Anyone have young children on this protocol? The other kids at our clinic on this protocol seem to all be older. Elle is 26 months old and will most likely be on this protocol due to her WBC at dx (98,900). She is four days away from finishing Induction therapy. Any tips on what to expect? How is the next phase (Consolidation) on this protocol? Is ARA-C a tough drug? Is Consolidation easier than Induction?
Hi - we're on 232 - my daughter is 13 - she's on HR due to her age. My guess, you're on HR due to WB count being hight at dx. We're in the middle of DI - so ahead of you. My daughter hated Ara-C during consolidation - we had to ice her leg for a long time before I gave her the shots - she said that it didn't hurt when the needle went in - but that the medicine itself burned, like a worm going into her leg, but we got through it. She's 13 so money talks, and she got $5 a shot - hahah. Now in the second part of DI, we're faced with Ara-C again - and she has refused the shots. She's convinced the Docs to let her stay accessed, and we'll give the Ara-C at home while she's accessed. Let me know what questions you have - I'd be happy to help since I'm down the road some from you ... Becky
My daughter was almost 12 at diagnosis and is on 232 protocol arm for kids with Down syndrome. Not really sure what the difference between the "regular" one is. She has been in LTM since April, 2011! Not that we're glad to be through frontline treatment or anything...
We found induction to be the absolute worst stage of treatment. I think because she felt so sick at time of diagnosis, and then body gets bombarded with all these new chemicals. As I recall about 2 weeks into consolidation she started to feel better and we saw some of the old "sparkle" come back. During induction I wondered if my happy little girl with the bubbly personality had been "lost."
She got her ARAC as shots rather than IV. I gave them to her at home and I don't think they hurt nearly as much as PEG shots. There would be some tears, but very briefly. I think it was harder on me to give her the shot than it was on her. My stomach would knot up an hour before when I took the shot out of the fridge, gave her zofran and put on the Emla cream. Then I really couldn't do anything because I was so stressed out by the fact I had to give her a shot in an hour. If you are giving the shots at home I would highly recommend using the Injectease device rather than doing them freehand. My husband had to give her one freehand one night because the Injectease broke and new one had to be ordered at Walgreens. He told me it would be no big deal because he had given so many shots to cows growing up on a farm. Ha. It wasn't so easy to give it to his stepdaughter...Big difference.
When she needed ARAC in DI we had to go to the clinic for shots because of the drug shortage. The ARAC didn't have any weird side effects that we could identify. And (I hate to admit this) one time I forgot to give her zofran before one of the clinic shots and didn't realize it until about 4 hours after the shot and she was fine. So, obviously did not cause nausea for her.
Quite honestly by the time we were halfway through consolidation the drugs didn't seem to have such a big impact on her. Don't get me wrong, she still had some fevers along the way and some constipation/diarrhea issues but not like during induction. That stage is ROUGH, rough, rough! She had mouth sores once during consolidation and she did have some trouble with sores on her rear end. And we had ANC of about 10 several times throughout treatment. But luckily nothing too dramatic and hoping it stays that way.
Good luck on your journey!
Robbie and Lauren
Thanks to both! Elle finished Induction officially today, with her LP and Day 29 BMA. Preliminary results of the BMA are all clear- 0% blasts, and her CNS remains leukemia free. We are now waiting on the cytogenic results and the MRD results, but barring any surprises she will definitely be on the 0232 protocol with Consolidation starting pretty soon.
Our son is 10 and on 0232 due to his age (missed 0331 by 5 days). Ended up having odd cytogenetics (he is the only confirmed case of the translocation they found) so would have been on 0232 anyway. He didn't go into remission with the chemo alone, so had extended induction. Put on Gleevec and in remission within a week.
He is halfway through consolidation (finished first round of Ara-C). We did the push at home through his port and he's had no problem so far from the drug. He did have clotting issues from the PEG and had a stroke two weeks after starting induction, but that's the only reaction so far. We start second round of Ara-C a week from Tuesday.
I don't know the "other end" but one end was 5q. At first they thought it was just a 5q deletion, which is usually associated with myloid leukemia, but he clearly had lymphoblasts. A diligent pathologist and determined oncologist refused to give up and eventually found the translocation. The key is that it was a suspected tyrosine kinase. That is the key phrase to ask about. St. Jude has retrospectively found some examples of this translocation (again, I will ask about the other "end"), but no one has ever been treated for it. It would simply have been treated as refractory ALL. Sadly, those kids would have been subjected to treatments that we now know they would not have needed, at least early in their treatment. Two weeks ago our doctor said, "If Harrison would have been diagnosed 6 months ago we would not have done this." We are so fortunate to have a team that was on the cutting edge of research so we could be on the cutting edge of treatment. Again, I will ask what the translocation is at our clinic visit Tuesday and post it here.
Best wishes to you.
Hmm..sounds similar -- among other things, our daughters says "deletion of a portion of the long arm of chromosone 5. Del (5) (ql 5q34). They never pointed this out as anything specific. The only thing that they drew attention to was an amplified RUNX1, which for some reason is seen in older kids -- she was 12 at Dx. Her other thing was transolcations between the long arms of chromosones 1 and 9, isochrome involving long arm of chromosone 9, additional material attached to the short arm of 19; and additional material attached to the long arm of 21, and gain of one to two marker chromosones. Apparently none of this is specific to anything accoring to my docs. I always wondered if I should hire a geneticist to interpret them ...but I guess it really wouldn't make a difference one way or another at this point right!
For us, the belief that the chromosome translocation was a tyrosine kinase has meant ALL THE WORLD. Harrison has little response to the chemo and pred, but with the gleevec he was in remission in a matter of days. Meant going from very high risk, to high risk, and now to standard risk.
