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 struggled with writing this for a while now as I know the words I'm about to say we're going to come as a shock and potentially frighten some of you, and fir this I'm so sorry and I debated not sharing at all. But I find strength in our group and I really need it right now. I apologize in advance for the stress and anxiety this might cause any of you going through treatment as I know whenever I would read a post like this it would send me into a tailspin.
We went in for Tony's 18 month check up last month as most of you know because I asked for prayers for great results. However on 13 of January his normal blood counts for the whites and neutrophils were lower than they usually are. Having just got over a bout of horrible stomach flu his doctor attributed it to recovering from the virus. The labs were still in normal range they were just low for Tony's normal and so we wrapped up the appointment disappointed but not super concerned as his doctor was not concerned and everything was still in normal limits. in fact his most recent chimerism analysis showed that he was still full donor. We weren't comfortable with the results and so we requested come back in 2 weeks and two weeks later the counts are still low, the doctor offered to ease our minds and just have a bone marrow that day for definitive results but we opted to wait one more week bc there was a ton of these LGL reactive lymphs in the blood, indicative of a viral or tcell response (also later that day we were going to find out if the IVF treatment and embryo transfer was successful or not and were to find out if I was pregnant, & we did not want that overshadowed by waiting for Marrow results)
We did decide to have a chimerism run just to make sure that everything was still good and we got a call that his had dropped from 100% to 92% so this caused us a lot more concern
So on 2/11 we went into clinic with the plan to have labs and a marrow if counts were still down, after the grueling hour of waiting for results, they came back and had tanked. We were so upset, just holding each other, crying, screaming, shaking.
His dr came in and discussed everything w us, and told us she take the cells down straight to the lab and have them stained them immediately so we didn't have to wait anymore for these agonizing results. We drove home in complete shock and numbness purely expecting a phone call at 7 PM later that night to indicate relapse, but then she called and said preliminary results no leukemia cells at all!
We are both crumpled to the floor and were so shocked as we had had anticipated the worst. we made an appointment to see her next week to follow up have more labs drawn and have the definitive cytogenetic and molecular test results by then
So 2/17 the exact three-year anniversary of his original diagnosis she walked into the room and we knew immediately things were not good. Even though there was no leukemia and no blasts in the marrow the cytogenetic testing came back with markers for his original leukemia -inversion 16.
There are no words to describe the feeling I had-just two days before we had gone in to my doctor and saw the heartbeat of the baby on the screen, we were so ready to put this disease behind us and move forward in our lives. But as God has will have it, that is not going to happen.
Since there was such a minimal (molecular) amount of detectable disease she decided on a plan of five days of outpatient Decitabine chemo followed with the sixth day of a DLI. we completed that yesterday. Assess and plan accordingly based on how he responds. I am 7 weeks pregnant and will never understand how the "best prognostic AML" will not go away, to relapse now is beyond devastating.
So Now we wait...
We went in for Tony's 18 month check up last month as most of you know because I asked for prayers for great results. However on 13 of January his normal blood counts for the whites and neutrophils were lower than they usually are. Having just got over a bout of horrible stomach flu his doctor attributed it to recovering from the virus. The labs were still in normal range they were just low for Tony's normal and so we wrapped up the appointment disappointed but not super concerned as his doctor was not concerned and everything was still in normal limits. in fact his most recent chimerism analysis showed that he was still full donor. We weren't comfortable with the results and so we requested come back in 2 weeks and two weeks later the counts are still low, the doctor offered to ease our minds and just have a bone marrow that day for definitive results but we opted to wait one more week bc there was a ton of these LGL reactive lymphs in the blood, indicative of a viral or tcell response (also later that day we were going to find out if the IVF treatment and embryo transfer was successful or not and were to find out if I was pregnant, & we did not want that overshadowed by waiting for Marrow results)
We did decide to have a chimerism run just to make sure that everything was still good and we got a call that his had dropped from 100% to 92% so this caused us a lot more concern
So on 2/11 we went into clinic with the plan to have labs and a marrow if counts were still down, after the grueling hour of waiting for results, they came back and had tanked. We were so upset, just holding each other, crying, screaming, shaking.
