44 replies to this topic

[Trey]

You would prefer to go straight to the BMT chemo and not have any more interim chemo.  Maybe the "pill" form of chemo if absolutely needed, which should have fewer downsides and should be easier on him.

I don't have much else I can provide.  Either the docs will proceed on schedule or they will not, even if they are being overly concerned about the blast count going into the BMT.  After BMT chemo his blast count (and all cell counts) will be zero.  

[tranier]

Please remember to keep BJ in your thoughts and prayers...He will have labs at 8:30 tom, followed by EEG (1 week on Tasigna, Fri.) and an ear checkup(his ear infection was the number one setback during his blast crisis this summer)...So hoping/praying that blast cells go down from Monday's report of 7...

PS - I know there seems to be a lot of new dx lately, please do not be freaked out by BJ's case - his is so rare...only 1%...as I've mentioned before the Cleve Clinic hasn't seen such a rare case in over ten years...  I thought about not posting here anymore b/c I don't want to add stress to any of you. but to be honest our family really needs your support and prayers for those of you of faith...Thanks!

[tranier]

    Please continue to lift BJ up in prayer....After todays clinic appt he went golfing...looking and feeling great..gets home and we get the call that the  blasts increased to 16...They were 7 Mondsy...His CML Doc is a top US News and World Report CML doc and wants him to ride out weekend...he has been on Tasigna  for 5.5 days after losing Sprycel response....After Mons counts he will decide what to  do as we wait for transplant to (hopefully) begin w conditioning on Oct 25 (11 days to go)..Todays counts: 2.17 wbc  4.18 rbc  13.8 hb and 88 plates.....

[Pin]

I don't fully understand the implications of going into a transplant with blast cells, but I assume it isn't as good as not having them? His other counts seem ok though. I am hoping for you that whatever his blasts or counts are going in to this, he will still do well. xxx.

[markandelly]

Prayers your way!   Hope the meds grab it back into control!

[BethG]

I am so sorry to hear the latest update. I've been following your story closely and praying from a distance. I just wanted to add my voice to this thread to let you know that I'm adding all my prayers and thoughts to your cause.

Gentle Hugs,

BethG

[grannyd]

Still keeping B.J. {my hero} in my prayers as well as the family. Tell B. J. for me what a wonderful mother he has, although I am sure he is well aware of that!!!!Praying for a full recovery!!! Prayers, Granny d

[tamithurman]

Hello. I have a son with AML and have had some of my own threads here and this is the first one I've read from you. Couldn't find your original thread, so I'm not completely aware of the "rare" situation. My son was 21 when he was diagnosed with AML on 3/26/10 with complex cytogenetics. He has a high threshold for pain/illness. Everyone said he should not have made it, but they caught it and sent him to UCSF. He had approximately 70% leukemic cells. I still can't believe it. Anyway, they tried induction and could not get it below 7%. Even when it was 20% the week before, the doctor said they were going to move on it. Anything under 20, they were going to perform a SCT, which took place on 6/29/10. This past year has been horrible, to say the least, but for the past six months, he has been doing remarkably well; however, at his year anniversary (which we celebrated), they performed another BMB and found 4% blasts in his marrow. I'm so confused by it, but now they are saying he has 4% blasts, but only 2% are leukemic. Makes no sense to me, but he is on his third round of 5-day chemo every six weeks and we won't find out if this is working until after his sixth round, which will most likely be in January. I know he's still under 5%, but I'm not good at the waiting game. So my ears perked up when I read your thread. I hope and pray everything goes as it should for you and your family. It is definitely a bumpy road, but youth and ironically, health, play such a huge role. Hang in there. tami

[Susan61]

I will keep praying for BJ, and please never hesitate to post all that is going on.  Its good for you to keep in touch with others who have CML, and as you said BJ's case is rare, therefore, it should not frighten any newcomers to the board.  Everyone should know that its the friendship and caring that gets everyone through whatever they are handling.  We are all different in how we handle this disease, and that is why we encourage people to post.  Someone might think why should I post this or that when they will not understand.what I am going through or feeling... Believe me, someone will be able to relate to your plea no matter what it is.  Everytime someone posts their great response to their treatment, just encourages others to know they can do it too.

God Bless You and BJ and your positive look at the future to be.

Susan

[Happycat]

Prayers coming his way.  I'm glad he feels so well.  Must be scary for all of you.  I'll keep praying for you all.  Stay strong for him.

(((Hugs)))

Traci

[willowbayfarm]

I've been following BJ's journey and wanted to let you know my thoughts are with both of you and prayers are on the way! 

- WBF

[tranier]

BJs blast percent today was 27%..the tasigna is not taking over where the Srycel stopped...His other counts

wbc 2.41, rbc 4.21 hb 13.6 anc .96 and platelets 82...still the same numbers he has had for quite a while...Meet with docs at 1 tom...have to do outpatient chemo as we have to bring those blasts down before next Tues - admit for transplant...

Again, please pray for my amazing 21 year old son...he is a fighter.

[grannyd]

Praying for B.J.. He is an amazing young man..... & I think he gets it from his MOST AMAZING MOTHER!!! I know how a mother feels.....& B.J. must pull his strenght from you & I want you to know you & the rest of your family are being prayed for also. May The Lord give strenght to sustain all of you thru the next few weeks. Sending prayers your way!!!  granny d

[tamithurman]

I wanted to tell you that I'm sorry you're in this club with the rest of us, but hope you are getting some support from everyone's experiences. My now 23 year old son, dx 3/26/10 with AML with complex cytogenetics, has had a setback at his one year. They found 4% blasts in his marrow and then said 2% of them are leukemic. I don't know what the other blasts are. I read and re-read the report, but it's like reading Greek to me. He is on decitabine chemo, 5-day treatments every six weeks with three more treatments to go.

Anyway, I know what you are going through with looking at your son and seeing how healthy he is (mine too) and not being able to connect the two. Makes no sense and I'm sure both of us would gladly change places. I heard a saying the other day. "Some people are able to travel the easy road in life while others travel the muddy road. The ones that travel the muddy road are much stronger in spirit and strength."  I hope your muddy road has given you and your boy strength and resolve to beat down this horrible thing called cancer. I will send many prayers your way.  xoxo tami

FYI...BJ are my son's initials too.

[nathaliece]

I agree with Granny D.  BJ is a strong young man with an amazing mother -- what a powerful combination.  Sending prayers, hope and healing thoughts your way.  Thanks for taking the time to keep us posted.  As you can see, there are lots of folks pulling for BJ on this board!

Nat

[tranier]

Thank you sooo much for your support..means so much!!!--Just for the record...BJ s spleen was not enlarged di

at June blast crisis...nor is it currently enlarged...Will update soon

[Teresabourgeois]

Tracy,

I've been following BJ's story since June and wanted you to know that I am praying daily!!!  That's all any of us can do.  Turn this over to God and BJ is in his hands.  He hears us all and there are many people praying for BJ and you.  Huggs!!!

[jjg]

I've also been following since June. I expect there are a lot more people praying for BJ than just the ones you see posting.

Hang in there the transplate date is getting so much closer now.

[tranier]

ZERO BLASTS!!!!!  TRANSPLANT ADMISSION TUES!!!!  THANKS FOR YOUR PRAYERS AND SUPPORT!!  AFTER TUES I'LL PROBLY JUST HAVE TIME TO KEEP HIS CARINGBRIDGE UPDATED AND POST TO TRANSPLANT GROUP...PLZ FOLLOW ON ONE OF THOSE!!!  COULDN'T MAKE IT THRU WO

YOUR SUPPORT!!!! WITH MUCH JOY, TRACY!!!