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Old 10-02-2007, 08:55 PM   #1
fauxgypsy
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Unhappy Femara and bipolar-anyone?

I have not mentioned this on this board before because there seems to be such a stigma attached to being bipolar these days but I really need answers. I am bipolar and have managed not to need medication with the exception of having serious problems with depression a couple of times. I have been taking Femara for about 6 weeks now and have been noticing that I am veering towards being manic. This is not good. On a hunch I did a search on Femara and bipolar disorder today and found the following paper. It suggests that aromatase inhibitors can trigger mania in bipolar patients.

http://www.blackwell-synergy.com/doi...8.2006.00367.x

I am going to have to discuss this with my oncologist Monday. The other information I found suggests that tamoxifen helps stabilize bipolar patients. In addition to the information above I read that there are higher survival rates for patients who take aromatase inhibitors than who take tamoxifen.

My oncologist has already suggested that I read too much. I really dread bringing this up but I cannot avoid it. Has anyone else had this dilemma? If I have to choose between quality of life and length of life I will have to choose quality. I cannot and will not tolerate the side effects of mood stabilizing drugs and they all cause weight gain as well, which again raises the risk of recurrence of the breast cancer. I have been able to find so little information on the combination of being bipolar and having cancer. Have any of you chosen to take tamoxifen instead of an aromatase inhibitor? What are the statistics of one versus the other?

Leslie
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-02-2007, 10:07 PM   #2
PinkGirl
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Talking Bi Polar

Hi Faux
I don't know much about bi-polar disorder. My onc. was in a hurry to get me off of tamoxafin and onto an AI. He said the stats were better for AI's than they were for tamoxafin, and the side effects from tamoxafin (blood clots, uterine cancer) can be life threatening. The side effects from AI's are not life threatening, but.....I don't think he was taking into account mania in bi-polar patients ( this could be considered life threatening, I think.) I hope someone on this board can help you with this. Good luck.
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Sept 7/05 Mastectomy
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Old 10-02-2007, 10:33 PM   #3
Kathy S in Tokyo
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Hi Fauxgypsy, and hugs. I don't have any stats for you but I do remember my oncologist asking me very specifically every month while I was on Tamoxifen about whether or not I felt I was depressed as he felt that it was a side effect to be watched for on the drug.
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11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
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30 Days rads, 7 months CEF-T Chemo
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12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
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Old 10-02-2007, 11:21 PM   #4
Lani
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thought you might appreciate this article

Manic phase of bipolar disorder benefits from breast cancer medication: Tamoxifen treats mania faster than some standard medications [Eureka News Service]

The medication tamoxifen, best known as a treatment for breast cancer, dramatically reduces symptoms of the manic phase of bipolar disorder more quickly than many standard medications for the mental illness, a new study shows. Researchers at the National Institutes of Health's National Institute of Mental Health (NIMH) who conducted the study also explained how: Tamoxifen blocks an enzyme called protein kinase C (PKC) that regulates activities in brain cells. The enzyme is thought to be over-active during the manic phase of bipolar disorder.

By pointing to PKC as a target for new medications, the study raises the possibility of developing faster-acting treatments for the manic phase of the illness. Current medications for the manic phase generally take more than a week to begin working, and not everyone responds to them. Tamoxifen itself might not become a treatment of choice, though, because it also blocks estrogen - the property that makes it useful as a treatment for breast cancer - and because it may cause endometrial cancer if taken over long periods of time. Currently, tamoxifen is approved by the Food and Drug Administration for treatment of some kinds of cancer and infertility, for example. It was used experimentally in this study because it both blocks PKC and is able to enter the brain.

Results: of the study were published online in the September issue of Bipolar Disorders by Husseini K. Manji, MD, Carlos A. Zarate Jr., MD, and colleagues.

Almost 6 million American adults have bipolar disorder, whose symptoms can be disabling. They include profound mood swings, from depression to vastly overblown excitement, energy, and elation, often accompanied by severe irritability. Children also can develop the illness.

