Julie,

The counts go up and down. Do not be concerned about the monocyte count, because the absolute number is all that matters. The variation is all related to what the other counts are doing. DO NOT HANG ON EVERY NUMBER!!! The platelets are fine, especially if they have been stable. They will slowly inch up.

It is time for both of you to take a deep breath. If your doctor doesn't want to check the blood until July, then clearly things are good. The cytogenetics are enviable. Rejoice that he is doing well.

Cliff

Dear Julie,

First off, I know nothing about monocytes.
BUT, I do see that your husband and I have a few things in common...
He's exactly a year "younger" than me in diagnosis (I'm August 2011)
He's young (I was 42 at diagnosis)
He had the same "combo" I did - normal Karyotype, FLT3 negative, NPM1 mutated. I think he's the only one around here I see with the exact same characteristics as I had.
So I am oddly excited!
:)

I've had induction and 3 rounds consolidation (I am in Israel and here they follow the European model of 3X consolidation).

I have to tell you, not sure if it helps to know...but for me I get stressed quite often. When I feel a bit "off". When I am a bit weak. Or nauseated (which was my first symptom), or short of breath.
Not sure when this will stop. Hopefully after the 2-year mark.

Wishing your husband lots of health!!
Abby

Julie,

I know nothing of Monocytes either but if your husband is feeling ok and the docs are not concerned then I would be happy with that. My platelets are rarely in normal range but they are stable so the docs are not concerned. I know it is hard not to worry but I now leave that to the experts, if they aren't concerned then neither am I. I ask my doctors a lot of questions if I think something is not right and they are very good at explaining why they aren't concerned.

Getting used to life in remission is not as easy as people imagine. I can only offer to find enjoyment and happy times while your husband is well. It's a time to start living again!!

Nicole

Julie,

Read this line of Nicole's again.."I ask my doctors a lot of questions if I think something is not right and they are very good at explaining why they aren't concerned." She hit the nail on the head! Doctors have experience with the fluctuations in lab values that mean absolutely nothing. Trust your physicians, and, as I always say, if you can't, then find another one. It is rare in this very litigious society for doctors to sugar-coat the truth. So, if your doctor says the sky is green, and that's OK, then it probably is. You will not get through all of this if you worry about every lab test that deviates from the norm. Generally, deviations like that have no significance.

Like Nicole said, it is time to start living. Give your husband an extra squeeze tonight. I heard that doing that leads to perfect lab tests! I mean it.

Cliff

Julie -- I guess if you have been reading you know we are blessed with Cliff. As far as I know he is the only MD among us. It is a shame he had to come down with AML, but the Lord works in mysterious ways. I am going on 3.5 years survival with chemo only ... that sounds like what your husband is, since you did not mention a transplant. No matter -- Cliff has given you the medical explanation. My platelets never got back to normal -- I am 110 and the low end of normal is 150, so I am about 30% or so under what I should be just to be on the low end. Both my old and new onc just say that this is my "new normal" and as long as I maintain it, no big deal. For some reason I have managed to not really be concerned about a relapse ... maybe it is because they treated me so well at UAB Hospital that I can't wait to go back. (No I hope you realize I am not crazy ... just kidding.) I expect if I have a bad test and things start going wrong that I will get concerned. But til then I plan on enjoying life, and that will not happen if I worry about it all the time. I do worry about other things ... maybe that helps.

