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  #1  
Old Thu May 27, 2010, 04:33 PM
Robi1Knobi Robi1Knobi is offline
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Anyone listen to AA & MDSIF Webinar?

I just finished listening to the Webinar, and was wondering if any of you did too? I had alot of questions...Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #2  
Old Thu May 27, 2010, 09:48 PM
Hopeful Hopeful is offline
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Hi Linda,

I listened. What were some of your questions?
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #3  
Old Sat May 29, 2010, 01:42 AM
Robi1Knobi Robi1Knobi is offline
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questions

My questions were all health and diet-related, which the doctor didn't know anything about...I asked since petroleum products can be a cause of AA, should skin care products with petroleum or mineral oil be avoided? Also, I wanted to know if preservatives such as potassium or sodium benzoate mix with Vitamin C in foods, create benzene, which can make AA worse? I also wanted to know if he knew of anyone with AA being helped by certain foods, such as pomegranate juice (one of Dr. Andrew Weil's AA patients resolved her AA by drinking it) or hindered (dairy, tahini, cranberry, ect noted in a University of Oklahoma's recent study). He knew nothing, and said that he didn't think what we consumed would have any effect, I beg to differ (....Why did all the people that have conquered cancer (Max Gerson Institute) do it with diet? I feel like doctors don't look into the nutrition aspect, because its not paid for by drug companies. I think drug companies WANT people to be sick...
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #4  
Old Sat May 29, 2010, 03:50 AM
lotusbud lotusbud is offline
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Hi Linda,
I did not listen to it, but the nutrition issue interests me.
Once there was a chamistry professor who said that the body will be able to - and will make - cholesterol out of lettuce, if it only gets lettuce. The body needs cholesterol for nerves and brain, most of brain is fat. Or it takes it from other place in a body..
I have a kind of practical approach, you can't take something from nothing. How does this apply to health problems? I am not an authority in these issues, but would think it is easier for the body to get the nutrition in a form "nature intended". Sometimes we want more of that, and concentrate the substance, eg vitamins, or make them synthetically. Sometimes it does not work, e.g. the early form of talidomide, which caused birth defects, is actually a mirror-molecule of the intended one - like your palms are mirror image of each other. Or the only synthetic form of B5, which gives me rash, topically or internally.
Rather would want to know more about feeding the body right, if it won't cure it may make stronger at least! Hmmm, come to think of it, they do tell us to take lots of vitamin C during flu season?
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  #5  
Old Sat May 29, 2010, 10:24 PM
Marlene Marlene is offline
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Hi Linda,

I do think that what eat, what we breath, what we put on our bodies is important and can influence our heath and gene expression. We've stopped using personal care products that have petro chemicals and synthetic fragrances. We've changed out many of our household cleaning products to safer, more environmentally friendly also. No more chemicals on the lawn. It all adds up over time. Life Extension has an lengthy article on stem cells and the list of nutrients supporting healthy stem cells below is from the article. BTW...those blueberries must be organic since non-organic blueberries rank high when it comes to the number of pesticides found on them.

NUTRACEUTICALS KNOWN TO OPTIMIZE ADULT STEM CELLS
Blueberry
Green tea
Catechin (from green tea)
Carnosine
Vitamin D3
Resveratol (found in red wine)
Omega-3 fatty acids, including docosahexaenoic acid (DHA)

Hormones Known to Optimize Adult Stem Cells
Growth hormone
Estradiol
Testosterone

You can read the article here: http://www.lef.org/magazine/mag2007/...m_cells_01.htm

There's more research out there proving that gene expression is greatly influenced by its environment. Two of my favorite books are "Silent Spring" and "Slow Death by Rubber Duck". They show how pervasive toxins have become in our daily lives.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #6  
Old Sun May 30, 2010, 12:02 PM
Rachel Rachel is offline
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All natural body products

I agree that everything we eat, clean with, and use on our bodies affects our health. Here is a great place to order all natural body products if you are interested! http://chagrinvalleysoapandcraft.com/index.html
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  #7  
Old Mon May 31, 2010, 12:59 AM
Hopeful Hopeful is offline
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Hi Linda,

I understood the point that Dr. Paquette was trying to make. To prove a trend using the scientific method you need a large sample size and controls. This means that the studies must usually be done in the form of a clinical trial, especially given that AA is a rare disease. Unfortunately, with the lack of funds for clinical trials for bone marrow failure diseases, nutritional studies just aren't being done.

I have a healthy dose of skepticism when hearing things like an AA patient of Dr. Weils was cured with pomegranate juice. Who's to say that the person even *had* AA and not just a vitamin deficiency, as Dr. Weils is not a hematologist. Of course, this is not to say that I won't sprinkle pomegranate seeds on my next spinach salad

The National Cancer Institute wrote an article addressing the Gerson diet results. They called the results inconclusive: http://www.cancer.gov/cancertopics/p...essional/page6

I believe sound nutrition is important to our energy and strength and that it may even help slow the progression of a disease. However, I don't think that there is any proof yet that diet alone is a "cure". Of course, this shouldn't stop us from doing our own dietary experiments in combination with more standard medical treatments.

