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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 11:34am
Do you take Melatonin?  I tried the 3 mg and would take it for a few days at a time.  I had the weirdest dreams.  It made me drowsy but at the same time I felt like I was awake all night.  Anyone have similar experiences.  I read how it's important to take but so far I've had worse nights sleep with it.
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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Belle_Laide Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 12:59pm
Hi All--This is a very interesting, educational thread.

I am of Italian heritage--first generation---and grew up on the Mediterrian Diet. Lots and lots of olive oil from Italy, tons of fresh veggies; have been a vegetarian for over 20 years. It's wonderful that people want to clean up their diets. I am living proof, unfortunately, that TNBC may happen anyway.

Not that we shouldn't have great diets and put fresh and healthy and wonderful things in our bodies, of course. Just sayin' be kind to ourselves by doing the best we can and if we have gotten this creepy disease or, the Gods forbid, have a recurrance, to know we did the best we could and it's no failure on our part. We can't control everything [;)]; we do what we can.

Also, melatonin can affect asthma in asthmatics, and there are folk out there who are asthmatic and should not be taking aspirin and NSAIDS (can be verified by WEBMD or an asthmatic who is allergic to these drugs. Some folk who have asthma have been found to be allergic to these drugs and a reaction can be fatal)       [:^(]

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 2:54pm
Dear Bookie! Ha ha.  OK, I started with the basic dose, I think 1 cap (500mg) three times a day, then doubled it after two weeks.  Then I changed brands and always took a minimum of 3000 per day.  Right now I take three to five of the "uber" absorb per day which equals about 2100mg minimum.  I never had a stomach issue with the high doses, but some of us can have severe irritation from many diff things and not even know it is happening, so you are smart to be cautious.  For example, I didn't even know my ulcerative colitis had progressed and was at a dangerous stage because my symptoms were too subtle; another example is my neighbor just ended up in the hospital with a ruptured duodenal ulcer, and she never had the slightest warning.  So pay attention to any tummy sensitivity and make sure you have a little fat or oil with the curcumin.  Black pepper or bioperine helps absorption too, but it is usually included with the curcumin.  It can be a tummy irritant too, but it is a trade off.  We need this stuff in our systems, it is very important.  What ever you do, take a minimal dose that feels agreeable to your stomach.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 3:04pm
Hi Donna--yes, I take melatonin.  I take from 10 to 20 mg per night.  If I am very tired I take 10, if I had a restless day, or too much coffee, I take 20mg.  My doctor wants me to take 40mg!  I think that would put me in a coma, so I won't do it.  I def have vivid dreams from the melatonin, and on some days I feel groggy when I wake up, but all in all, the good solid sleep it gives me feels right.  Amongst other things, melatonin is a natural aromatase inhibitor, which doesn't matter for tnbc, but matters for the big picture as we are not immune to developing secondary er pos bc.  Many studies have shown good levels of melatonin are protective for breast health so I am going with it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 3:10pm
I should clarify the curcumin dose:  the super absorb is a 700mg cap, so 3 of them equals 2100mg per day.  The super absorb quotient confuses the dose ratio, so just know that you get the minimum dose but the effect is as if you took up to four times that amount.  I vary what I take daily depending on other factors too, for example, what I ate that day, if I ate curry, if I have stomach sensitivity, mood, etc... 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jodiel1 Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 4:35pm

is it best to get the curcamin with bioperine of not?

little confused about the dose?

does any one no a good website to get all the suplements from?

thanks Smile

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 5:23pm
still don't know the answer to that....I think bioperine has independent positive effects biochemically, but the people I have consulted said it is more important to get the curcumin in the system first, which means super absorb counts first, bioperine second.  But if Bioperine has independent action of it's own, shouldn't we be adding it too?  Also, Bioperine helps with absorption, but you don't need it with super absorb.  I can't wrap my logic around this one......
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 5:54pm
Jodie,

You may want to try www.vitacost.com


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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 8:47pm
I too read Edge's posts diligently as well.  However, someone tell me if I am wrong, but when reading his posts about the curcumin, I thought I had read that the dosage was to be higher for those with metastatic disease than for those that have not experineced a recurrence.  Am I wrong and should those of us that have yet to experience recurrence take the higher dose?
 