Welcome aboard and we really appreciate your pitching in. Please keep us up on progress and let us know if a transplant is being considered. Your husband's case can certainly give hope to a lot of people. -- dave

Thank you all for the quick replies! A little background on us-my husband is active duty military and we currently live in Europe. He was diagnosed by a military doctor and shipped back to the states for treatment. We were allowed to return to Europe after his treatment was completed (which was amazing in itself-this type of diagnosis can be a career ender for a military guy). Our oncologist is a military one (the only one here). She saw us once when we returned from the states and said she didn't need to see him again unless there was a problem. She just orders blood work at the first of the month and he goes in and has it done then she is suppose to call us. But what really happens is he has to play cat and mouse with her on the phone. He only wants to know the bare minimum about his disease (he does what the doctors say to do and doesn't think knowing anymore helps any-just adds to his worry). I am opposite-I want to know everything so I can plan for the what if (I'm the worrier). Every symptom he has he gets scared (right now it is an on and off scratchy throat and some hip pain). A sore throat and hip pain was one of his initial symptoms. He has had this hip pain on and off since finishing his chemo (I think it is his new normal). I think the oncologist just wants him to not have to think about it so much (but I still like to talk with the docs about the blood results-like we did in the hospital-but my husband prefers it this way). We are moving back to the states this summer so I hope we have a closer relationship with the new oncologist. We had great oncologists while inpatient at Walter Reed. He has M5 AML (but they have told us that that is not what is important-it is the cytogenetics that really matter in treatment). Abbie-we were told having NPM1 and no FLT3 was a good thing-no one else that came in to the hospital with AML while we were there had that combo either-they all needed transplants (there were 3 others). The plan is chemo only for right now and a transplant if he relapses is the plan. His brothers didn't match but he has over 60 matches in the national registry. Oh yeah-we had a nurse that was a 24 year aml survivor!!!! She was 16 when diagnosed and was one of the first patients treated at St Jude (when it changed from a clinic to a hospital). I guess She was a spokesperson for St Jude for many years and gets flown back each year for a reunion. One of our docs said he has a colon cancer patient that had aml 40 years ago (she is in her 70's now). He was able to find her old records (she was in a clinical trail at Walter Reed) and was one of the patients given a new chemo called "Cytarabine" along with a mix of others-and all of her treatment was out patient. It was the cytarabine she was given that was the magic bullet he said. He said it is still the best we have to treat AML. Sorry for rambling on.

:) Julie

Hi Julie
I was 49 at diagnosis (june 2010) and went through induction and 3 rounds of consolidation chemo.I am chemo only and my sister is a perfect match and I tell her she is my spare!
I can understand how your husband feels about asking questions. When I was going through treatment I wanted to know the bare minimum and trusted my doctors ,the holders of the knowledge, to do whats best for me. My husband on the other hand would ask countless questions and would like to plan for contingencies.At times I would get upset with him and asked him to see my doctors outside the room because I really did not want to know. I wanted to concentrate all my efforts on beating this disease one step at a time. I think sometimes its our self protection mode, you know the saying "ignorance is bliss".
Anyway enjoy remission and live life!

Lisa

Julie,

I don't understand half of what the doctors tell me or the numbers on the tests. I just kind of go with the flow. I'm now 56 and was diagnosed in December 2012. I'm right now getting my third round of consolidation. I'm also NPM-1 and so only need chemo for now, no BMT. I'm trying to imagine what life will be like in June after round 4 and done. I'm sure I'll be looking over my shoulder a lot and wondering what's happening between blood tests. I'll have to learn to relax and meditate more.

Best wishes,

Steve

Julie -- you cannot worry about little aches and pains -- I am expecting to live with them for the duration -- I am about 3.5 years a survivor of AML/MDS, chemo only, now 69. I think it is just residual stuff from the chemo. I usually get a quick flashing pain that sometimes makes me yell a bit -- but it only lasts a few seconds. I have heard different stories from different people and they all are a bit different. It hits different people in different ways. No, its the fevers and any bad blood numbers that should give much more concern than the pain. You might beat up on him a little bit so he doesn't notice it so much -- dave

Julie -

I am like you, I want to know everything and sort of drive my own train...

I am now at a point that although my doctor wants to see me, I can look at the blood tests and know when they're ok. Basically by seeing platelets, hemoglobin and neutrophils. And he tells me that in case of relapse, early detection doesn't really make a difference, so in his eyes, no need to stress of worry (of course, why should he worry? it's not him who has this thing hanging over his head...)