Just my opinion...
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #8  
Old Tue Jun 29, 2010, 02:13 AM
Robi1Knobi Robi1Knobi is offline
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Vegan diet

Have any of you tried to be vegan to help yourselves? I just read "The China Study" and it suggests that if you eat a vegan diet, you can conquer any autoimmune disease, including cancer. I wonder if any of you are doing that, and if its helped? I pretty much cut out dairy in January, and have been trying to be vegan at home, but I wasn't raised that way and its hard! Any suggestions or recipes to share?
Thank you Marlene for all your suggestions, I copied your message and will keep it for my shopping list. I'm already taking Juice Plus supplements (berry blend has reseveratrol), Omega 3 with D3, and also started some Standard Process supplements (organic, but I couldn't find research on it) my accupuncturist is wanting me to try. I've been on Juice Plus for almost 2 years, and it is helping my immune system stay strong and giving me energy to work full time, but it isn't enough. I have just gone to day shift, so hopefully the fact that I'll be sleeping at night will help my immune system even more...they say that's when your human growth hormone is secreted (between 9-5am), so maybe my body can start to heal itself.
Rachel, thanks for the natural product link. I already take Juice Plus www.helpyourselfwithjuiceplus.com, use some Melaleuca home cleaning products, and use non-toxic skin products www.avaandersonnontoxic.com/lindarobicheaux. There's a website I found on ava anderson called www.ewg.org that lists products people use that cause cancer, so you might want to check it out and see if your using any...Time for bed, please keep me posted on things that work for you guys! Ya'll are the best!! Hugs, Linda
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #9  
Old Tue Jun 29, 2010, 07:46 AM
Marlene Marlene is offline
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Whether being vegan is right for you is tough call. Prior to John's illness, we were pretty close to being vegetarian...still ate fish, eggs & dairy, and some meat when we had dinner at friends. In hindsight....it was not the best option for John. Partly because we did not take in enough protein. After his illness, we made sure he had a good quality protein as well as a good fats at every meal. Both of us did better on a higher protein diet. But everyone has different needs and you need to decide what works for you. We know someone who did go 100% vegan and did lots of juicing in the beginning of SAA and reversed the disease naturally. Eventually, she switched back to organic meats to help in the recover process. We used the Metabolic Typing assessment by Wolcott to find out what would work for us.

Regarding Standard Process.....I have to be careful when using them. They are supposed to be the "top of the line" nutrients, but some formulas cause me problems. So pay attention to your body anytime you add in a supplement and try to introduce them one at a time.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #10  
Old Fri Jul 2, 2010, 03:34 PM
Robi1Knobi Robi1Knobi is offline
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Marlene

Hi Marlene, I definately agree that everyone's body is different with different needs and also that being vegan is hard . That's why I can't do it everyday, only when I'm at home..my problem is..I love bacon! Did you guys try to get your protein from beans? Probably didn't want to toot all the time...but I believe they have as much protein as meat (if you can eat them all the time and still be around others, lol). Did ya'll try the "Eat right for your blood type diet"? How did you know you needed protein? I thought that plants had the same amount of protein as meat does, and that the only thing you can't get from plants is B12. Did you or John ever go to True North or the Gerson Institute or anything like that? I read Bruce's story (www.aplasticcentral.com or org) and he said he went to True North, and it helped him appreciate how the toxins in our environment can be harmful. I also watched some youtube videos on the Gerson Institute and am intrigued, but am hoping I can save the money and just do it at home, but then that would require discipline to a vegan diet...hahahaha
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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  #11  
Old Sat Jul 3, 2010, 12:40 PM
lotusbud lotusbud is offline
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Agree with Marlene, everybody is different, and there are different times for people.... Vegan is good, but not for everybody. Protein comes in different forms too, not all is easily digested. Personally, I don't really digest beans, so they would be a poor choice for me. Listen to your body, and cue in what kinds of foods it needs. Sometimes they say cravings are a sign of allergy, though sometimes I "crave" chicken liver... and it is better for the tummy than iron pills.
It is good to be aware of all the things around us. Have you looked in the ingredients list of some ready made foods? Sometimes it reads like a chemistry factory. Nevermind the personal care and cleaning products - full of stuff. Why should I put finely refined petroleum, with some nice color and scent to my face? Be aware of things around to pick the ones that benefit you the most.
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  #12  
Old Mon Jul 5, 2010, 11:51 AM
Marlene Marlene is offline
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I love bacon too!

Hi Linda,

Even though beans are a protein, from what I understand, they are not a complete protein. And not all meat based protein are the same either. Some are more dense and how effectively you process energy at a cellular level, can be tied to the type of protein you eat. I think your body's requirement for the right balance of carbs(vegetables & grains), protein and fat changes depending on your needs and health. When John went through treatment, he lost a lot of muscle and his nutritional status was poor. All of this due to drugs and not being able to eat for about two months. So he had a lot of ground to make up. So we added in more high quality protein and fats into the diet. Then about two years out, we did a metabolic typing based on William Wolcott's book, The metabolic typing diet. He has a self-test int he book to help you figure out your general metabolic pattern. I had huge increase in my energy and stamina.

We never did Gerson and since you are interested in other diets along these lines, you may want to check out the Budwig protocol. If you google it, you get lots of hits.

We are probably at a point right now to re-assess what we eat and modify our diet a bit. It's so easy to get off track without realizing it.

I think you'll find the right balance but it can take a while. But you have an open mind and motivation which helps.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #13  
Old Fri Jul 9, 2010, 01:33 AM
Robi1Knobi Robi1Knobi is offline
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Ya'll are wonderful

Ya'll are wonderful, thank you, let's learn together )
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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