I've been meaning to start this thread for ages, but I've finally just sat down at my computer and remembered. We just started maintenance back in April (yeah!) and we are on Arm C of the clinical trial, AALL0932. Wanted to connect with any other famlies who are either on Arm C or D (vincristine/steroid pulses once every three months), just so we have a place to discuss. I know Arm D gets more methotrexate, but I'm interested in talking with other families about how they feel getting vincristine/steroids every three months instead of once/month.
Our quality of life is excellent so far (except for a recent counts crash and fever!), so we are definitely enjoying that aspect of the less toxic treatment. Then again, it's always in the back of my head that my child is not getting the standard, tried-and-true treatment protocol. When I've brought it up with our Onc, and voiced my fears about relapse, he pointed out that, even if Elsa were to relapse on Arm C, we could never rule out whether or not she would have relapsed on Arm A. Oddly, that did make me feel a bit better. Plus, deep in my heart, I do believe the treatment is excessively toxic and, I'm happy to be part of the scientific research that is addressing issues of treatment toxicity. Obviously, we will be happier to be part of that research if, 10 years down the line, she is happy, healthy, and this is just a distant memory.
Any thoughts from anyone else? Experiences on Arm C or D?
Hope everyone is moving along towards better days.
All the best
Thanks so much for starting this thread. We are in 0932, but do not start maintenance until the end of this month. We too are torn about the tried and true versus less toxicity. Our girl has done so well with treatment and has all possitive genetics however I don't know if I would forever blame myself if she relapsed and we allowed her to be randomized. Oh, how I hate cancer and would give anything for all of us to never have to deal with this!!!!
Hurray for being so close to maintenance! Though I know every kid is different AND maintenance can have it's ups and downs, the past three months (prior to this most recent steroid pulse) was the best three months we've had since diagnosis. I made a conscious decision to really "live it up" while we could and boy did we! Hoping you guys can have a similar experience.
I know what you mean about feeling like you could never forgive yourself in the case of a relapse on C or D. Like I said in my post above, our Onc really helped ease my mind when he told me that a relapse on C or D does not mean the same child would not have relapsed on A. There is no way to go back in time and check, so I think that I'm ready to just let go, go with the flow, and trust. Really, I feel like that is my only choice. I can't control her body, her cancer, her treatment (really). All I can control is my mind-set and how we live today.
Our quality of life is SO good on C, that I have to believe it is the right choice for us. PLUS, now that we just had our second steroid/vincristine pulse of maintenace, it is SO clear to me that this is the right choice. My daughter absolutely fell apart over the last 4 days (we are on day 4 of 5 with steroids). She has basically cried all day, every day since clinic on Monday (she is 2.5 so crying is really her only way to vent). She stopped sleeping, started crying/whining/eating all day. She just doesn't tolerate this crap very well! Thank goodness we are on C!!
All the best of luck to you - please do check in, if you'd like, when you are randomized. Though I started this thread for people on C or D, I think it is a nice place for people to chat whose kids are currently in maintenance on 0932.
My son is also on AALL0932. He started maintenance in April 2012 as well. It was a really hard decision to make to be randomized or not. We kinda wished we didn't have a choice or someone could just tell us what to do. We were really leaning towards going with the standard treatment. After a meeting with two of the Onc's we decided to remain on the clinical trial. My son was randomized to ARM C. We felt the same way - what if this is not enough chemo to prevent relapse. My son suffers from foot drop and has been on OT and PT therapy for 6 months now due to side effects of Vincristine. He has made a lot of improvement with his foot drop since only getting the Vincristine every 3 months. We received a lot of support from our family with the decision we made.
July 26th marks our 1 year since diagnosis. It's been a long hard year. Not sure how we made it through. I keep telling myself someday we'll look back on this and say "how did we survive this year"
Best wishes to everyone and their treatment plan.
Our one-year mark is July 20! Looks like we are basically on the same schedule - our maintenance on Arm C started April 1st. I replied to Jennifer above about my feelings re: relapse and Arm C. Plus, Lori's response below about the evidence supporting the less frequent vincristine/steroid pulses had a lot to do with our decision to remain on-study. Though their frontline treatment looks a little different, so we can't do a direct comparison, one of the arms of the Berlin-Frankfurt-Munich protocol does not do Vincristine/Steroids at all during maintenance and achieved similar 5 year EFS rates as the U.S. protocols.For the longest time, I was researching wildly, trying to decide if we should stay on study. Now that we are in maintenance, I am just trying to enjoy our new, easier life (with the exception of this week on steroids/vincristine!) and relax a bit. Easy to say, definitely a little more challenging to turn off my brain!
