Welcome Chicagomom,

I am so sorry you had the need to join us but please know we are here to help. My hearts aches for you regarding your young sons. My three daughters were 8, 10 and 12 when I was dxd two years ago at age 48.

I too have M4 (Inversion 16) but did not have spinal fluid involvement. I was treated with chemo only and have yet to be tested for a match because I have been in remission since my Induction in April of 2013. So I could potentially have match issues that you have. My only full sibling is battling stage four NHL. In a way, I am glad I don't know. Ignorance can be bliss. I know of other on this site who were tested initially and had no match. Then, when they relapsed, a match was available.

I would like to offer some excellent advice given to me by many of the warriors here who have endured far more than I could handle. Try to treasure each day for what it is, another day of life with your family. Keep away from the Internet searches regarding AML. The data is based on a mean DX age of 70 not 34. Try to put blinders on, take one day at a time, do what you med team recommends and stay as healthy as you can during consolidation by walking, drinking and eating well.

Solicit the prayers of friends and loved ones knowing that all in this group will also be praying for a cure for you. Read Mathew 6 over and over where Jesus reminds us that no one adds a minute to their life by worrying about it so why waste your precious time (my summation)

I completely empathize with you and do not mean to seem cavalier about your situation because we are traveling a very similar path. The difference is I am a year plus ahead of you clearing the path as countless other have for me. We have many success stories here proving this heinous decease can be beat.

May almighty God bless you and your family and provide the peace that passes ALL understanding.

Praying for you

Julie

We appreciate that you have come to join us, but of course, we hate the circumstances that brought you here. I would guess that about half of us here are survivors, and the rest are divided among active patients like yourself (who soon will be survivors), and care givers. As such most of us have been through the thing at the doctors where they inform you that you have xxxxxxx, and you say -- that is a form of cancer, right? and they say, right. Yes, that is when it hits you -- you feel like your life is over, so let's just get it over with. Yes, I can remember it well even though it was over 5 and a half years ago. And five and a half years from now you will remember is well too.

The shock of it cannot be helped. All that we can say and seeing all of the survivors and hearing all of our stories -- well, I think it might help a little bit. All I can say is don't worry about the worrying -- most people get over it in due time. And then the condition? Well, that is just part of our lives now -- some of us are probably what you would call totally cured -- I believe I am. Others might be struggling with some leftover issues, and of course, some of us are still going thru chemo or transplant so as they say -- are not out of the woods yet.

But in a sense we never do get out of the woods. So it is largely a matter of making up your mind that you are not going to let this thing beat you. If you worry about it all the time, then you are letting it beat you. Get mad at it. Tell it that it does not matter if this works or if that works, you do not care, because you are going to beat this thing one way or the other and you are not going to let it beat you.

You have come to the right place -- this is a loving group, and sometimes tough love is in order. I want you to feel like every day when you wake up you thank God for that day and you make the most of it. Really, that is all any of us can depend on anyway -- cancer or not.

Please stay with us, keep us up on how you are doing, and be around to help the many others that will be coming along with experiences that perhaps are just unique to the two of you. We need you and they need you on this forum. And we are all going to help each other get through this thing. I will be watching for your response -- daveB

I can only respond in my phonewhich is very difficult. My son is 11 months post bone marrow transplant. We are also in Chicago. What hospital are you at? If I can I would like to help you. I will certainly be praying.

Thanks for the warm welcome everyone! I'm being treated at Loyola but I actually live in Northwest Indiana but grew up in Lombard, IL (chicago suburb). I used to be so positive that I'd survive this and my faith that God would help me and my family through this was unshakable and suddenly its hit me like a brick well. I have cancer. I could die from this. Suddenly, relapse seems so real, so possible. Its like reality hit. I put the Christmas decorations away thinking "I better make it organized so anyone can put them up next year if I'm not here". I find myself thinking these types of things all the time now. I'm also a guidance counselor (before I was a stay at home mom) so I"m well aware of depression. Don't worry, I"m not depressed yet! Thank you for directing me to Matthew 6. I love those verses and I need that reminder. Anyone can leave this earth tomorrow. We can't control it so why worry right? Ok, so now I just need to keep telling myself that. :-)

I so understand these thoughts. I struggle with them myself. These emotions must be amplified due to your young precious sons, your young age and that you have so much more life to live. While in the midst of receiving chemo, as you are, I woke up every morning with the thought, I have leukemia. I can tell you honestly, there are days where Ithink, iI had leukemia? It feels like it never happened. My fervent pray to Good is that I never lose that feeling of utter surrender and trust in Him I felt at dx. I do not want to become callous and blaza about the motive of God healing. When these sort of thoughts creep in, I try to say out load, I trust you Jesus. There is power in His name. These thoughts are from the evil one who seeks to destroy our faith and hopein our rredeemer. Push those thoughts out anyway you can. If you don't they will grow and overpower you. So much of this fight is about attitude. I have been humbled time and time again as I've observed people faced with so much more than I that gave their fight with optimism and gratitude. I try and fail to emulate this behavior whenever possible.

