So sorry you are both in such a panic, I know how the numbers can be heartstopping and saying "don't worry" is like saying don't breath. I can tell you my husband's numbers were all over the place after his transplant, they would be up and then way down the next day. There never seemed to be any ryhyme or reason to it. In my husband's case finally over time they stablized. Have the doctor's or nurses given you any insight as to what they think may be causing it? Please remember Tony is still very soon after transplant and his body his hard at work adjusting to the the changes from the new stem cells.

Sending you both prayers for strength,
Colleen

I'm so sorry to hear this. There are times I didn't want to hear from his oncologist so I understand the anxiety and nervousness. I will be praying for you and tony- for strength, peace and health.

Cc

Keir had a very similar issue. His platelets crashed like that and he was removed from fluconozale and they gradually began to come back up. If the doctor is concerned they will do a chimerism test. Believe me, I am the last person who would tell you "don't worry" since I'm a ner wreck from anxiety, but platelets are strange things and there is a point where they often fall post transplant after rising nicely. . I didn't realize until now you were also in Chicago. May I ask what hospital you are at?

Lea, I too had a similar issue only a couple weeks later than this and I can tell you I was very, very scared. it shook my transplant team too because they did a bmb that day. everything turned out ok and I was back to near normal count the next week. I don't think this is a rare occurrence. unfortunately that is not going to help with both of yours worry. I can and do offer my prayers though, you all have had your fair share of burden.

DaveJ

Lea I am so sorry that you are having to go through this. Being the caregiver is extremely stressful. From what I have read, I think that you do a lot of research and know quite a bit of what is going on. This is both good and bad. In our situation, I am the worrier and my husband just concentrates on getting well. Right now I am worried about his numbers also, so I know what you are going through. I will pray for you both. As others have said, the fluctuation of the counts is to be expected and we will hope and pray that they will go up soon.

Omg Lea,
I am so sorry for what you are going through. I don't understand this stuff much and the more I read, the more I think I want to bury my head in the sand. All was going so smoothly for you, I was quite honestly jealous. My bro is having a rough road getting the numbers to rise and now the bilirubin is up. I hate all this anxiety.
I wish I had more to offer but you have my thoughts and prayers. I do understand at least in part what you are going through,
Hugs
Twilight

The recurrence of AML is evidenced by a higher proportion of blasts than normal. If this cannot be measured, then you do not need to worry about that. If that were an issue your med team would order up an BMB. But do not be concerned until that happens. Please listen to Lori -- she has gone through what you are going through, and Keir is doing fine now. It takes a while for the new bone marrow or stem cells to "click in," so to speak, and to do their thing. I have said before that the greatest concern on this forum is variation in blood numbers. Please read some of these back posts and you will see that given a little more time things do work out. Trust your med team; if additional actions are necessary they will advise you of it. We are praying for you and Tony -- dave

Hi Lea,
I can feel your panic and can so relate to your reaction. I panic at the slightest possible sign of a relapse but it always turns out to be a bad case of over-reaction on my part and I hope this will prove to be the same for you :) I recently experienced 4 blood tests in a row with falling platelets and wbc and anc - hb stayed stable. My haem onc told me that bloods will always move around - most people don't get tested as frequently as us patients so they would never see that their counts would also do the same. My onc is so very calming and reassured me that if something was going on she would let me know when it was time to worry and it's not now. True to form, my last count had my platelets going back up. See if you can talk to one of the team to give you a pep talk - it always works wonders for me and day +25 is still so early days. Mine were jumping around all over the place and I didn't need immunosuppressants as I had a transplant from my identical twin. In fact, they used to look at my lymphocyte counts jumping around and laugh that we were 'fighting' with each other still :)

Lea

It sounds like the numbers like to bounce around alot and I pray this is the case with Tony. Please try not to worry yourself sick have a talk with his doctor instead and find out if there is reason to be concrrned.

You and Tony are always in my prayers.

Karen

Lea,

I hope that you are able to take at least a few deep breaths and relax at times through all of this. Like everyone is saying, just when you think the counts are stable and rising, they tank. My issue was a bit with the platelets, but more with my ANC. I am not talking about a minor drop. My ANC fell as low as 0.6 four months after transplant and I had to get IVIG (immunoglobulin) and neulasta constantly. I was in a panic, but things righted themselves. I am telling you....the bone marrow environment is different for the transplanted cells than they were in the donor's marrow. They call this the marrow environment. That is in part what causes these scary departures from stable counts. I wish I could give you a reassuring hug. Please believe me. Tony will be all right.

