Lori -- please get Keir to hang in there -- I am sure they will come up with another donor shortly and it could well be that this one is better than the first one. All is not lost. There has been no indication of relapse and it they do see an increase in blasts they can do another consolidation round. There are many options still open. But I do not want to minimize my concern for your (including Keir's) anxiety at this point. There is a tendency to imagine the worse. I believe most of us have gotten bad news and turned it into major disaster only to find out that it was not really as bad as we thought. Give it a few days -- perhaps until after Christmas and then see -- Keir's chances of relapsing in these few days is not that high. We are all praying for you -- dave

Lori,

I'm so sorry for yet another speed bump. I do recall that keir had several matches. I'm praying for both of you for peace and God's Devine intervention.

Julie

Thank you. Keir did have a lot of matches (originally 19, now down to 17). We are still somewhat unclear on why the donor & bone marrow registry refused to allow the freezing of the marrow but that was that. Now they are doing an urgent workup to find a new donor; the phone call was so rushed it was hard to gather much info.

Just asking for prayers that one be found so he can avoid more consolidation because of the heart ejection fraction issue. And because Keir (and our whole family) was pretty devastated. He was to go in Jan 1 for this 2nd time delayed procedure. He is afraid of relapse. He was due for his 3rd consolidation

Lori,

you and Keir are being tested. No doubt. But when you cross the threshold of transplant (which you will) You will be stronger for the fight that comes afterward. Fortified and ready to win.

Ed

Thank you all. I think I remember reading some of you had lower or moderate dose Ari-C for consolidation. If Keir needs another consolidation, I was hoping there would be one that would be less stressful on his heart. His e/f was still 35 about a week ago and though the meds are keeping his pulse and blood pressure low (not too low but low) and should help, I would feel a lot more ease if I knew there were some options for a consolidation to bridge him to transplant that wouldn't do further damage if a donor is not found in time before he really needed more consolidation. And have any of you had to postpone consolidation? This would be Keir's third....

We are all having a rough time with this. Does anyone know if the bone marrow registry keeps trying to find urgent matches even over holidays?

Lori -- as I recall I was in bad shape after my second consolidation treatment and was kind of begging for relief. My onc gave me a could weeks for further recovery before going in to my third. He agreed not to give me quite as strong a treatment but confessed later that he did not "water it down" very much at all. Of course, after it was all over I appreciated his doing what he thought was best. I feel that you have an excellent team working with Keir now and I am convinced that he is going to come through everything OK. I am sure that everyone is praying for you both. Take care -- dave

Thank you Dave and all. Keir has had two consolidation treatments at high dose. He was due to start his third three days ago. I know others here have had delays between doses for various reasons. Is there an art to figuring out how long is "safe"? The longer Keir could go the more time they would have to line up a donor and go straight to transplant, which is their preference. But it's a balance. As of his last bmb and bloodwork (his last bmb was 2.5 weeks ago) he was in remission.

I know these are questions for the doctors. Just trying to get some ideas on what might be coming up. I am hoping that perhaps a lower dose of Ari C might be another possibility if they have to do consolidation #3 before lining up a donor in order to minimize any heart issue. He is on Coreg and lisinopril to protect the heart now. Still asymtomatic. But the loss of the donor was a big blow. In any case, now we need to find a new one. I don't know how man Keir has left on his list who are viable but it should be at least ten out of the original 19 (now minus 2).

In any case - all prayers for a speed donor location most welcome.

Lori,

I think I might be the queen of delayed consolidations. My med team told me I was officially out of the bell curve. As a reminder, I am being treated with chemo only-no bmt planned.

The following is my consolidation schedule:

Cycle one
High dose ariC (3.0) for six day starting on 30 April. At day 38 my med team was concerned because my hct was 23 and my platelets were at 27 so they offered a bmb. The results showed remission but slow recovery of the cells that make platelets and red cells. The protocol called for my platelets to reach 100 before I could get chemo. On day 72 my platelets reached 96 and I received
Cycle two
My med team reduced my dose to 2.0 because they determined that my marrow is very sensitive to the chemo which is good and bad. They added that all patience over 60 receive a dose of 1.5. My counts still took 63 days for my platelets to slowly climb to 88. This earned me another bmb to ensure continued remission until I received

Cycle three
My med team lowered my dose to 1.5 still confident that it would be effective. Again my platelets took until day 60 to get to 76 allowing me to finally receive
Cycle four
Dose of 1.5 and today at day 43 my counts are recovering about the same as the other rounds. I must as that my anc reach normal range by day 28ish and my hct recovers around day 40ish.

Although, my issues were not related to my heart, I wanted you to hear of my journey. My med team still projects cure at 65% with chemo only even with the reduced dose. The next milestone for me is an end of treatment bmb that will test for any residue off the inversion 16.

I am praying for you and keir and believe you will have a clear path soon.

Blessings,
Julie

my third consolidation was 1.5 and my doctor told me there has been extensive research that 1;5 is as effective and half as toxic as 3.0. PLease ask them about that.

Ed,

I pray that research is true. I'm counting on it. Thanks for encouraging me.

Merry Christmas,

Julie

Thank you. I will ask.

Our feeling - most importantly, Keir's - is that he simply has to get to transplant. The loss of the donor was a huge blow. We need to find another as fast as possible. But the pressure would be lessened greatly if he could safely have another consolidation (heart wise) . So I will ask about a reduced dose of Ari C. The optimum situation is that they can find and work up a donor urgently.

I am so grateful for the support. This is a very scary time for us again.

Lori,

I had to look up the regimen that I got. It was high dose Ara-C. I have a feeling that I got that because I had failed my first induction and did well the second time with high dose Ara-C. I know that many (? most) on this site got reduced regimens, because, as Ed noted, the lower dose of Ara-C seems to be as effective as high dose. I only had one consolidation after my second induction and then went to transplant with the "full monty" -- intensive regimen + TBI. I survived. Keir will do well. Both medications he is on are cardioprotective. In my mind, the most important thing is to get the donor situation squared away (and it will be) and to move on. [BTW, when you wrote in one of your earliest posts that Keir had 19 potential donors, I nearly fell off my chair. Not everything that has come Keir's way has been negative. When you feel down, just think of how lucky he is to: (1) have you, and (2) have 18 more donors to screen.]

I AM CONFIDENT THAT MORE GOOD NEWS IS ON THE WAY!

Cliff

Lori -- I want to wish you the best on Christmas day but I know that the day can be devastating to those who are suffering as you are. Know that we are all with you and praying for you and Keir. I doubt too much will be done today because of the holiday, but I am sure that they will all be back at it tomorrow. One day should not matter that much. Try to make it through -- things will look better tomorrow. -- dave

Lori,
Thinking about you and Keir today. Praying that things move forward as soon as possible for him. I had 4 consolidations with Ara C, I think it was a lower dose than what is given during induction. It still brought my counts down very low and I would get neutrapenic fevers and have to spend a week in the hospital on IV antibiotics until my counts came up. I know treatment with Keir will be a balancing act, and the doctors will consider all options as they make recommendations. I wish everything was clear but I have found as I have progressed through my journey it never is. I think that is one of the most difficult parts. Praying for Keir, you and your family that the path will clear for you. I know Keir will get to transplant so keep holding on, it is never easy, just one step in front of the other, but I believe everything will fall into place.
Take Care,
Suzanne