I dont know the answer to that one. I've been fortunate enough to not have to find out the answer to that. I would be pretty angry about the bmb though. heck its not even me and i am angry they havent given her the results. this isnt some trivial test to be taken lighty, they know that and should care about that. Plus for me at least that proceedure is VERY painful. the good news is that she is doing well and her bloodwork is good. Continuing prayers for you both.

Dave J.

They did give her some type of anesthesia that made her not remember the procedure this time. When they did her bone biopsy at her initial diagnosis, they had to do it three time in the same appointment because they said her bones were so hard. The third time they came back in the room and said they had to do it one more time because they still didn't have enough bone, she just lost it and they had to wait awhile for her to calm down before they could actually do the third one. My sister has had 5 children, a hysterectomy, and knee surgery without having to take any pain meds after other than Tylenol so I know that procedure must have hurt pretty bad. Now they put her semi under to do that and the aspirations.

She is much calmer now when they notify her that she needs one. And it keeps her husband out of prison since he doesn't have to kill anybody. :) He was in the room with her for the bone biopsies. It is really hard to watch someone go through pain but, as we all know, it is especially hard when it is a loved one.

Debbie,

I am glad to see that Jos numbers are coming up but like Dave I am appalled that the BMB results are now two weeks out-shocking to me. I do not think this is a bad sign just frustrating. As long as Jo is calm and at peace with waiting, I guess we all need to defer to her. But I must admit, like Dave, this situation gives me anxiety as I think about how blessed I am to have the care I receive. The pathology my BMB is done right downstairs and as I've said previously, I've NEVER waited longer than 24 hours and I've had seven. The two time, the specimen was tested for Inversion 16-at DX and at end of treatment, it was sent to two other labs. This result took a week but the initial no blasts was given again within 24 hours.

I am also so sorry to hear of the pain the procedure causes Jo and you Dave. I am also blessed in that I have very little if any pain to include the aspiration portion. Ny favorite PA-Dan Dan the Bone Marrow Man (my nick name for him) has done all of mine with no meds except of course a whole lotta lidocaine pumped in via syringe. He has hit some hard calcified spots due to previous biopsies and my husband, the nurse and I tease him because he breaks out in a profuse sweat. Even those situations have not been painful-praise God!

When my counts were slow (every cycle) I would have a BMB and my doc would be able to tell from the pathology report that the red and/or platelets were slow to recover. Remind again, how many consolidation sessions Jo has had-I thought it was two and how many days from her last start of consolidation she is-I think around day 70?

I know of people who have only been able to tolerate two or three and the plan is just to watch them as all are watched and if relapse occurs go with a BMT. As I've said before, outside of the US, three is the standard. When I had my check-up on Monday, my Doc Finn Peterson (who has 35 years of adult acute leukemia research/experience) said that there is no data that a dose of 3 of HDAriC is more effective that 1.5 which is where I eventually landed for sessions three and four. My prayer for Jo is that after her counts go up and they will go up, they give her a lower dose. Remember the effects of chemo are cumulative so each session may take longer.

My med team has another AML patient who is also experience (out of the bell curve) count recovery and they are using my success to ease his concerns. I asked them to have him contact me if he like. My goal is to help (by praying and encouraging) other through this maze. Please let Jo know I'm praying for cure for her. Remind her she hit the AML lotto with Inversion 16. Hold on to that.

May God bless you,

Julie

you're one of the lucky ones Julie that it doesnt hurt. My pa told me that for some people that she has done, it just isnt painful. I've never been sedated or anything just the lidocaine like you said. Even the lidocaine stings like crazy. your husband is doing good though, if i had to watch my wife go through that i think i would pass out. I've had 5 different people do the six that i have had so far and my pa erin is the best at doing it. but no matter what, when they start sucking out the marrow and taking bone it HURTS.

Hey Julie,

Jo has been back to MDA for 1 round of chemo since her induction. She was due for the 2nd round February 17th. With her being in this clinical trial, I'm not sure how her treatment plan might deviate from/or if it will from the normal treatment. Supposedly she gets a third type chemo that others normally don't that is specific to this trial. She was told at the beginning that it would be eight months of chemo after induction and then hopefully nothing else needed except check-ups. Maybe we misunderstood and they meant it would take 8 months to complete whatever regiment it was, I'm not sure.

I wish I could go to the doctor's with her and hear what they say but her husband has been a fantastic support for her and has been with her every step of the way. I wouldn't want to try to overstep my place. I have just told her if she needs anything from me other than support, to just let me know.

She has a friend she met at MDA that had a different type of AML but one with a favorable prognosis also and he has relapsed a month after finishing his chemo treatments. He is waiting on at SCT. This does worry her but I told her she has a different subtype. Still, it's hard not to worry.

Her daughter just got engaged with the wedding being planned for 9/12/2015. This gives her something else to focus on. Planning and getting healthy for the wedding! She will have lots of help so she doesn't over do it!

Just like Jo, my counts took forever to come back after my first consolidation, 73 days. This is when my med team lowered my dose from 3 to 2. The eight months for consolidation seems reasonable. I started mine on 30 April, 2013 and ended on 17 Nov, 2013.

