Jackie,

Julian and I are at the same point in our chemo only treatment; however his counts are so much better than mine. Especially his platelets. All of his counts are in the normal range and off his med team says not to worry I would not, especially with those numbers. My platelets dropped from 120 to 103 last month and I spoke to my coordinator today about it and she said they are not worried. How often does Julian have labs, mine are checked monthly for the first twoyears.
Julie

Jackie- we are experiencing the same exact thing right now. After reinduction Tonys counts sky rocketed back to normal ranges within 2-3 weeks of count recovery, WBC 5.6,heme 12.1, ANC 4.37 and plates 247. But then 2 weeks later at last weeks labs WBC 5.0 (down) heme 12.6(up) ANC 3.63 (down) but plates dropped down to 166!!! So needless to say I was scared, Tonys doc wasn't worried though. So we checked in today for BMT day (-8) and labs drew today after Hickman port placement procedure show WBC (down again) 3.3, heme (up) 12.7 and plates down a bit again to 147, ANC not back yet. It's so stressful, but we were told that count recovery shoots up then can drop off too.

Julian's labs are also monthly. I think that is the case at least for the first year. I guess I was just shocked by how much things dropped. One possible explanation is that this was actually the first month (I believe since March) that he has not had any sort of minor infection during the month. I know for certain that he had ear infections within two to three weeks of his labs in April and June (the April one was actually during the time he had his follow up---his WBCs were over 7 on that visit). He had a cold or some little thing before his May visit. I am not sure that infections would affect platelets, but those are still well in normal range at this point. I recently found an AML group on Facebook as well, and I have had a few people share that their counts remain low even after years in remission, so perhaps that is not so unusual? Most of them so far have had transplants, but I'm not sure that would really matter. If you respond well to chemo, I assume it would be nearly as devastating to the marrow as BMT. In my heart I believe that he is okay. I just wish those stupid numbers would play by my rules (as I am sure you do as well)! :)

Hello Jackie. If I can add my medical knowledge - platelets are also what are known as 'acute phase reactants'. This means that they will often go up during infections. As will the white cell count of course so I wouldn't be worried by Julian's labs. In fact I think you should be most reassured that he hasn't had any infections for the last month! Those bloods look very good to me. I have 6 weekly bloods and yes they can fluctuate from month to month, especially in response to infection.

The other thing is to not get too hung up on numbers. Lots of things eg technique when taking a blood draw or lab error can make numbers do funny things. While receiving treatment I knew I needed a transfusion but when they did my labs my Hb came back at 94. My docs trusted me and transfused. When they rechecked my Hb was 72 post transfusion! It's very important not to get too hung up on numbers. Trust your doctors - they are blood specialists. If they are not concerned about those counts then I wouldn't be.

Jacki -- if all his numbers are in the normal range you should not worry at all about how they vary within this range. Several of mine never got back to the normal range, so my onc said this is your new normal -- go and sin no more. So, I went. That was about 4.5 years ago, and they are still not all back to normal, so as long as they are in the normal range, he is doing great. And yes, too high can be a bad indicator as well as too low, so as long as he is in the normal range, things are good. Praise and thank God for all good things -- dave

So grateful for all of the insight that I gain from others in this group! I agonize over numbers. His oncologist said that platelets are what she looks at the most, and his have been up and down (but never low) during follow up. They were low at diagnosis. So was his hemoglobin and ANC. His WBCs were elevated, but not significantly. He was still well within the normal range. It is puzzling to me. I know I need to stop worrying about every little thing, especially if his doctor is not. I know of two other children who have had the same treatment as him and are in various points post-treatment, and when they post numbers, the ANC is always in a nice comfy range (3.0-5.0 usually). It is hard not to compare and think that something might be wrong, but the only time Julian has ever been over 3.0 since Tx was while he was fighting a virus. I think it might get easier as I see more of the bouncing around. I hope so!