Tuesday, May 24, 2011

More on Memory Effects

As I mentioned in an earlier post, when I was looking at memory effects and other side effects of lupron, tamoxifen, raloxifene,

http://genxbreastcancer.blogspot.com/2011/01/memory-effects.html

they cause memory effects. At the time, except on (generally not so reliable?) web forums, there was a great deal of complaining about these, especially in the case of lupron, where they were said to be irreversible and severe.

Many more medical sites, and some anecdotal evidence from older women, indicated that there were memory effects with menopause, and that this was pretty -- par for the course? Not talked about, lest it demonize older women in the workplace? Something one can work around? One's memory might not be so swell in any case? So that having menopause temporarily induced early -- might be ok? Better than a cancer recurrence?

Everyone has to make her own decision about this, but I want to tell you, of the side effects, and I suffered them all to some extent, the deterioration of eyesight, soaring risk of unrelated cancers (as high as 40%), soaring risk of blot clot and stroke, and memory loss -- acting, well perhaps goofy or downright crazy, but actually not remembering anything -- forgetting calls made, conversations had, e-mails sent -- hours long lacunae every day, more than a trip to the fridge or the store or the library wondering, oop, where's the car? why am I here? but forgetting the trip, and its result. Opening the fridge and seeing some item, and wondering -- hey, who bought the corn?

To revise Lyn Hejinian completely, to what extent is memory an aid to writing? What is the meaning of remaining in the now when 1) there is no past or future, 2) you don't remember what "now" was like earlier in the morning?

Now, some of these memory effects -- I wrote about this I think in an e-mail to a friend -- were perfectly ok. I dindn't want to be doing the laundry or unloading the dishwasher, and so my mind would just block out those repetitive chores. In the same way, this is how I lose my cars in parking lots (*especially home depot) -- because it is such an unpleasant routine, I am thinking of something else, when I park, and go into the store. Stress *obviously* has a part in this, and being seriously ill -- no matter how temporarily, is extraordinarily stressful.

Saturday, May 21, 2011

Some Rare Radiation Side Effects

I may have mentioned before that one of the rare radiation side effects I suffered from was "radiation flu" -- low grade fever (not particularly responsive to aspirin), achy, you know -- flu. It is more common in older women, so no one informs younger women -- how common it truly is! I had this for over a month.

Another one is lung damage to the lung underneath the irradiated area. Again, because this uncommon, about 5% of breast cancer patients, and because it is more common with older patients, it didn't occur to me -- or anyone! -- that this was what my persistent, dry cough and lung pain were. It doesn't heal particularly well on its own without a steroid.

Is my current thyroid condition temporary or permanent? Was it caused by radiation, or is a reaction to the "hormone stew" created by raloxifene? Watch this spot for answers. I'm hypo, meaning, after weeks of prednisone mania (I cycled off after three weeks, not TWO MONTHS!), I can barely get out of bed.

Sunday, April 10, 2011

a last gasp...

Oestradiol and oestrone levels in two groups of women (oral contraceptive users and non-users) were investigated by Sarkola et al. (1999). Blood was removed 40–150 min after alcohol intake (~2.5–7.5 UK units consumed in 30 min at 6 p.m.). Food intake was not controlled. In oral contraceptive users, an assumed alcohol-induced rise in oestradiol, but not oestrone, levels was evident. In the non-users the evidence was less convincing. In agreement with the proposal of Mendelson et al. (1988), these authors suggest that a change in the redox state of liver cells induced by alcohol metabolism is responsible for increased enzymatic conversion of oestrone to oestradiol. Furthermore, they cited the work of Tseng and Gurpide (1979), which reported that the enzyme responsible, 17β-hydroxysteroid dehydrogenase type 2 enzyme, is induced by the synthetic progestins contained within some oral contraceptives.

More Alcohol and Cancer!

"And in women, drinking may change estrogen levels, increasing the risk of breast cancer." from the LA Times

New Study in the British Medical Journal
http://www.bmj.com/content/342/bmj.d1584

If we assume causality, among men and women, 10% (95% confidence interval 7 to 13%) and 3% (1 to 5%) of the incidence of total cancer was attributable to former and current alcohol consumption in the selected European countries.

I.e., 1-5% of cancers in women attributable to alcohol.

