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Old 08-29-2006, 09:25 AM   #1
Joy
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confused

Hi again all, thanks for the encouragement and advice. I have been reading, researching and re-reading so much in the last few days that I have confused myself. I'm really getting back on track with supplements, etc. I just got messed up on whether i should be taking any omega 6's at all. I've been taking a blend of 3',6's, 9's derived from fish, borage, flax. I also had started taking evening primrose, but maybe that has been a bad idea. Could anyone tell me in really simple terms, as i'm kind of 'studied out'. If I'm messing myself up?

I am also going to look at my estradiol, as has been suggested, cause I'm incredibly estrogen sensitive and still have powerful ovaries, but feeling menopausal still from taxol/carbo, but maybe the estradiol is sneaking up.

I'm also wondering if the Herceptin, after 4 years, is just not working. Why else would my biggest tumor in the liver have tripled in 6 weeks and the others have doubled? I was strongly her 2 positive per FiSH, but maybe the other components aren't there or the cells are too smart for this anymore.

Ugh, I hope the navelbine helps even though we are using it as 3rd line treatment. I'm trying so hard to rally AGAIN and feel like I am doing things to help-that dumb sense of control and proaction-you know?

sorry to be so self-centered, I do think about everyone on here and say my prayers for all. any news from sherry wv?

thank you, yet again,
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joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 08-29-2006, 11:21 AM   #2
R.B.
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Omega threes and sixes. It is complex and the are lots of posts that reflect this but I will try and give you a canned version based on my reading. I have read a lot but do not claim to be an expert.

In most diets high omega six is the primary issue. Omega six is found in most vegetables oils, and seeds and nuts. It is also heavily used in processed food. To cut down on six for most is going to requires significant dietary change. Things are complicated by what we feed out animals as they like us reflect what they eat. So grain fed animals are higher in omega sixes etc than the grass fed stock. Essentially western diet pushes people into an omega three six imbalance.

The key is to try and BALANCE your omega three and sixes and get the full range of omega threes and sixes. Use fish oil as a primary source of omega three and take some flax seed or oil. If you need to cook try and minimise but use a quality virgin olive oil which is about 10% omega six. Refined olive oil can be a lot higher in six 50%. A hand full of mixed nuts should supply quite a lot of omega six but please check for you intake using the link below.

Trials suggest that the optimal uptake of DHA is about 2 grams a day (4-5 tps of a quality oil) It is cheaper in a bottle and easier to take. Something like Carlsons - you'll find it on the web (see link below).

Do not use products containing trans fats (hydrogenated), avoid sugar and particularly fructose based sugars. Ensure you have an adequate supply of minerals including iodine. (seaweed is a useful dietary addition).

GLA -ensure you account for the omega six that comes with the GLA in your balancing act. IF you have high stored levels of long chain omega six GLA may not be needed. A test would be the only certain way to know, so moderation.

3-6-9s - if everything in your diet were perfect at 3-6-9 may be good but in the short term fish oil is possibly better as most people have high levels of omega six, which over time gets stored in body fats membranes etc. You have to redress that balance by providing more three and less six to allow the body over time to rebalance - The body starts quite quickly but the process in some organs does take time - months for breast tissue, more months for brain, and up to years for gluteal fats.

You can get an idea as to fats in foods here http://www.nutritiondata.com/fatty-acids.html

Three greek diet link on this site is a bit of a read but should help clarify the impacts of omega threes and sixes if you can face all that reading. If your digestion is shot there are some interesting trials on DHA infusions with low level cox blockers being trialed - it is on the fringe but may be a way of giving your fat status a shot in the arm so to speak and bypassing digestive problems till they improve.

It is important to try and get your digestive system working well. You might like to think about a green powder with digestive enzymes and probiotics - Green Frog is quite good - http://www.vitacost.com/ (they also do Carlsons), veg juicing and adding back pulp as roughage some suggests may help.

Fats play a big part in the liver. I saw one trial in rats where those on a balanced omega three six diet had livers almost half the weight of those on a 1:30 (roughly) omega three to six, which I found fascinating.

And of course the sort of tips you see regularly lots of greens highly colored veg and fruit, fatty fish mackerel etc wild is best, small small amount meat offal is good, lots of variety, some pulses, a few nuts, and limited grains.

