Kat's daughter from Australia - Dx Jul 2013 at 7 yrs old

[Kat]

The idea with the sugar is that you don't want higher blood sugar levels, tumour cells love sugar as fuel via glycolysis, so don't raise it!
We don't eat peanut either as they can contain aflatoxin, a cancer promoter....
Diabetics have more cancers, esp if they are not controlling their levels. Conversely those who are taking metformin have lower rates of cancer, some other diabetes medications may reduce cancer risk too, they are looking into it.

We hope that by creating a tumour hostile environment that any CTCs (Circulating Tumour Cells) will struggle to grow into new tumours.

D

[D.ap]

Yeah it didn't really show it, you could sort of see it because you knew where it was, but it wasn't "lit up" at all. Kind of scary if you think about it, oncs want to use PET to look for tiny mets!

Hey guys
Don't know the rymh or reason for the PET I am certainly new to this technology and at the mercey of the internet
I am really sorry that it fell short of Annikas post surgical scrutiny from your angel
Lesson learned huh
D

http://www.cumc.columbia.edu/dept/medic ... tscan.html

[Kat]

The PNA stuff is interesting. I'm glad we don't eat them anymore....

[Kat]

Yeah PET is clever, and sounds good, but it doesn't work well in slow-growing tumours. They are working on fluorescent compounds that stick to tumour cells, some that do that and then light up on fMRI would be awesome!

http://www.sciencedaily.com/releases/20 ... 121617.htm

[D.ap]

Did you all see the 60 minutes on rice and arsenic levels?
Apparently rice leaches lots of arsenic as it naturally an organic happening in the ground and rice is grown from the ground water .

Thanks in advance
Debbie

[Kat]

Oh, tell Josh to eat lots of different types of mushrooms, people who do have much lower rates of cancers. They don't know why, but hey, I'll take it!
shitake and maitake seem really good.

[Kat]

Oh great, no I didn't see that. Hopefully the brown rice we get is grown in a low arsenic area...

[D.ap]

Here it be
What is difference between brown and white? Bleaching ?
http://www.cbsnews.com/news/reported-ar ... t-concern/
Ok though it was naturally occurring
Apparently as a result of chemically induced in treating weevil of rice
Anyway maybe buying somewhere organic
Only G knows
Good night
Love to you all
D

[Kat]

No, they just don't take the bran off. Good fibre and vitamins.
We eat doongara rice, similar to basmati, but grown here in Oz.

[Kat]

Arh good, that article says it's from contamination. So hopefully the rice areas here don't have that history. Should be OK, our rice areas are mainly new to cultivation when they first began irrigating. Before that they were sheep/cattle grazing areas or vacant land.

[Bonni Hess]

Dear Damian and Kat,
Thank you for your update and all of the thoughtful shared information. I am so grateful that Annika's scans were clear and that she is doing well
I agree that she should have chest/abdominal/pelvic CT scans since chest X-rays are inadequate to show any small mets, and I too would be concerned about reducing the scan frequency from six months to one year. However I know there is a valid concern about the effects of radiation exposure from CT scans especially with young children like Annika so it is a difficult decision. I am grateful that you persevered with obtaining a head MRI because in contradiction to what the oncologist told you, you definitely DO NOT want to wait for symptoms to develop, because once mets become symptomatic they are often too large to successfully treat.
I think it is always good to eat healthy, but unfortunately, I have not personally seen much success or documented evidence that supports that diet and nutritional supplements can cure cancer. I know of several patients on this Board who were following strict dietary regimens and taking various supplements who heartbreakingly lost their courageous battles. When Brittany was first diagnosed we pursued the approach of going to a naturopathic doctor who prescribed several hundreds of dollars in nutritional supplements, we gave Brittany maitake mushrooms and immunocal supplements, Brittany reduced her sugar intake, etc. but unfortunately none of these efforts resulted in the stabilization of her disease. Brittany now for the most part eats whatever she wants to within reason (with the exception of grapefruit and those foods that can interfere with the effectiveness of her Cediranib) and does not significantly restrict her sugar intake. I know that the topic of fighting cancer with diet and nutritional supplements is a very controversial one that has previously elicited heated conversation between Board members, and I of course support and respect everyone's decision to pursue whatever approach they feel necessary or comfortable with, but I just wanted to share our personal experience and philosophy about dietary restrictions and nutritional supplements as an approach to fighting and curing cancer.
My most special thoughts and very best wishes continue to be with you and precious little Annika, and I will be anxiously awaiting your next update which will Hopefully bring good news of continued disease stability.
Sharing the great joy of dear Annika's good scan results with happy hugs, caring thoughts, healing wishes, warm friendship, and continued Hope,
Bonni

