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Alternative Treatment Support

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Category: TNBC Forums
Forum Name: Support Groups
Forum Description: Support Groups
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=4925
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Topic: Alternative Treatment Support
Posted By: Admin
Subject: Alternative Treatment Support
Date Posted: Oct 07 2009 at 1:53pm
Please use this topic for Alternate Treatment



Replies:
Posted By: TexasGal
Date Posted: Oct 07 2009 at 5:58pm
Thanks to Admin for noticing that this forum topic would be a great place for those that choose alternative treatments to have discussion.  This will offer the opportunity for those to speak out  without others that do not agree making them feel as if they are wrong or have made the wrong decision.


Posted By: Nancy
Date Posted: Oct 08 2009 at 7:25am
Dear TexasGal,
 
You are so right, and I have taken the initiative to post on breastcancer.org, and invite the women from there who are dx with TNBC, and have chosen alternative treatments, to join our site also. They are supported on that site and now they will be supported here also. I asked Administration for this forum. I already thanked them.Big%20smile
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Nancy
Date Posted: Oct 09 2009 at 3:56pm
For those women undecided as to radiation after diagnosis, who have been on alternative therapies.
Nancy
 
 
http://search.lef.org/cgi-src-bin/MsmGo.exe?grab_id=0&page_id=2974&query=radiation&hiword=RADIAT%20RADIATE%20RADIATED%20RADIATES%20RADIATING%20RADIATIONI%20RADIATIONNO%20RADIATIONS%20RADIATOR%20RADIATS%20radiation%20 - http://search.lef.org/cgi-src-bin/MsmGo.exe?grab_id=0&page_id=2974&query=radiation&hiword=RADIAT%20RADIATE%20RADIATED%20RADIATES%20RADIATING%20RADIATIONI%20RADIATIONNO%20RADIATIONS%20RADIATOR%20RADIATS%20radiation%20


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Sunris
Date Posted: Oct 09 2009 at 5:20pm
Wow!! Certainly makes you think!! I have actually over time ran across several articles regarding this type of thing. I guess so many are left feeling "damned if I do....damned if I don't" ....

Regardless, I believe that God has a plan for everyone and our days are numbered. His will shall be done when he sees fit regardless of medical options chosen... (oops, I bet I was supposed to take this over to the new "spiritual" thread?)



-------------
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.



Posted By: TexasGal
Date Posted: Oct 09 2009 at 6:17pm
Nancy & Sunris,
 
I looked this man up to see how much credibility he has. Just like many others, I too am skeptical when there is no credibility, however, Here is what I found. From this wikipedia "definition" of him, he seems to have been very accomplished.
 
 

John William Gofman (September 21, 1918 - August 15, 2007) was an American scientist and advocate. He was Professor Emeritus of Molecular and Cell Biology at /wiki/University_of_California_at_Berkeley - University of California at Berkeley . Some of his early work was on the /wiki/Manhattan_Project - Manhattan Project , and he shares patents on the fissionability of /wiki/Uranium-233 - uranium-233 as well as on early processes for separating /wiki/Plutonium - plutonium from fission products. Dr. Gofman later worked in medicine and led the team that discovered and characterized /wiki/Lipoprotein - lipoproteins in the causation of /wiki/Heart_disease - heart disease . In 1963, he established the Biomedical Research Division for the /wiki/Livermore_National_Laboratory - Livermore National Laboratory , where he was on the cutting edge of research into the connection between /wiki/Chromosomal_abnormalities - chromosomal abnormalities and cancer.

Later in life, he took on a role as an advocate warning of /wiki/Nuclear_power_debate - dangers involved with nuclear power . From 1971 onward, he was the Chairman of the /w/index.php?title=Committee_for_Nuclear_Responsibility&action=edit&redlink=1 - Committee for Nuclear Responsibility . He also described himself a libertarian and spoke at several events sponsored by the /wiki/Students_for_a_Libertarian_Society - Students for a Libertarian Society in 1979 and 1980. He was awarded the /wiki/Right_Livelihood_Award - Right Livelihood Award for his work on the effects of the /wiki/Chernobyl_disaster - Chernobyl disaster 's low-level radiation exposure on the population. #cite_note-0 - [1] John Gofman died of heart failure on August 15, 2007 in his home in San Francisco.

 
 


Posted By: gardenbeetle
Date Posted: Oct 10 2009 at 2:45am
Has anyone tried Medical Qi Gong? My accupuncturist has recommended it as apparently it is especially beneficial for those with cancer. It is an old Chinese healing system... there are a few places near me that do classes and sounds interesting. 


Posted By: Nancy
Date Posted: Oct 10 2009 at 7:26am
Dear gardenbeetle,
 
Hi and welcome to the site. I recognize your user name from another site. Wink So glad that you have joined here also. Could you give more detail as  to Medical Qi Gong?
 
If I may make a suggestion, please look through the threads on the TNBC talk forum, as vitamin D3 is being touted in the medical profession as being a cancer fighter, and if you are not taking it, you might want to consider this?
 
If it is not too personal, will you please tell us what you are doing as to alternative treatments?
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: gardenbeetle
Date Posted: Oct 10 2009 at 7:43am
Hi Nancy, I haven't tried medical Qi Gong yet, it is something I am considering as I am looking for a form of exercise I can take up that is as beneficial as possible for my condition. I was considering Tai Chi and Yoga, until I heard about this - I'll post more after I've tried a class!

Re alternative treatments, so far I have done the conventional surgery (lumpectomy) and am in the middle of radiation treatment. I declined chemo for a number of reasons, basically the advertised potential benefit was too small considering the negatives, in my personal situation.

I am therefore researching alternative/complementary approaches to try to prevent my cancer returning (it was early stage 1 - no sign of spread as yet). I've made big changes to my diet, lots of organic veg, green tea etc, started meditation and accupuncture to reduce stress, now I'm looking for suitable forms of exercise as I've heard this is particularly important for those with TNBC. All I do is walking at the moment but I guess it's a start!


Posted By: Nancy
Date Posted: Oct 10 2009 at 8:15am
Dear gardenbeetle,
 
Lori used visual imagery through her treatments, and still does, and she also has a dvd called Body Wisdom, which has helped tremendously. Lori had conventional treatments, but has said that if this beast comes back she will never do chemo again. She experienced what it did to her body.
 
Walking is great, and not only does it help physically, but Lori says it is a stress buster, it clears her mind. Lori runs, hikes or bikes every day and had done so for almost 27 years now. Winter is a bummer here in PA, as it does cut down on the days in the fresh air. Well, I guess that is questionable considering all the toxins in the air!Big%20smile Oh and they have sprayed for the gypsy moths for many years here, and directly in the area where Lori lives.
 