Of that 1-5%, 2-8% are breast cancer.

A substantial part of the alcohol attributable fraction in 2008 was associated with alcohol consumption higher than the recommended upper limit: 33 037 of 178 578 alcohol related cancer cases in men and 17 470 of 397 043 alcohol related cases in women.

This is somewhat curious as "109 118 men and 254 870 women, mainly aged 37-70" were surveyed. How could there then be 397 043 alcohol-related cases in women, if 254 870 women were surveyed? What is this claim -- that they are alcohol-related -- based on? Where does the reporter get the estrogen link claim, if there are more alcohol-related cancers in fewer men?

OK, upon further reading, the study supports a finding that 3% of all cancers in women are alcohol-related. If one then looks at the total incidence of all cancer in women... then 3% of that number could be... 397043?

The highest absolute number of alcohol attributable cancer cases in men was found for upper aerodigestive tract and in women for breast cancer. The study mentions this several times, as in

What is already known on this topic
Alcohol consumption has been causally related to cancers of the oral cavity, pharynx, larynx, oesophagus, liver, colorectum, and female breast

For cancers that are causally related to alcohol consumption, the proportions were 32% in men and 5% in women, with a substantial part (40-98%) being attributable to current alcohol consumption above the recommended upper limit of two drinks a day in men and one drink a day in women.


Here is this -- WHICH I HAD NOT SEEN BEFORE:

the alcohol (ethyl alcohol) in the drinks, consumed at the rate of two or more drinks a day, that increases your levels of circulating estrogen

Studies that have investigated the effect of moderate alcohol consumption on the level of oestrogens and progesterone in both pre- and post-menopausal women are reviewed. It is concluded that several lines of evidence point to an alcohol-induced rise in natural or synthetic oestrogen levels in women. Proposed mechanisms include an increased rate of aromatization of testosterone or a decreased rate of oxidation of oestradiol to oestrone. Moderate alcohol consumption has also been linked to decreased progesterone levels in pre-menopausal women.

And they say they don't know how pr+ cancers in women function.

This is all very confusing; it says in several very public places that alcohol increases estrogen production, especially in the breast. But the scientific sites don't say that.

Saturday, March 5, 2011

More Radiation Permanent Side Effects

Now, it starts coming out. What WILL you experience after radiation? Hard to find out. I mean, it is not as though you're not going to radiation if you don't have a masectomy.... but can't you please let us know?

Radiation Damage of Tissues
The extent and progression over time of tissue damage following radiation depends on the amount of radiation and the fractionation schedule.

Following acute effects, chronic changes may occur which are characterized by a deterioration in the small blood vessels, cells, and fibrosis of tissue. Atrophy and ulceration of soft tissues aggravated by trauma and infection are possible further changes.

Surgery in irradiated tissue can prove to have poor tissue healing.

Radiation injury with impaired healing most often appears three to four years after treatment. It is not uncommon to see progressive chronic degeneration for 10 years+

If you have a cord, you have to work it out [physical therapy]

There is rib soreness. Your ribs are weaker, and could conceivably break more easily.

Wednesday, March 2, 2011

Cholesterol Lowering Medications

Statins, as seen on TV (Lipitor, Crestor, Zocor, etc.) Some types of statins are naturally occurring, and can be found in such foods as oyster mushrooms and red yeast rice. I am taking some mushroom juice. It is yummy. You're not supposed to eat any grapefruit, but I'm wildly allergic to it anyway.

Side effects are cognitive loss, neuropathy, pancreatic and hepatic dysfunction, and sexual dysfunction, renal damage, muscle deterioration, and nerve damage. These are all pretty rare, though, and since these are literally the most popular drugs on the market, lots of people are using them.

One medicine which keeps your intestines from absorbing fat. Instinctively, this seems like a good idea, but IT CAUSES CANCER. No dice.

Niacin, yup, the vitamin, which -- good to get some, but better not to induce liver toxicity!

Resins

Medicines which make your liver produce more bile. Instinctively, I think that anything *else* that touches the liver is not good.

Bone Loss Support Research

With an anti-estrogen, there are also two additional drugs one has to pursue: one to counter bone density loss and one to counter cholesterol.

