Being healthy is what we're shooting for. The diet is for optimal nutrition, I have consulted with dieticians and they support our diet. The AHCC dose is very low so I'm not too concerned, I wouldn't give her drugs to boost it.Olga wrote:Guys, I am glad to hear that Annika is found to be NED. The scanning is usually more intense in the first two years and then a diff. regiment for the next 5 years and then less intense one goes - like once a year.
Re. diet - we are trying to be an evidence based board and although i general I support eating healthy (to enable a patient to undergo any surgeries or treatments if needed), I agree with Bonni - there is no evidence that any healthy diet improves a chances to survive ASPS longer or to remain in none-metastatic state. If there are any articles that you feel provide the evidence, we can discuss them in the health and diet part of the forum, so the discussion won't make Annika's topic unreadable.
I also have to make few comment to address some ideas that were already posted above.
Hi Olga,
Thanks for the post. I'm happy with how the board works, so I'm not into promoting anything, I just wanted to share what we're doing and why.
1. We should not assume that the best diets to prevent cancer and to cure or slow the existent one are the same, i.e. cancer prevention strategies should not automatically assumed to be the best for the cancer patient - may not be the case at all. I.e. there is no proof that we can apply the same diet with success.
No there's not, I don't know if they've done any large scale analysis of nutrition in cancer patients at all?
2. If even her big primary tumor did not attract the glucose based tracer to lit up on the PET scan image, why would you assume the micromets metabolism depends on glucose supply to survive and grow?
That's the basis of how the PET scan works. But as we've seen on here, with a slow growing neoplasm like ASPS, it doesn't work particularly well. I was just pointing out that PET may not be the best scan for ASPS as for Annika it didn't seem to show even the primary. I certainly wouldn't reply on PET scans alone to look for mets.
3. In some cancers it was found that actually overweight patients lived longer then the underweight ones.
Weight is interesting, generally the slightly overweight live a bit longer in the general population, but it's even better if you're fit and healthy. Conversely caloric restriction seems to help us live longer too. There are many contradictions in nutrition and biology. I do wonder if those who eat well, if a bit too much live longer because they have better access to vitamins, minerals and micronutrients.
4. There is a theory that a choice of the cooking oil affect cancer more than what is being cooked. Some healthy oils loose their benefits when heated. So unless you feed her raw veggies, she might get an excess of Omega-6 that increases the pro-inflammatory factors in the body - sarcoma cells might have the receptors for these. Besides the grains and some veggies are high in the carbs anyways. I agree that they release the carbs slow so there is no glucose spike - which is good for variety or reasons cancer aside - but the carbs are still there. Rice, potatoes, other grains...
Yes, I'm not super keen on polyunsaturated omega 6 oils, we try to keep to omega 9 oils like olive oil.
We are OK with carbs, we just prefer the slow release ones, so we eat brown rice, wholemeal flours, sweet potatoes etc...
5. Where does she get her intake of the flavonoids from? the fruits are higher in these than the veggies.
Two serves of fruits, and unlimited veggies, lots of berries, capsicums, dark colored produce, kale.....
6. She is a growing kid and needs enough calcium and proteins. You said the meat is twice a week. Does it include fish and poultry.
No we eat meat more than that, we try to eat vegetarian dinners four times a week, fish twice a week, and we have eggs, yogurt etc
7. I would be more inclined to look for the non-hormonal feed meat and poultry and wild fish as it is most probable that ASPS is a hormone dependent sarcoma - we have seen the hints of it.
We have local producers of organic chicken, beef and pork, we try to eat mainly from them.
8. Do you know if AHCC boosting the immune system is safe as a long term process. I am not sure if it is safe to boost the immune system continuously in a growing child? (I am not saying that it is not safe but it needs to be verified). There is an article on the Pubmed http://www.ncbi.nlm.nih.gov/pubmed/23931762 I would get its full text for sure to see what toxicities if any where found. It is unlikely they address the continuous intake by the child though.
There is no data that I can find. We will not give it to her continuously. Our bodies seem to respond better to changes/cycles anyway, like in physical training.
I hope you won't find my comments as negative. In general I support not eating junk food, by the reasons of the general health and simply because when I read the label this stuff does not feel as a food to me anymore.
Cheers
Damian
Thank you for thoughtfully sharing this joyous news and for all of the additional very interesting shared information and conversation regarding promising advances for possible new ASPS treatments. I share the great joy and relief of dear Annika's clear scans and continued disease stability, and applaud your continued pro-active research and pursuance of new treatment information. I Hope that Annika is feeling well, enjoying Life as it should be Lived as an active ten year old, and continuing to regain strength and function in her arm. As in my previous posts to you, I continue to encourage you to schedule pelvic and abdominal MRI scans in addition to Annika's regularly scheduled chest CT and arm MRI, as well as a once a year brain MRI and full body bone scan to ensure appropriate and adequate monitoring of these areas given the nature of this unpredictable disease to metastasize to other areas of the body despite apparent disease stability in the primary scanned areas as we heartbreakingly experienced with Brittany in the early years of her ASPS battle. In my 14 and a half years of ASPS experience, extensive research and observations, and constant networking, vigilant, appropriate, and adequate scanning remains one of the most important and effective weapons in fighting and managing this very challenging disease.