Lori's diet is just like yours, and she also buys only grass fed beef and free range poultry. May I ask what supplements/vitamins you are taking also? Lori takes calcium, D3, Magnesium, Selenium, CoQ10, Omega 3, green tea, and many other teas, and I keep forgetting what elseBig%20smile She has eliminated all sugar/processed foods. It is the glucose which feeds the cancer cells, so anything you can do to reduce that is beneficial. Lori uses agave for her sweetener, and uses spelt flour to bake her bread.
 
I would recommend a book, Anticancer, a New Way of life by David Servan-Schreiber. Lori bought it and then I had to get it. That is what initiated her research as to how cancer grows. This man had brain cancer twice and has beaten it. He did have chemo, but then began researching for foods and supplements which would help.
 
She is also on biodentical hormone replacement therapy since June, and is feeling sooo great.
 
So good to meet you and my granddaughter is a lover of all insects also! She collected and fed them when she was a little girl.Smile
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: gardenbeetle
Date Posted: Oct 10 2009 at 10:18am
Hi again Nancy, thanks for all the info. I am very afraid of chemo. I watched my Dad suffer through it before he died of lung cancer. Seemed to just prolong the pain - I remember him begging my mum for a gun. I would risk it if the success rate was higher, e.g. if I had leukemia, but unfortunately for breast cancer it seems it's just not that effective.

Re supplements, I only take a multivitamin, selenium and spirulina at the moment, but not every day. I am looking for a nutritionist in my area before I splash out on anything else, as I'm not sure of the ideal quantities and don't want to overdose - especially not while still having radiotherapy. But I figured I couldn't go wrong with an organic, plant-based diet - and green tea was recommended by even my conventional docs (including a top breast surgeon) as well as just about everywhere else!

I have read David Servan-Schreiber's book, it was so inspiring, I've been posting links to it on every forum thread I've used! I'm now reading his 'Healing without Freud or Prozac' which is also really interesting. I also read  about visualisation, which I try to do sometimes!

Insects always fascinated me, so tiny yet so complex and beautiful.

Hope you and Lori are doing well,
GB


Posted By: TexasGal
Date Posted: Oct 10 2009 at 12:51pm
gardenbeetle,
 
I too recognize you from another site .   Glad you are able to join us Smile
 
This category is new for us here on TNBC site which is why we always had to go to the "other" site to post freely.   Many that do'nt choose alternative tx have much discrepancy as to what we are doing.  I agree with you on the chemothreapy issue.  If you find any great options for health/vitamins/etc please clue us in?
 
Again, welcome! 
 
 


Posted By: Nancy
Date Posted: Oct 10 2009 at 1:50pm
gardenbeetle,
 
I hear what you are saying as to your Dad. My friend Bev watched both her parents be dx with cancer, both aunts, a child 12 years old of the one aunt, and they all had chemo and she took care of everyone of them, and she says over and over that it was the chemo that killed them, not the cancer. That is why she refused chemo.
 
Bev had a double mastectomy, no reconstruction,  but no other treatment. She has the same diet as you and Lori now, and is doing everything in her power to prevent this monster from returning, just as all those taking chemo. She is quite knowledgeable as to supplements/vitamins/teas and much more.
 
Oh, and this spring and summer Bev put up a greenhouse, grew all her flowers and veggies, planted them, took down the greenhouse, built a beautiful patio and pond, and walkway, (lifting stones weighing 60 pounds), painted her kitchen cupboards, raised 10 Rhode Island Reds from baby chicks, built a coop for them, took care of her 2 horses, and a pony, and gardenbeetle, there were days when I was tired just listening to her tell me what she had done that day.LOL She is now getting about 12 eggs every two days, and they are her eggs, organic eggs.
 
You are wise to seek a nutritionist as then you will be getting everything you need to maintain your health.  Just be cautious as Lori went to one here, not even a week after she was dx, and the woman did not really help her, and Lori spent over a thousand dollars. Lori was terrified out of her mind, did not want to take chemo, and I believe this woman took full advantage of her.
 
Our grandson was dx with leukemia at age 3, in 1991, and he is now 21 and at the Art Institute in Pittsburgh, and is doing well. I have read numerous articles as to chemo and the success rate for leukemia and I believe another type of cancer, and my grandson is living proof of that. Success rates with chemo are high with a dx of leukemia.
 
Odd though, he had the same chemo drugs as the women dx with bc, and of course TNBC.
 
Servan-Shreiber was the inspiration and starting point for Lori to find ways to heal her body after chemo. Lori teaches second grade but is a nurse. She has not practiced for years, but the nurse in her kicked in after all her treatments, and she was determined to go back to her nursing education, and research exactly how the body functions.
 
I will now have to get his book 'Healing without Freud or Prozac'. Many of the women here have read his anticancer book and are following the diet, and some while taking chemo. They did quite well, and had less problems.
 
I am so glad you have joined us, and I hope that others from the other site will follow. We don't want to "steal you away", we just want your friendship and support here also. I would imagine there are literally thousands of women refusing treatments, and they have no place to turn for support.
 
Ok...long winded as usual...Big%20smile..you will get used to itLOL
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 11 2009 at 8:25am
I am new to this forum and newly diagnosed with stage 2 possibly 3 after 1 more biopsy. 

I am currently on high Vit C, D3, Selenium, Magnesium, Kyolic Garlic, weekly intravenous multi vitamin mineral support, homeopathic and herbal remedies, bioidentical support and seeking other options.

I have yet to start any chemo, radiation or surgery.


Posted By: Nancy
Date Posted: Oct 11 2009 at 9:41am
Dear maryjahn,
 
Welcome, and it looks as though you are doing much more than most women just newly diagnosed. What led you to these types of support...the weekly intravenous, and the rest?
 
May I ask exactly what biodentical support you are receiving? My daughter Lori who was dx in June of 2007, did have chemo and rads, and a mastectomy, but now is taking biodentical hormone replacement therapy. She goes to an antiaging specialist in Pittsburgh, and has also done extensive research on this field of medicine. The chemo really affected her immune system, and hormone levels, and she just wanted her life back.  
 
I am not the one dx with breast cancer, and I will not try to sway your decision on any treatments. I will tell you that you should gather all the information that you can before making any decisions. This is your body...your life.
 
I know women who have refused all treatments with the exception of surgery and are doing well, and then there are those who have done chemo and rads and are also doing well. It is a very difficult decision, and you have to be at peace with yourself when you make these decisions.
 
Here on the site you will find a ton of information as to TNBC and all the chemo treatments/regimens that other women are taking. Please take a look at all that is available.
 
