The Leukemia & Lymphoma Society Community : Thread List - My Child Has Cancer

H1N1 Vaccine

communityreply@lls.org — Thu, 19 Nov 2009 23:50:00 GMT

http://www.youtube.com/watch?v=Tb6j7qMFy2c&feature=related

I was going to have Chz get vaccinated this week. He told me about this girl who got dystonia 10 days after receiving the vaccine. He says he would rather wash his hands frequently and stay away from sick people. "It happens to 1 in a million and so does my leukemia after getting my MMR vaccine!". Aaahhhhgh! Our GP is against it. But our onc highly recommends it. The things we have to deal with.

What would you do?

Protocol Errors

communityreply@lls.org — Fri, 13 Nov 2009 00:36:03 GMT

I just wanted to let you guys know, that even some of our road maps may have errors on them. We are on AALL0232, and today we were at clinic for an LP on day 29 of maintenance. I questioned our np as to why he was supposed to also receive his PO MTX on the same day that he receives IT MTX (as it says on our road map--but seemed a little much to me). Sure enough, she called and verified that that is in fact an error for RER kids, and that they should not receive PO MTX on the same day as an LP.

So frustrating and makes me feel insecure when these things pop up, like I constantly have to be on top of every little thing...

H1N1 and platelet counts

communityreply@lls.org — Fri, 13 Nov 2009 13:03:39 GMT

Hello all, its been a while since I posted on here. I am hoping someone can help me out. Brandon was DX 9-11-06 PreB ALL HR. We are so close to the end of treatment so of course everything and anything that can go wrong is. Brandon was DX with H1N1 on October 29. We did the Tamiflu and to be honest it worked great! He never got really sick and seemed to breeze through. The day he was DX his counts were low. I figured well, he has the flu, so of course they are going to be low.( WBC 1.2 HGB 13.0 and PLT 96 ANC of 600 ). His Dr told me that his counts should start to come up within a week. Ok, so fastforward to yesterday. Counts are still down WBC 1.4 HGB 10.8 PLT 34 ANC 600. I may be overreacting,as i tend to do with this BUT his PLTS are really low! I was always told that the number they look at when dealing with a relapse is the PLT count. So obviously I am really getting scared. His oncologist have stopped all chemo and we are going back in a week to recheck counts. If there is no improvement we are going to do a BMA to chec for relapse. My question is..have any of your children either had H1N1 or a virus that has caused counts, esp PLTS, to drop like this? I am so scared and just looking for a little bit of help,whether it is negative info or positive. You are all the experts in my opinion!!

Thank you Christine

RSV - Respiratory Syncytial Virus

communityreply@lls.org — Mon, 16 Nov 2009 05:53:49 GMT

Peter has been in hospital for 4 days with febrile neutropaenia. Zero neuts or white cells and other counts dropping daily, and constant high temps. He has a terrible cough which makes him throw up and keeps him from sleeping.

We just found out this evening that he has RSV. I have never even heard of it.

Has anyone experienced this in their kids with cancer? Any info much appreciated as I have no idea.

Bridget

http://www.caringbridge.org/visit/peterpirie

p.s. he in in LTM for ALL

Suggestions to teach a 2.5 year old to swallow pills?

communityreply@lls.org — Tue, 17 Nov 2009 06:06:58 GMT

Hello All. My 2.5 year old son was DX in April with ALL pre-B. Today we just started LTM, so we need to give him a pill or two every night. Right now we are mashing up the tablets and putting them in sorbet (non citrus and non dairy) or ice cream, but life would be much easier if he could just swallow the tablet with water. Does anyone have any recommendations for how to teach my son to swallow a nasty tasting pill whole? Thanks!

maintenance and thinning hair...

communityreply@lls.org — Tue, 17 Nov 2009 13:14:28 GMT

my son seems to be losing his hair and we are 5 months into maintenance. It was growing back so thick and even had natural highlights in it. He wanted to get a trim and ever since then his hair seems to be thinning. Anyone else experience this? My son is in high school and is not happy about this. Our doctor never told us this could happen so we were caught off guard about this.