Hope you guys are doing OK with your most recent steroid/vincristine pulse (or perhaps you haven't started it yet?). At least it's only 5 days!!!
Wow - that's weird how we were diagnosed 6 days apart and on the same ARM of the study. Tucker has been doing really well. I keep waiting for the bottom to drop. I love seeing him able to play outside with his older brother and do some normal kid things. We were in clinic on the 26th of June and started our steroid pulse. He does pretty well - eats chips and hot dogs like crazy and gets a little puffy in the face. Vincristine is our biggest problem. I have to carry him to the car after he receives the Vincristine. It effects him immediately. He can take about 3 step and then starts falling. He seemed to get over this last dose a little quicker. He was wearing AFO's but they were so uncomfortable and left terrible sores and red spots on his legs and ankles. But, since we have started maintenance we have not been wearing them. If am happy about anything on ARM C it's that his physical impairments are improving daily.
I did quite a bit of research myself before agreeing to be randomized. The more I learned the more difficult making the decision became. I am becoming more at peace with our decision.
I wish you and your daughter the best during this phase of treatment.
I just wanted to say best of luck to you and your daughter during Maintenance! My daughter started Maintenance last November, 2011 and is on 0932. I was *hoping* for Arm C because she had moderate foot drop from the Vincristine. We were randomized to Arm A (standard treatment). I was a little upset because I know that this treatment is harsh from start to finish and I am so worried about the long-term effects of all the hard-hitting chemo AND the monthly steroid pulses (which are really, really hard for her!). I spoke with her nurse practitioner when we were at the consent meeting to start LTM and she basically agreed that the study is mimicing what is happening in Europe and they are supposedly getting the same EFS rates as we get with more chemo, hence the reason for the study to lower the chemo amounts in LTM. Unfortunately, we didn't have a choice because she was randomized to Arm A. When I expressed concern about the monthly chemo and steroid pulses, her n.p. looked at me and said, "she's getting the tried-and-true treatment mom...don't worry." Of course that didn't help me very much because I am the world's biggest worrier. My daughter is now 10 years old and LTM was smooth until April. Her counts were too high and they upped her 6mp to 125%. Although her counts didn't crash, she developed horrible, horrible sores all over her hands, feet in her mouth and on her little bottom. It was awful, a pure month of pain for my sweet girl!!! She also began losing her hair like crazy and it is very, very thin now. She looked better at the start of LTM than she does today, 8 months later! They held the 6mp and Methotrexate for 17 days and started back up again. Her counts have been better since then, but I worry about everything...too much chemo... chemo holds, etc., etc., etc. I will never stop worrying about her even though I know that doesn't do me or her any good at all.
Best of luck in LTM. May you have a smooth rest of treatment and your daughter be feeling better all the time!
I think that you very nicely replied to one of my maintenance threads a long time ago and I totally forgot to write back. Sorry! I'm trying to do a little better with my correspondence skills these days (though I am perpetually weeks and months behind in my email box!).
We actually just experienced our first maintenance crash. The past three months were absolutely dreamy/wonderful/amazing and then we had our clinic visit this past Monday for the big chemo/spinal visit. Her ANC was, very suprisingly, only 400! So she is off 6-MP for a week and actually got Leucovorin on Wednesday to help decrease the effects of the IT methotrexate. She even got a fever the night of her big chemo day and we ended up in the ED (ugh!) but, amazingly, in the 10 hours since she'd last had her blood drawn, her ANC had crawled it's way up to 600. We were SO happy to go home since we were sure we were going to be admitted with a fever and ANC <500. Hopefully, by Monday, she will have recovered and we can return to our regularly scheduled maintenance fun. Hoping, Hoping, Hoping.
I know what you mean about the constant worry. Often, my dad says, "I know that girl of your is going to beat this leukemia! I don't know if YOU (meaning me) will survive this though." It's just too much for a kid to go through. It's just too much for a parent (especially a worry wart like me) to go through. But, go through it we do!
