The Leukemia & Lymphoma Society Community : All Content - My Child Has Cancer

H1N1 Vaccine

communityreply@lls.org — Sat, 21 Nov 2009 02:35:51 GMT

Thank you, Fontenrose, for posting that article and for accurately summarizing what I try to tell people about vaccination. The article is excellent - I read it a couple of weeks ago. I believe that so many people confuse correlation with causation - someone gets a vaccine and then some period of time later something happens to them, so it must be the vaccine - and that confusion has caused some parents to opt out of the vaccine, thinking it's the "safer" alternative. What many people forget about are the possible risks of NOT vaccinating, which are clear and proven. That said, Dana is getting her H1N1 in two weeks, when she's off her steroid pulse. It wasn't available to us any sooner, or she would have gotten it already.

Protocol Errors

communityreply@lls.org — Fri, 20 Nov 2009 20:37:23 GMT

Thanks guys.

I found the section in our protocol (0232). It states exactly what you have said, Ann. This is different than what the doc told me yesterday. It doesn't say that you start again at 25% with ANC at 500, but rather 100% for the first dip after ANC reaches 750. I will bring this page with me next week at our count check.

Tonya

H1N1 and platelet counts

communityreply@lls.org — Fri, 20 Nov 2009 14:44:35 GMT

How was the appointment/bloodwork yesterday? Thinking about you!

RSV - Respiratory Syncytial Virus

communityreply@lls.org — Fri, 20 Nov 2009 05:35:28 GMT

Sorry to hear about Peter's RSV. We experienced it this past March and Caitlin was hospitalized for it mainly for adequate hydration. Caitlin's ANC was in the normal range when she got it because we had temporarily stopped treatments due to a surgery she was having. So I can imagine that Peter's ANC has suffered while contracting RSV while on treatment. RSV is one of those viruses that wreak havoc on the WBCs (in a downward direction). I remember Caitlin having a runny nose, bad cough, high fevers and throwing up. Hope it is better for Peter. Unfortunately, all you can do is wait it out. Best of luck!

Suggestions to teach a 2.5 year old to swallow pills?

communityreply@lls.org — Fri, 20 Nov 2009 05:17:21 GMT

We never have been able to get our daughter to swallow pills - diagnosed at 3, now she's 5 and still not taking the pills. We buy pure apple juice (no added Vit C) and put into a syringe, we then put the tablets in the syringe and let them dissolve. This is how we've been giving the weekly methotrexate all along. We were able to get liquid 6MP and a local pharmacy adds a bubble gum flavor. By the way, I hope that you are wearing a mask and taking precautions if you are crushing chemo pills in the home. It is dangerous, esp if you are/were to get pregnant (I am now and the docs keep harping on that). Good luck!

maintenance and thinning hair...

communityreply@lls.org — Thu, 19 Nov 2009 23:21:09 GMT

Michelle, we are doing fine. Things are somewhat back to normal with the exception of weekend CBC's and daily afterschool nap (he has to have one due to late night HW). You would never know what happened to him unless somebody says he is on active treatment for leukemia. The only visible sign is his stunt growth - his younger brother of 4 yrs is much taller. That is okay - he is alive and well! He does not want to talk about his medical misfortune. He is enjoying his senior year (now that he has the energy to attend weekend parties - minus staying overnight), ever busy with co-curricular activities, fund raising and crew. My heart aches as he decided not to register for the NCAA clearinghouse for an opportunity to get recruited in college for crew. He says after all that he has been thru, he deserves to enjoy life and not worry about the rigors of early morning practice for the next 4 years. He "might" just walk on for the tryouts - at least he does not have to commit. We worry about the build up of meds in his system. It is a long road but we are very thankful that he took the treatments well. Prayers and medicine at its best. We will forever keep our fingers crossed.

E-mail me when you can..... n8_et@comcast.net I am still waiting for your caring bridge site as promised.

Take care,

Noel

Swallowing problems and abdominal pain

communityreply@lls.org — Wed, 18 Nov 2009 15:44:35 GMT

I agree with Sarah's mom that, even if this is "just" a side effect of the chemo, that doesn't mean the drs shouldn't be treating it and trying to make your daughter more comfortable. Several people have brought up a good point -- is your daughter on anything that would control acid reflux and/or gastritis? We started out on pepcid, twice a day, and when that didn't do the trick, progressed to prescription strength prilosec. My daughter is on this every single day, and had been since treatment began. I cannot even imagine the stomach and other discomfort she would be in without it. I sincerely hope your daughter is at least on pepcid. If not, I would immediately insist that the drs prescribe it for you (can't remember -- do you need a script for the strength our children take?), and see if that helps. It could certainly be severe acid reflux (which can be quite painful). Or else, if could also be from the vincristine. Either way, the drs should be helping you to treat it.

Ann

Nerve wracking and so frustrated!

communityreply@lls.org — Wed, 18 Nov 2009 00:17:12 GMT

Hey everyone thanks so much. I seriously considered that however, the cultures they drew on Sunday were negative and his symptoms all pointed to a viral infection. Typically they cause the low grade fevers which is why I think our magic number is different than some (though I know this isn't always the case). At our old hospital (he was dx in NY) the magic number was 100.4. Either way I watched him like a hawk all night and we made it through. His body fought it off b/c he was fine all night and has been great today, more active and playing w/ not even a low grade temp. Also I wasn't overly worried before b/c he was still eating and drinking more than ever. I was just irritated b/c we are strict followers of the rules and fever = at least an ER visit if not more. But our rule here is that if the ANC is ok and cultures have been done (which his were) than we can stay home unless they pop positive. So I basically just wanted someone to reassure me that if got a temp we didn't have to A) drive the 2 hours back to the clinic after we had just left or B) uproot everyone in the middle of the night for an unnecessary trip to the local ER. His doc is typically awesome. We butt heads at different times and have since day 1 b/c we both feel that we know what is best. He had learned his lesson for awhile after quiet a few times when he blew me off and it turned out I was right. After that he did as I asked for awhile, but it's been awhile and I think he has forgotten lol. Either way he won this battle. But if he had stopped eating, drinking etc I would have had him back to the ER w/ or w/o a fever. Because no matter what he thinks, I DO know what's best for my kid! Either way thanks for the support. I think I just needed to blow off some steam. It is rare I have problems there but when they happen they really get under my skin. I'm freaking out now b/c his nurse practitioner since we've dealt w/ since we got here is switching to being a floor chemo nurse so we are getting a new NP. If Nancy wasn't so great I wouldn't be sweating it but she knows my psychosis lol, knows how to calm me down, gets back to me asap, takes the time to talk to me and explain things I don't understand, and even gave me her home number for emergencies (which I've only used once, but knowing she trusted me w/ it and cared that much meant a lot) I'm glad she'll be staying in the hospital but sad that we are getting someone else.

Our Experience with H1N1

communityreply@lls.org — Tue, 17 Nov 2009 16:50:47 GMT

My daughter had H1N1 too. She didn't even have a fever. She just had a mild ear infection, little cough and a little achy, but nothing of note. The only reason we knew she had it was because she had a swab done and it confirmed it. The swab was done not because it was suspected, it was done just to rule out the small possibility. It was very shocking to learn she was positive as you would have never guessed. It lasted maybe 10 days.

Epratuzumab for CD22+ Bcell ALL

communityreply@lls.org — Tue, 17 Nov 2009 03:16:30 GMT

I don't know anything about this drug. I stopped by the CB site, and I am so sorry about you very hard road. I truly wish I had anything else to offer besides sympathy.