His dr came in and discussed everything w us, and told us she take the cells down straight to the lab and have them stained them immediately so we didn't have to wait anymore for these agonizing results. We drove home in complete shock and numbness purely expecting a phone call at 7 PM later that night to indicate relapse, but then she called and said preliminary results no leukemia cells at all!
We are both crumpled to the floor and were so shocked as we had had anticipated the worst. we made an appointment to see her next week to follow up have more labs drawn and have the definitive cytogenetic and molecular test results by then
So 2/17 the exact three-year anniversary of his original diagnosis she walked into the room and we knew immediately things were not good. Even though there was no leukemia and no blasts in the marrow the cytogenetic testing came back with markers for his original leukemia -inversion 16.
There are no words to describe the feeling I had-just two days before we had gone in to my doctor and saw the heartbeat of the baby on the screen, we were so ready to put this disease behind us and move forward in our lives. But as God has will have it, that is not going to happen.
Since there was such a minimal (molecular) amount of detectable disease she decided on a plan of five days of outpatient Decitabine chemo followed with the sixth day of a DLI. we completed that yesterday. Assess and plan accordingly based on how he responds. I am 7 weeks pregnant and will never understand how the "best prognostic AML" will not go away, to relapse now is beyond devastating.
So Now we wait...
I have read lots of your posts and can see the dark place you are allowing yourself to go. It is understandable. It is a place that I have visited many times in the past.
Psychologically, our brain needs to have a story for the future and our brains are trained to make a story, but we are not prophets. Also, our prescience is severely diminished as well when fear is a driver in the outcome.
Tony's death is FAR from guaranteed. The need for a transplant is far from certain! Come back from this dark place in your mind and enjoy what God has promised you, which is today, and nothing more.
I know that the uncertainty is crushing. Our situations are now very similar. The doctors don't know what is going to happen to either of us, but God does. And God loves us and our families. He has a plan and it is a plan that is better than the plan we have. If we can just believe that, we can have peace in the process. Not that that is easy. I still struggle every week with trying to take back control and wrestle with God on how I think the future should look. It only brings me heartache...
Cathy and I keep you in our prayers always.
I have been trying to think of what I can write to you all week to help in anyway but John's right you are in a very dark place right now and it is up to you to pull yourself out. Tony will fight and you need to be next to him the whole way just because he wants to make plans and have everything in order does not mean he is giving up. Nothing is guaranteed in either direction. Jimmy is doing very well the last 2 weeks, he gained 3 pounds now I don't know what will happen tomorrow but he's here now. Please take care of yourself.
Margaret
This group is a huge source of strength for me, and is also where I feel I can vent, cry, scream, be angry, be sad, bc I try my best not to do it in front of Tony, and never in front of Izzy. I know you all are saying to get out of my dark place, which believe me, I want very badly, but in order to pull myself out of there, I need to get these things off my chest without unloading them onto my family!
So many of you have reached out and for that I am eternally grateful!
We have had a good few days too, focusing our energy on Izzy and enjoying the unseasonably warm weather here.
We are on our way to clinic now to have labs done, just looking forward to getting out of there and going home to grill out (rare for Chicago in February) and play with Izzy on the swing set
Our love
L&T
I'm glad to hear you are having good days and didn't mean to imply that we do not want to hear any negativity. I also post my worries here as to not bring it into my home:) vent away.
My brother is also in Chicago and just told me he is at Costco getting steaks to grill out today. Enjoy the sunshine.
Margaret
Forgive me since my post came off as directive. This is a process, all of it. This board is a venting source for me too. Take your time and please know it was meant as encouragement.
Glad to hear that some good days were in the offing. Praying for many many more.
Love
John
I so understand Tony's perspective related to the future. I certainly will not pretend to have traveled the difficult path that you two have; however, while in the battle I wanted to talk to my husband about practical things like;
where my life insurance policy was
finances-as I do all of ours
passwords
ect
He would have none of it. He just could not go there. Even now he acts like AML is far behind us and does not need to be discussed-that's why I come here. I'm not complaining about him, I praise God everyday for blessing me with an optimistic spouse.
Even now when he wants to discuss bumping up our 401K I opt to planning a big vaca with my daughters next year.
Retirement in 10 years is less assured than a big vacation next year. I agree with Twilights advice, archiving these moments are good.
