That's what Eric and I keep saying. We're kind of reeling right now.
We just got a phone call from Elena's oncologist telling us a new study (not the one Elena is on) had just finished up showing very favorable outcomes for kids with High Risk ALL (what Elena has) by adding in a new course. We're still a little sketchy on all the details, but it's kind of like a ramped up, tweaked Interim Maintenance repeat. It's two months long and they give the kids super, super high doses of Methotrexate (a chemo she's had consistently throughout her treatment - sometimes injected in her spine and sometimes orally) and keep them inpatient during that treatment, along with a few other medications and two lumbar punctures.
They want to give Elena this treatment. So, we are to stop Maintenance effective immediately - stop all chemo and let her counts rise high enough to start this new course. In one week, if her counts are high enough, she'll check into Primary's and start this new course. When she's finished, she'll go back to Maintenance. From what we've been told, the timing of Maintenance will be the same.
Wow.
It's just kind of crazy. We're happy about the favorable findings of this study and hope that it will help Elena, but it's a little unnerving at the same time. What we're doing is fairly experimental. They just studied this. And she's being pulled off of Maintenance randomly to start it - not at the normal time that they tried this course at in the study. I guess that must mean they think it's
that important and beneficial to leave the standard protocol. Plunging out into the dark and trying something pretty new. And we were just settling into the "only-go-to-the-hospital-once-a-month-instead-of-once-or-twice-a-week" routine and higher counts. (Wait, what am I saying, we were in the hospital three times last week, not even counting regular doctor's visits... haha.) Now, life is getting turned upside down again for a bit and we've got to adjust our schedules, habits (no more outings for Elena for a while), Eric's schoolwork, etc. A small price to pay, I know, for a better outcome. We'd pay any price for that. Like I said, we're just reeling a bit at the moment trying to figure everything out.
Ah! This cancer ride! Here's hoping!
19 comments:
Good luck, guys. Keep us updated. I'm sorry this is totally pulling the rug out from under you. Let us know how we can help. I hope things go smoothly and you are back in maintenance with a lower relapse rate!
What a tough thing. But great that the results of the study are promising. Good luck!
good luck! i cant imagine seeing your baby sick - you are so strong! i also want to thank you for keeping such detailed records of everything... my dad was just diagnosed with cancer in december and its been really helpful to have read your story so far and know more about ports and chemo and kind of what to expect! thinking about you all! and how is miss lily?
I'm kind of reeling too, to be honest, although I'm sure nothing like what you're experiencing. When you figure things out, please let me know what I can do to help. Do you know why they do this all inpatient?
And in light of this, can I call what happened this last weekend an incredible tender mercy? Having everyone together again . . . and now it looks like that may not happen again for a bit. We love you and are praying for you, and hoping that in the long run, this will prove to be really GOOD news!
Wow. I am so happy that this could potentially help Elena, and that her doctor thought it important enough to have it happen right now. I hope things go smoothly, and that it has the best effect on treating her cancer. It sounds like it will help a lot. Your family is so strong! I'll be looking for updates to hear how things are going. And as always, your family is in our prayers. :)
Keep me updated... if possible let me know before we leave on thursday if you need me I'll be there if you do...
Just a clarification, Elena wouldn't be inpatient the entire two months, but only after the high dose methotrexate administrations. I only had a short phone call with the doc, but I think that the high doses are given in the back pokes, and she will have that done twice. So, she would be admitted for a few days when she gets the high dose, until the levels in her body come down. I do know she will only get two high, hospitalized doses during the course. The doc, with some napkin calcs on the phone estimated about 3 days inpatient each time. We will be going back to weekly chemo administrations. Another bummer is that normally it takes a couple months of maintenance to kind of normalize and be able to be more normal. We will have to start that process over when she finishes IM Extreme (new course name??? what do you think?)
glad your keeping your sense of humor...
wow is right. geez. this is so crazy. just when you thought you were in maintenance. i am really sorry. even though you know it's best for elena, it's got to be really hard to all of the sudden feel like you're going backwards. please let us know how we can help-- you know you're always welcome to stay with us. we'd love to babysit lily if you need or make you meals. or whatever else!
reading this made me realize how REAL and dynamic cancer research is. when you guys were raising money for the light the night-- it wasn't for hypothetical cancer patients-- it was for people who have cancer right now-- and it looks like it was for elena, too.
keep us updated...
I imagine it is so difficult and frustrating to have your course changed unexpectedly! We will continue to pray for you guys!!!
Wow! I'm sure that's so hard, but so exciting at the same time. Good luck!
I am so glad we were able to see you all. Your family is so cute. I really wish the best for you guys through all of this. It is hard to just "trust" what the doctors say, and believe in "new" research. Elena is such a cute, energetic girl. She will beat this. I love you guys and look up to your courage in getting through all of this. If there is anything I can do.....please let me know.
Hi! Liz just emailed about this new protocol you'll be starting. High dose methotrexate is used for many diagnoses and is a very effective drug. It is given IV, though she may get intrathecal as well. She needs to be hospitalized because hydration and a rescue drug (leucovorin) are needed following the methotrexate to flush it out of the body (excreted through the kidneys) and protect the organs from it. It is toxic to organs if the patient is not adequately hydrated and the drug cleared quickly. She'll have labs drawn every 6, 8, or 12 hours to check methotrexate levels and once they are low enough, she'll be discharged (usually around 3 days). It's a very nauseating drug, so she may have that to deal with. Most patients sleep through it- seems to really wipe them out physically. The drug is usually given as a 12 or so hour infusion (sometimes shorter), followed by all the hydration. She'll be using the bathroom a lot! I'm not sure why they're moving her to this, but I'll ask our providers when I get a chance. This will wipe out her counts, but hopefully won't be like induction or DI (at least no steroids). She'll make it through! It sounds like they want to just hit hard one more time with a different drug just to be sure (in my mind- a good thing) though hard for you. One side note- anyone who's pregnant or trying to get pregnant should not handle her urine for 3 or so days. Hope this helps!
Alyssa! I'm so sorry to hear about your dad. I still tell Eric about the fun projects we did in his science class. It was one of the few times I actually enjoyed and (mostly) understood science. :)
What kind of cancer was he diagnosed with? I'd love to hear more details, if you're up to it. What a heavy burden for your family - we'll be thinking of you all and praying for your dad.
Danielle: Thanks for the info! We talked to our doctor again today and got a little more info, but he was still a little sketchy on the details, so I appreciate you filling in the gaps. He told us today that it raises the the 5 year relapse free rate from around 82% to around 93%!! So fantastic! So a little step backwards to hopefully take several steps forward.
It is IV, and will be given four times, every two weeks.
craziness. but after reading all the comments, sounds like a good thing in the long run. Hope all goes well, good luck!
www.battlingbiology.blogspot.com is where im keeping track of everything! i wonder where my inspiration came from... :)
Briana, you do not know me, but I have been blog stalking you for about a month now. :) I found your blog from my sister, Penelope. I just wanted to jump in on this post and let you know I'm praying for your cute little Elena and your family. I hope this experimental protocol works wonders for her! Good luck!
Thanks Latu! I don't know you in person, but I definitely "recognize" you from Penelope's blog. :) It sounds like you are such a help and blessing in Penelope's and Mason's lives! Blog stalk away. :) Thanks for your thoughts and prayers.
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