During the manic phase of bipolar disorder, patients are in "overdrive" and may throw themselves intensely into harmful behaviors they might not otherwise engage in. They might indulge in risky pleasure-seeking behaviors with potentially serious health consequences, for example, or lavish spending sprees they can't afford. The symptoms sometimes are severe enough to require hospitalization.

"People think of the depressive phase of this brain disorder as the time of risk, but the manic phase has its own dangers," said NIMH Director Thomas R. Insel, MD. "Being able to treat the manic phase more quickly would be a great asset to patients, not just for restoring balance in mood, but also because it could help stop harmful behaviors before they start or get out of control."

The three-week study included eight patients who were given tamoxifen and eight who were given a placebo (a sugar pill); all were adults and all were having a manic episode at the time of the study. Neither the patients nor the researchers knew which of the substances the patients were getting.

By the end of the study, 63 percent of the patients taking tamoxifen had reduced manic symptoms, compared with only 13 percent of those taking a placebo. Patients taking tamoxifen responded by the fifth day - which corresponds with the amount of time needed to build up enough tamoxifen in the brain to dampen PKC activity.

The researchers decided to test tamoxifen's effects on the manic phase of bipolar disorder because standard medications used to treat this phase, specifically, are known to lower PKC activity - but they do it through a roundabout biochemical route that takes time. Tamoxifen is known instead to block PKC directly. As the researchers suspected would happen, tamoxifen's direct actions on PKC resulted in much faster relief of manic symptoms, compared with some of the standard medications available today.

"We now have proof of principle. Our results show that targeting PKC directly, rather than through the trickle-down mechanisms of current medications, is a feasible strategy for developing faster-acting medications for mania," said Manji. "This is a major step toward developing new kinds of medications."

Findings: from another recent NIMH study strengthen the results. This previous study showed that the risk of developing bipolar disorder is influenced by a variation in a gene called DGKH. The gene makes a PKC-regulating protein known to be active in the biochemical pathway through which standard medications for bipolar disorder exert their effects - another sign that PKC is a promising direct target at which to aim ne
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Old 10-03-2007, 06:09 AM   #5
fauxgypsy
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Thanks, Lani, I had read that article but I didn't have it handy. Thanks everyone else for their support. I know that I cannot function manic. If it is not one side effect it is another.

Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-03-2007, 04:49 PM   #6
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Hi faux gypsy,

I had a look on your posts and saw nothing on diet.

This is complicated, new ground and trials point in different directions - but there may be reasons for that such as failure to take account of stored fats, low level supplementation, no consideration of omega six intake etc.

You might like to read the Greek Diet Post which is mainly about omega threes and sixes.

The simple suggestion is balance the omega threes and sixes and ensure adequate long chain omega three with fish oil. (a trial in women suggested uptake drops off at about 2grams DHA a day).

DHA is key to brain function and structure. The brain does not function properly without adequate DHA.

There are trials that suggest that DHA and EPA may assist in neurological conditions including bipolar.

Blocking the oestrogens may reduce the availability of long chain omega threes.

I do not know anything about how femara works, or how selective it is.

Ensuring an adequate supply of the long chain omega threes may help bypass this.

Lithium as a leg of their mechanism intervene in the omega six pathways.


I am sorry I cannot be more precise. If the omega three six balancing and long chain supplementation does not help with the Bipolar it has other benefits to.

Please talk to your onc, as it causes blood thinning etc.

RB

http://ajp.psychiatryonline.org/cgi/...full/159/3/477

Some trials are positive and some sit on the fence.

This one has a very thought provoking graph suggesting a high connection between omega threes/sixes and the occurrence of bipolar

http://www.ajcn.org/cgi/content/full/83/6/S1483
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Old 10-03-2007, 05:51 PM   #7
fauxgypsy
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I cook primarily using olive oil when I need oil. I eat a lot of whole grain products, fresh veggies, and not a lot of beef. Probably more pork than I should. I do eat some cheese. I was taking fish oil and need to resume that. My husband is diabetic and so we watch what we eat carefully. I probably do need to re-read the greek diet post, though. My only concern about adding more fish to my diet is the widespread contamination of mercury and pesticides in fish. I did my graduate research on fish population genetics and saw some of the effects of pollution on the fish I sampled and I worked on several projects that looked at the effects of pesticides and other chemicals on fish populations. It has made me wary of eating much fish.

