First, the bone density issue and AVN are two different things. You can have one without the other. AVN is dead bone, and dead bone is dead bone. Bone is constantly reabsorbed into the body and regenerated. But when the blood supply is interrupted, this process stops/stalls. In children, however, because of the growth rate, this process, though slowed, can eventually restart. Next, your othopedist and radiologist are the most qualified to read the MRI and scans. Oncologists, for the most part, don't really know what they are looking at. I discovered this when Aidan was first diagnosed with AVN. First the oncologist said AVN, then no AVN, then right hip, then left hip. Don't mess around - just get the experts' opinion. Thirdly, AVN really exploded recently when they added dex to the protocol. Before that it was rare ( or rarely diagnosed). Next I discovered that the oncologists don't really know ( or really want to know ) about AVN. Their focus is on the cancer. That is rightly so. Your orthopedist is focused on his bones. YOU are the only one who has to focus on your child's entire well being. Aidan's AVN was extensive, so the Children's Oncology Group, which runs the protocol recommended stopping the steriods. I was happy to do so because I hated them anyway, and my child, who had survived all this extra chemo he received being randomized to the arm with the extra chemo, was completely felled by these steroids. I never ever want to see him in that kind of pain ever again in my life unless he's giving birth! He would wake up from sleep, turning over in bed, screaming from pain. Aidan on narcotics indefinitely was not a desirable solution for me. That said stopping the steroids was a conversation, where I was made fully aware of the risks. Depending on the extent of the damage, you can make several decisions. To stop all together and see if there is sustained improvement. To stop and restart. To reduce the dosage. To stop and restart at a reduced dosage. Or not to stop at all. The same kind of decision you have to make if you had toxicity from 6mp, for example. There is no wrong answer. Aidan's docs and I tried many things. But stopping the steroids immediately eventually paid off. Also, the AVN does heal in children if the damage is relatively small. Even though Aidan's right hip was collapsed in November of last year, a year later it is beginning to heal. The other thing I persuaded his docs to try was to reduce the methotrexate dosage since AVN is a late effect of the methotrexate. And even though they told me that it was rare, I reminded them that so was AVN in a 7 year old. And I reasoned that Aidan apparently had a susceptibility to AVN. It seemed to help. But I don't know for sure since this is not a controlled study. But they were willing to try because they now have several other kids with debilitatingly painful AVN. Since I'm willing to try and they were willing to let me, we tried it. Stopping his 6mp didn't improve anything. I increased his Vitamin D and added more calcium to his diet.
Yes - his oncologists are nervous about him being off the steroids. But NO ONE, and I mean NO ONE, knew what the right answer was. And that's because they don't understand why or how the steroids cause AVN. You will hear them say that " IT IS THE MOSTLY LIKELY CAUSE" of the AVN, but that's because they really don't know how it does it. And they continue to not know. But AVN also develops from steroid use in other illnesses that use steroids such as asthma and lupus. My 42 - year old sis-in-law is having a hip replacement next Friday because her right hip collapsed from AVN from a lifetime use of prenisone, and a tipping-over-the-edge IV steroid treatment for her mulitple sclerosis. It's also extensive in her left hip. My cousin, who has lupus, also has AVN. That's how the oncologists can even reasonably suspect the steroids. There is also AVN that develops from no known cause as well. So whether Aidan might have been one of those kids anyway, and the steroids in DI tipped the scales. Who knows. People can live their entire lives with AVN if it never progesses. Even the COG hedged when I asked them and said they were exploring other options. And across the country there was are any number of different scenarios that are happening to deal with this. All of this is to say that there is no wrong or right answer here. Just the decision of how to proceed that you decide on based on the extent of the AVN and the extent of his pain. You can have AVN that is not painful. It's o.k. to try something for a couple of months, evaluate, try again, evaluate. It's what we do. Do I worry about relapse? A little. Since there are any number of kids on all different dosages of these chemos, or some not able to take some of the chemo at all, and they do just fine, and there are kids on a 100% of everything who still relapse, there are no guarantees of anything, and I choose to believe that Aidan will be fine. That's the trade off I'm willing to risk to have a child who went from being disabled and depressed last year, almost back to normal this year. This way all I have left to worry about is extreme chemo brain, extremely high liver counts, H1N1...;)
Keep asking questions here and of your docs, and don't accept incomplete information or explanations. Good luck.
Angela ( mom to Aidan, 8.999999) dx pre-b ALL 10/1/07, on protocol ALL0331, on LTM since 5/19/08. dx with AVN 5/20/08. Stopped steroids 5/21/08. AVN - both hips, both shoulders, left ankle. All beginning to heal as of August 7, 2009. Aidan is now pain-free.