Stevemckinion, I'm curious as to where your son is being treated? St. Jude? I feel often that our hospital while known world wide seems to be so behind in their treatment approach. This is something that has always bothered me. That and the fact that our daughter had some not so hot cytogenetics, so I've become obsessed with cytogenetic specific treatments other than the favorable ones. The "good" ones, have been in my opinion studied so much, almost to the point of exhaustion and makes me wonder when the focus will shift to the more tricky ones. Don't get me wrong though, I'd much rather Marin have the "good" kind.
Best of luck to your son.
Harrison is being treated at University of North Carolina-Chapel Hill. His primary onc is Dr. Brent Weston. I cannot tell you how pleased we are with him. There is a research team at St. Jude that is consulting with him, but he and his team here are superb. Harrison is the only person being treated for this translocation, even though retrospective studies the last few weeks have found other kids that have had this same chromosome problem. Dr. Weston has been so willing to do what is best treatment-wise from the outset. His exact words when we agreed to his consultation with outside researchers was, "At some point in the future they will use the results of Harrison's treatment to help other kids. But I am only concerned with treating Harrison. They can worry about the research." That really gave me comfort that he would have Harrison's needs in mind.
Are you guys at St. Jude?
We're at the Cleveland Clinic, known to be the best in a lot of specialities, but not in pediatric cancer I guess. They consulted St. Jude and a few others about our daughter specifically I just am not convinced they're on the cutting edge of what's happening regarding up and coming treatments. I just want to be sure she is getting the best individualized care possible. Just like everyone else! I think I just obsesses about it more than the average person, and want to be sure I've left no stone unturned. You know?
I know exactly what you mean. One very interesting comment our onc made a couple of weeks ago is that had Harrison been diagnosed 6 months ago they would not have treated him in this way. We would have been on a VHR protocol and headed for BMT. Instead, at least for now, he's been moved to standard risk. Amazing how quickly treatment can progress.
All the best to your daughter. I pray for her and for your family.
My son is now 6, and he is on the 232 protocol. He was diagnosed a few months after his 5th birthday on in Oct 2010. He is high risk because of high WBC counts at diagnosis (74,000). He's in Maintenance IV right now.
We are at a large children's hospital in Toronto. They have a few kids diagnosed each week. After a few weeks, we met another friendly family with a boy in the same protocol and similar diagnosis. He was 3 months ahead of us. So that boy was like a pioneer for us. We saw him at the outpatient clinic often and sometimes when were in patients. He paved the way for us and helped us understand visually and verbally what was coming next. We befriended another boy who was 1 month behind us and we did the same for him!
I document our journey in a CaringBridge account. http://www.caringbridge.org/visit/jparoyan You're welcome to check it out and I strongly encourage you set up a site. It is awesome writing therapy for me. It minimized the emails I have to send and I can update hundreds of people instantly.
My son didn't have a lot of delays between phases. There is good and bad to that. Good because you want to get through it asap. Bad because I think a Chemo break might be good for their little bodies. I think all that Vincristine during some of the phases was tough on my son. My son's hair thinned, but didn't fall out until DI. It came back in the summer...just in time for school...whew!
My son has been hospitalized for fever 5 times so far.
3. Interim Maintenance I
4 & 5. DI
I think that is a lot compared to some other kids. We probably went to emerg at least 10 times though and were sent home 1/2 the time because his counts were ok. He has only had 1 fever since he started Maintenance and his counts were good. In almost every case, my son followed the old saying "when the sun goes down, the fever comes up". That meant a trip to emergency. I could be there and back in about 5 hours, but it was still tough...especially when you arrive there at midnight. Why can't they get a fever during the day when the outpatient clinic is open???
My son is 6. We are in DI right now, and they are talking about moving him from 232 to a new protocol 1131 which hasn't even officially opened yet. He was listed as high risk due to being a slow early responder, but was right on target at Day 29. So the doctors have explained that because he doesn't truly meet the high risk criteria, they are reluctant to keep him on the 0232 protocol and want to switch him. While we are happy to not have cranial radiation in his future, we are worried that getting less MTX might not be the right path for him.
Anyone have any suggestions or comments?
Hi Aaronsmom - I'm confused, but interested in your post. I don't know what 1131 is all about, but if you're in DI - you should be done with all the HD Methotrexate. Does 1131 stop giving it in Maintenance? We're on 232, but do not have any cranial radiation coming since my daughter was also MRD -, and was classified as a Rapid Early Responder. But they still have my daughter on HR due to her age of 13. It seems odd that if he was once classified HR, that they would move him based on Day 29 -- maybe because he's yonger which is good....but since I'm feeling skeptical today - make sure the change isn't due to possible Methotrexate shortages. You should be through the bulk of them by now anyway, right? Sorry just babbling at this point ... b
It seems like one of they objective is to determine triple IT versus MTX IT within the context of HD MTX, so it is not about getting less MTX.
you're too smart for me...hahaha I followed the link and was like "what?" ...hahaha ....I'm going to ask our docs about it though to see what they say -- we're about to start the second part of DI -- and getting close to maintenance, so I'm sure they won't change us at this point!
All of this discussion comparing protocols sure is interesting. Elle started out being told she would be low risk (due to age- only 26 months at diagnosis), then that changed quickly to high risk when her WBC was found to be 98,900, with 92% blasts in the PB and 97% blasts in the marrow. Then came the Day 29 shocker of MLL+ and SER/High MRD, bumping her all the way up to very high risk (0031). Her protocol is full of tough, tough chemos...
For us it looks like:
Consolidation Block One
Consolidation Block Two
Reinduction Block One
Intensification Block One
Reinduction Block Two
Intensification Block Two
She will get two weeks of Cranial Radiation in Maintenance 2.