The second article was very interesting and I plan on reading it in more detail. I do agree that our diets contribute directly to our general health or lack thereof. However, I had everything pretty much under control even throughout chemo until I started taking Femara.

I spoke to the nurse practioner today and she discussed it with my oncologist and I will stop taking it and will discuss it with him on Monday. I am feeling better about it today. I do appreciate the references and the advice.

Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-03-2007, 06:38 PM   #8
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Leslie,

I can't offer you any advise as to how these drugs affect bipolar. I have a cousin who is bipolar and I know very well the manic side of it. It took many years for her to get properly diagnosed and that just happened about 10 years ago when I intervened. She is doing very well now but does take Lithium. Being bipolar does not have a stigma attached to it as it did years ago. You are to be applauded for dealing with being bipolar and going through cancer treatment at the same time. Cancer treatment is very stressful in of itself. I would definitely discuss the effects you are having with the oncologist -- he should be glad that you read so much. I feel a well informed patient is the best type to have. Best of luck to you
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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
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Old 10-03-2007, 11:01 PM   #9
Lani
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just came across...

Links
Enhanced cancer risk among patients with bipolar disorder.

Barchana M, Levav I, Lipshitz I, Pugachova I, Kohn R, Weizman A, Grinshpoon A.
Cancer Registry, Ministry of Health, Jerusalem, Israel.
BACKGROUND: In contrast to numerous epidemiological studies that explored the risk for cancer among persons with schizophrenic psychoses, analogous studies conducted on people with bipolar disorder are rarer, despite some commonalities in biological, treatment-related variables and unhealthy lifestyles. This study investigates the risk for cancer among psychiatric inpatients diagnosed with bipolar disorder. METHODS: Linkage analysis was conducted based on the psychiatric and the cancer national databases. Standardized incidence ratios (SIR) for both aggregated sites and for breast cancer were calculated by comparing the incidence rates among hospitalized patients with bipolar disorder with the incidence rates in the Jewish-Israeli general population. RESULTS: An enhanced cancer risk was found for bipolar disorder in both genders: men, SIR 1.59 (95% CI 1.01-2.17); women, SIR 1.75 (95% CI 1.31-2.18). The risk for breast cancer was higher, but not significantly, than in the general female population, SIR 1.70 (95% CI 0.99-2.41). LIMITATIONS: Our sample was derived from psychiatric inpatients, thus it is likely that the bipolar disorder cases had greater severity. Putative factors such as diet, smoking and medications were not investigated. CONCLUSIONS: Our study showed an enhanced risk for cancer among patients with bipolar disorder. Clinicians might note this risk for timely diagnosis and treatment.
PMID: 17904227 [PubMed - as supplied by publisher]
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Old 10-04-2007, 03:01 AM   #10
R.B.
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Fauxgypsy

Olive oil (virgin) is about 10% six and almost no three. Refined olive oil for some reason is reported as high as 50% omega six (adulteration?).

So high olive oil and no other oils would still result in a three six imbalance.

Inclusion of flax oil (contains no EPA or DHA etc only the mother omega three ALA) helps but if the conversion paths are blocked is only of limited help as a source of DHA.

Quality fish oil production does appear to remove many contaminants from fish oil. I am not sure about all. I have not found an answer. However given that DHA in particular is fundamental to neural function for me the risk trade off is a very acceptable one. (But likely you know more than me on that topic)

Animals fed on grain particularly chicken have a high three six profile.

On an observational basis try this... people with mental issues have said it helps.

Fat testing is an option and is not that expensive and more available in the US. You have to bear in mind body fat only changes slowly. Half life about 600 day.

There is evidence long chain omega three may assist in diabetes.

Please discuss dieary changes with your advisor.

