A friend of mine sent me the following links for us to research the subject further. His in-law had multiple myeloma and is currently in remission. They avoid dairy. Would this also apply to TCELL ALL?
I'll take a look at these, but from the titles, they look like they are geared towards preventing cancer.....too late for us, but maybe the idea is to minimize the chance of relapse? My son is on dex right now, and I've been trying to make sure that he gets enough calcium and vitamin D (without going in the sun!) to try to minimize the possible dex side effects like ON/AVN. So, we've actually tried to increase his intake of dairy (yogurts, hot cocoa, cheeses and milk) to achieve this without supplements (discouraged by his docs). It's hard to make sense of all the input and I'm just trying to do what's best for him. Any tips on how to get calcium and vitamin D without dairy and sun exposure?
For calcium, broccoli and spinach are decent sources, I believe.
My daughter was placed on calcium and vitamin D supplements by her onc and endocrinologist after she was diagnosed with severe osteoporosis (by DEXA Scan) at the beginning of LTM. Whether or not to do supplements was not at issue for us -- her osteoporosis was too severe.
Btw, as someone with a daughter with both AVN and osteoporosis, I was told that the calcium and vitamin D were to address the osteoporosis. They do not prevent AVN/ON -- that's caused by the blood supply being cut off to the bone.
I can't address the dairy/not dairy question but since my relapsed Tcell ALL 13 year old doesn't like any dairy except cheese, calcium intake is a big deal in our house. I made charts and laminated them and we track dairy (or at least we used to, once I realized just how much calcium and vitamin D is in a fried egg sandwich w/ 2 slices of cheese made with enriched Kids' WonderBread or Smart White and 2 slices of cheese, I worried less)
I buy the following products for their calcium and/or Vitamin D, although I've never gotten a clear answer on the difference between enriched food and a suplement, I've been consistenly told that the calcium should come from Joey's diet.
WonderBread Kids OR Smart White
SmartBalance Margarine Spread with Vitamin D
Safeway's Lucerne Calcium and Vitamin D enriched milk (I use it instead of water to make instant mashed potatoes and in soup)
Mission Life Balance Tortillas
I think the best thing to do is take a look at the calcium guidelines and then break out the reading glasses (if you need them:) and see what calcium your child is already getting from his/her current diet and then go from there. This is a good site for some info http://pediatrics.about.com/od/calcium/a/05_calcium_req.htm
There's a calcium list from NIH http://ods.od.nih.gov/factsheets/calcium/#h3 and a Vitamin D list http://ods.od.nih.gov/factsheets/VitaminD/ and this is also a good list http://www.health.gov/dietaryguidelines/dga2005/document/html/appendixB.htm
OK, broccoli works at our house and it's cheap at Costco :).
I'm so sorry for all of Elke's bone problems. Now I see that ON/AVN isn't the only boogey man here.
We haven't been diagnosed with any bone problems (yet) but my son had tons of pain after the induction steroids, so it worries me. It seems like a diet richer in calcium and vitamin D can't hurt him, and there is a possibility it may help something.....even if it's just me doing something to make myself feel like I'm doing something, if that makes sense .
I haven't gotten the whole article, but here is an interesting abstract.
Our onc said that steroids are expected to cause osteopenia (the precursor to osteoporosis) in all kids on treatment, so you're definitely on the ball by trying to provide good calcium and vitamin D sources.
I know you're trying to avoid the supplementation route, but I also buy orange juice fortified with calcium and vitamin D.
St Judes Dex webpage says take Always take this medicine with food or milk to decrease stomach burning...http://www.stjude.org/SJFile/dexamethasone.pdf likewise for 6MP it says http://www.stjude.org/SJFile/mercaptopurine.pdf
We saw the movie Forks over Knives and are rethinking the whole dairy thing. The movie is pretty hard core about eating a vegan diet; and I've been a middle of the road granola mom with avoiding processed foods and sugar, eating lean meats, skim milk, etc. So I'm more open to the movie than a lot of people I know. But, there is research that supports that calcium from animal sources is actually harmful to bones and contributes to osteoporosis. My husband and I stayed up late talking about the movie and we are going to change our diet even more. Basically the research found that if animal products are more than 5% of your diet the health issues like cancers, heart disease, diabetes skyrocket. It's an extreme way of eating, but we are in our 50's and starting to have some of the chronic issues associated with a Western diet. I've never been overweight and get plenty of exercise yet I've been on high blood pressure medicine for a few years and now have hit the danger zone of pre-diabetes and have already had to modify my diet. I am really concerned about my older daughter (16) who eats a horrible diet. Lauren's diet is way more controlled, but it didn't keep cancer away.
It sounds extreme, but as the doctor says in the movie, having your chest split open; a vein removed from your leg and put into your heart is pretty extreme too. LOL. The research is worth checking out and Lauren will start getting more of her calcium from plant sources and we will be greatly reducing dairy.