Julie,

Your cytogenetics are fantastic! You should be very happy your docs are planning chemo only. There are a number of chemo only people on this board with good markers who are doing VERY WELL. Dave, for one, Zkat as well (I think she is approaching two years remission). Counts are just NOT predictable. They never are. Mine came back so quickly after induction, but then slower and slower with consolidation; round by round. Now I am 24 days post transplant and every third visit to the doc I have needed neupogen. Be strong. Enjoy the time and strength you have. From my objective and NON medical opinion.(I'm no doc)... You are doing very well.

Ed

Oh and I was chemo only at first and now have had a BMT, but I was FLT-3 positive and they never found that out when they decided chemo only. So don't fret about my relapse.

Thanks Ed! I pray you are correct! I feel very blessed to have the option to go chemo only and have transplant as a backup. I am truly inspired by all the transplant warriors on this site to include you! I have no issue with the longer spans between treatments as long as I stay in remission. If that means a BMB every cycle I'm fine with that approach. When I approached the 72 day marks, one of my Docs said I was officially outside of the bell curve but followed up with your doing it so now there is a new data point.

How many times do we hear everyone is different. I am trusting God and my medical team to work this out. Thanks so much for your perspective

Blessings,

Julie.

Hey Julie,
My counts take FOREVER to recover. Cliff has said over and over, stop looking at them. I call my blood counts my strange addiction.
I have one doc that says, well, your counts are already low why wait for another round of chemo and then another who says to wait. The craziest balancing act ever. On average, it takes me 42-45 days to start a recovery. My platelets and hemoglobin always hang in the (hmm, make need a transfusion this week) area and my WBC and ANC are awful always and are the last to recover. I will even get asked to bet blood draws twice a week because they fear i will need a transfusion, but i always seems ok, borderline, but ok. As a matter of fact, I started chemo again while WBC and ANC were still low and a week later they were still rising from the last round - go figure
As Ed says, things look good for you. I am no doctor either. I am sure Cliff will jump in and offer some advice.
Three girls, huh - God Bless You! They are tough ages right now. What a wonderful distraction.
Be blessed. Peace, love and hope.
Andrea

Hey Julie,

Ed is right, I am chemo only and approaching the two year mark (not without the daily dose of anxiety and fear...). It's be two years since diagnosis in a week
And two years of remission in early October.

I don't think counts recovery is related to anything. I took longer than average to recover, and another person I know with the same cytogenetics as mine is taking foreeeeveeeer to recover. Especially his platelets.
But as long as he is in remission, they're sticking to the plan.

I believe Inv 16 is the best AML out there (as far as AML is concerned...never a good thing! but still can make a huge difference!)

One thing they may decide is to maybe do less rounds of consolidation. Not sure what the policy is. I know research shows 2 rounds is what is really needed. And the third round (in Europe as well as Israel, where I live, they do 3 rounds), and 4th (in USA) are really "just in case" rounds. But this is really only my hypothesis based on nothing :)
I know that since my third round had many complications (from a nasty reaction to ara-C chemo to a violent lung infection that almost killed me), my doctor told me that even if they did do 4 rounds as a norm (and they don't), she wouldn't risk a fourth round with me.

In any case, looks like you are doing great! You're in remission and feeling well. And you're there with your daughters (I also have 3 kids, mine were 15, 10 and 8 when I was in treatment),

Lots of luck
Abby

Hey Julie

I am chemo only and am almost 2 years and 2 months from diagnosis.I am in the moderate risk group.I did induction and 3 rounds of consolidation. Everyone is so different.My counts would start to recover about 3 -4 weeks after completion of chemo but once they started to recover I would be at normal range in about 5 days. I never had the neupegen shots.
I used to get so worried when they wouldn't rise but my doctor said that each person is different so dont worry.
I used to always get a temperature when my counts were low (always unexplained) and each round I ended up in hospital. When my counts recovered the fever would go away.
During my final round of consolidation I contracted a high fever during the chemo so my doctor aborted the chemo mid way through.He let the fever pass and I recommenced chemo 2 weeks later. When he started the chemo again, the fever came back again. This time he said lets continue the chemo round. This had never happened in my previous rounds.
Goodluck with your treatment and I hope you continue to feel well.

Lisa

Thanks Lisa, Abby, Andrea and Ed for your words of encouragement. I have often wondered why the need for four consolidation sessions. Many in the US, I think Dave is in this group, had three. My docs say they only way they do not have the fourth is if a patient has cerebellum symptoms from the AriC.

I hope no one thinks I am complaining because I truly have been blessed with a smooth treatment plan thus far. I am not concerned if the treatment takes twice as long as advertised either. My only concern is that I remain in remission. That seems to be my drs concerns as well. I also find it strange how strict some hospitals are regarding platelet counts prior to chemo. I can't have chemo unless my platelets are at or VERY close to 100.

Julie

HI!
Im chemo only too. 1 year and 9 months after remission and 1 year 4 months after ending chemo.

Hope you are fine.

S

Hi, Julie,
I am also chemo only.had four rounds of consolidations plus the induction. It normally took me three weeks for the bloodworks to be normal and then two weeks' later, I went to the hospital for another round of chemo. The more rounds of chemo you receive, the harder it will be for the counts to be normal.

I am now 1 year and 4 months post chemo, and 1 year and 9 months in remission. I feel great myself,but people around me still treat me as a patient. I also constantly worry about relapse. I guess worry about that has become a part of my life,and I am going to live well with that worry.

Love
Donna

Julie (love your name),

My husband just passed the 1 year mark since his diagnosis. He was diagnosed Aug 8, 2012 the day before his 39th birthday. Our kids were 8, 13 and 17 at the time. He was treated with chemo only (induction plus 4 consolidations). He is NPM1 positive and FLT3 negative which put him in the more favorable group like you. So far so good. His counts have been slow to recover but are all within normal range (very low normal but normal). His toughest round was the last one-I guess his body was just tired of getting beat down by the chemo. But he managed to do all 5 rounds in 5 months. We left the hospital in Jan and at first I thought about it all of the time. Now I would say there are days I don't even think about AML (a year ago I never would have thought that possible). One of our nurses was a 24 year aml survivor with chemo only-so long term survivors are out there. We are back to living our normal lives, my husband runs 3-4 miles a day and is generally feeling great. The only think different he noticed post treatment is he does tire more easily (no more 10 mile daily runs) and some gastrointestinal annoyances. Best of luck!

:) Julie

Julie,

Thanks for the uplifting post! I am so glad that your husband has done so well and that you are actually able to put the AML thing out of your mind at times. The days that you think about it will continue to diminish steadily, until you both will feel as if it were just a very bad dream.

I had a transplant (intermediate genetics), and my second birthday will be on September 8. I fully anticipate a good report on my bone marrow biopsy, which will be a wonderful birthday present.

I was happy to see that your husband is back to running, I am 60, but was a gym rat until this happened. Because of the nature of my transplant (t-cell depleted), I am still waiting to have a safe level of immune function to return to my routine. In every other way, I am doing fantastically -- my counts are totally normal and I have a better platelet count than I ever had with my "old" bone marrow.

Please encourage your husband to write on this site to let everyone know how well he is doing, so we can bask in his success!

Cliff