On the breastcancer.org site there are women refusing treatments, and one is 22 years out, but did have a recurrence, and still refused chemo. Others are just beginning this journey and are refusing chemo.
 
I asked for this Alternative treatment forum so that women could speak with others who are undecided, or who have refused treatments, without feeling intimidated, and still have the opportunity to speak with those who have chosen conventional treatments.
 
Here on the site we have Rena, who is 22 years out and took chemo every week for a year, and Flutist, who I think is 18 years out and took chemo every week for a year also. There is another woman who is 16 years out, but I cannot remember her name. They are doing well also.
 
JuneLee is 4 years out from dx and her onc told her she did not have to take chemo, and sparrow refused chemo and is doing well, but I cannot remember when she was dx. Sara..user name outnumbered was told she did not have to take chemo, but became very concerned when she read that almost all the other TNBC women had treatments, and consulted with more doctors and still was told no. Sara did have surgery a second time to remove her nipples per the doctors recommendation.
 
You do have time to make your decision, and it does not have to be tomorrow or even a week from now. No matter what your decision...surgery or no surgery..chemo or no chemo...rads or no rads, I will support you and so will others. If you want links for articles as to conventional or alternative treatments please just let me know.
 
Many hugs, and my heart goes out to you,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 13 2009 at 4:21pm
I have always done some sort of alternative treatment.  I was referred to an integrative dr by a friend who's specialty is bioidenticals, thyroid, adrenals and cancer.  I was  wiped out, barely functioning, had no insurance and didn't know what was wrong with me.
 
I started with my dr in May.  He immediately diagnosed me with adrenal exhaustion and strated treating me.  His treatments were helping but I knew something else was wrong.  6 wks ago had blood test which came back clear and an ultrasound on my  thyroid--I was in a car accident 3 1/2 yrs ago with sever injuries to my neck.  The day of my ultrasound for my neck (nodes, no cancer)I discovered a lump in my breast.  The day of the biopsy I found another lump in the same breast.
 
My dr is interviewed in Suzzane Summer's new book and he emailed me a copy of this interview which gave a list of how he approaches cancer and the treatments he recommends.  I started the intravenous right away.  I also followed the breastcancerchoices.org site using the Iodoral and the other supplements.
 
I have just added Wobenzymes 5 tablets 3 x day on an empty stomach.
 
I am having surgery.  My doctor said if my lymph nodes are cancer free I won't need chemo.  If they aren't, then he is going to do another intravenous treatment to counter the chemo's effects (mistleto from germany) plus colon cleanse.
 
Trying to do many other things:  lots of asparagus for interferon, vegan diet, Olefra 21 day detox,  a friend recommends a complete body detox, epsom salt & baking soda baths and coffee enemas.  Just trying to build up my strength.


Posted By: Nancy
Date Posted: Oct 13 2009 at 5:25pm
Dear maryjahn,
 
I have read The Sexy Years,  Ageless and Breakthrough books, and both Lori and I were very impressed with the interviews with all the doctors. When Lori was tested, which was before she got the biodenticals, her antiaging doctor in Pittsburgh said that her DHEA and Cortisol levels were the highest they had seen in over 3000 patients. She was headed for adrenal burnout. Her immune system was compromised, and she too was wiped out.
 
Of course she had been through a screwed up lumpectomy, a mastectomy, 6 chemo treatments of ACT and 28 rads and reconstruction. She and I both look back to even before she was dx, and know that her stress level was through the roof.
 
After reading on the immune system and hormones, I have learned that just what you said was happening to you, can lead to cancer and many other diseases. May I ask how you are feeling now? I think it is great that you are going to have the Iscador even if you do have chemo, and in Germany they give Iscador after the chemo. My daughter Lori was suggesting that a friend of mine see if she can get the Iscador, as she stopped all treatments.
 
So, this doctor you are seeing now is willing to work with you even though you may need chemo? Or is this the doctor who will be caring for you no matter which treatments you decide on?
 
Ronda, a member from here on the site did a colon cleanse and I believe something else before she had chemo, and then after chemo to detoxify. My friend Bev has done them , and she says that when people take antibiotics they should then take probiotics to get the system back to normal. I read that in the books by Somers also.
 
I would love to know your doctor's name, so that I can look it up in the book. I think the other bc site you mentioned is one a member sent to me.
 
It is quite apparent that you know much about alternative treatments, and are using them to your advantage. This is what Ronda did when she was dx. She also took D3, and many many supplements all through her treatments. The oncologists tell all the women that they cannot take anything for it may interfere with the chemo. Ronda said that you just don't take it the day before, day of and for 2 days after chemo. Sounds about right to me considering that the chemo/chemicals are out of you body within 48-72 hours.
 
Thank you very much maryjahn, for taking the time to reply to me. It is fascinating and just wonderful to learn of so many different treatments. Oh...do you have a thyroid problem also? Lori does and is on a biodentical for that also.
 
Please keep posting.. Wink
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 13 2009 at 8:20pm
Dr. Galitzer in Santa Monica will work with me no matter what I decide but I trust his judgement, and if he says I don't need chemo, then I won' t have it--same for radiation.  He also sent me to his friend an oncologist who is more open to integrative healing.
 
You just have to request Iscador from your doctor and it can be ordered.
 
There is a new Suzzanne Sommers book on cancer coming out next Tues and she will be on Larry King live with a panel of dr's on th 19th I believe.  She's taking on the whole medical bureauocracy.  I read 7 chapters at the drs office today.


Posted By: Nancy
Date Posted: Oct 13 2009 at 8:38pm
Dear maryjahn,
 
Here I am at 1:23 am on the East coast, and looking at the Breakthrough book. I did not get to your doctor's interview yet. It is on page 319Big%20smile There is an onc who is open to integrative healing? There are not too many and you know that!! As I said, they will not even approve supplements/vitamins...nothing.
 
So, this friend of mine can just order the Iscador from a doctor practicing in conventional medicine? It doesn't have to be an antiaging specialist like Lori goes to?
 
What is the new book by Somers? I didn't hear about it. Fantastic mary.!!! And she's taking on the whole medical bureauocracy? I will have to look online for the name of the book. If these doctors in conventional medicine don't soon wake up and start treating the patient...the person, they will see many just leave and find an antiaging specialist who will treat them, and get to the root of their problems. My daughter Lori finally has her life back, and it is due to biodentical hormone replacement therapy.
 
Thank you my dear! I just Googled and cannot find a new book by her. Unhappy
What is the name?
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: unklez
Date Posted: Oct 15 2009 at 5:46pm
Has anyone heard of, researched and/or tried any Chi Massagers? Are they really helpful? Any comments - good bad or ugly - would be useful.