Gosh, this is so dang confusing.  I love what he writes, but I oftentimes have trouble understanding it!
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 02 2010 at 9:14pm
Wow, this answer to the low fat Wins trial is very interesting.  I suspected the same issues, but don't have the knowledge base to analyze it like Edge does.

He makes a good point.  You see, the low fat benefits were from weight loss and insulin metabolism, not the fat reduction.  Without good fats we don't get the best bang out of vitamin D, curcumin, boswellia, etc.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2010 at 7:47am
I just saw that Edge-CAM has updated his protocol.  Here's the new link, please check it out!

http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4698965&trail=20#1


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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote bookbaroness Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2010 at 6:37pm
Thanks Donna,
I will need to print this out to compare to the last one!
diane
dx 3/09,lumpectomy 4/09, margin & axil nodes 5/09, stg IIa,grade 3.ACT/avastin done 10/29, rads started 11/30, 12/09 recur vs missed initially. 1/10 bilat mast, rads done 4/10, zometa q3mos now
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2010 at 12:51am
Donna, thank you for posting this link....I had not checked for updates.  This is awesome information!

Bliss
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jodiel1 Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2010 at 9:41am
hello everybody,
Thanks alot for that webiste donna!
I been reading through lots of your posts trying to work out which supplements  to get my mum.
Shes just half way through rads at the moment.
Can any one tell me some of the best supplements to get, i did follow the link but found it a bit confusing.
I am going to order her d3 2000iu, she still hasnt had her levels checked yet.
Aslo the curcamin 1000mg to take 2 x a day. do you think this is a good amount to start on?
The green tea, not sure on the dose of this?
What brands are the best to get as im from England and none of the brands ive seen are familiar to me?
Also my mum is taking antidepressants, i no  she will have to check with her doctor but does anyone no if these supplements are ok to take with them?
Thanks very much for your time.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2010 at 10:27am
Hi jodie, you may want to be careful with antioxidant supplements and the green tea while your mom is completing her radiation. The D3 is a great thing to do while on rads but when researching I found that there was a huge uproard over antioxidants supplements while doing the radiation.
 
On the other hand, lots and lots of fresh fruit and veggies during radiation is a good thing...
You may find, as I did, that once she gets her D levels up and running that she can toss the anti depressants.
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 9:40pm
Jodie,

With D3, you also want to get Calcium/Magnesium to help with the absorption.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote jodiel1 Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 4:37pm

what dose in the calcuim and magnesium? x

 

 

 

 

 

 

 

 

 

 

 

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 9:23pm
Jodiel1,

This is from the VitaminDcouncil.org website:

Vitamin D's Co-factors

Vitamin D has co-factors that the body needs in order to utilize vitamin D properly. They are:

  • magnesium
  • zinc
  • vitamin K2
  • boron
  • genestein
  • a tiny amount of vitamin A

Magnesium is the most important of these co-factors. In fact, it is common for rising vitamin D levels to exacerbate an underlying magnesium deficiency. If one is having problems supplementing with vitamin D, a magnesium deficiency could be the reason why.

http://www.vitamindcouncil.org/newsletter/more-vitamin-d-questions-and-answers.shtml

I try to eat more nuts and seeds, but I also take a calcium/magnesium/zinc supplement with my D3.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote nosurrender Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 7:21pm
Hi everyoneSmile
I am glad that you find Constantine's hard work helpful to you over here on the TNBC forum. Thank you  for citing  the No Surrender Breast Cancer Foundation and Constantine as the source for the information that was copied here. We really appreciate it.

I was wondering if you could let me know what you mean when you say you find the  forum hard to navigate? We are constantly upgrading to make it as user-friendly as possible, and I would truly appreciate hearing what makes it confusing so I can fix it!

You can email me at nosurrenderbreastcancerhelp (at) gmail (dot) com.

Thanks so much in advance!

hugs,
No Surrender
diagnosed TNBC 2001


www.nosurrenderbreastcancerhelp.com
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2010 at 9:13pm
Hi, Gina.  :)
I love your site.  It's such a lovely community and resource.  Thanks for all your dedication, and congrats on your new book.
Love,
Denise
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.
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