We have been in LTM for a while now and once we got her meds at the right dose everything has been pretty smooth.  They did an increase of her meds back in april that brought her anc down to about zero and she was pretty sick the entire month of April and in the hospital twice.  Since then other than getting a little cold here and there life has been closer to normal than ever.  We do get her ANC checked about every 2 weeks instead of once a month just to try to stay on top of anything.

Mary

Our experience has been more good than bad.  I think expectations might be some of what plays into it (certainly not all or for everyone).  I really thought that how he felt during the worst of the treatment was what I could expect for the next 3 plus years.  The clinic staff would say "LTM things will get better, you will all get adjusted".  So, I thought they meant we would get used to my son feeling like poo.  I had such horrible expectations, that it could only be better.  So, it was a pleasant suprise when he was almost normal.  We have plugged along for 2 (holy moley, it has really been 2) years and he has done fairly well.  It took a few months to get adjusted, but on the whole it was so much better than what I thought it would be.  There are whole minutes when I don't think about it.  That being said, it sometimes makes the side effects so much worse.  When we were dealing w/ vomitting and lethargy day in and out, I just dealt with it.  Now, I go in the other room and loose it.  Its almost like a slap in the face- your kid still has cancer.  Side effects have gotten s/w more frequent and intense as time has gone on as well.  He almost always has neuro-pain after Vincristine now.  That was not the case the first year and a half.  He has more days when he is tired and several other things that are interfering with his daily life, but not real disruptive.

My son is only 3 years old, and is 10 months into LTM. He is on Neurotin daily for leg pain, Zofran for nausea, which he does not need much..Occasionally he takes Miralax for constipation. He has been on Bactrim and Prevacid since Feb. 2009, when he got diagnosed. He is on the same protocol, but do they do things different at St. Judes? I usually have him sleep with me and my husband in our bed, so I can watch  him really close and it tends to make him sleep better. I know when my son was getting Vincristine every week for DI, that is when his leg pain started, and they told me that was from all the chemo building up in his body...