Cliff

Lea,

I am sorry to hear that you are going through this. I can only imagine how frightened you are feeling. I do understand the worry over numbers all too well. I trust that Tony's medical team is on top of it and will act if they are concerned. I know for me, it never seems like Julian's doctor is concerned, even when I am. I am still stressing over his low counts from two weeks ago, even after confirmed parvovirus. He gets his 7 month blood work on Wednesday, and while I am optimistic, I am nervous too. I examine his skin like it's my job! It seems like BMT comes with so many more abnormalities. We are praying for Tony to continue on the positive path he has been on! God bless your whole family!
Jacki

Dearest Lea,

I hate, hate hate, double hate, loathe entirely (in my best Jim Carey Grinch impersonation) PLATELETS. Conversely, when my platelets hold or go up I am madly in LOVE with them. I will not lie, a trend like that would concern me and has concerned me as I've experienced it. Having labs every other day as Tony is right now, focuses even more on the trend. I know when my platelets dropped after treatment ended, from the 90s to the 50s in two weeks, if labs were taken everyday other day, my numbers would resemble Tony's.

In regard to his ANC, I reviewed my AML nerd spreadsheet where I track ALL my labs, and confirmed that for all four consolidation cycles I would stop my daily neupegon shots on day 30ish with an ANC around 3.9 to 4.0. Within five days, my ANC dropped to around 1 to 1.2.

I know chemo only is different than BMT but I hope this helps somewhat. You know how closely I watch Tony's progress as our paths are so similar. I truly believe Tony's journey will inspire and encourage others and this speed bump will be another point of inspiration as you put this behind you. I truly believe this.

You have every right to feel overwhelmed and panicked after close to three years of AML torture. As always, your family is in my family's prayers and especially for higher platelets on Wednesday.

May God grant you peace in the storm.

Julie

Lea,
I'm so sorry to hear your worry. It lookslike you've gotten great support from more seasoned members here. I just wanted to send my prayers of strength and healing for you guys.

Lora

Chalk up another night to no sleep, anxiety, and my mind just racing. I can't stand living this way. This dark cloud hanging over our head, following us wherever we go. Being away from izzy, who is the light in our lives, makes this a million times harder. We get to visit, but it's just not the same.
Thank you to everyone who replied. I guess there is no "normal" recovery after hst, everyone is unique.

Colleen- thank you, you're right, it's impossible to not let the numbers get to me, but I continue to try to stay positive. The doctor said this is normal, in many ways, just not "ideal" they think he's generally doing great w exception the the platelets count drop. We have a 30 day BMB on Friday (Tonys real birthday, great way to spend it) and they say let's just wait and see whst the marrow says. The anxiety I will have till then is immeasurable

Lori- I'm so glad Kier is doing well. Interesting about the medication being suspect. Tonys on a higher dose of Voriconasle (anti fungal) bc the Prograf counteracts w it, and so to keep Prograf stable the had to increase to Vfend. He's also on all the other usual suspect meds, plus a trial drug called CMX1000- to combat CMV.
We are at university of Chicago, Dr Wendy Dtock is the Heme/Onc and Dr Liu was attending at transplant. (We were at Rush last year for Dx all treatments (induction + 4 rounds consol, but switched after relapse)

DaveJ- thank you. Did they ever say why your numbers tanked? Did it happen after day 30 for you? I know when you're put on Bactrim abx around day 30, you can expect a big drop bc of that drug. Thank you for the prayers

Kat & Twilight- I DO know too much! (Cliff would not be pleased w this behavior of recent research.) tony relies on me to help him in the decision making ESP bc of the trials we've been offered and now I know too much again, I hate it, need to burry my head in the sand too I think:( hoping your husband responds to the treatment and that Twilights brothers numbers come up soon too

Tas- thank you for the insight as well, it does help to see others have gone through this too. Tonys platelets during chemo only treatments always recovered quickly and strongly, and even at discharge post SCT They were almost at 50k, didn't need transfusions or anything. So we're not accustomed to this type of fall, but just hoping it's them getting used to their new environment.

Dave- thank you, we're lucky to have you on this board! I spent hours reading transplant team 2013 thread the other night, as well as Lori Cs sons story Among many others, the counts are the Bain of my existence. I am trying to find better coping skills, but anxiety is a serious problem for me since watching my Dad die from AML just one year before tony was diagnosed. Always hoping for the best but expecting the worst, I know I need to change that mind set, but everything that's happened to us with this horrid disease, is very very hard to overcome.

Cliff- always reassuring to hear your input. I'm sure the ANC drops were terrifying! In my heart I feel that tony will beat this and be ok too, nevertheless these drops scare the hell out of me, and appreciate you always being here!

Julie- whenever I think of platelets, I think of your love/hate relationship w them. We've never had a problem until now w them and so I'm sure I similarly share your sentiments. We were expecting the WBC to drop after the bupp gem stopped, thankfully they warned us of this, doesn't make it any easier though while your sitting in the room waiting for the numbers to come back.

Things have gotten so bad for me that every little bruise or mark on Izzy has me thinking she has lukemia, how horrible is this?

Friday will shed some light on all of this and I just ask everyone to pray for good results, clean bone marrow and recovering counts.
Thank you
Lea

Lea, I was so relieved that I was ok that I never even asked why the numbers dropped. I think I was around day 40 or 45 and I was on the Bactrim. They took me off it for a while thinking it was giving me rashes but I am now back on it. Its either take that or get monthly breathing treatments. I wish I had an answer for all the stress and worry, try to stay positive. Praying hard for you guys.
DaveJ