Tamoxifen Resistance

Tamoxifen Citrate

Tamoxifen is a pharmaceutical drug (Novaldex) given to premenopausal women with estrogen positive breast cancer.

Tamoxifen can also be used in prevention for women at high-risk of developing breast cancer or used in fertility treatment.

It’s main task with breast cancer is to block estrogen receptors on tumour cells. This stops the growth of cancer, in the breast and in the body.

A less known fact among women with breast cancer, is that tamoxifen raises estrogen and progesterone levels in the body.

This seems counteractive to me.

In 2008, a collaborate paper between the top American cancer centres determined that increased estradiol (E2) is significantly associated with a risk of cancer recurrence.

As a side note, there are four main naturally occuring estrogens in women: Estrone (E1), estradiol (E2), estriol (E3), and estetrol (E4).

Each estrogen hormone is most active during the following times:

  • E1 menopause
  • E2 reproductive years
  • E3 pregnancy
  • E4 pregnancy

On top of that, the increased levels is though to contribute to tamoxifen resistance.

So I would like to know why that when I asked my first oncologist if they would be testing my hormone levels… she answered: No.

For now, I will be testing my hormone levels with urine and serum.

I started testing my hormone levels after my initial diagnosis. I test my hormones after all major changes: My diet, after starting tamoxifen, and through changing different supplements.

My ultimate goal is to see my hormones become balanced.

I am not happy with the wait and see approach, this would mean that I would have to wait for recurrence to know if tamoxifen actually worked.

CYP2D6 gene mutation

There is also another aspect aside from hormones that causes tamoxifen resistance.

This can be tested by buccal swab (mouth swab) done by your physician. The companies name is Genelex located in the USA.

I have not yet done this testing but will be ordering it and will let you know the results!

Further reading:

Tamoxifen: A way without side effects

Deciding to take tamoxifen is a tough decision, considering it is also considered a carcinogen! On top of it, you are committing to 10 years of taking this drug!!!

They are finding in research that certain cancers, such as ILC (Infiltrating Lobular Carcinoma), is not very effective with tamoxifen. This is the type of cancer that I had developed.

Hopefully, a test will be available in the near future to test the efficacy of tamoxifen for ILC patients. Tamoxifen didn’t’ get the name Jekyll and Hyde for no reason. It works amazing on some and the opposite for others. I will save this topic for another blog post. In the meantime, lets talk about how to improve your QoL – quality of life while on tamoxifen.

Nolvadex is the brand name of Tamoxifen. I started off on a generic brand that made my ears swell: literally. Most pharmacies in Canada don’t carry the brand name in house, so I went with generic. The cost per month is relatively the same and quite inexpensive at about $55 CAD per 3 months.

After having this crazy experience with the generic brand, my oncology team suggested I try the brand name. Sure enough, I had absolutely no issue on the brand name drug, as compared to the generic brand. I could only tolerate 5 mg on generic without having my ears swelling up. With Nolvadex at 20 mg, a full dose, I was fine.

What to do when you have side-effects:

That being said, I had sleep disturbances, spinal pain and hot flashes during the start of my treatment and also again after going off of it for surgery. I take Tamoxifen with Selenium, Vitamin E, I3C and Melatonin to increase the efficacy of the drug, and if I have to take it, I want to make sure it does the best job it can!

I also noticed that with 15-30 minutes of cardio each day the side-effects were non-existent.

On top of that, I make sure that my body is in detox mode! I do not want it accumulating in my body and damaging my liver or causing secondary malignancies. To help my body detox I take NAC, ALA, and Calcium D-Glucarate, which also helps detoxify estrogen.

Another aspect is making sure to have at least 2 good bowel movements a day, include wheatgrass and a high fibre diet.

Weekly I make sure I give my bowel a good cleanse with food and enema. I switched from doing coffee enemas as they seems to give my adrenals pain in my lower back. So I use chamomile tea or chlorella now.

To reduce side-effects from tamoxifen (recap):

  • Include selenium from food sources, I3C, vitamin E and melatonin
  • 15-30 minutes cardio exercise per day
  • Detoxifying foods & supplements – high fibre and cruciferous vegetables

Sick Care System > Health Care System!