I'm praying that these thoughts will diminish and be replaced with thoughts of hope in faith. I do not know what tomorrow holds, but I know Who holds tomorrow.

Blessings
Julie

my son is also being treated at Loyola. And I live about 15 minutes from Lombard. I have found real love to be an excellent hospital. My sons doctor is dr. Rodrigues but we've seen all the doctors there.

Chica -- I think it is good you are writing out what you are feeling and bringing these thoughts to us so we might help. I would liken what you are going through to a grieving process. It hurts terribly to the point where you feel you just will not be able to go on. But we know that God has enabled us to hang in and let some time go by, and while we never get totally over it, we at least can go on with our normal lives and not have it just totally bring us down. What I am saying is that while right not it might be hard if not impossible to control your fear, take heart ... it might be a few days, a few weeks or perhaps even a month or so, but I am convinced that you will be able to just say "OK this is the new normal for me, and I am going to beat this thing and get on with it." Let's hope it's not too long -- please keep us up on how you are feeling about everything. Thanks -- dave

Hi Chicagomom,

I am the exact same age as you, with three children all under age 4. I can only imagine how you must be feeling. I am so sorry. My oldest son (age 3) was diagnosed with AML in September of 2013, just after turning 2 years old. He completed chemo only treatment, which has been successful for many people. My son did have mutations, though I do not know the exact ones. I believe that he was M1 or M2. Unfortunately, he did relapse in August, and we went to transplant in October, My son had a double cord blood transplant, not because he did not have a suitable live donor, but because he went into remission again right away, and they did not want to delay transplant. The reason I am telling you all of this is because cord blood can be a great option for people who do not have a good match. The match for cord blood does not have to be so exact, and they have come a long way with these types of transplants. My hope for you is certainly that you never need a transplant, but I understand your concern, because I feared relapse with my son for months before it happened. Incidentally, there was another young girl who was in treatment with him the first time around. She was M1 or M2 as well, and she also had CNS involvement, while he did not. She is still in remission.You just never know with AML. I wish you the very best and will be praying for you.
Jacki

Welcome- you will find great support and helpful information here, along with the understanding from people who "get" what you're going through.
I'm in Chicago too, my husband Tony had a transplant in July (6 months ago) after relapsing 1 year post his original remission. We were terrified of relapse, like you, & rightfully so, but when it happened, as stunned and devastated as we were (he had inversion 16/m4eos, a favorable type) we dealt with the news then put the fighting gloves back on. We switched from Rush hospital where he was originally treated to University of Chicago for reinduction and transplant as we felt his best chance was one of the top teaching hospitals in research hospitals in the Midwest and we couldn't be happier. there's no way I would've felt as comfortable at Rush for BMT, UofC offers cutting edge trials too! Just get through your rounds of consolidation, try wot put the blinders on. it sounds like you're doing amazing and don't worry about the platelets everybody struggles with them it seems.
I completely understand your fears, it's hard to keep it at bay, but focus on your Faith and your sons! We have a 2.5 year old daughter and she is his driving force, every day!!! I'm 38 tonys 42
Good luck, I'm here for you!
Lea

Thanks everyone for your support. This group is such a great place!

Lea, how did you know your husband had relapsed? Did he have symptoms or was it found in bloodwork? My dr doesn't see me for three months once treatment is complete and I"m afraid it will come back then and won't be found until routine bloodwork at that 3 month post-treatment appt.

I'd voice your concerns to your doctor. I haven't heard of anyone going 3 months between visits until at least a year out. But I had a transplant so it may be different for chemo only. I am on monthly visits and will be until I pass the 2 year post transplant mark. Ask them about it, I am sure they will see you monthly if that makes you more comfortable.
DaveJ