Hope your girl is feeling better and that maintenance can return to something more tolerable!
All the best
Wow...I've had so many people say the EXACT same thing to me..."I don't know if you will survive this!" I've been told that I look tired, that I look ten years older and that I am too thin (I've probably lost about 20 pounds since my daughter was diagnosed). In my head, I want to say to them, "You try going through your only living child being diagnosed with Leukemia, watching her go through horrific treatments that make her sick, lose her hair and bloat her face/body to extreme changes, have many blood/platelet transfusions that make her so very sick, having spinal taps with only a twilight sedation where I have to hold her while the n.p. performs the spinal tap and being kept out of school for over 9 months when she loves school more than anything, and having your child ask "why me, mom?"...you try going through all of that and tell me how you look & feel!!!" But, I wince and say nothing. I say nothing because I am in the battle of my life for my daughter and nothing or no one will stop me from fighting for her, no matter how bad I look.
I'm sure you feel the same. I just wanted you to know that I am happy that your daughter is feeling well. I'm glad that LTM is tolerable for her. We go for our 3-month spinal tap with Methotrexate and the Vincristine & steroid pulse next Friday the 13th (of course). Honestly, the steroid pulse is so much harder on her than the l.p. She cries incessantly, wants to do nothing but sit at home and play video games. She is miserable for 7 days at least. I hate the monthly steroid pulses, so I am thankful that some children only have them every 3 months...what a blessing!!!
Take care Georgia. My best to you and your precious daughter!
Hi Lori, Georgia and all,
Being a cancer parent has made caregiver "hovering gene" go into overdrive after watching my child react to the harsh chemo for the past year. Understandable.
I feel that it is really important for the eradication of leukemia and other childhood cancers that we allow them to collect data using our kids. It is the only way they can implement a new maintenance protocol. I was told that the onc community already knows that they can use Arm C and D and get good results, they just need the data to support it. Blood cancers are so close to being eradicated. Thank you for helping by being on study! I was told that only 1-2% of adult oncology patients participate in study. That is pathetic, since all the medications our kids use were approved for them!
Ben is on Arm A in cycle 2. The monthly steroid pulses make him act more like a menstruating teen. ( a good sense of humor goes a long way in this family) I am all about the quality of life during treatment.
Lori and all,
I am a dad of another kid dx ALL on 10/19/2012. I am totally with you. " But, I wince and say nothing. I say nothing because I am in the battle of my life for my daughter and nothing or no one will stop me from fighting for her, no matter how bad I look." Bless for all of our kids, hope them all go through the treatment smoothly no matter what risk group, which arm, what stage.
I think I replied to the wrong person- but here it is anyway! Elias is OT for almost 2 years (September), so this study was not an option. But we did another study (no longer available- that makes you gulp) so I can certainly relate. One thing I did was ask the Onc his/her opinion and if there were any preliminary results. If this isn't a brand new study- they will have some data already. They have to analyze it continuously to ensure that the treatment doesn't cause danger. So they should be able to tell you something. I really grilled the Onc about it. I wanted to do a study for the betterment of treatment, but in the end it is really your own kid you are most worried about (of course). My little ol' opinion FWIW.
