The Leukemia & Lymphoma Society - Fighting Blood Cancers
34 Replies Last post: Nov 2, 2009 10:08 PM by spookyproud   Go to original post 1 2 3 Previous Next
StephanieJ   101 posts since
Apr 13, 2009
Currently Being Moderated
30. Aug 17, 2009 4:45 PM in response to: aspeidel
Re: prognosis question...

aspeidel

Thanks for your reply and explaining a little about Aidans protocol.

So they are now doing a study to see if the lower risk children can do without high dose methotrexate?  Its all a bit confusing to me.  I have been so naive and was under the impression that until very recently all t-cell kids were on the same protocol as my son.  And in the new study not all children are given nelarbine?

In a way Im a little relieved that we had no choices to make, and neither did the doctors.  It would worry me sick to contemplate different 'arms' and what would be best for my child.  Are you given any say in the matter as to what course your sons protocol will take or is it all down to how the disease is at diagnosis and within the first few weeks?

I know I would want to hit it as hard as possible yet have seen the problems high dose chemotherapy can cause.

Thanks and best wishes to Aidan.

StephanieJ   101 posts since
Apr 13, 2009
Currently Being Moderated
31. Aug 17, 2009 4:52 PM in response to: Megan'sMom
Re: prognosis question...

Hi Megans Mom!

Wow my head is spinning trying to understand all the different 'arms' and such in the last few posts. 

Just glad to hear that your daughter is tolerating her treatment and is doing well.

Best wishes to Megan and may she sail through treatment without any more concerns.

Wobbles   250 posts since
Apr 3, 2009
Currently Being Moderated
32. Oct 31, 2009 9:49 AM in response to: TomsMom
Re: prognosis question...

To calculate the absolute counts from the %counts and the absolute WBC count, you convert the %counts to fractional counts by moving decimal place two places left and then multiple this fraction by the absolute WBC count.  When doing these sorts of calculations it is best to explicitly state the units being employed.

Using Connie’s data, her son has 37% segs and 5% bands.  Adding these together,

         % of wbc that are neutrophil = 37% segs + 5% bands

                                                  = 42% neutrophil.

Since the absolute number density of white blood cells is given as 1.5 G per Liter (or 1.5 x 109 per Liter), one finds that the absolute neutrophil number density is

 

                           ANC  = (0.42) x (1.5 G/L)

                                    = 0.63 G/L

This is definitely low.  Special precautions are necessary around the 0.5 G/L level.

Joe



TomsMom   44 posts since
Apr 4, 2009
Currently Being Moderated
33. Nov 2, 2009 8:21 PM in response to: Wobbles
Re: prognosis question...

Wobbles...Since I last posted I've found out that Thomas has Common Variable Immunodeficiency (CVID).  This is probably why his lymphocyte count has always been extremely low.  It still is and he's been OT since October 2008.  He's getting monthly IV IgG transfusions which boost his lymphocyte count.  We are not sure which came first the CVID or the Leukemia.  Our Doctor told me that kids with CVID have a higher rate of Leukemia just like kids with Downs Syndrome have a higher rate of Leukemia.  I'm not sure if he were to stop getting the IgG transfusions if the Leukemia would come back?????this is the million dollar question I have.  Another question...did the Leukemia destroy his immune system and caused this CVID.  I don't know the answer.  This is just another piece of this puzzle I guess.  As for prognosis...Tom asked the doctor that question and he told him, "Ya know Tom, it's either 0 or 100%".  Tom said, "I will take the 100".  so that settled the question for him.

Tom's diagnosis:  T-cell ALL, WBC 388,000, age 11.  High Risk.

Thanks.   Connie

spookyproud   113 posts since
Apr 3, 2009
Currently Being Moderated
34. Nov 2, 2009 10:08 PM in response to: TomsMom
Re: prognosis question...

Connie, I sure hope you keep us up on Toms health as time goes on.

 

Kaeden is still getting IGg transfusions even though his doctor was convinced he wouldnt have needed them past this last spring. No such luck and I dont see any end in sight. Like clockwork its every 6 weeks but he was a lot lower than normal this month and he is off all chemo which struck me as odd.

 

I have never gotten a true answer to if they had EVER checked his IGg levels prior to last Nov. so I dont know if he has always been low (as I suspect) or if it is a result of the low Lymphocytes.

Interesting to know that having CVID has a higher risk of getting Leukemia.

 

Thank you for posting the info~  I wish Tom, you and your family the best!  Cheryl~

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