The Leukemia & Lymphoma Society Community: Message List

Bone Marrow abnormalities and relapse?

communityreply@lls.org — Wed, 04 Apr 2012 21:02:14 GMT

Thanks for your response. I think it must be something other than relapse cause the onc hasn't called me yet today. I'm sure he would have if he thought she was relapsing.

Bone Marrow abnormalities and relapse?

communityreply@lls.org — Wed, 04 Apr 2012 00:24:52 GMT

Hi,

Elizabeth has been off treatment for 18 months. She'd been complaining of pain in her legs and forearms. Had some wacky blood work but now they say it's fine with 5 reactive lymphs. The orthopedist called a few minutes ago with the results of the MRI done today. Bone marrow abnormalities seen. Disease recurrence is not excluded. Do any of you know how long it takes the bone marrow to recover? Thoughts?

Re: Left shift and metamyelocytes

communityreply@lls.org — Mon, 02 Apr 2012 20:06:06 GMT

Hi,

Does this apply to a child who has been off treatment 18 months?

Thanks,

Nicki (Elizabeth'smom)

Re: OT counts

communityreply@lls.org — Thu, 02 Jun 2011 02:01:11 GMT

Wow, Georgina, those counts are good for 2 weeks off tx!

Best,

Nicki

Re: My daughter can't get up on her own??

communityreply@lls.org — Sat, 01 Jan 2011 17:29:30 GMT

Hi, sorry your baby is having this experience. Based on what I've experienced and what I've read on the acor ALL list I don't think your child's experience is uncommon. The leukemia itself can cause bone pain and Vincristine is a nasty drug that can cause your child's symptoms.

Best,

Nicki

Tegaderm tip

communityreply@lls.org — Sat, 01 Jan 2011 17:24:47 GMT

Hi,

Tegaderm ripped my daughters skin so we started using Primapore early on in her treatment (OT 9/4/10). And to remove it we saturate it with Purell...the antibacterial stuff hanging on the walls all over the hospital and clinic... and it falls right off. No pain. A nurse on the inpatient unit told us about the Purell. It works way better than the little adhesive remover tubes they usually use. Hope this tip helps some of your kids.

Best,

Nicki Mom to Elizabeth dx 5/12/08 OT 9/4/10 HR-preb ALL

http://caringbridge.org/visit/queenofhearts

Re: Who we all are

communityreply@lls.org — Wed, 03 Jun 2009 02:41:32 GMT

Noel, your son painted the picture of the bird??? Oh my goodness, he is so talented! I'm glad he's doing so well.

Nicki & Elizabeth (HR-ALL, 14 yo)

http://www.nickisnook.com/Elizabeth

Re: Anybody's child in a wheelchair?

communityreply@lls.org — Wed, 03 Jun 2009 01:34:23 GMT

Thanks All for your responses. Ann, Elizabeth takes the prednisone 5 days each month as part of the LTM of her protocol - ALL232. Stephanie...I know what you mean about the drugs... I dread when we have to start wearning Elizabeth off her painkillers. She takes oxycodone at least twice a day. As well as neurontin and all the other stuff. We had her right arm xrayed several months ago and the ortho did notice loss of bone density but couldn't quantify it from an xray. She's been complaining a lot recently of her ankle so I think I'm going to insist they go ahead and check her for AVN. Well, it's good to hear from parents whose kids have managed to shed the wheelchair. I'm still hopeful.

Thanks,

Nicki

Anybody's child in a wheelchair?

communityreply@lls.org — Mon, 01 Jun 2009 07:41:53 GMT

Hi,

I'm Elizabeth's mom. She is 14. We are in LTM. We just passed the 1 year mark of her diagnosis on May 12, 2008. She has high-risk ALL and has not tolerated the chemos well. She's on 25% of MTX and VCR and 35% of 6MP. 100% of prednisone. She's been in a wheelchair since the beginning of June 2008. She has severe dropfoot with no reflexes and muscle weakness. She wears AFOs and can walk about 20 feet with my husband and I on either side, supporting her. And under protest. Have any of your kids been in a wheelchair? If so, for how long? Thanks and God bless your children.

Nicki

http://www.nickisnook.com/Elizabeth

Re: bryce is gone :(

communityreply@lls.org — Mon, 01 Jun 2009 07:13:54 GMT

I'm so very sorry. My heart aches for you. I will keep you in my prayers.

Nicki Harris