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 15 2009 at 5:49pm
Wheat grass anyone? From the little I have read, fresh wheat grass juice seems like a good idea for cancer patients and survivors but I don't think I'd be able to grow it at home.

Are wheat grass juice powders that are sold in vitamminshoppe any good? Can one start having it while on chemo?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Nancy
Date Posted: Oct 15 2009 at 5:59pm
Actually Unklez,
 
My friend Bev is growing her own and harvesting it in 7 days. It is grown in simple trays and is very easy to grow. She is not taking chemo or any treatments. If I can find anything on it I will post it here.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 16 2009 at 6:46am
I imagine any type of healing massage would be helpful, though I am not familiar with this.
 
Have you heard of EFT emotional freedom training.  You can find it for free on line.  It's a self accupressure technique designed to release old emotions--very important to the healing process.  If you don't mind powerful healing that commes with a lot of crying, this has been incredibly freeing to me.  Being newly diagnosed, it has given me some incredible healing.
 
Best,
Mary


Posted By: Sunris
Date Posted: Oct 16 2009 at 5:02pm
Speaking of massagers....hmmm, perhaps I'll go have a massage tomorrow!! Oh, and lets not forget the pedicure that I have been waiting for 8 months to get!! Onc. finally gave me the "ok" to get one. Yay!!

Ok...while I'm mentioning random things...my lumpectomy boob has kinda been stinging? today....Perhaps it's normal post surgery?

Oooppss, sorry...just realized I was on the alternative thread! Oh well, pedicure and massage is alternative tx for me as it will help my soul     

-------------
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.



Posted By: krisa
Date Posted: Oct 17 2009 at 4:16pm
has anyone come across information on statin drugs interfering with vitamin d ?


Posted By: Nancy
Date Posted: Oct 17 2009 at 4:47pm
Krisa,
 
Why do you ask this? Have your D levels dropped, or are you having difficulty getting them to the optimum levels? Are you on Lipitor..which one?
Nancy
 
Krisa, take a look at this article.
 
http://www.cholesterol-and-health.com/Vitamin-D.html - http://www.cholesterol-and-health.com/Vitamin-D.html


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: sibu
Date Posted: Oct 17 2009 at 6:14pm
I for one am thrilled to see this new thread, and the new people who have joined it!

I want to hear much more on several of these topics.

Does it seem like there are 23 different topics going on within this one thread, though?

Tried to start a new topic but it gave me an "access denied" message.






-------------
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07


Posted By: unklez
Date Posted: Oct 17 2009 at 6:17pm
Dear Donna,

I second the idea that we should have a FORUM for this and create separate topics in that forum. This thread is a mixed bag now.


-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Nancy
Date Posted: Oct 17 2009 at 6:36pm

To all,

Tell me exactly what you want and I will ask admin for it.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: krisa
Date Posted: Oct 17 2009 at 7:00pm
nancy,
about 5 weeks ago, i started taking a statin drug-again.  ( before my cancer diagnosis, i was taking 10mg of a statin drug and quit when i had chemo, surgery etc to deal with.) 
in july, my d3 level was 46.  october it is 4.  is this an error with the test?  something seriously wrong with me?, or could it be the statin drug?. 
i see my oncologist in two weeks..i stopped taking my statin drug.


Posted By: unklez
Date Posted: Oct 17 2009 at 7:48pm
Dear Nancy,
Could you have the admin create a new forum for complimentary and alternative therapies?

Love,



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Nancy
Date Posted: Oct 17 2009 at 8:05pm
Krisa,
 
I don't know what to tell you, but have you actually seen your D level test? Where was it done? When did you have your D levels done? Was it  the 25-hydroxy test? Quest was giving incorrect results remember, and we talked about that? I don't know if they have that resolved or not. You could ask to be retested, and my GYN said you do not have to go off the D3 to have the test. Also, how much D3 were/are you taking?
 
From what that article said which I just posted,  (the cholesterol and the D3), are related. Also, low D levels are associated with a compromised immune system from everything that I have read. My tests are done at Mayo Clinic, and when the nurse called to give me the results, all she said was that they were normal. I said no, I want to know what they are. My D3 is 66, and the D2 is 4.0. I got mine from 57 to 66 by taking 2800 IU's daily.  However Krisa, I was not dx with cancer, and did not have surgery, chemo and rads.
 
Are you taking the Calcium and Magnesium because you have to take Magnesium in order for the D3 to be absorbed. Lori's D levels were 77 last fall, and when she went for the testing the end of May, for the BHRT, they were 44. She was in disbelief, as then she was taking about 5000 IU's plus cod liver oil. She started taking the BHRT the first of June, cut back on the D3, and the cod liver oil, and now they are 82.6. Of course she knows that is because her hormones are now in balance. The range is 32-100 and you should be where Lori is for optimal health...everyone should.
 
Krisa, I would not worry, but, you can ask your onc if he will give you a script for the D3 at 50,000 IU's. Many of the women here on the site have taken that for a while, just to get their levels where they need to be.
 
You might want to consider seeing an antiaging doctor who is willing to work with a breast cancer patient. Donna is on BHRT, and more and more are looking to this field of medicine to get back to a normal life after all your bodies have endured.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 17 2009 at 8:15pm

Vitamin D Deficiency: Do Cholesterol-Lowering Statin Drugs Inhibit Vitamin D Synthesis?

Researchers know that vitamin D synthesis declines with age -- and so does the concentration of 7-dehydrocholesterol in the skin. Without 7-dehydrocholesterol in the skin, sunlight has nothing to turn into vitamin D. The researchers consider it likely, then, that the decreased synthesis of 7-dehydrocholesterol is responsible for the decreased synthesis of vitamin D that comes with age. http://www.cholesterol-and-health.com/Vitamin-D.html#2 - 2

It follows then, that the cholesterol-lowering drugs known as statins, or HMG CoA reductase-inhibitors, which inhibit the synthesis of 7-dehydrocholesterol, also inhibit the synthesis of vitamin D.

(View our flow chart of the cholesterol synthesis pathway http://www.cholesterol-and-health.com/Synthesis-Of-Cholesterol.html - here. )

As of May 25, 2006, there are no studies indexed for Medline that tested the effect of statins on vitamin D levels for longer than three months, and only one, single study out of three that tested the effect of statins on vitamin D levels for longer than one month -- conducted a whopping fifteen years ago. The small handful of short-term studies found no effect. http://www.cholesterol-and-health.com/Vitamin-D.html#13 - 13

By contrast, researchers who showed that statins induce dramatic deficiencies of http://www.cholesterol-and-health.com/Coenzyme-Q10.html - coenzyme Q10 in humans first retested coenzyme Q10 levels after six months of administering the statin. They further found that coenzyme Q10 levels kept decreasing over time for over 18 months before settling. http://www.cholesterol-and-health.com/Vitamin-D.html#14 - 14

We would expect statins to take even longer to cause a drop in vitamin D levels, because, whereas coenzyme Q10 is measured directly in the blood, the 7-dehydrocholesterol takes time to migrate to the surface of the skin and accumulate there. So what is the effect of statins on vitamin D levels one year down the road? Two years? Five? Ten?