And - WOW! 60 matches! I envy :)
I have one out of the 16 million plus worldwide who is my match. I hope I never need it!

Steve -

Good to see another NPM1 here :)
Good luck with the rest of treatment!

Abby

I'm going to try not to think about it until July. We really are happy and enjoying life-it is just that lingering thing that looms in the back of my mind.
Abby: I joked with the transplant nurse that my husband's family is from West Virginia(they really are) and asked if all those matches were in a 5 miles radius of each other :) We are really fortunate he has so many unrelated matches b/c his brothers were close (but not perfect) matches to each other but not to my husband. My husband was called up to be a possible bone marrow donor about 10 years ago (so we were pretty sure there would be at least one match for him). He ended up not donating because they used another donor (maybe an even closer match?). Hopefully we will never need any of that donor marrow.
:) Julie

We have come to find out that it is best to listen to the docs. Our counts go up and down, yesterday our wbc was 0.8 on a good day its 1.3 to 1.5, we know when we need platelets cause we start bleeding, we know when we need rbc transfusion because Tina gets super lathargic, but I think when we see our liver enzimes go up we might freak ...but we forget they can rise and fall due to a lot of things becides problems.... like change in medication and so fourth, Tina freaked when her iron levels went realy high...doc basicly said you have more to worry about that iron levels, You will come to find out you will probly know your husband isnt feeling well way before they pull blood. I dont know about ya"ll but I"ve learned our doc....when she comes in and leans against the wall,with her arms folded, everything is cool, when she pulls up a chair and sits down we have problems.I have found it very helpful to let go of my worries about if its going to get worse or come back stronger, when I am in worring mode ( and I do worry at times ) I am cutting myself short on the enjoyment of things going on around me at that point ant time. I think we all do it from time to time, the point is learning how to readjust our thinking, putting our trust in someone we hardly know (the doctors ) who are telling us what we need to do and whats good for us, but they do this day in and day out 99.9% of the time they know exactly whats going on with us, and we get fustrated because sometimes we dont understand thier lingo and in reality they really dont have the time to explain it in simple datail evrything that can effect our levels. Any way your not doing anything wrong, like I said I do the same things as you at times im just getting better at not freaking out as much....it takes time, take adeep breath and relax... ya"ll are going good, save your strength....Love ang Prayers....Billy and Tina

Billy,

That is the attitude that you must have to survive all of this uncertainty. However, do not be hesitant to have your doctors rephrase what they are saying in sentences that do not include medical jargon. Speaking in medical lingo does not help the patient or her family. No one is doubting that the doctor is educated and knows medical terminology. When a doctor is speaking with a patient who is not that familiar with medical terms, they should not be used. If they are, a simple, "could you rephrase that" or "could you explain that in simpler terms" will suffice. Your time is valuable too, so don't imply that the doctor does not have time for an explanation of what is going on. He or she owes that to you and TIna.

Thinking of and praying for both of you.

Cliff

Billy,

My Liver enzymes and Iron were THROUGH THE ROOF after my induction. I was sent home on certain medication (Posyconazale) That made them all skyrocket. We stopped that anti fungal and swtiched to another and within week it fell dramatically to nearing normal range. Dropped hundeds (Liver enzymes) My iron is still through the roof but I am hoping that will drop too. There are so many numbers and so many things to digest, but always ask the questions. Always. I am adamant about understanding and never letting them go from my room if I am confused. My love to you and Tina.
Ed

Ed: Yes, keep asking, but recognize that what they know might only be 10% more than you know, which is not bad, but it is a long way being totally on top of it. AML has so many variations and it seems like each one of them require something different. But we are fighting it -- posts to this list are helping to fight it. I hope everyone will continue to give us as much technical details as possible. Just living with each other this was is such a tremendous benefit to us all. Thanks for all that you have done, and thanks to all who are contributing -- dave