There are tests you can get for fat status which if affordable may be a good investment, and lipid specialists. Omega threes do cause blood thinning etc so please do discuss with your medical advisor.

To balance the threes and sixes takes a concious effort and much lablel reading and from personal experience the areas of the supermarket you visit will shink. Do not trust descriptions eg beans in olive oil, as in most products cheaper veg oils are used too.

At the simplest level avoid processed foods, sugar, (or carefully check labels) no trans fats (hydrogenated), ensure adequate mineral intake (whole food variety), the usual generals greens etc..... bin all oils except virgin olive canola and flax, minimise usage in cooking, do not use canola or flax to cook, take some flaxseed of flax oil (see posts), and most important of all get a bottle of fish oil and take at least 4-5tps a day and you could double that maybe. As levels build up over months you will find your "taste" for it will ease back.

Please do some reading of the posts on omega three and six if you can face it, and please ensure you talk to your advisors about dietary changes, who may want to monitor blood fats etc., as we are all different.

I hope this helps. I am sorry I am not able to be more definative but much is still unknown and whilst there are positive trials on omega threes etc largely they have no been followed up in sufficient depth to be able to give definative answers.

Any potential side effects for most are very limited, and there are suggestions that the cancer risk profile may be significantly reduced so you have not got much to loose - but again please do discuss with your doctor.



RB

Last edited by R.B.; 08-29-2006 at 11:24 AM..
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Old 08-29-2006, 11:23 AM   #3
janet/FL
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Joy, my thoughts and prayers are with you. You aren't being "self-centered" it is just time for you to take center stage and get that cancer under control again.
I have no ideas, I know some others will stepforward with suggestions.
Hugs and love,
Janet
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Old 08-29-2006, 11:50 AM   #4
tousled1
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Joy,

I can't recall where but I read that Herceptin does lose its effectiveness after a period of time, or shall I say it will not work on its own. It's almost as if your body builds up an immunity to it.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 08-29-2006, 12:47 PM   #5
MJo
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Dear Joy -- If there is any time to be self-centered, it's now! Best regards and blessings, MJO
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Old 08-29-2006, 02:46 PM   #6
Joy
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thanks again to all and R.B.

Thanks all! R.B thanks for the diet info. I was re-reading labels and thinking about your advice so I might head back to the healthfood store and tweek some things. I read somewhere, years ago, that you should only shop the perimeter of the grocery store and leave the rest alone. I have largley subscribed to that practice since I was pregnant with my first 11 years ago. Sometimes I even count the aisles we skip, just to keep it interesting. I'm lucky, too, because our groceries do a good job of stocking whole and organic foods and we have a Vitamin Cottage and a Whole Foods (aka 'whole paycheck')in town. And we have some great farmer's markets. i feel blessed to have this access. It makes it all a little easier.

happy eating!

ps-had the first Navelbine and trying to be hopeful despite sitting in the chair sobbing in the beginning-ah well, it's part of the deal, isn't it?
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 08-29-2006, 03:21 PM   #7
Cathya
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Joy;

I know that you want to save lapatinib for later but I would suggest that there will be other treatments coming down the pipe for later use and it is always better to use all guns to fight this disease.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 08-29-2006, 11:43 PM   #8
Christine MH-UK
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Benefit probably minimal

Hi Joy,

Using some of the statistics in one of Dr. Javier Menendez's articles, I calculated once that starflower oil probably has very minimal benefits for her2 breast cancer cells and that evening primrose oil has too much linoleic acid (bad omega-6) to do any good, even though it also contains gamma linoleic acid (good omega-6). Dr. Menendez is the Northwestern University scientist who is the expert in the effect of fatty acids on her2+ breast cancer cells in the laboratory. His work shows that GLA, oleic acid, alpha linolenic acid and DHA increase chemosensitivity. If his figures are right, olive oil and flaxseed oil are particularly beneficial, fish oil is beneficial, canola is neutral and the other seed oils do poorly. (And yes, I realize that this is different from the whole omega3/omega6 business, but it is what his research specifically on two her2+ 3+ cell lines shows).

Incidentally, a study in Italy showed that Italian her2+ women with her2positive breast cancer actually do better than her2- women if they receive both an anthracycline and a taxane, so maybe there's something to the olive oil.
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