The truth is we have no idea, because no one has bothered to study it.




Posted By: Nancy
Date Posted: Oct 17 2009 at 8:16pm
Unklez,
 
Will do.
Nancy
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 17 2009 at 8:20pm
Nancy you are always such a great source of information.  Bless you!
 
My doctor said that if you have breast cancer you want your levels to be in the 90's!  (Mine are also in the 60 range)--My cholesterol was high when I had my blood tested but he has me supplementing 6,000 to 10,000 mg per day..
 
Mary


Posted By: Nancy
Date Posted: Oct 17 2009 at 8:46pm
Dear Mary,
 
Ok...last post and then to bed. Yes Mary, but your doctor thinks outside the box! Wink Most think that if one's levels are 32 that is within the normal ranges, and it is far from it. In one of the vitamin D council newsleters it states that if a woman's D levels are low they have a 222 % chance of being dx with breast cancer. I still have not found the source for that statement. I did find the one where it states that if you do not get them to a high range a woman will have a recurrence. Yet most of the doctors never even test D levels.
 
Did you read in the Anticancer book that "the drug Lipitor is the pharmaceutical industry's biggest money maker. At its sales peak, it brought in a million dollars an hour, 365 days a year (nine billion dollars a year)"? And people say Suzanne Somers is making money by writing books? Good for her!!
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Nancy
Date Posted: Oct 18 2009 at 5:28pm
Mary,
 
This is the article/vitamin D council newsletter to which I was referring, and the other link is one that Dawn posted on the TNBC talk forum.
Nancy
 
http://www.vitamindcouncil.org/research.shtml - http://www.vitamindcouncil.org/research.shtml
 
 
 
mhtml:%7bE77B2F5E-9277-4B35-AB0D-6D6257954AE9%7dmid://00000098/!x-usc:http://www.sciencedaily.com/releases/2007/11/071123211703.htm - http://www.sciencedaily.com/releases/2007/11/071123211703.htm
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: 123Donna
Date Posted: Oct 19 2009 at 3:52am
Nancy,

I waited until 2 weeks after finishing chemo in Sept and took the D3 test.  Also had DH take the test with me.  We just got our results back this weekend.  Mine was only 19 and DH was 35.  I was pretty shocked at how low my D3 level tested.  I've started the D3 supplements about 2,000 D3 a day, but the bottle said to seek advice of doctor if having surgery.  I'm scheduled for recon surgery in 2 weeks and ps assistant said to stop taking it before surgery because of warning on bottle and they worry about medicines, supplements that could cause bleeding or something else and effect surgery.  Have you heard anything like this?  I've stopped the D3 for a while until after surgery. 

Donna




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Nancy
Date Posted: Oct 19 2009 at 6:55am
Donna,
 
I posted 2 links for you in the talk forum, and tomorrow I will ask my friend whose GYN is also a surgical oncologist in Pittsburgh, and operated on her several months ago. Her GYN is very knowledgeable on D3/all vitamins/supplements, and had my friend on 50,000 IU's of D3 for quite a while before her surgery, as her levels were only 26 after being on 2000 IU's for 5 months. I quickly looked through the vitamin D council newsletters also, but could not find anything at this time.
Nancy
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 19 2009 at 8:32am
Nancy,
 
Thank you for that link on vit d--I go for another blood test needed to check my creatinine levels before having a CT scan.  Do you have any info on this?
 
Thanks again for all of your support.
Mary


Posted By: maryjahn
Date Posted: Oct 19 2009 at 9:42am
Hi Donna,
 
I hope this info isn't redundant--I stumbled upon this article looking for something else:
 

Vitamin A and http://search.lef.org/newshop/cgi-shop/searchItems.cgi?catalog_number=00251 - vitamin D3 inhibit breast cancer cell division and can induce cancer cells to differentiate into mature, non-cancer cells. Vitamin D3 works synergistically with tamoxifen to inhibit breast cancer cell proliferation. Breast cancer patients should take 4,000 to 6,000 IU of vitamin D3 every day on an empty stomach. Water-soluble vitamin A can be taken in doses of 100,000 IU to 300,000 IU every day. Monthly blood tests are needed to make sure toxicity does not occur in response to these relatively high daily doses of vitamin A and vitamin D3. After six months, the doses of vitamin D3 and vitamin A can be reduced.

In one study, http://search.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptvitamine - vitamin E succinate, a derivative of fat-soluble vitamin E, inhibited growth and induced apoptic cell death in estrogen receptor-negative human breast cancer cell lines. The study concluded that vitamin E succinate may be of clinical use in the treatment of aggressive human breast cancers, particularly those that are resistant to anti-estrogen therapy.

Estrogen receptor-negative breast cancer patients should consider taking 1,200 IU of vitamin E succinate a day.

Soy extracts have become very popular in the last few years as an adjuvant (assisting) cancer therapy. However, there are some cancer patients who should not use soy, or who are less likely to benefit from soy.

Cancer patients undergoing radiation therapy should not take soy supplements one week before, during, and one week after being treated. Soy inhibits protein kinase C activity in cancer cells. Since cancer cells use protein kinase C for energy production, inhibiting this enzyme is usually desirable. Radiation therapy, on the other hand, depends on protein kinase C to help generate free radicals that kill cancer cells. It's possible, therefore, that large amounts of genistein in cancer cells could protect them against radiation-induced free-radical-mediated destruction.

In studies, genistein has shown anti-angiogenesis effects. Angiogenesis (new blood vessel growth) is a key step in tumor growth, invasion and metastasis. To date, a number of anti-angiogenic agents have been identified. In animal models, treatment with angiogenesis inhibitors has proven anti-tumor effects. Early clinical experience with angiogenic inhibitors indicates that optimal anti-angiogenic therapy will likely be based on the long-term administration of genistein to cancer patients as an adjunct to surgery and conventional chemotherapy. http://search.lef.org/shop/jan-cover98.html - Genistein is one of the more potent nutritional anti-angiogenesis agents.



Posted By: maryjahn
Date Posted: Oct 19 2009 at 11:06am
That's wonderful Nancy--thank you!