RB
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Old 10-04-2007, 06:28 AM   #11
fauxgypsy
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I have a few questions for those of you that are trying to follow the Greek diet. What would be a sample menu for you? How do you work it into your life? If you take fish oil, how much do you take? How do you incorporate flax seed or flax seed oil into your diet? I have added it to my homemade whole wheat breads. Any other suggestions?

I have not heard of fat testing. How is that done? Is it similar to a cholesterol test? I will discuss all of this with my onc and try to see a nutritionist although the last time I spoke with one she was very vague and just gave the general line about food pyramids, etc. Very oversimplified.

Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-04-2007, 09:39 AM   #12
R.B.
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Testing

Here are some testers that are in a book called the The Queen of Fats Susan Allport. I would suggest if of interest it would be better to do it through somebody who is experienced in these matters. Ideally you would need to look at fat tissue content too but I do not know if this is available.

Please let us know how you get on as I have only read about this. I have found somewhere in the UK and will in due course try it out.

I have no idea about these suppliers. I simply re list what is in the above book (which is informative and well written)

Omegametrix.com $115?

YourFutureHealth.com

Nutrasource Diagnostics Guelph

How much to take. You will get a host of answers. My suggestion would be 2grams DHA a day in fish oil, and try and balance the omega threes and sixes. (look at label and check A and D content). This is again complex. It is about balance. In a perfect diet with adequate supplies and the correct balances in the body you would not need as much but you are likley to have high omega six in fat stores.

Some saturates are OK little butter or coconut.

Label watch and try and balance the threes and sixes. Check here http://www.nutritiondata.com/


Flax seed grind fresh and add it to anything. (ensure adequate water as can dehydrate if water supply is not adequate - also good source fibre soluble and non-soluable). Please check the posts on flax on this site and talk to your onc as there are vigorous arguments about the pro and cons of flax seed as against oil/

There are those that express concerns about canola and hemp. Hemp due to potential contamination with canaboids. They suggest canola may have negatives. I cannot give you any definitive answers as I simply have not read or seen definitive trials - which is not to say they do or don't exist.

I actually like the generality of his book found it very helpful and would recommend it. He has a newer version.

http://www.westonaprice.org/bookreviews/smartfats.html. I would agree with the generality of comments on saturated fats - and strict moderation.

The AA omega three issue is more complex as both AA and DHA are necessary to brain function and some do not make enough AA (complex !!!).

But the key is to balance the threes and sixes.

I have my own book (good or bad) which will be coming out soon which tries to answer some of these questions.

RB
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Old 10-04-2007, 02:30 PM   #13
R.B.
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I went on a canola hunt.

These trials were on the basis of canola as a sole source. I have not seen the full report.

I have seen many trials showing benefits with canola.

There is no explanation as to why.

I just have to leave you with with a ?

1: Toxicology. 2000 May 5;146(2-3):197-208.Links
Dietary intake of rapeseed oil or soybean oil as the only fat nutrient in spontaneously hypertensive rats and Wistar Kyoto rats - blood pressure and pathophysiology.
Naito Y, Yoshida H, Nagata T, Tanaka A, Ono H, Ohara N.

Department of Pharmacology, Hatano Research Institute, Food and Drug Safety Center, Ochiai 729-5, Hadano, Kanagawa, Japan.

Spontaneously hypertensive rats (SHR) and Wistar Kyoto (WKY) rats were fed a diet containing 10% rapeseed (canola) oil or soybean oil as dietary fat, and given drinking water containing 1% NaCl for 26 weeks. From the 10th week and later, systolic blood pressure in the canola oil group became higher than that in the soybean oil group in each strain. The 26-week feeding of canola oil increased plasma lipids and the neutrophil counts, and decreased the platelet counts. In the canola oil group the heart and kidney tended to become heavier with sporadically found histologic lesions. Acetylcholine- and nitroprusside-induced dilating responses of isolated aortic rings and norepinephrine- and veratridine-induced increases in vascular tone of isolated perfused mesenteric arteries were not different between the two groups in each strain. These results demonstrate that canola oil intake as the only dietary fat elevates blood pressure of the rat provided with drinking water containing 1% NaCl through mechanisms other than blunt dilating response of the blood vessel due to dysfunction of the endothelium or vascular smooth muscle, the augmented response to norepinephrine in the arteries and the increased amount of norepinephrine in the sympathetic nerve endings. The lesions in the heart and kidney in SHR may be related to a strain-specific peripheral vascular deterioration which was disclosed by the extremely high blood pressure in the canola oil group.

