The Leukemia & Lymphoma Society Community: Message List - 0232 protocol???

Re: 0232 protocol???

communityreply@lls.org — Mon, 27 Feb 2012 19:02:11 GMT

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!

Re: 0232 protocol???

communityreply@lls.org — Mon, 27 Feb 2012 16:57:25 GMT

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:

Induction

Consolidation Block One

Consolidation Block Two

Reinduction Block One

Intensification Block One

Reinduction Block Two

Intensification Block Two

Maintainence One

Maintenance 2

Maintenance 3

She will get two weeks of Cranial Radiation in Maintenance 2.

Re: 0232 protocol???

communityreply@lls.org — Mon, 27 Feb 2012 12:22:16 GMT

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.

Steve

Re: 0232 protocol???

communityreply@lls.org — Mon, 27 Feb 2012 03:53:45 GMT

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?

Thanks,

Dawn

Re: 0232 protocol???

communityreply@lls.org — Mon, 27 Feb 2012 02:51:35 GMT

Dawn,

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?

Steve

Re: 0232 protocol???

communityreply@lls.org — Mon, 27 Feb 2012 01:59:29 GMT

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.

Dawn

Re: 0232 protocol???

communityreply@lls.org — Mon, 27 Feb 2012 00:20:01 GMT

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.

Re: 0232 protocol???

communityreply@lls.org — Sat, 25 Feb 2012 13:59:04 GMT

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!

Re: 0232 protocol???

communityreply@lls.org — Sat, 25 Feb 2012 03:59:04 GMT

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.

AALL1131 Link

http://www.cancer.gov/clinicaltrials/search/view?cdrid=706370&version=HealthProfessional

Re: 0232 protocol???

communityreply@lls.org — Sat, 25 Feb 2012 01:45:45 GMT

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.

Steve