Posted By: 123Donna
Date Posted: Oct 19 2009 at 1:37pm
Nancy,

Thanks for the links on the talk forum and asking your friend about D3 and surgery.  I was pretty disapointed to be told not to take it and having my levels at only 19Cry.  Do you think the ZRT in-home tests are as accurate as the blood tests the doctor's office performs?  Just wondering. . . 

Mary,

I ready your posts.  Can you tell me what is genistein?  Not sure if I've heard of it.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Nancy
Date Posted: Oct 19 2009 at 5:48pm
Donna,
 
I just got off the phone with my friend. She said that her surgeon told her to go off everything 3 days before her surgery. I forgot to ask when she went back on themEmbarrassed She is my water aerobics instructor, and she called me to ask if I would give the class tomorrow. Her grandchildren are ill. I will call her again tomorrow. I promise.Wink
 
From what the vitamin D council newsletters state...their test kits are very reliable. My blood work was sent to Mayo Clinic, and I had it drawn at the hospital here. I am sure you can start taking it after your surgery. A week or so could not make that much difference Donna. 
 
Lori went to her GYN today (also mine and 2 other daughter's and 3 granddaughters), and she was so pleased to hear that Lori was on the biodentical hormones. The only point on which she disagreed with Suzanne Somers, was on the rythmic versus the static dose. I was truly surprised at her reaction, as the Dr. is at a very rural hospital, town of about 2500.
 
They are really pushing the D3, and she said that Lori's levels of 82.6 are great and it would be fine even in the 90's. Finally...!! The natural news sites have been stating that for well over 2 years now. Conventional medicine is finally catching up!!
 
Lori feels /knows that her D levels were down before because her hormones were not balanced.
 
ok...hopefully Mary will reply to you.
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 19 2009 at 9:28pm
Phytochemical:
Genistein

Synonyms: 5, 7-dihydroxy-3- (4-hydroxyphenyl)-4H-1-benzopyran-4-one, 4', 5, 7-trihydroxyisoflavone

Properties: Genistein has http://www.phytochemicals.info/abstracts/genistein.php - may health benefits and works on several fronts: it acts as a phytoestrogens, antioxidant, anti-cancer agent and it could help people with http://www.phytochemicals.info/research/astragalus.php - metabolic syndrome .

Estrogenic effect

The estrogenic activity of genistein has been confirmed in many studies. Of all the isoflavones, genistein has the strongest estrogenic activity. The estrogenic effect of genistein may explain its protective action against osteoporosis and its possible effect on http://www.phytochemicals.info/research/genistein-body-weight.php - body weight reductions . Genistein is also used to ease menopause symptoms, such as hot flushes.

Antioxidant

Genistein is a strong antioxidant. Genistein removes damaging free radicals and reduces lipid peroxidation. Only oxidized LDL cholesterol is absorbed by the arterial cells and prevention of the oxidation of LDL cholesterol will reduce the risk for arteriosclerosis. Gensistein prevents the formation of hearth attacks and strokes by acting as anticlotting agent. Genistein increases the activity of other antioxidant enzymes such as glutathione peroxidase, superoxide dismutase and glutathione reductase. Studies have shown that genistein can also influence the growth of cells which are not hormone-dependent. Genistein seems to inhibit the activity of tyrosine kinase, which plays an important role in cell growth. Reduction of tyrosine activity will result in a reduced cancer risk.

Anticancer

Genistein seems to reduce the risk for some hormone related cancers, principally breast cancer and prostate cancer. Epidemiological studies show that consumption of isoflavones may protect against breast and prostate cancer. High dietary intake of soy products China and Japan are linked with low incidence of these cancers. There are lots of theories to explain the anti-cancer action of genistein: inhibition of angiogenesis, inhibition of tyrosine kinases, antioxidant property, and anti-estrogen action (it is known that estrogen increases risk for certain cancers). Genistein binds with estrogen receptors, preventing the estrogen from binding and initiating cancer growth.

Facts about Genistein: The main source of genistein is the glucoside genistin. Before genistein can act it first needs to be released from genistin. This normally happens in the stomach (acid hydrolysis) and intestine (action of bacterial enzymes). Some genistein supplements contain genistein which has been hydrolysed in a chemical process.

Description: Genistein is an isoflavone belonging to the group of flavonoids. Because of this similarity of the structure of genistein to that of estrogen genistein is also a phytoestrogens, together with daidzein. Genistein is the aglycone (without sugar component) of the glycoside genistin.

Distribution: The main source of genistein are soybeans. Other legumes, such as chickpeas, contain small amounts of genistein.



Posted By: Nancy
Date Posted: Oct 21 2009 at 8:21am
Mary,
 
In a search for BHRT, I found links for this one antiaging specialist in CA. In Lori's path report she tested 95% for the p53 gene mutation, and 85% for the k1-67so these links were of special interest to her also.
Nancy
 
- http://www.cbs.com/cbs_cares/topics/?sec=60
 
- http://www.oprah.com/article/oprahshow/20090115_druzzi_intro
 
mhtml:%7bE77B2F5E-9277-4B35-AB0D-6D6257954AE9%7dmid://00000129/!x-usc:http://www.uzzireissmd.com/ - http://www.uzzireissmd.com/
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: 123Donna
Date Posted: Oct 21 2009 at 2:07pm
Nancy and Mary,

Thanks for all the information.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Nancy
Date Posted: Oct 21 2009 at 2:27pm
Donna,
 
I found this article in the one link which I posted as to Genistein.
Nancy
 
http://www.uzzireissmd.com/importantinfo_01012008.html - http://www.uzzireissmd.com/importantinfo_01012008.html


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Nancy
Date Posted: Oct 26 2009 at 9:05pm
Donna,
 
I have this link for you and it is from LifeExtension magazine. A list of immune-boosting nutrients and drugs to take before surgery, and also a list of those that you should not take 2 weeks before surgery and not resume taking until 2 weeks after surgery. I realize that you are having reconstructive surgery, but it is still surgery.
Nancy
 
 
 
http://www.lef.org/featured-articles/Cancer-Surgery-Special-Report.htm - http://www.lef.org/featured-articles/Cancer-Surgery-Special-Report.htm


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: 123Donna
Date Posted: Oct 26 2009 at 10:05pm
Thanks Nancy.  I printed out the report and have to say that I haven't heard of most of these supplements.  I sure have a lot to learn.

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Nancy
Date Posted: Oct 26 2009 at 11:14pm
Dear Donna,
 
The reason that you have not heard of them, is because most doctors do not know about them. I got this link from Suzanne Somer's new book Knockout. Bill Faloon is the director and cofounder of the LIfe Extension Foundation. To quote the book..."His investigations have enabled people to access medical information not available elsewhere through the data base supplied by the Life Extension advisory board". We all have much to learn, but only if we explore all options available. This new book really opened Lori's eyes even further. She knows now that what she has pursued as to nutrition, vitamins/supplements, and most the most important addition, the biodentical hormones is what she had to do. She took control.
Nancy 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: MsBliss
Date Posted: Oct 27 2009 at 3:55am
Vitamin D on an empty stomach?  Not with food?  Are you sure?