PMID: 10814852 [PubMed - indexed for MEDLINE]

Related Links

* Thirteen-week dietary intake of rapeseed oil or soybean oil as the only dietary fat in Wistar Kyoto rats-change in blood pressure. [Food Chem Toxicol. 2000]
* Rapeseed oil ingestion and exacerbation of hypertension-related conditions in stroke prone spontaneously hypertensive rats. [Toxicology. 2003]
* Increase in blood pressure with enhanced Na+, K+ -ATPase activity in stroke-prone spontaneously hypertensive rats after 4-weeks intake of rapeseed oil as the sole dietary fat. [Pharmacol Toxicol. 2000]
* Changes of blood pressure in spontaneously hypertensive rats dependent on the quantity and quality of fat intake. [Biomed Biochim Acta. 1985]
* Effects of long-term intake of edible oils on hypertension and myocardial and aortic remodelling in spontaneously hypertensive rats.
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Old 10-04-2007, 02:40 PM   #14
R.B.
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And for hempseed,

I have seen trials that suggest dietary benefit.

As was suggested trials show some of the active ingredient in found in oils, foods etc.

What the implications are I do not know.


http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

1: J Pharm Biomed Anal. 2005 Jan 4;36(5):939-46.Links
A rapid and simple procedure for the determination of cannabinoids in hemp food products by gas chromatography-mass spectrometry.
Pellegrini M, Marchei E, Pacifici R, Pichini S.

Drug Research and Control Department, Istituto Superiore di Sanitá, V.le Regina Elena 299, 00161 Rome, Italy. manuela.pellegrini@iss.it

A rapid and simple procedure using liquid-liquid extraction and subsequent gas chromatographic mass-spectrometric detection has been developed for determination of Delta9-tetrahydrocannabinol (THC), cannabidiol (CBD) and cannabinol (CBN) in different hemp foods. After addition of Delta8-tetrahydrocannabinol as internal standard, both solid and liquid specimens were extracted with two volumes of 2 ml of hexane/isopropanol (9:1): Chromatography was performed on a fused silica capillary column and analytes were determined in the selected-ion-monitoring (SIM) mode. The method was validated in the range 1-50 ng/ml liquid samples or 1-50 ng/g solid samples for THC and CBN, and 2-50 ng/ml or ng/g for CBD. Mean recoveries ranged between 78.8 and 90.2% for the different analytes in solid and liquid samples. The quantification limits were 1 ng/ml or ng/g for THC and CBN and 2 ng/ml or ng/g CBD. The method was applied to analysis of various hemp foods. THC content in different products varied 50-fold, whereas CBN and CBD were absent in some samples and achieved hundreds of ng/ml or ng/g in others. The concentration ratio (THC + CBN)/CBD was used to differentiate between the phenotypes of cannabis plants in different specimens. Products possibly originating from drug-type cannabis plants were found in the majority of analyzed specimens.

PMID: 15620517 [PubMed - indexed for MEDLINE]
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Old 10-04-2007, 04:30 PM   #15
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I use flax in sauces, bread, salads and cereals. I put mine in a pepper mill and grind...

My ex-boyfriend is bi-polar, so I know manic episodes very intimately. You should not feel funny about it or talking about it. It is a disease just like bc, and it is interfering in your treatment.

When I first started tamoxifen, I found myself having severe manic episodes, depression and overwhelming suicidal thoughts. My onc prescribed zoloft. It took 2 weeks, and I remember the exact moment the zoloft kicked in. It was like a moment of clarity. I am on femara now and continue to take zoloft so not to make waves...I am glad your taking the initiative in your care. If your doc thinks you read too much, you may want to consider finding a new doc. This is stuff he/she should be telling you about.