Oh man - I have wracked my brain on this one to the point of craziness. My 6yo son is in month 3 of ARM A - not on study - average risk. No choices. We just came out of our first 3 week long chemo hold. My biggest concern was that 3 short weeks between pulses would not be enough to clear his system. This has turned out to be correct. Luckily - VNC has never been an issue for us....it is the steroids that cause the big problems for him. I know Georgia and Jennifer on here and have already gone over this with them.. We are also friends with a little boy who got ARM D. This family even went so far as to get 2nd, 3rd, and 4th opinions from other hospitals in different states. Just one oncologist (who does not treat them) said she would choose ARM c if it were her child, and she had a choice. The other doctors tend to concur that studies are needed, but to stray from success rates as high as they are comes with risk, and an unknown outcome. (I read into this as "stay on A") I keep arguing the logic of...."if other kids can go every 3 months between pulses...why can't we go every 6 weeks instead of 4....or even 8 weeks....we would still get many more steroids/VNC doses overall. The difference between the ARMs is so HUGE in dosing intervals...that I do not understand why no middle ground. The difference between other countries protocols with similar cure rates is also so vast. I get the warning talk each time I ask my oncs about allowing me to give steroid pulses further apart, or begging for ARM c -I am told things like "I know a girl whose mom messed with giving her less steroids, and she relapsed in the last month". What? I can't wrap my mind around the ethics of experimental arms...other than for the betterment of all, some are potentially sacrificed. My son begs me not to make him take the steroids...their effects are just fading by the time the next pulse comes up. He had gained and kept 1.8 pounds with each pulse, and who knows what it is doing to his internal bits. We will not know for years whether the new ARMS will be the new standard or not. I think this can be said for other aspects of treatment....giving DOX and ARA-C for average risk kids...giving a DI phase at all.....these might disappear too. I think a kinder approach to an ALL cure is close at hand with cell therapy...but here we all sit in this window of time before that day. Wondering if we are doing, or have done the right thing. The doctors do not know the answers either. I think ShakinQuaker summed it up for me - her son Elias was on an experimental ARM that is no longer around. So here I stay on A, and I do not "mess" with dosing...and I hope we will be lucky enough to be in the 90%. Keeping kids dangerously immune suppressed for over 3 years (in the case of boys) scares me more than VNC/steroids....so over all - therapy plain old sucks. But it is all we have right now.
Georgia - I think the ARM that gives you the least amount of worry is the ARM to be in.
Ok yes this was the hardest part for me as a parent to figure out if we should place our son on study or not. Our son was diagnosed in April 2009 when the COG was offering 0331 study. The study had been around a bit already and we were told our son was low risk. So I studied the choices and read all the abstracts and reports I could find online. For low risk kids they were studying giving extra PEG - and since this was accepted in other protocols and he handled the dose in induction ok I hoped he would be picked for this arm. BTW - they used to use long needles and his mother and I and the nurse had to pin him down while they injected both thighs at the same time. So the use of infused PEG right now is such a blessing and is the result of studies. Anyway turns out he did not have low risk chromosomes and he was standard risk so I had to rethink if I wanted him on study. The only treatment arm available other than standard was a very tough consolidation (almost like an early DI) well I could not find much in support of this approach only that higher risk kids benefit from it but not so much standard risk kids. But again who knows maybe it would have been better - we still don't know.
So Josef received the standard protocol. Very much the same as yours now in 0932 for LTM- the only difference is now they do a second IM after DI. And exactly the same LTM of a COG study called 1991 from early 1990s.They are using it due to high proved rates of EFS. Yes there is an idea that Europeans and others are able to get high EFS with less. Well that is not exactly true - the success rates of most European protocols like in the UK are actually less than the U.S. protocols offered by COG and St. Judes as well as Dana Farber. In Germany the protocols are pretty tough and have actually been used as a model for recent COG protocols. And the number one advancement in the last 15 years has been the understanding that dexamethasone (decadron) produces superior results as it reduces relapse in general and especially relapse of spinal fluid. They are not sure if it is needed during all of LTM or how much during LTM or only during frontline so this is what the current study is focusing on along with how much methotrexate is optimal during LTM.
Josef was able to handle the heavy chemos really well. Now foot drop from vincristine some issues with IV methotrexate but we made it through. Even as a five year old he refused to even rest and took one nap during all of frontline treatment (cyclophosphamide during DI finally slowed him down). But dex turned our house upside down every month for 8-9 days. He was miserable. It was just as bad as induction. It is hard but you have to leave this part to the experts. There are reasons for all the arms and as soon as one arm is proven better they will switch all kids - even those off study onto the best EFS arm. So hang in there and find ways to distract your child during dex pulses - I often just put Josef in the car and drove as the idea that we were going somewhere helped him mentally even though half the time I had no idea where we would go.
Ha thanks! Yeah I sort of went nuts for a few months after Josef was diagnosed reading everything I could about all the protocols and still follow any new published changes. The reason I really like this LLS board is because there are so many people on here who have really become fluent in different areas.
Hope all is well with all the kids,
Would love to know where you found the EFS rates for the various European studies - I searched and searched and wasn't really able to find anything. I ended up asking our Onc to go over the Berlin-Frankfurt-Munich study with me and he did a cursory overview, which is where I heard the bit of info that they don't use Vinc/Steroids during maintenance (on one of the arms) but achieve similar EFS.
