The Leukemia & Lymphoma Society Community: Message List

Re: Curious about % chemo while in Maintenance

communityreply@lls.org — Sat, 01 Sep 2012 19:26:20 GMT

Our onc doesn't like IV pentamidine because of the side effects, but inhaled pentamidine is more difficult to schedule and arrange I think. We were finally able to get our monthly inhaled pentamidine done at the hospital once a month, but it is a pain with insurance bills, etc. (even with both primary/secondary insurance). I think we were at 25% daily meds part of maintenance, worked up to around 50% for the remainder - was all Justin could tolerate.

Re: Curious about % chemo while in Maintenance

communityreply@lls.org — Tue, 21 Aug 2012 13:48:38 GMT

We switched from Bactrim, to Mepron, to inhaled pentamidine, after I found out that Mepron could also drop counts. Just yesterday a friend said that prevacid could drop counts, which surprised me - never thought about researching the protonics that we used throughout treatment.

Re: IVIG?

communityreply@lls.org — Mon, 13 Aug 2012 06:45:18 GMT

We had IvIgG throughout maintenance, never had a terrible reaction, are off treatment now and he hasn't needed any more yet (knock on wood). I think it is very common for many kiddos on treatment and really helps to keep them healthy.

Re: Getting Started on the Maintenance Roller Coaster...

communityreply@lls.org — Mon, 13 Aug 2012 06:40:46 GMT

Yup, maintenance can be tougher for some kids whose counts just bounce around like crazy. Ours did too, on the slightest of dose increases. We finally figured out a system, but often still had to go for count checks weekly throughout. Give the docs some time and hopefully you guys will figure out something to make it go smoother.

Re: Chz Update - Just want to give encouragement

communityreply@lls.org — Mon, 13 Aug 2012 06:35:06 GMT

So great Noel, love it!

Re: Curious about % chemo while in Maintenance

communityreply@lls.org — Mon, 13 Aug 2012 06:32:39 GMT

Hi, yes, we ended up less than 50% for both 6mp/mtx the majority of maintenance. I was very worried about this too, did all the tests, ruled out all meds that could be dropping counts (which I would recommend doing). Dr. Pui reassured me that these patients usually have favorable outcomes, so that made me feel much better. We went OT 5-26-12.

Re: OT Today!!!! Happy to share good news...

communityreply@lls.org — Mon, 13 Aug 2012 06:25:36 GMT

Congrats!

Re: Strength OT

communityreply@lls.org — Mon, 13 Aug 2012 06:22:08 GMT

Hey Jon,

If it were me, I'd have him evaluated by PT if you're concerned. It can only help. You can disguise it if by telling him it will help him to play a sport that he loves even better, or something like that. I wish Justin's PT didn't move away or we'd still be going. Stamina was a huge problem for him that they worked on every visit, and he really enjoyed it. They make it fun for the kids.

Re: Good News!

communityreply@lls.org — Fri, 27 Apr 2012 16:10:29 GMT

He looks so great Connie! I totally get your excitement, so celebrate to the fullest!

Re: End of Chemo Party

communityreply@lls.org — Wed, 11 Apr 2012 22:12:46 GMT

Congrats! We are right behind you. Last LP May 1st, last 6mp May 26th. We are having the party on the 27th. I rented a park shade structure, and Justin (13) wants an End of Chemo Dodgeball Bash. I know another friend who is having a "Kick-It" kickball party to raise money for childhood cancer http://www.kick-it.org/, which I think is awesome, but Justin didn't want to do that. :/ I'm sure whatever you do will be great, as long as it's what he wants.