Understanding the limitations of a treatment based medical system and the responsibility of the ‘government’ and ultimately what we need to do in order to keep healthy can only be accomplished if we understand the limitations we are working with.

Allopathic medicine or Medical Doctors (MDs) are not in a position to prevent disease when incentivized to care for only the sick. Furthermore, a portion of the responsibility falls on the ‘state’ to keep their citizens healthy and safe through regulatory measures from banning smoking in restaurants to providing food labelling on menus and grocery store products.

For so long, I assumed it was my family doctor that was suppose to keep me healthy, but in reality family doctors are the gateway into the medical system that only want to see you if there is something medically wrong with you.

If you want to stay out of the system, then the government needs to promote health seeking behaviours, which is a blanket to the general public but definitely doesn’t include the outliers.

This realization has made me think about my own disease and how it could be prevented in others and essentially have people be the healthiest versions of themselves. I had come across the video below by Matthias Mullenbeck who really hits the nail on the head…. our current system is a Sick Care System…his thoughts on changing the mindset to only pay physicians to keep people healthy is brilliant.

Beyond just changing the mindset within modern medicine, I would add that integration of natural medicines that seem to understand the body in ways outside of medications and surgeries sound also be integrated.

If I were to ask someone in Traditional Chinese Medicine or Ayurvedic Medicine they would describe being healthy as having balance in the body through the flow of chi or in the balance of the doshas.

Naturopathic medicine works to combine all forms of natural medicine and if integrated into our medical system would provide the perfect base to provide primary prevention: that is making sure people never get sick. I also feel that because men and women are so different, it doesn’t make sense to have one provider for both. There is already a lot to know, why complicate things even more.

Specializing primary health care by age and sex would help make sure patients are getting the best possible care and allow the provider to be able to stay up to date on the latest and greatest. It’s a win win!

So in the meantime, until we get there as a system, you can choose to learn more about your body and it’s limitations through DNA testing, hair analysis and hormone testing for starters and find yourself a good naturopathic doctor and a family doctor that is responsive to your needs. Build your health care team to work for you, to keep you healthy and if your like me, never get sick again.

Further reading:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4339086/pdf/nihms663715.pdf

The Epidemiology of Breast Cancer and Individualized Medicine

Invasive Lobular Carcinoma, Stage 3

There are 4 basic aspects to epidemiology: figuring out the cause of the disease of concern, the incidence or frequency (how often it occurs), distribution (who it affects and where), and ways to control or treat the disease.

Of anything I have ever studied, breast cancer seems to be the most vaguely touched on when it comes the “cause”. As far as my physicians are concerned the cause is not important, it’s getting rid of it that is.

However, if we are truly offering individualized care, as it so clearly says on the side of the hospital I have been attending, then as an epidemiologist, in order to prevent a disease we must know the cause for each person in order to prevent recurrence. Even more importantly what we learn from these individuals we can extrapolate to family practice to prevent our society from ever getting cancer.  This to me, is what continues to attract me to epidemiology and what I feel is my responsibility to others.

As a side note, one huge missing link is getting this information back to primary care providers… so that we can prevent the disease from occurring. In my opinion, family medicine should require more years of training and also should be defined or sub-specialised in terms of male or female, and age. With the amount of information that is out there it is virtually impossible for a family doctor to be able to help keep society healthy with so many differing variables.

I do not see individualized care when it comes to breast cancer and I don’t see anything being done in regards to prevention.

There are many such “approved” tests available, that still at the doctors discretion are employed; as OnchoType Dx, a test that examines a sample of your tumour post surgically to assess whether the risks of chemotherapy out weight the benefits.

For me it was crucial to understand the cause of my disease. This is truly the only way to prevent it.

Cancer is not simple and there is definitely more than one contributing factor in order to develop this disease, but knowing the triggers can help you take control from ever being sick again.

From my research there where several tests that led me to understand how I developed breast cancer including emotional manifestations that impact these ‘weaknesses in my DNA’, when I didn’t have any of the ‘so called’ associated risks: smoking, drinking, BRCA1/2 gene mutation, and family history.

So then how did I get this? A relatively young 40 year old women. I would have also included healthy, but for me there were so many warning signs from the age of 20 that to me I didn’t feel healthy, even though doctors would have described me as healthy.