I was one who encouraged you to share your anguish. That is the mission of this group, to help in the midst of the storm. We all garner different levels of credibility here based sometimes on the level of hell this disease has taken us through. Therefore, I have very little because I have traveled such an easy path compared to most.
You and Tony have certainly had a larger portion much like Margaret and Jimmy. Please know I am praying fervently for your precious family and I love you guys dearly.
Blessings
Julie
The story of Tony is heart rending to all of us, and for sure Tony, you and your family will be in our prayers.
It is so important that you get as positive as you can be for Tony, your family and your new baby. They all need you in your normal frame of mind. How do you get there from here? First do not expect it to just happen all at once -- it must be incremental -- a little bit at a time. Second, do not feel guilty if you feel good ... like perhaps that is going to make something bad happen. That is superstition -- the one thing is not related at all to the other. Reward yourself when you feel good.
The idea is to wake up with thanksgiving that you have this one more day with Tony and you are going to make the most of it ... and then, make the most of it -- enjoy it to the max. None of us have any guarantees, but we do not want to destroy the good times we could have worrying about what bad things may or may not happen.
Jesus said in Matthew 6 -- sufficient to the day is the evil thereof. Deal with today's problems, and cast the cares for tomorrow on Jesus -- that is what he has told us we should do. And when we do it we will be blessed because we are demonstrating our faith in him.
This might sound harsh, but it worked for me, and I know it has for many others. Our rewards for faith are not just in the world to come -- we can begin to reap the harvest now. I hope this will help, and you will be in my thoughts and prayers, as I can see is true from all of the others who have shown their concern for Tony. May God give you comfort and help you all cope with this ordeal, and may the outcome begin to look much brighter as you continue -- daveB
I am really trying to Just focus on today, each day, as many of you have recommended, it's much easier said then done though. I want to focus on the future, the baby, but there is just too much unknown, so today I'll focus on today and can't wait to get home to Izzy
Hopefully this is just a blip for Tony and it the plan they have in place will take care of this small set back. You guys are fighters and this can be conquered! I pray everything goes well in the next few days with all the tests.
Debbie
We did discuss that he'd have to have the transplant sooner if that was the route as opposed to waiting (for baby to be born)
His doc said Cord blood transplants have a very good gvl against AML and was considering a haplo/cord even w Tony's sister who is a half match but unfortunately she is 32 weeks pregnant now and couldn't donate cells.
Isn't Jo on Decitabine? How long is she nutrapenic for every month?
Jo is on Decitabine. She has gone through 10 cycles of it now. I don't follow the lab work as close because I don't get to go to all of her visits and such so I can't tell you exactly how long she is neutrapenic. Maybe this will help. If I understand right, neutrapenia has to do with the WBCs so just before her last 4 rounds her readings went like this:
9/23 - 2.7
10/28 - 1.6
12/2 - 1.2
1/20 - 3.3
When she first started the Decitabine, it was probably only about a week once she hit bottom. She has been able to have a round of Decitabine each month although it started stretching out a little more as you can see at the end of October when he increased her dosage before she was able to have the next one in December. Her dose right now is 20mg/m2 for 4 days. She also started having to have platelets and blood at that time also and he ordered neupogen shots. She has two more to do but he says he plans to make those last two a lot stronger dose and for her to expect to be sick a good bit longer between those two. We leave for a trip to Hawaii at the end of this week so the MDA doc allowed her to postpone her February round until we return. The good news is, after those two, hopefully she will be done with treatment and begin the recovery process.
If you have any other questions about Decitabine, I would be more than happy to ask her and let you know what she says. I have tried to get her involved on the site since she is actually the one in treatment but I think she is afraid of what she may read.
I talked to my sister yesterday and she said she is neutrapenic for about a week and a half to two weeks each round of the decidabine.
How are you guys holding up? Thinking about you and the family.
V.r
John
His nose became red last week, now his face is slowly catching up and feels hot, so this may be gvhd (which were also "hoping for" from the DLI, hoping w a gvl effect)
His Dr wants to wait on the next DLI until at least another month.
Debbie - thank you for the input. It took about two weeks for counts to bottom out, anc been very low now for 2 weeks, his dose was 20mg/m2 for 5 days. He had no other side effects, no nausea gut issues etc. It was very well tolerated.