Sorry for being blunt here. Anyone here who stopped steroids in LTM (beginning) and is 2 or more years OT? Our son (10+ at DX) is on Total XV and just started LTM. He was diagnosed with AVN in his knee. Per protocol, steroids are stopped immediately and replaced with MTX.
We are going to discuss his treatment plan with our ONC, so all details are appreciated incl. anything you think that may have helped your child heal.
Elke's mom, Nana, and I have lots of posts on AVN. Aidan (11) is 1 year OT, and stopped steroids on day 2 of LTM. May 2008. Aidan was 7. Healing varies by location and the severity of the AVN and by age, and can take years. The younger the age at diagnosis of the AVN, the better the prognosis for healing. In Feb 2010, even after his right collapsed hip had stabilized in 2009, there was still a little more flattening that happened. But there was also some continued healing. Aidan had extensive AVN. Both hips, both shoulders, both ankles. His ortho surgeon thinks it could take until he's finished growing to see just how much bone gets rebuilt. Next month we go for Aidan's annual x-ray at the ortho surgeon.
I have started juicing veggies and fruits for Aidan in the past couple of weeks and it's helping. The benefits are endless. Just as a coincidence, I bought some ascorbic acid powder (Vit C) from trader joe's last summer. 1/4 tsp is 1000mg. Aidan gets the cold a lot, and I found that a tsp stopped the cold in its track. Well last November he kept getting the sniffles and I kept giving him the vit c. When we went for our December visit, I realized I hadn't heard him complain at all of any pain the prior 3 weeks. Vit. C is a natural anti-inflammatory, and promotes healing. One of the things to discuss with his onc, is that one of the rare side effects of MTX is AVN. It's in the fine print. So I controlled the dosage of the MTX throughout LTM, and stopped it completely in the last 3 months. That was my personal choice in consultation with his docs.
I would recommend an independent pediatric orthopedic surgeon. They know a lot more about AVN than the oncs do. Aidan's surgeon and onc kept in touch and compared notes. It worked really well. Physical therapy also helped a lot. And lots of heating pads! Boy, I don't miss those days. It was really hard. Aidan's limp pretty much disappeared in 2010. I just realized that! But he still runs funny. I will post Aidan's results of his ortho visit.
Hope that helped. Feel free to ask more questions. But check out our posts.
All the best!
We too are only one year OT, so Elke doesn't really fit your specifications. But her steroids were stopped earlier on in LTM due to AVN in the distal femur, right above the knee. It was definitely the right choice. It's been over two years now since her steroids were discontinued, and there's been no improvement at all in her AVN. But we go for an X-ray next week and a trip to her ortho in the beginning of February, so we hope to see some improvement finally. Will let you know.
Replacing the steroids with Mtx? Curious -- what do you mean by that? Will your son get extra Mtx in his protocol? Elke's steroids (much like most the chemo she couldn't tolerate) were not replaced by anything. Just keep in mind what Angela said -- a "rare" side effect of Mtx is AVN. I think it is an even greater risk when the child has had radiation, so if your son has, it's something to discuss with your onc/ortho.
As for things to help, I was told that nothing but time and discontinuation of the steroids could help. Often the orthos want your child to reduce weight-bearing exercise on the affected limbs, but in Elke's case, her osteoporosis was so severe the ortho didn't want to keep her from weight-bearing exercise. Definitely have an orthopedist follow your child.
Thanks all ... lots of good info. Yeah, I just put 2 yrs as a SWAG to try to wrap something around the risks of suspending steroids. Our son is on Total XV, so no radiation (http://www.nejm.org/doi/full/10.1056/NEJMoa0900386#t=article) . I'll ask our ONC about MTX and AVN. I've been reading the AVN threads and I am hopeful and optimistic as it does seem that AVN will heal. My take is that as long as stuff heals and there is a solution, all will be fine.
Our son's case is probably on the mild side. MRI showed normal "growth plates", so our ONC thinks that AVN will heal. We were referred to an orthopedic surgeon, but they could not help much in term of providing actionable guidance beyond giving us a pair of crutches for him to use to help relieve the weight being put on hisbones. In 6 weeks, we will check his knee again and go from there.
Our son does not actually have pain, but he is limping and favoring his left leg/knee when he walks. He can walk up and down the stairs, but with some trouble. He thinks it feels "weak" rather than pain.
Our current plan is: recumbent exercise bike daily, swimming (week-end), physical therapy (weekly), glutamine, vitamin D, calcium, juicing, lower carbohydrates intake, more vegetables and protein.
Btw, I like vitamin C too . I have to check if we can give him a tablet from time to time. He has been sniffling for a little while now.
Thanks again all!