We too are concerned about arm c and d. Today was our last appontment for IM2 an we went ahead and signed the consent to be randomized. I keep praying that we will just end up with arm a or b and not worry or reconsider; however, it was late in the day so we will not know until tomorrow. Thank you all for your great input!!!
Glad to hear you've entered the land of maintenance! One giant step towards the end. Look forward to hear where you are randomized to. We are still happy on Arm C and despite my occasional frenzied thoughts of relapse, we are happy to stay where we are.
Hope your start of maintenance went well.
Yes it is very hard to find published results from recent studies. The highest EFS rates I have seen for standard risk kids are the COG (called CCG then) was the 1991 study which had one arm at 91%. That arm is very similar to the standard protocol of 0932 the current COG study. The other high EFS is from St. Jude I think they are on Total Therapy XVI is around 92-94% - but they use more subgroups as test MRD more times. I am searching for the European studies that use less chemo it has been awhile since I did those searches. I do recall one was out of northern Europe - maybe the NOPHO?. I am almost sure this is the group that has used less chemo and had good rates of EFS (but still less than COG). Again can't find it at the moment but will keep looking.
I will keep searching but the BFM group in Germany is very closely aligned with the COG. In fact in some of the publications from COG they refer to their regimen as based on the BFM backbone.
If you go on Cure4kids you can watch powerpoint seminars from Dr. Pui (St.Jude) and he outlines the advances in ALL treatment in the last 40 years. St. Jude and COG will certainly use less chemo if it produces similar rates. Dr. Pui is possibly the most respected ALL researcher and I am sure he would use less steroids if he could but you will hear in his presentations how the dex and triple ITs has allowed them to decrease cranial radiation which is much tougher on kids.
In fact the point of the current COG study is to see if less dex pulses in LTM effects EFS. As soon as they have data showing one arm to be superior they will shut down other arms. My searches of the protocols for my standard risk child were always based on an idea that I would get on a plane and go somewhere else if it was needed to get better treatment. St. Jude does appear to be the top EFS for standard risk kids but the advantage is not great over COG.
Have you noticed the oncs do not sweat the small percent EFS from study to study. These drugs are old so they are really used to using them and I am pretty sure they are more stressed over the relapsed kids and the very high risk kids.
Well, all that worry and fretting and we ended up with Arm A! I am relieved and yet a little let down that we have to get so much chemo when less may be just as good. I also don't know if I could handle that extra stress for the next 18 months (if we had gotten any other arm) as last night I barely slept and woke up in a panic. I am so very thankful for everyone and their encouraging words, thoughful posts, great research, and support. I love reading this board and learning about the "real side" of leukemia and chemo from parents who have been through the worst and still live to write about it. I will continue to update on Em's progress as we move forward. Our LPand other chemos are scheduled for 8/8... is it weird that I want to have a maintenance party??? So glad that we are making it through this long road and getting closer to OT!!!!!! Blessings and good thoughts to everyone.
I've been checking to see which Arm your daughter was randomized to and I'm glad that you are okay with Arm A. I remember your same feelings of wishing for Arm C or D, but being somewhat relieved when our n.p. called to say it was Arm A. I remember talking with my husband the night before in an all-out panic after our daughter went to bed and saying, "If she gets randomized to Arm C or D, I'm going to pull her off-study because I cannot forever wonder if she might have needed the extra chemo/steroids." Of course he looked at me like I was nuts, but knew that my high-anxiety personality would probably do just that...pull her off-study out of fear. I admit, every 28 days (really 23 when you count taking the steroids for 5 days starting with day 28) of vincristine/steroid pulse is a bit much. My daughter struggles so much emotionally on her steroid pulses and they seem to have gotten worse since we started LTM in November, 2011. She cries a lot (which is NOTHING like her usually happy-go-lucky personality), wants to be alone a lot (which I don't allow because I've noticed that she just goes to her bedroom and cries until I come and get her out to be with us), and generally is so tired/feels so crappy. I keep telling myself with each pulse that we are one closer to OT, but I can tell you now that I will be a bundle of nerves OT worrying about every little ache/pain/fever she has!!! Can you feel the anxiety permeating through this post....
Best of luck to you all in LTM. I'll be thinking of you on the 8th because we have out next chemo appointment on the 10th. Let us know how you all are doing as you move through LTM.