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 have been looking forward to the words end of treatment for 10 months but now that it is here I am experiencing emotions I did not expect-namely apprehension and fear. After my fourth consolidation on 12 Nov, my platelets are now higher than they have been since diagnosis in March-97. I am scheduled for labs on Friday and if (a big if because my platelets usually drop off at this point) my platelets remain steady I will be scheduled for the removal of my Hickman port and my end of treatment BMB, hence, my trepidation, the BMB. I am not afraid of the procedure itself; Ive had six thus far due to my slow count recovery-most recently in September. I am nervous/anxious about the results. My med team has explained that this BMB will undergo the PCR test where any residual Inversion 16 will be detected. They added that many times they receive false positives due to the sensitivity of the test-this fact alone has me stressed. How can I be free of leukemia and yet still have traces of Inversion 16? I have not asked these questions because; of course I dont have the results yet. Borrowing trouble.
After the BMB results, I will have an end of treatment consultation. I am trying to compile a list of questions for my amazing doctors and would truly like to hear lessons learned from others who have traveled this path.
I absolutely loved the quote recently provided by Cliff from Alexander Pope:
A little learning is a dangerous thing;
Drink deep, or taste not the Pierian spring:
There shallow draughts intoxicate the brain,
And drinking largely sobers us again.
I want to adopt this philosophy so badly-only optimism, only faith. Up to this point, I have been successful, but this step has unnerved me. Partly because it is coupled with my return to work- in person. I have been teleworking full time since May. Once I am given the all clear, I will gradually return to work full time. That means also returning to church, grocery stores, teaching Masters classes on ground vice online-humanity in general in the middle of cold and flu season.
Quite simply, many many changes. Pre AML I was a flaming extrovert but by God's grace I have endured my months of sequestration with a sanguine bliss.
I have been strong and not ventured into the InterWeb of AML misinformation and I absolutely refuse to start now. I am simply looking for some veteran advice and perspective as a travel this new ground. I know in my heart of hearts that Almighty God is guiding my path and HIS will be done. Thank you in advance for any and all recommendations.
Blessings,
Julie
After the BMB results, I will have an end of treatment consultation. I am trying to compile a list of questions for my amazing doctors and would truly like to hear lessons learned from others who have traveled this path.
I absolutely loved the quote recently provided by Cliff from Alexander Pope:
A little learning is a dangerous thing;
Drink deep, or taste not the Pierian spring:
There shallow draughts intoxicate the brain,
And drinking largely sobers us again.
I want to adopt this philosophy so badly-only optimism, only faith. Up to this point, I have been successful, but this step has unnerved me. Partly because it is coupled with my return to work- in person. I have been teleworking full time since May. Once I am given the all clear, I will gradually return to work full time. That means also returning to church, grocery stores, teaching Masters classes on ground vice online-humanity in general in the middle of cold and flu season.
Quite simply, many many changes. Pre AML I was a flaming extrovert but by God's grace I have endured my months of sequestration with a sanguine bliss.
I have been strong and not ventured into the InterWeb of AML misinformation and I absolutely refuse to start now. I am simply looking for some veteran advice and perspective as a travel this new ground. I know in my heart of hearts that Almighty God is guiding my path and HIS will be done. Thank you in advance for any and all recommendations.
Blessings,
Julie
When I was in your situation I just totally did not believe it -- this was true all through my treatment. "Do whatever you want, I do not expect to get out of this place alive anyway, so no problem." Everyone responds differently. Some call it survivor's guilt syndrome. I was kind of a hero when I was supposed to die. Now, wait a second, I am going to survive? This is not supposed to happen. I have to rethink this whole thing. Ten months is a long time when you have been conditioned into just playing it one day at a time and not really worrying too much about the future. Now there is a future and you have to deal with it.
What I am saying is -- what you are experiencing is the same thing that many of us have experienced. It is not really rational, but that is OK. Once you get back to real life again it will go away and you will have your old mind back... it is only temporary. But I think you will realize that you will never be the same person again, and for me that was a good thing.
What I would ask my onc if I were in your situation? Some hard questions. How many mutant stem cells does it take to produce the number of blasts that you had? Is it possible that the chemo killed the mutant stem cells that were producing the blasts? If it did not, then what is keeping them from producing blasts right now? Why would they all of a sudden get active? We know the chemo kills the mutant blasts, but they are the result, not the problem -- the mutant stem cell(s) is/are the problem.
I do not expect you to get straight answers to these questions, but if you do, be sure to let us know. My onc did not seem to want to comment on any of this. They hate to admit that it works (most of the time), but they do not know exactly why it works. My son said it was like wiping out the memory in your computer and then rebooting. If you get a transplant it would be like getting a new operating system as well -- not only knock out the memory but knock out the operating system to. Then load up a new operating system and reboot. Well, fine -- that might be a good analogy but it still does not tell us why it works sometimes and why it does not work other times, and that is really what you would like to know. I think. I sure would.
Please keep us up on things -- you have been a great blessing to all of us and we want to celebrate your 5 and 10 and 40 year birthdays -- and all of them in between. -- dave
Thank you so much for sharing that even a man of unwavering faith can have doubts when faced with the daunting diagnosis of AML. You are the reason I found this amazing group of people who provide so much inspiration, guidance and hope. Thank you for your continued support and prayers.