Posted By: dmwolf
Date Posted: Oct 27 2009 at 10:17am
I know Suzanne Sommers was good as Chrissy on Three's Company, but is that really credential enough to believe everything in her book?  ;)

-d (ducking)


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: krisa
Date Posted: Oct 27 2009 at 11:27am
I saw a headline that said Suzanne had been diagnosed by six different doctors,  who told her last November, that cancer was throughout her body.  According to her, they were all wrong.  no further explanation in the article as to why these doctors gave her this false diagnosis.


Posted By: unklez
Date Posted: Oct 27 2009 at 11:33am
I don't mean to scare anyone but cancer is throughout EVERYONE's body. The healthy cells and immune system keeps the cancer in check. That's all. so Suzanne Sommers was not lying......



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Nancy
Date Posted: Oct 27 2009 at 12:28pm
MsBliss,
 
Article on D3.
Nancy
 
http://www.ehow.com/way_5132191_time-vitamin-d.html - http://www.ehow.com/way_5132191_time-vitamin-d.html
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Nancy
Date Posted: Oct 27 2009 at 1:05pm
Dear Krisa and Denise,
 
Yes Suzanne was misdiagnosed, and her account of this is in the book Knockout. This is the Alternative Treatment support thread, and hopefully soon to be a forum, where we can start new topics, instead of just one continuous thread. A forum where those choosing treatments other than conventional treatments can discuss their options freely, while still supporting women like my daughter Lori and many others, who did choose a mastectomy, chemo, and rads, and are now choosing alternative treatments as opposed to conventional medicine, to help restore their health.
 
Suzanne Somers wrote the book, but there are many many interviews with doctors in the field of alternative medicine, traditional medicine, oncologists, scientists, laypersons, and antiaging specialists.
Nancy
 
 
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: mainsailset
Date Posted: Oct 27 2009 at 3:02pm
In what I've read over at the VitD Council and elsewhere the D3 is fat soluable and should be taken with meals. The link you're referring to Nancy is specific to Catracal only, not the D but when you go to this link   http://www.citracal.com/Product/Plus_Heart_Health.aspx - http://www.citracal.com/Product/Plus_Heart_Health.aspx
The Citracal w/D they specify should be taken with meals. I believe that the confusion develops on which kind of calcium you are taking. The back of my bottle says to take the gel caps "At Mealtime"
 


-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: 123Donna
Date Posted: Oct 27 2009 at 6:34pm
My D3 bottle says to take with a meal.  The Citracel Calcium Citrate with Vitamin D bottle says absorbed with or without food.  I take them with my meals.

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: unklez
Date Posted: Oct 27 2009 at 6:43pm
My personal view is that one should strive to get all vitamins, enzymes, minerals etc directly from their natural sources. Failing that, the supplements should be taken with the meals.....



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:36pm
This is wonderful.....Thank you!!!


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:37pm
Dear Nancy,

Ten Thousand thank you's for this new place to post and discuss!


Posted By: unklez
Date Posted: Oct 27 2009 at 7:41pm
What does everyone think about CoEnzyme Q10 for keeping the heart safe during Adriamycin?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:41pm
I now receive this magazine....love LEF....But I can't find a link to a radiation article.




Posted By: unklez
Date Posted: Oct 27 2009 at 7:41pm
What does everyone think about Glutamine for reducing neuropathy during Taxanes?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 27 2009 at 7:41pm
What does everyone think about Graviola?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:44pm
MaryJahn, do you know the approx size or nature of the tumors?  Do you know if you will have lumpectomy or are you going to wait/see?


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:46pm
Nancy, you are awesome.....thank you for the link.


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:52pm
Graviola looks interesting and promising.   BUT, there is some concern that it could cause a Parkinsons type of disease.  Check out the Sloan Kettering index here:
http://www.mskcc.org/mskcc/html/69245.cfm

This index is good for looking up various supplements, and it is not dismissive.  It gives honest reviews on things that are promising, but out of the mainstream.  Very rare.


Posted By: Nancy
Date Posted: Oct 27 2009 at 7:53pm
Dear MsBliss,
 
All I did was ask administration, and they provided it. Anyone can do this. The TNBC Foundation site belongs to  each and every member. The will also make both the Alternative and Complimentary medicine a forum, where new topics can be posted. However,  that may take a while considering all they have had to restore in this past week.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:53pm
A big yes on that.....it will also help your intestinal lining.  But don't overdo it because it will cause a little extra ammonia type metabolites.


Posted By: MsBliss
Date Posted: Oct 27 2009 at 7:54pm
YES!  Unkle, YES!  No toxic upper range on this one.


Posted By: Nancy
Date Posted: Oct 27 2009 at 8:01pm
MsBliss,
 
From Life Extension.
Nancy
 
http://www.lef.org/protocols/cancer/radiation_therapy_01.htm - http://www.lef.org/protocols/cancer/radiation_therapy_01.htm


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Nancy
Date Posted: Oct 27 2009 at 8:03pm
MsBliss,
 
Your link.
Nancy
 
http://www.mskcc.org/mskcc/html/69245.cfm - http://www.mskcc.org/mskcc/html/69245.cfm

 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: MsBliss
Date Posted: Oct 27 2009 at 8:10pm
Good point, but she is just interviewing and asking the questions.  She is a layman, and she knows that. 

I don't agree with everything she says, and certainly don't believe everything in her book, but she has a good point that it is time to re evaluate the direction we are going with regard to certain groups of cancers.

It is hard to argue with her success, though.

This is how I see the equation re standard chemo:

If she had done chemo and had a recurrence, she would have just been unlucky, but did all she could.

If she had done chemo and had not had a recurrence then she would have been considered prudent and compliant.

If she had not done chemo, and had a recurrence, then she is a fool.

If she had not done chemo,  but had no recurrence, well, she was just lucky, and had minimal disease.

I am glad you are skeptical.  We need to challenge all methodologies.  There is no easy answer.


Posted By: MsBliss
Date Posted: Oct 27 2009 at 8:15pm
I don't know the details, but they saw masses on her scans....they jumped to a conclusion, without having pathology.  Probably took years off her life in that 6 days of darkness.