My husband goes to every appointment even now just for labs. That is dad that her friend had relapsed so soon. Lea's husband Tony is just one month ahead of me with inversion 16 and relapsed. I try to only focus on one day at a time. I read Matthew six often about Jesus words about worry. It helps me so much. Praying for Jo

Julie

Well, blood work day for my sis. We know she will need blood this time because last time she was borderline and they let her skip but she is dizzy when she stands up and gets very out of breath if she tries to do anything at all. So we know it has dropped even further. I hate this, I really do!!

I do not expect this to be too re-assuring to you, but of all the things that people on this list have worried about (including me when I was in the hospital), the failure of the numbers to EVER come back is by far the biggest one. I think Julie had this problem for weeks, and all we could do is assure her, like you, that we have not seen a case yet here (at least I have not) where someone had to be a bubble-boy for life because their number did not come back. Now, they might not come back totally to the normal range -- my wbc and platelets never did. But my onc just said that was my new normal amd I could live with it, which I have now for well over four years. So please have confidence -- it just takes a while longer for some than others, and this is one areas that it seems that the med folks underestimate the time consistently -- they did for me as well and needless to say I asked my nursepract -- are you sure they are going to come back? And she said: "they always do." And they did. And they will. We should keep praying nevertheless, and when they do, let's all be ready to give thanks -- dave

Debbie

I am so sorry Jo still does not have her bmb results and is still needing transfusions. Like her, I seemed to need one final red blood transfusion late into my cycle. Praying this will be her last transfusion. Based on my experience, it sure seems like her bone marrow has really been pounded by the chemo.

With a projected chemo date of 17 Feb, it seems that she is nearing 75 days over. Had her med team mentioned what plan b might be? Once I went outside of the bell curve at 60 days between cycles, my med team became pretty concerned. They even mentioned bmt of my counts did not come up. I'm glad that Jos platelets only to get to 50 rather than 100. I'm glad that she had been able to remain calm. Praying that that continues and that she can get her biopsy results.

Julie

Julie,

She is driving me crazy with her bmb results. She won't call them again to ask. I think she is afraid of what they might tell her with the problems she is having getting her blood back up (her hem was 8, wbc 2.7, platelets did go up to 27 which is great because it had gone all the way down to 5.) She feels no news is good news and she is going to leave it like that. She says they will tell her at her next appt. I guess this is correct but her next appt. may be 2 months from now at the rate she is going.

They have not mentioned a plan B. They just keep postponing her appointment to come back for the next round of chemo. If it were to go to a BMT, I am her only shot at a perfect match. We have another sibling but she is a half sister so I am guessing she would have to go to the registry like others on this site if I did not match. I guess we will see what plan B is if this continues much longer.

How often is she have her bloodwork done? My experience at that point was 3 times a week getting blood draws to check where i was at and whether or not i needed a transfusion. Is she getting checked and consulted like that? I hope so. I know everyone is different but i cant believe they would let her go without getting checked for that long. I had many tranfusions of blood and platelets during my induction and consolidation chemo. praying for good blood counts so she can get back in there to take care of business.

Dave J.

She gets lab work every Monday and Thursday. Last Thursday she was borderline in needing blood so they let her go until Monday. By that time she was very short of breath and dizzy so I'm guessing that was not a great decision. She gets her labs here at a local oncologist's office and they send the results to MDA and also send her for transfusions if she needs it. We live about an hour and a half from MDA so they don't make her drive for blood work.

Since February 13, she has had I would say 10 transfusions with a couple of those being platelets only.

We are waiting to see what MDA says about this round of lab work but I know for sure it will be no chemo yet. The journey continues I guess.

Ok, i understand. I stopped counting how many transfusions i had, i know my platelets were almost as many as my blood though. I was lucky in that my counts recovered after a couple of weeks. My consolidation chemo was like clockwork, one week in the hospital every month, I usually would get my taste and appetite back the week before i went back in so i had to eat a lot in that week to stock up.

I wish she would call in for her bmb results for your sake if nothing else. I had to call today to get my results on the donor status and they had them, just hadnt called me yet. Only went up one percent so i am a little disapointed today. The bright side is they didnt go down.

thanks for the update, continuing prayers for you both.

Dave J.

So full disclosure, not only did I track all my transfusions to include the bump that I got from my platelets but I also track every lab results on a spreadsheet entitled Julie's Journey :-) AML Geek alert!!!!

During all four consolidation cycles, I consistently needed platelet transfusions starting day 12 through day 30 for a total of six transfusions. My parameter for platelets was 15. For red blood I needed three transfusions (two bags) starting day 14 through day 38ish. My hematocrit HCT parameter was 25. So I usually needed six transfusions days per cycle some platelets only. Hope this helps.

From the dates you've given, It seems to me that Jo's last chemo start date was around 1 Feb. This means she is nearing 90 days. My med team got nervous with me around 60 days; however, they reminded me that they worry more about patience whose counts do not go down enough or long enough meaning the chemo is not hitting the marrow.

My med teams concern was two fold- we would lose momentum and the cancer could return. This is why they required a BMB before starting my next cycle.

I know I said this before but no BMB results for Jo is upsetting me, I can only imagine how you feel. God gives us peace in a storm and it seems HE has given Jo an extra portion.

Praying daily

Julie

Lab work yesterday. Counts stayed the same except for hem. It went up but they think that is from transfusion on Monday. But, at least nothing went down.

She finally got bmb results and it showed blasts up from 1% to 2% but the doc said that was nothing to be concerned about right now. In the trial she is in up to 3% is acceptable.