Congratulations! It is weird to reach this point and very weird to stop going in at least once a week. Don't be discouraged if there is some fine tuning to get the med levels right. We are almost to our one year anniversary of starting LTM (4/15) and I can't believe it. Start counting down those spinals and steroid pulses!!!! Good luck! And for us the last year has been "almost" normal; hopefully it will be for you too!
My daughter is scheduled to start LTM on Thursday. I don't know if I should laugh or cry. The last seven months have been a roller coaster of emotions. I don't know if I know what it will be like to be normal. Brianna has handled treatment great with minimal issues but I still come to this page everyday to keep myself educated. The Onc said that we will go to the clinic in two weeks for bloodwork. Once the fine tuning is done then we will be on the once a month schedule too.
Brianna - dx Aug 2011 pre B ALL
Hi - Hanna was Dx in June 2011 ...you really sailed through since we're at almost the same point! That's great! We had several delays during treatment, nothing unusual, but low counts waiting a week, etc ....good luck with your start of LTM. I come here all the time also - I'm trying not to get too obessive though, and will try to get back to my life that I've ignored for so long now -- piles of stuff from hospital stays, laundry that never ends ...hahaha...I think that it may be good to gain some control back in my life ...!! Any who knows, maybe even excercise - hahaha
Ben (7) just started maintenance and was a mess for 2 days after the steroid pulse. He couldn't walk and he told me it felt like something was eating his insides out. We used tylenol and hot water bottles by day and codeine at night. The onc scheduled him for a dexascan, for osteomylitis (sp) the next time he is accessed.
Congratulations!!!! I can't tell you how much love and support I'm sending your way. Having been a survivor of cancer myself and then watching a loved one go through it, I though it was almost harder to see a family member experience treatment. When they moved into maintenance, I felt the same kind of overwhelming joy. It's not done yet, so make sure you ace the medication schedule and take especially good care of your son and yourself!
We survived the first week with no issues. Brianna doesn't swallow pills yet so I have to crush everything. Steroids are given with ice cream and 6MP & MTX is given in chocolate syrup. This past week my husband and I would wake Brianna up at 10pm to give her 6MP but I can't imagine doing that for the next 1.5 years. I did the calculation only 78 more weeks, 19 steroid pulses and 6 LP left to go till the end of Maintenance. Curious - is anyone on study through Maint? Brianna was in the COG0932 but we pulled her out prior to randomization which occurs at Maint.