Posted By: Nancy
Date Posted: Oct 27 2009 at 8:19pm
Unklez,
 
Connie swore by CoEnzyme Q10 and she did not have any problems, and has recommended this in many posts. Lori did not take anything during chemo. She had ACT, all 3 every 3 weeks for 6 TX. Yet her MUGA in the spring showed the heart of a 25 year old. However, if she had it to do all over again, she would have taken everything possible to protect her body, and she would not have told her oncologist. Those are her words. It's all about control, and how much you are willing to relinquish to the doctors. There is a reason Adriamyicin is called "the red devil".
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: MsBliss
Date Posted: Oct 27 2009 at 8:21pm
MaryJahn, remember you want to take different and complementary types of anti angiogenesis type sups like Genisten, curcumin, etc.  Because if you take just one type, the cancer cells are clever and develop adaptations around the pathways.  Once they do this, they tend to be more effective and "pushy".  VEGF and EGFR are two pathways for angiogenesis.  You want to address both of them.  I haven't found out which sups address EGFR yet, but I am working on it!


Posted By: MsBliss
Date Posted: Oct 27 2009 at 8:28pm
Wheatgrass will help you build up your hemoglobin levels.  It is a blood builder and alkalizing.  I don't have the discipline to do it--but green powders are helpful, and you can buy wheatgrass that is frozen.


Posted By: Nancy
Date Posted: Oct 27 2009 at 8:33pm
Unklez,
 
Nancy
http://www.hrpca.org/glutamine.htm - http://www.hrpca.org/glutamine.htm
 
http://pen.sagepub.com/cgi/content/abstract/16/6_suppl/83S -  


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: 123Donna
Date Posted: Oct 27 2009 at 8:47pm
[/QUOTE]  VEGF and EGFR are two pathways for angiogenesis.  You want to address both of them.  I haven't found out which sups address EGFR yet, but I am working on it! [/QUOTE]

MsBliss,  Do you know what supplements address VEGF?




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: unklez
Date Posted: Oct 27 2009 at 8:51pm
Originally posted by 123Donna 123Donna wrote:

.... Do you know what supplements address VEGF?...[/QUOTE]

Avastin ... lol.






-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 27 2009 at 8:52pm
Originally posted by MsBliss MsBliss wrote:

A big yes on that.....it will also help your intestinal lining.  But don't overdo it because it will cause a little extra ammonia type metabolites.

On what dear?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 27 2009 at 8:52pm
Originally posted by MsBliss MsBliss wrote:

YES!  Unkle, YES!  No toxic upper range on this one.

On which one Dear?



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 27 2009 at 8:53pm
Originally posted by Nancy Nancy wrote:

Dear MsBliss,
 
All I did was ask administration, and they provided it. Anyone can do this. The TNBC Foundation site belongs to  each and every member. The will also make both the Alternative and Complimentary medicine a forum, where new topics can be posted. However,  that may take a while considering all they have had to restore in this past week.
Nancy

Waiting .......




-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 27 2009 at 8:54pm
Got to be able to add a thread per supplement or it is just a big kitchen sink....



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: Nancy
Date Posted: Oct 27 2009 at 8:57pm
123Donna
Nancy
 
http://www.raysahelian.com/angiogenesis.html - http://www.raysahelian.com/angiogenesis.html


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: 123Donna
Date Posted: Oct 27 2009 at 8:58pm
I agree with you all about a different thread for supplements, etc.  I'm trying to follow the conversation and my head is spinning.  I'm getting so confused as I don't know who's replying to which question.  Separate threads will definitely be better.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Nancy
Date Posted: Oct 27 2009 at 9:01pm
Dona,
 
There is no way to edit the posts anymore, so here is another link.
Nancy
 
http://www.cityofhope.org/about/publications/eHope/2009-vol-8-num-5-may-28/Pages/popular-supplement-may-help-choke-the-life-out-of-tumors.aspx - http://www.cityofhope.org/about/publications/eHope/2009-vol-8-num-5-may-28/Pages/popular-supplement-may-help-choke-the-life-out-of-tumors.aspx


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: Nancy
Date Posted: Oct 27 2009 at 9:04pm
Donna and Unklez,
 
Just send a pm to admin, and ask as I did...no plead...as my vertigo is kicking in really fast!!Wink There is not even a way to editCry, so there are many many replies.
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: unklez
Date Posted: Oct 27 2009 at 9:04pm
You can edit the post by clicking on "post options"....



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 27 2009 at 9:11pm
Originally posted by Nancy Nancy wrote:

Donna and Unklez,
 
Just send a pm to admin, and ask as I did...no plead...as my vertigo is kicking in really fast!!Wink There is not even a way to editCry, so there are many many replies.
Nancy

Done .....



-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: 123Donna
Date Posted: Oct 27 2009 at 9:17pm
Nancy,

Thanks for the link.  I'll pm admin and ask for the separate threads.  I thought the was an edit button but can't find it anymore.  I'm so confused!!!!

Donnja


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Nancy
Date Posted: Oct 27 2009 at 9:21pm
Donna,
 
I cannot find it either, and I did click on one button, but it said java script error? I'll say you are confused sweetie...you signed your name DonnjaLOL And you are not oldBig smile
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: unklez
Date Posted: Oct 27 2009 at 9:25pm
Originally posted by Nancy Nancy wrote:

Donna,
 
I cannot find it either, and I did click on one button, but it said java script error? I'll say you are confused sweetie...you signed your name DonnjaLOL And you are not oldBig smile
Nancy
 
It does appear that there are some errors in certain buttons.


-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: unklez
Date Posted: Oct 27 2009 at 9:26pm
Originally posted by Nancy Nancy wrote:

Donna,
 
I cannot find it either, and I did click on one button, but it said java script error? I'll say you are confused sweetie...you signed your name DonnjaLOL And you are not oldBig smile
Nancy
 
... is donnja old? :-)
 


-------------
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.


Posted By: 123Donna
Date Posted: Oct 27 2009 at 9:28pm
Nancy,

I caught my typo after I posted the reply but can't find the "edit" button so I'll have to keep my new name.  I had my eyes dilated for a vision test this afternoon and they're still not feeling normal yet.  I tried the Option button but nothing happened. 


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: 123Donna
Date Posted: Oct 27 2009 at 9:29pm
I'm feeling older every day!

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: maryjahn
Date Posted: Oct 27 2009 at 10:28pm
Donna
 
Thank you for the link on grape seed extract.  I will be having my surgery at City of Hope and it's good to know that there are capable dr's out there researching natural medicine.  I believe they are currently in clinical trials with soy, too.
 
Mary


Posted By: maryjahn
Date Posted: Oct 27 2009 at 10:32pm
Nancy,
 
You better believe I am taking a thousand notes on all of these supplements.  I am truly beginning to see light at the end of the tunnel, just wish my cold would be gone for good.
 
Thanks for the link.
 
Mary



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