frustrating after the journey from last year to finally finding a career in medicine that I enjoy in helping others only to have this come up. Surprisingly though, I am at peace. God got me through last year and I am leaving it up to Him to get me through whatever the future holds. I've seen so many warriors on this site and it gives me the confidence and strength to know that no matter what is thrown my way, I can take it on and have a great support staff along the way.
Well, I rechecked the other day (2 weeks since MDA) and was once again disappointed by the results.
WBC: 1,860
RBC: 14.8
PLTS: 95,000
My numbers have always fluctuated even back to when I was receiving chemotherapy, but my WBC and PLTS haven't been that low since I recovered from my last treatment. My RBCs have been the only ones that have been in range since stopping treatments. I had my BMB in May and everything came back negative for leukemia. My local onc wants me to recheck next week and then see what the course of action will be from there.
It's frustrating after the journey from last year to finally finding a career in medicine that I enjoy in helping others only to have this come up. Surprisingly though, I am at peace. God got me through last year and I am leaving it up to Him to get me through whatever the future holds. I've seen so many warriors on this site and it gives me the confidence and strength to know that no matter what is thrown my way, I can take it on and have a great support staff along the way.
I'm so sorry to hear this. I was hoping for the best. MDA is as good as it gets and you're in good hands. Blessings.
Julie.
You are such an inspiration to me. In the midst of this news, you are thinking of those of us who are chemo only and concerned about relapse. You are amazing. As Lea stated, your attitude and faith will get you through this. Being treated at the best, MDA, is such a blessing.
Do you have siblings that may be a match or are you using the international database? You are on my family's prayers. We're praying dior peace and that this trial draws you close to almighty God. Also, that your faith will show others the power of prayer and a real life example of God's grace and mercy!
Blessings
Julie
To the club no one wants to belong to. I am a chemo only survivor of 30 months. I am nearing two year since my last consolidation in Nov. As you know, after two years post chemo, relapse goes way down. I can promise you that as time passes, fear of relapse subsides. But it never goes away.
I'm sorry that you had to deal with so many complication during Chenoweth. I'm sure that adds to your concerns about the trial. By the grace of God, I had no complications not even a fever. I did have slow count recovery which delayed chemo but did not cause any illness. I had four consolidation and would had had more of allowed. Probably because treatment went so well for me, I would jump at the trial but that's my journey, not yours.
As far as your counts go, they seem great to me. I'm 18 months ahead of you and last month my wbc was 4.7 and Platelets were 120. After all that chemo, we have a new normal for counts. What type of aml did you have? I had inversion 16.
You are in my prayers for wisdom in your decision regarding the trial.
Blessings
Julie
I am sorry to hear of your relapse and will continue to include you in my daily ptayers.
Hugs and prayers.
Karen
There were two types of AML that they found, but the main one they said is NPM1.
Twice I had fevers that broke 103 degrees. The 2nd time was due to some kind of blood infection. Said I could have caught it from bacteria off my own skin.
So Dr. Liu is your husbands Dr.? Mine is actually Dr. Artz there. I am told they are both top notch/brilliant. Dr. Liu can be very difficult to understand though. I have to listen to him and take more notes to try and understand what he is communicating.
I note Dr. Liu seems to be more concerned about environmental issues like working with fertilizer or products with benzene. My neighbors have been doing my fertilizing for me this year, so I don't have to touch the stuff. Next year I am going to switch over to all natural fertilizers.
How do we escape all the benzene from other stuff, like gasoline or toner for the printer? How about VOC's from furniture, flooring, cabinets, etc...
There was also another trial "Initial Phase 1 Study of WT2725 Dosing Emulsion in Patients with Advanced Malignancies," that they were interested in putting me in a few months back, but they said the protein they were looking for was not in my marrow and therefor did not qualify for, but this one I do qualify for: "Phase 1 Study of an Oncofetal ("OFA") Multi-Peptide Immunotherapy ("BB MPI 03") in Subjects with Hematologic Cancer."
It's still all scary stuff to me. Do you all sleep at night? I seem to fall asleep okay, but often wake up at first light and then can't go back to sleep again. Between thinking of my own cancer, this study, my brothers cancer and my daughter in a wheel chair it is more than difficult to find peace. I keep praying though and I know many people are praying for me as well.
My prayers are with you. I think God has given you the tools to fight this battle. As Saint Paul to the Corinthians said, we need three things. Faith, Hope and Love. Those three things will get you through anything. May God strengthen all 3 in you.
God bless you.
Donald, welcome aboard. As Julie said, your counts look fine. The NPM1 you speak of is actually a genetic mutation, a good mutation that typically puts one in the favorable risk group that often responds well to chemotherapy.
Good luck with that trial should you decide to go forward with it. We'll all be pulling for you.
Lou
DaveJ
Andy
You are in my daily prayers.
Karen
Good luck with chemo. I think of you daily and pray you find a perfect match. Keep us updated. Blessings.
Julie.
You know you have my family's prayers for smooth induction, remission, 10/10 donor, successful sct and THE CURE! ! Also my congregation at the Heights Community will be lifting you up in prayer.
You have so many things going for you: your age, health, attitude, being treated at the best of the best, your faith and you know the greatest physician- Jesus!
None of us know what tomorrow holds, but we know Who holds tomorrow!
Blessings
Julie
Andy