[Kat]

G'Day Bonni,
Thanks for your post. Yes we're concerned about the radiation load, but we'd like to maintain six monthly scans for at least the first five years past DX. MRI tech is getting faster, so I hope soon that we can scan more of Annika with that in a short visit. The only area that really needs the CT is the lungs, they are working on deep/finer ultrasound too, so I hope to switch to that eventually, lots of interesting stuff starting to come down the pipeline in med imaging.

Yes, there was no bloody way (sorry) that I was waiting for symptoms before a head scan, and I really wanted that jaw lump scanned with the MRI!

With the diet, no it can't cure it, but we hope that with optimal nutrition that Annika's body has the best chance to fight anything that's left behind in her body. The sugar stuff is based on metabolic research I have undertaken, statistically people with higher blood sugar have more cancers, people on glucose medication have fewer than average, so we're careful to keep ours "steady" so that stray cancer cells don't have an easy "fill up". The mushrooms seem to statistically reduce cancer occurrence too, with shitake and maitake seemingly the most effective. The only thing Annika is on at all is the AHCC, which has been shown to boost NK and dendritic cell populations in quite a few studies. NK cells in mice seem to be very good at finding ASPS cells, and like I said above, I do wonder about chemo damaging the immune system and "freeing" ASPS to proliferate. I have no evidence for this, but it fits with what happens to patients. I'd love to test this stuff out, oh for a lab! Like they tried with the G_VAX idea, I'm hoping that more dendritic cells means more chances that some will find an ASPS cell and "tag" it as a enemy and trigger an immune response. I can't find any evidence of harm on a low sugar diet, on the contrary, they seem to be good for you. I also can't find evidence of harm with AHCC so I'm happy with that. Interestingly Annika seems to get over colds in about a day on AHCC!

Annika really likes our diet and is extremely interested in health and nutrition, she now wants to be a nutritionist/dietician when she grows up! She happily refuses junk food at parties when we are not there, so it's not like we are making her do anything. We actually can't eat lots of foods now as the sugar content makes us feel sick! We eat 70% cocoa chocolate and find it sweet, I like 90% better.

I can't find any real evidence for any other "supplements", so we don't do them. I cannot think of how a coffee enema could help you!

We are starting to plan for Annika's 10th birthday this year! We can't believe it!

Take care.

Damian

[Kat]

I was going to say, the word "lump" is now my least favourite, along with a whole bunch of others we use all the time on this forum....
However N.E.D. is my friend, as is N.A,D. (no abnormality detected)!

[Kat]

This is probably years out, but still cool.

http://www.infectioncontroltoday.com/ne ... eases.aspx

[Olga]

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 in 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 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.

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.

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 micrometastases metabolism depends on glucose supply to survive and grow?

3. In some cancers it was found that actually overweight patients lived longer then the underweight ones.

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. It is good that they release the carbs slow so there is no glucose spike - which is good for variety of reasons cancer aside - but the carbs are still there. Rice, potatoes, other grains...

5. Where does she get her intake of the flavonoids from? the fruits are higher in these than the veggies.

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.

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.

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.

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.