Scott,
My Inversion 16 brother. You have helped me in so many ways. You are blazing the trail ahead of me that is so inspirational. Thank you for entertaining my barrage of questions and need for connection with someone in my shoes. You have this beat- 2 years is just around the corner for you. Your prayers mean the world to me!
God Bless,
Julie
I too am a chemo only survivor.I was diagnosed June 2011,finished treatment November 2011. Finishing treatment was very difficult and I had plenty of fears.During treatment i was seeing doctors daily,my blood was being tested daily-I felt safe. When this was over and my doctor said "see you in 3 months for a check up" I felt like a child left at school for the first time. Will I be ok.How can I go 3 months without getting a blood test. My doctor did not do routine BMB,in fact I only ever had 3-one at diagnosis ,1 at the end of induction and one at the instruction of a relieving oncologist (mine was on annual leave). He believes that the blood tests will indicate if we need to delve further by BMB.
Initially I had a hard time with this and I often used to go to my family doctor for a blood tests. My thoughts were filled with "what if this comes back". My doctor used to urge me to "live life" and "do not let AML define you as a person".
Now 2 years+ down the road, I can honestly say that I rarely think of AML between quarterly blood tests.When I see my doctor every 3 months he quickly says that bloods look good and then we proceed to talk about how I am coping with life.
I have come to realise that AML has a mind of its own I cannot change the outcome. MY doctors and myself have done all that we can,now we cannot waste today worrying about tomorrow. If AML returns tomorrow then that is the time we will talk about our new options.
Enjoy your life and your family.
Lisa
Exactly 2 years ago today I was discharged from the hospital for the last time. End of all treatment. 5 months mostly spent in a hospital room, much of it in isolation. Chemo only. Diagnosed August 2011.
The irony of the fear of end of treatment is amazing and it's surprising that this period is so difficult. Looking back, I think the period right after end of treatment was terribly hard.
Going from the micro-caring, the daily tests, the immediate medical care for every little thing, to suddenly being "let go" was terrifying.
With it, there's also freedom, and family, and normalcy. It's also weird (this is all my own experience, may be different for everyone) how the rest of the world just continued as if nothing happened.
Give yourself time. Know that your body is still slowly healing. And that your mind and emotional life needs time to go through the process of healing as well. It all takes time. Be gentle with yourself. And be gentle with what you expect from yourself.
For me, especially in the first year, fear was something very very present, that was my companion all the time. Fear turned into panic several times with the smallest slightest physical discomfort.
But like everything else, this has slowly improved.
Lots of luck, lots of health, and congratulations!!!
Abby
Thank you much for the support and words of encouragement. I remember when you posted to my question looking for chemo only survivors. Stories like yours give me such hope.
Abby,
You have been with me through my journey, sharing your knowledge and research regarding Inversion 16. Telling me I'd won the leukemia lotto :-) You answered all my crazy questions with such care and compassion. It is always so surprising to me how different our paths are. You spent almost all five months of your treatment in hospital, while my treatment took 10 months due to slow platelet recovery but I only spent 50 days total in hospital-so strange.
Thank you for your support!
Julie
Chemo weakens you, so by building that strength back up if you get a bit of a cold you will be able to get over it like a normal person.
Wishing you all the best xxx
Where I live consolidation is all done as inpatient, until counts recover. I think that's the main difference. So I'd spend a month "in" and 1-2 weeks "out". Induction plus 3 rounds consolidation....
Be well!!
I know 10 months is crazy. That coupled with lower dose ariC had always concerned me as too final outcome. Today I had my labs drawn and my platelets fell from 97 to 85. This is what my counts do at this piont. But I still worry. I am scheduled in a week for labs again andif they recover iI will have my bmb. I'm trying to not worry and just see what happens. For the past ten months everytime my counts got to this point I had chemo. Maybe my t body is trying to figure out how to function normally again.
Congratulations on reaching the end of treatment. It is scary after being focused on getting through treatment to suddenly being done. It is a whole new adjustment and like everyone has written it will take time. I am sure your blood counts will start to find their new "normal", it takes awhile as the marrow recovers. Remember to continue to take it day by day as your body and mind recover from the long months of treatment. Praying for you as you tip your toe back in the river of life, pretty soon you will be back swimming along but with a new perspective. God is good!
Take Care,
Suzanne
Your words of encouragement regarding my counts are reassuring. For those of you who have traveled this path, I am so grateful for your perspective. I have all my trust in God and know that His Will be done. And He is so good all the time.
Blessings,
Julie
I was able to have my BMB on Friday even though my platelets dropped from 85 to 84-they were 97 two weeks ago. For some reason, this is what my platelets have done over the past 10 months. My ANC is 2.8 and my HCT is 32.8.
Now the dreaded wait. This biopsy will take longer (I usually get results in under 24 hours) because it being sent for PCR testing to check for any residual Inversion 16. I am scheduled for "end of treatment consult" and Hickman removal on Thursday if the news if good. Please pray for favorable results.
Thanks!
Julie
I am expecting good results! I really do hate " the bone marrow wait", even though I expect it each time. Praying for clean quick results!
Take Care,
Suzanne