I'm just wondering how many months OT it took for your childs counts to be in the normal ranges.
Pete's are still pretty sluggish, even though they got him to stop taking bactrim a month ago to see if they could get them to raise a bit. They are all ok, just not where I would like them to be.
Thanks a lot,
Thanks so much for your reply, DWM. I'm glad to hear that your boys counts are looking so good.
I got Pete's done this week (he is now 4.5 months OT). Haemoglobin was fantastic at 141 (14.1). He's nearly always done pretty well with his haem during treatment.
The other counts were not as impressive...
Platelets 148 (148,000)
Lymphocytes 0.74 (Still trying to get them over 1. How were the boys lymphocytes?)
Still hoping some other OT parents will chime in with how long it took their kids to get normal counts....
Maddie, OT in Oct is in the same place, H/H normal, ANC 1900 and platelets still kinda low at 109, also Maddie is complaining of neck and back pains, the Onc told us yesterday its the chemo, steroids leaving her bones causing the aches and pains...anyone else have this experience? Also, Maddie has gained a lot of weight, 4 lbs in the past month, a little chunkster...Onc also says that is to be expected but try to slow it down, anyone else experience these things???
Robyn, we haven't had the neck and back pains, so I can't help you there. But Pete did put quite a lot of weight on when he finished chemo. He put on about 4.5 pounds in 6 weeks. But the weight gain has tapered off since then.
Interesting that Maddie has similar counts to Pete. Thanks for putting them in. Do you know what her lymphocytes are?
Tomas has a clinic visit tomorrow, we'll get the counts from last month also.
For a few weeks Tomas was vomiting daily, the last time he did was on Christmas when I opened up my present. It was a pitol and he didn't think that it was right for Santa to give a pistol as a present. We finally figured out that the vomit was stress induced, we do have an appointment with GI on the 18th to double check. His weight has been consistant, his appetite changes on a daily basis; somedays a little bit of food, somedays he's eating like as though he is planning on going into hybernation. He has been drinking 2-4 glasses of soy milk everyday.
Getting the port out 13 days after he took his last 6 MP, I think with the port gone, a lot of grey hair stress has been relieved.
My daughter has been OT for almost 5 months. At her last visit (in December), her counts were: WBC 8.9, Hem 12.7, Plat 202,000, and ANC 5,990. This was the highest her WBC and ANC have ever been. From August to December, the WBC and ANC crept up each time while the Hem and Plat are always in the same range. Funny you all have mentioned the weight gain. My daughter's height has skyrocketed. We're going from OH to FL on Saturday so I had her try on some short-sleeved shirts and NOTHING that she was wearing as recently as October fits her anymore! From her Nov to Dec clinic visits, she grew 2 cm and gained 2 lbs. She is suddenly the same height as her peers!
sorry took so long to answer, had to get home and get the copy of her labs, they were done Wed, lymphs a little low 1.02, monocytes back in the normal range .64 (were low last month, had a virus) How much does Peter currently weigh? Maddie is 52 lbs, so 4 lbs is a lot!!!!
Thanks for the replies guys.
@ rmajor, thanks for Maddies lymphs. 1.0 is what we are aiming for. As that is when you are meant to be able to stop the bactrim (which we have already stopped in an effort to make his counts rise).
Peter is a real shrimp. He weighs 19 kg, which is 42 pounds. I have always been amazed at how quickly the weight comes off or goes on him.
@Sara, your daughter's counts look magnificent, and just what I reckon Pete's should be at by now. And you are right about the height gain; Pete has definitely sprung up since OT.
@Paul, I will look forward to seeing Tomas's counts. Esecially the lymphocytes. I can imagine how stressful all the vomiting has been. I hope you can get it all sorted out.
And re the port, I don't think I want them to take Pete's out till I see some normal blood results. I'm just a bit worried that he might have some immunodeficiency worries. Although one good blood result will knock that worry on the head once again.
I hope some more OTers will put in their kids results...
3 Dec 7 Jan
ANC 2750 ANC 2766
WBC 5.5 5.3
RBC 3.87 (L)
HGB 13.4 12.8
MCV 101 92
PLT CNT 161 124
SEGS 50 52.2
ALK PHOS 134 156
AST 35 30
ALT 29 28
TBILI .4 .2
DBILI .0 .0
IGE 315.30 406.4
Like last month, we left before the complete results were back, I just talked to one of the nurses to get todays numbers. The doctor will call later for a complete read.
I just talked to the doctor, the counts are going to be all over the chart for a while. From the CBC, one of the indicators that leukemia could be returning is if the MCV count goes up, this is in addition to WBC & RBCs going off of the charts. There is another 'milestone' that I just learned about today; when he is one year OT, there is another physical that deals with the after effects of treatment.
I'm a bit confused here, you said that when MCV is elevated that could indicate a sign of relapse. I always thought that MCV is measured by the hematocrit, which is the red blood cells volume. The sign if Leukemia is when the white blood cells elevated and the red blood decreased, that's why they are anemic. Am I wrong??
Sorry about those questions but the "R" word scares me to death, can you please clarify the elevated MCV??
That is what the doctor told me yesterday. I had to do some research to get a better answer then "Because the doctor said so"
There is a study that was done that showed, at relapse, 71% of patients with an initially increased MCV had an elevated an elevated MCV as contrasted with only 23% in the group with an intially normal MCV.
Okay, I don't consider myself a person who needlessly worries about the "what ifs," but that scares the crap (am I allowed to say that?) out of me. I just randomly looked at the last approx 10 labs or so of Elke's, and her MCV is ALWAYS elevated (abnormally high). Please someone else chime in and tell me that this is "normal" during treatment. This should teach me to stay out of threads labelled "OT" when we're not there yet. Perhaps this is just an OT concern? (And I consider myself a fairly good medical researcher, but didn't initially follow the abstract in the link. Was the sample set from children who had all relapsed? Did just some of them relapse?). Ugh. Again, I am NOT one of those people who spend my time worrying about these things, but I guess I just don't understand this connection between relapse and MCV values.
(Also, doesn't the sample size seem fairly low in that study?)
Amended to add: just noticed that this study is from 1979. If I continue to be concerned, I may dig a little deeper for something more recent. Or perhaps I'll just calm down on my own .