I have no advise to offer, but just wanted to let you know we are all here to support you...
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
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Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
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chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
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BC mets to lung 11/07
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Old 10-06-2007, 08:48 PM   #16
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I am taking my time to "digest" all this information. R.B., I really appreciate all the links. I will read them as time allows. Maryann, neither of my doctors discussed any potential problems with mood swings or depression with me, knowing that I am bipolar. I was so glad that I wasn't in a full blown depression that the manic snuck up on me. I am always a little manic in a good way (I get lots of creative work done), but this is not a good way. I am irritable and restless. I will be seeing my doctor Monday and I hope it goes well. I read the post about being able to separate a doctor's skill from his/her personality but I do feel that you have to be able to communicate freely.

Leslie
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-09-2007, 04:11 PM   #17
fauxgypsy
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Location: Mississippi
Posts: 600
Update

I saw my oncologist yesterday and he was resistant to changing my medication from Femara to Tamoxifen but did agree to do so. He made me sign a note in my chart that I insisted on the Tamoxifen and refused to see a psychiatrist. It's in my "permanent record" now. He would not discuss the issues with me because he was not a "psychiatrist." He did argue that it was not the Femara that could be making me feel manic. His argument was that if less than 1% of patients reported a side effect it was not a side effect (I am the queen of odd side effects, the rarer it is it seems the more likely I will get it.). I told him that I had learned to trust my body and that I was already feeling better since I was off the Femara. He would not discuss the research that Tamoxifen has been shown to be effective in helping bipolar patients. He told me that we were talking about a life threatening disease, as if I don't already know that. I told him that we were talking about two life threatening diseases. He was not happy with me and did not take the time to discuss the other problems that I am having that are not psychiatric. He did take the time to tell me that I might not be able to receive my herceptin treatments at the hospital as he had arranged for much longer. I am trying to decide where to have him refer me. I have only had two treatments at the hospital and that is not working well at all. They can't seem to get my appointments right, they seem to have no experience with the herceptin and yesterday when they accessed my port it hurt so much that I thought I would faint. He told when I changed to him that his clinic could not afford to treat me with the herceptin but they had an arrangement with the hospital and he would continue to see me. Well, not for much longer, the way he talked. I am not panicking but I am close. I still have several months before my year of herceptin treatment is over and we still don't know what stage I was and won't unless something else pops up and I hope it won't, but either way I need an oncologist that I can count on. So it looks like more change is looming. I am tired and seem to be hurting all over but particularly in my hips and feet so I'll check back later.

Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-09-2007, 05:55 PM   #18
Mary Jo
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Location: Sheboygan, WI
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Hi Leslie,

Just wanted to send you hugs and love tonight. Sounds as if you could use that.

God's Peace to you,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 10-09-2007, 06:29 PM   #19
Carolyns
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Join Date: Jun 2006
Location: South Florida
Posts: 477
Hi Leslie,

I have been on Faslodex and Femara and eventually had progression of the mets on each. Now I am starting with Tamoxifen. So I am going in the same direction as you for different reasons. Hopefully we are headed down the right path as it is the one that we have chosen.

I have read that some doctors believe that Tamoxifen might actually benefit bone health.

I wish you well.

Carolyn
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Old 10-09-2007, 08:33 PM   #20
fauxgypsy
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Location: Mississippi
Posts: 600
Thanks, all of you. My doctor did mention that it is better for bone health. My bone density test indicated that I had osteopenia, the precursor to osteoporosis. No one in my family had osteoporosis that I know of so it is probably a side effect from the chemo. I hope it works for both of us. The hugs and love do help.

R.B.... I have found an orange juice supplemented with omega threes. I mix my nasty potassium into it.

Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!

Last edited by fauxgypsy; 10-09-2007 at 08:33 PM.. Reason: I am sometimes an idiot.
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