My son wants to know if he loses it again will it come back right away? Would love to hear your experiences about this. How long did hair loss last, if it thinned did it get thick again? Thanks for your input.

Michelle

Swallowing problems and abdominal pain

communityreply@lls.org — Tue, 17 Nov 2009 18:13:45 GMT

Have your kids had swallowing problems and abdominal pain? My daughter is having abdominal pain every day. She has delt with this pain over three months now. The level of the pain is varying from light to severe pain. She also vomits approximately every third day. Besides she has problems to swallow food and everything must be smooth, however that does not prevent her for vomiting. She has not had any constipation. I have discussed this issue several times with our Onc but he thinks that this is just a side effect of chemos and there is no reason to worry. I am just starting to get really worried as this problems is getting worse day by day.

Nerve wracking and so frustrated!

communityreply@lls.org — Mon, 16 Nov 2009 22:55:51 GMT

Donavynn had a fever yesterday so we went to the local ER they drew cultures and labs, gave him a dose of antibiotics and we were sent home b/c his ANC was 1200. Today he had clinic for Erwinia. His temp has been fluctuating between normal and like 100.5, so I asked if they would draw labs again to see if he does spike what they want us to do. The doc said no, that we would have to go to the ER if he spikes and go from there which basically pissed me off b/c we live 2 hrs from the hospital and we were there this morning, they could have at least done that to help me relax. Consequently my stomach has been in knots all day as his temp continues to fluctuate but not reach high enough for them to take notice. I'm still concerned however b/c his temp is still rising it may not reach that 101.5 marker but it keeps going above normal. So I'm irritated and frustrated and want some answers. We just got home Friday from his radiation (he had 8 days of cranial radiation) prior to that stay he was in for a fever so he went directly from the hospital to the Ronald McDonald house and now we may be heading back up tonight. I just wish he could catch a break. He has had a cough for 2 months that just won't let up, which is pretty typical for him during the winter months. I'm just so irritated at this point I want to scream

Our Experience with H1N1

communityreply@lls.org — Tue, 17 Nov 2009 00:11:39 GMT

I know all of us are terrified of the swine flu (I now refer to it as pork chop fever for a little humor relief) and my nightmare came true this weeked. Alexis was admitted on Friday with a fever of 103. I already knew what she had since I was sick myself. I wasn't allowed in the hospital until they knew for sure she had the same thing and that was the longest night of my life. She had a terrible time with fever. It didn't break until last night. Her oxygen levels were of concern so she had to have oxygen until last night also. She was able to come today since her fever and oxygen levels were finally under control. We do have to have her counts checked again in two days because they have steadily declined and her hemoglobin and WBC are of concern right now.

I think it is hitting every child so differently. Our hospital has actually seen more more kids without cancer that are being hospitalized than the cancer kids. Of course, that is probably because we spend a lot of our time chasing our children with thermometers and tend to catch things faster

Epratuzumab for CD22+ Bcell ALL

communityreply@lls.org — Sat, 14 Nov 2009 18:23:29 GMT

Any parents out there that have experience with using this drug as part of their childs treatment protocol? Or are there any specific side effects or symptoms that you attribute to using this drug. Epratuzumab has been in testing with several different clinical trials over the past year, and we are considering it as part of a trial at M.D. Anderson to bring our son into his 4th remission.

Thanks for any info.

Mel

rash mystery solved- maybe it will solve your rash too

communityreply@lls.org — Fri, 13 Nov 2009 00:09:35 GMT

FYI- For 2 years now we were told that the rash around Eli's mouth and nose was a methotrexate rash and there wasn't a whole lot we could do about it. "A little hydrocortizone wont hurt" we were told by the onoclogists. We went to a dermotologist today who told us it was due to steroid withdrawls every month! He prescribed a non-steroidal ointment. We are hoping this will help. I know Eli can't be the only one who has been tolerating this rash, so if your kiddo is too, there may be an answer.