  1. At first glance I thought the best place to first look was at my hormones,

    considering I was diagnosed with estrogen receptor (ER) and progesterone receptor (PR) positive cancer. The dutch test, is the only test I would recommend for hormone investigation. This test on me clearly showed that my hormones had taken a walk down a dangerous path that would make them carcinogenic. However, they also showed that my testosterone was low which is caused by increased cortisol levels. Combined with my years of insomnia, I knew this was correct and one very crucial piece of the puzzle in learning about my risk factors in developing breast cancer.
  2. Second, was understanding my body’s genetic capabilities.

    This can be done though DNA testing from 23andMe or Ancestry.com and then requesting the raw data and sending it to your naturopath to analyse in PureGenome free software.

After learning that I am unable to methylate estrogen, it become clear to me that my cancer could be prevented through B vitamins, magnesium and other supplements that encourage detoxification of hormones as Indole 3 Carbinol, Calcium D Glucarate, glutathione, and a diet rich in cruciferous vegetables.

Knowing all this, I feel it is important to educate other women in hopes they can avoid ever having to walk this path…

Investigating hormones & DNA, should this be part of keeping people healthy?

So as this journey began for me, I first wasn’t surprised, when I was diagnosed with breast cancer, as I was symptomatic for years… it was just that no one knew what was causing my symptoms.

To this point, there are two main tests that were eye opening to me:

  1. The Dutch Test
  2. PureGenomoics

Your doctor may say they don’t know what caused your disease, or give a blanket term by saying that it is environmental. I agree, environment has something to do with it and that there are many factors that needed to happen in order for the disease to express itself.

What I am not comfortable with, is the lack of investigation around what may have caused a persons disease. Fair enough the health system has so many things to deal with, but I feel if a patient wants this information the option should be made available even at a cost. Since my diagnosis I have spent well over $15,000, to investigate and heal every aspect of my disease outside the conventional healthcare system.

Many supportive and investigative aspects could be integrated into they system in such a way that it would give patients an option to a clear structured pathway would cost a fraction of what it has cost me.

These tests I had done with my naturopathic doctors. Yes more than one. It has taken me meeting many different providers to learn about different tests as there is just so much out there that not one provider alone could provide me with everything I needed.

The Dutch Test

I feel if there is only one test to look at your hormone levels it should be this one. It tells you the exact state of your hormones and especially if they are travelling down a dangerous pathway.

The pathway that led to my breast cancer

When I saw what was happening with my hormones I immediately thought, why didn’t anyone look at these years earlier? Why isn’t this part of regular practice?

You always wish you could turn back time, I mean no one wants to make it to the point of having cancer. I would like to see in the future however, if doing these tests at pivotal ages, as 20 and 30 would help prevent future breast cancer? Is anyone up for this challenge?

Write me, I would love to hear from you, especially if you are a Naturopathic Doctor or Family Doctor lindsay@diagnosed.ca

PureGenomics & DNA sample

To top it off, once I had given my raw data from 23andMe to my naturopath, he found that my methylation pathway was out of whack and that my body is not able to detoxify estrogen!!! Additionally, after learning about this, research I read several research papers that include that homocysteine (Hcy) an sulfur amino acid and precursor to demethylation of methionine, Vitamins B6 , B12 and folate are important cofactors that participate in the metabolism of Hcy, which all play a role in oncogenesis. http://exp-oncology.com.ua/article/11320/increased-homocysteine-plasma-levels-in-breast-cancer-patients-of-a-mexican-population

For me in this moment, I wished that these tests could become a standard of practice.

I feel this is something worth investigating. As a public health researcher I look for gaps in the system and practical ways we can address them. If you are interesting in participating in an ad-hock study, I would love to hear from you.

The criteria for participation is that you are diagnosed with a hormone sensitive cancer of the breast. I am interested to see study the cause of your cancer by looking your methylation pathway. To participate you should have already done either 23andMe or Ancestry.com testing. You will just need to request the raw data. In return for your participation, you will receive a full report on the variations in your DNA by looking at your single nucleotide polymorphism (SNPs).

To participate please email and indicate Methylation Study in subject line. study@diagnosed.ca