We are finally nearing the end. It has been so long. Josef started while in preschool and now is finishing 2nd grade. Well anyway he had his second to last LP today. His next LP is scheduled for May and his end of treatment date is July 6. It sounds as if we can have his last LP moved to June and do the bone marrow biopsy then or keep the May date and have just the bone marrow biopsy in July. I am leaning toward doing it all in June as then he would have one less procedure day. When confronted with choices we always ask what would happen if he was on study but we did not get a really clear answer.
Anyone have an opinion? It is interesting to me that I know the end of treatment bone marrow biopsy was once routine and then they stopped doing them I think even at our clinic. And now they are back doing them. Maybe someone could shed a bit of light on this as well. My hunch is that with the MRD sensitivity maybe they can now actually detect more.
So please let me know of your experience or if this sounds right to you. Thanks,
Here is a photo of Josef right after his procedure today. Seems to be going better with Propofol. btw - hospital has no supply problems of IT MTX
From what I understand, our clinic does not do final bmb/lp when treatment ends. We had a bmb with fish cycle 9 of ltm at my request, but they did it as a favor, not because they thought it was necessary. Our final lp is mid May according to schedule, tx ending 5-26. Josef's looking good!
Josef is beautiful and he looks so healthy! We are on the 0932 study and our clinic does not do end of treatment MRD or FISH biopsies. That worries me and I wish they did, but they don't. I'm wondering if this may change before we are done with treatment (May of 2013), but I'm not sure if it has to do with the actual study we are on or if it also has to do with our hospital and their protocol (sometimes they do things a bit different than the study).
I wish you and your son nothing but the best and an EXTREMELY long and healthy life!!!
so exciting that Josef is getting so near to end of treatment!
On our protocol (COG 0331), end of treatment BMBs and LPs were up to the discretion of the individual hospitals. Ours does them, but I think to get around insurance battles, doesn't send the BMB to pathology unless something looks amiss. Our chief onc reviewed the BMB slide (as she does every one) and came and went over everything she saw with me. Since Elke had only one blast (as I'm sure you know, up to 5% is considered normal), that was it. Our protocol does not call for MRD or any further testing either. If you wanted it, you might have to pay for it on your own, unless your dr can articulate a specific concern regarding your child that merits such specific end of treatment testing. I spoke about this with our chief onc, and she asked me what we would do with the results. It's a good question. I recall someone posting on here in the past year whose hospital did do MRD testing at end of treatment, and they unfortunately found that her son was MRD positive. And then had no idea what to do with it (since there's no stats at all about end of treatment MRD). And the final result was that they would do nothing. Hmmm. Not sure that's worth it. But that's a personal decision.
Elke was scheduled for a regular LP two weeks before her end of treatment date. Her dr said we could do one again at the end of treatment, but we both decided that that was unnecessary and unwise (since she was on protocol, she had to do the scheduled LP two weeks beforehand). She had had a number of "abnormal" LP results in the past, but we had learned that she developed inflammation that showed up as excessive WBC in her CSF after LPs, so having two scheduled so closely would likely mean another false "abnormal" result. If Josef has had no CSF concerns and since he is off study, I personally would put serious thought into combining the procedures. But yes, if he were on study, I think they would have to do the LP at the regularly-scheduled time.
So great to have another of our children so close to the end of this tunnel!
OK- obviously the first order of business is how handsom Josef is! And I am not certain he was interested in having his picture taken. Super cute. Now- onto less interesting stuff. We did not opt for the final BMB. It seemed rather random to check on the last day of treatment. I figure nobody told his bone marrow that it was the last day. I felt if we were going to do another I would like it 3 months after treatment stopped. Our Onc said there was no clinical evidence that finding relapse on the last day would lead to better prognosis. And that is the reason we do all this stuff, isn't it? However, if you are opting to do it, I would vote one less proceedure too. I think the less anesthesia the better.
We had the same conversation as Ann and Heather refer to. If they find something on the last day of treatment, what are you going to do with that info? That's why we thought it best to do one before treatment was over in our case (to check on the status of his chromosomal abnormality). I know one of our new oncs said they do it at other clinics mostly for parents' peace of mind.
Thanks for all of the responses. I was a bit surprised that so many places are not doing the bone marrow at end of treatment. Not that I see anything wrong with that at all I just thought our hospital was catching up to the others.
Still leaning toward doing it all in June and I will ask to see if they do MRD testing. I have a feeling they will do the MRD but if they do not I am not going to push for it.
He is doing really decent lately and as you can see from his picture looking pretty good. He had several months where the puffiness would not go away and then some hair thinning but that is mostly all gone now.
Wow, I can't believe you guys are finishing. I know it's a long, long time, but it really seems not that long ago that I saw your first posts. Anyway, I am very happy that you guys are finishing. Jon, you have been such a great help to me; I don't think I could ever thank you enough for all the help you have given me and Pete. And I love the photo of Josef looking so handsome.
We don't do EOT BMA's at our clinic. No one ever mentioned it to me. I do wish they did one 3 months out, as I reckon that would be really useful, and it would have been majorly useful for us.
I would definitely recommend combining both procedures. One less GA has to be good. And yes on the MRD, you would have to push for that if they didn't automatically do it.
Anyway, very excited for you guys for being so close to the end. Party time!