The protocol for after four round of consolidation at rush hospital was blood work at six weeks post 4th round bone marrow biopsy and then the doctor didn't see him for three months just like yours.
so we had finished last chemo in July, had a BMB in Aug, at that time he was in 100% molecular remission with no chromosome abnormalities or any leukemia detected. He went for blood work a few weeks later and then in October and then they did not see him until December. Then after his counts in December were perfect and everything looked normal they did not again asked to see him for another three months so we went in in March, 8 months after consolidation had finished and 13 months after diagnosis, so technically 1year in remission. At that appointment is when they had noticed that his white count has dropped below the normal level and his ANc was also lower than the normal level, but platelets and heme were still normal at that point
He had no overt symptoms. him and my daughter caught a cold in February that neither of them could kick for a good 4 to 6 weeks it was a nasty cough that was going around last year. he was running outside in the freezing cold in February & March a couple miles a day still we had no idea he had relapsed
The doctor was shocked to see his counts below normal and they thought for three weeks he was just fighting a virus but every week we go back and the ANC kept getting lower and lower and so we demanded a bone marrow test (his doc still wasn't convinced of relapse but we were sick of living in the not-knowing stage) on April 10 we got the results that there was 10% blasts which means we caught it basically just as it had started to come back.
I am not telling you any of this to scare you but I agree with Dave I wasn't comfortable with going three months in between appointments looking back but in all honesty there's nothing we couldve done that would've made this outcome any different.
if it comes back, the protocol is more chemo (reinduction) then transplant so if your blood work doesn't show anything they're not going to really want to see you as frequently but I recommend at least once a month too.
Post chemo is not monitored as closely as post transplant because with transplant they're monitoring for GVHD as well but I would speak your concerns up, my husband and I have been huge advocates for ourselves through this entire process at both hospitals and we find that our doctors appreciated very very much and so always say what you feel and ask any questions you feel you need the answers to. We find a lot of times they don't have the answers but they will tell you what applies to your case don't ask too much about statistics because every person is different as many people here have told you on the boards

I am chemo only and I have labs everything, pcr for inversion 16 over other month and dr visit every three months fir two years. I like this level off care and oversight. Pls I love seeing my med team. I also like to try to cheer others up on the waiting area and show them what the other side of chemo looks like. I still have anxiety before labs, going Monday but it is part of the process.

Julie

Hi, I'm also NPM1 positive, FLT3-neg (actually FLT-3 ITD negative and FLT-3 TKD positive) with normal cytogenetics. My M-type was M4 or M5 (can't remember which) and I was 28 at diagnosis. They never tested my CSF for involvement. I was treated with chemo-only (no match for me) and completed treatment 18 months ago. Initially I was seen every 3 weeks and after 6 months he stretched it to 6 weekly visits. Currently I'm still seeing him every 6 weeks for blood and he says he plans to continue that up until I reach that magical 2 year mark. If your specialist only wants to see you every 3 months from the start and you are concerned, I'm sure you could see your family doctor every month for blood work.

Dear Chicago Mom,

I am sorry to hear that you have joined our fraternity/sorority. I wish I had been around to comment on some of your questions, but I was hospitalized on Jan 9 and was just discharged yesterday. I am over 3 years and 4 months post transplant and have been doing very well. I had a T-cell depleted transplant at Sloan Kettering, and have still been reconstituting my immune system, which means that I am still a bit more susceptible to viral infections. I got the flu in January 2014 and got respiratory syncytial virus (RSV) about two weeks ago. It is a virus that is of concern in young children (age 2-3), but since my immune system is very young, I was unlucky enough to get it. I am really on the mend now.

First of all, I would not be overly concerned about your CSF involvement. They didn't even check my CSF prior to beginning my treatment. I am not aware of any specific mutation that would make you harder to match should you need a transplant, because marrows are not matched to mutations, they are matched to HLA types. The original marrow, with all of its issues, is eradicated by the treatment. I too had normal chormosomes and was FLT negative, and so, according to my doctors, a transplant was actually recommended, and so that is what I had.

Even though I was 58 at the time, I had a wife and three children that I did not want to leave. Nevertheless, I gradually (and it is hard) adopted the outlook that I wasn't going anywhere, and that I would be around for a long time. I am still here and, although I do not take my survival for granted, my blinders are always in position, keeping me looking straight ahead, and not over my back. Worry will not make you healthier. It will keep you from sleeping. It will make you a "Debbie Downer," and will always throw in the word "BUT" to any statement of good news that your doctor might give you. You say that you are trying to stay positive. DON'T TRY, JUST BE! I used to wear my AML diagnosis on my chest as a badge of courage. Getting through treatment really is a test of one's mettle, but eventually, you will take that badge, as I did, and put it in a box, and stick it in a drawer. I know that now is not the time to do that, but your time will come and you will begin to live your life again. I promise you that.

With regard to the frequency of being seen by your hematologist, I have to say that I disagree with some of the comments being made on our website. If your doctor says "every three months," and that makes you uncomfortable, ask your doctor "why every three months??" Please do not ask your internist to check your blood in the interim. It adds to anxiety and your internist did not spend a minimum of 3 years in fellowship training and has not amassed years of experience with AML. Be honest with your hematologist. Don't go around him/her. That should never be the way medical treatment works. I am a physician, and yet, my relationship with my hematologist is doctor-patient, not doctor-doctor. When I was in the hospital this week, I did not make any suggestions about my treatment.

Do not read about your disease. Do not search for statistics. Don't ruminate on stories obtained second or third hand about someone who got this or that therapy and did well (or poorly). If you do not trust your physician, it is time for a new one.

Just keep clicking your ruby slippers together and say, "I will get well" over an over. After a while, that feeling will be internalized and you won't have to say a word, because you will begin to believe that it is true.

You know that we will all be praying for you. That's something that is of value. Excessive worry isn't.

Cliff