Because there are side effects to this, the rule of thumb seems to be to DEMAND (you will have to demand) a bone density scan (different than the bone scan you probably had earlier) to establish a baseline, and WAIT. Yup, they'll ask you to wait until you have bone loss. Yet, there is more. Even if you already have osteoarthritis (I do -- lower back and hips -- who knew)? That is apparently *not enough* to indicate... you're at elevated risk... for osteoarthritis.

I guess these are really drugs to avoid. I'm on prescription strength vitamin D and OTC calcium (which also includes vitamin D).

The ones I know about are Actonel, which my husband took, Fosamax, as seen on tv, and the one Sally Field is the spokesperson for.

Actonel: Risedronate
Fosamax: Alendronate
Boniva: Ibandronate

there are also two more:

Skelid: iludronate
Reclast: zoledronic

These are all bisphosphonates.

Of these, my husband may have had sensitivity to light, but who knows -- he has always been sensitive to light, plus the other medication he was taking caused very similar side effects. It increases risks of cancer in the esophagus to .2% from .1%, which is pretty darned insignificant. It is also used for metastatic cancer in the bone.

Side effects:

nausea

burping

dry mouth

stomach pain

diarrhea

constipation

gas

headache

dizziness

depression

anxiety

weakness

leg cramps

back pain

frequent or urgent need to urinate

painful urination

dry eyes

ringing in the ears

Some side effects can be serious. If you experience any of the following side effects, call your doctor immediately before you take any more risedronate:

difficulty swallowing or pain when swallowing

new or worsening heartburn

chest pain

itching

rash

hives

blisters on skin

swelling of the face, throat, tongue, lips, eyes, hands, feet, ankles, or lower legs

difficulty breathing

hoarseness

swollen, red, or painful eyes

sensitivity to light

painful or swollen gums

loosening of the teeth

numbness or heavy feeling in the jaw

poor healing of the jaw

A Path

So, I have chosen a path, which is to begin on raloxifene. If I tolerate it well, I can ramp up to tamoxifen. If I don't, I can find another option.

My oncologist strongly advises avoiding recurrent cancers at all costs, that the 30% reduction in all recurrences is a 30% reduction in recurrent cancers, and that in younger women, recurrent cancer is not 50% mortality rate, but 100% mortality (i.e., even if one has a normal life length, it would not be anything but the cancer which ended it).

Saturday, February 26, 2011

phytoestrogens

note that these were listed under xenoestrogens; there is conflicting evidence about naturally-occurring estrogens such as these -- more evidence that that the chemical estrogen mimics are bad, or at least worse, health-wise.

Table 1. Foods high in phytoestrogen content.

Phytoestrogen food sources
Phytoestrogen content (µg/100g)

Flax seed
379380
Soy beans
103920
Tofu
27150.1
Soy yogurt
10275
Sesame seed
8008.1
Flax bread
7540
Multigrain bread
4798.7
Soy milk
2957.2
Hummus
993
Garlic
603.6
Mung bean sprouts
495.1
Dried apricots
444.5
Alfalfa sprouts
441.4
Dried dates
329.5
Sunflower seed
216
Chestnuts
210.2
Olive oil
180.7
Almonds
131.1
Green bean
105.8
Peanuts
34.5
Onion
32
Blueberry
17.5
Corn
9
Coffee, regular
6.3
Watermelon
2.9
Milk, cow

but is important to consider, given that if you are switching to an anti-oxident-rich "anti-cancer diet" -- even though there is no evidence that THAT plays any role in breast cancer recurrence, and has everything to do with colon cancer, not liver, brain, lung, lymph or bone cancer -- you will be emphasizing these plants, when you should be eliminating them (for hormone receptive cancers)

Total phytoestrogen and lignan content in vegetables, fruits, nuts and drinks.


Vegetables
Soy bean sprouts
Garlic
Winter squash
Green beans
Collards
Broccoli
Cabbage

Fruits
Dried prunes
Peaches
Strawberry
Raspberry
Watermelon

Nuts and other legume seeds
Pistachios
Chestnuts
Walnuts
Cashews
Hazel nuts
Lentils

Beverages
Wine, red
Tea, green
Wine, white
Tea, black
Coffee, decaf
Beer

Other
Black bean sauce
Black licorice
Bread, rye

The bummer for me, in this, is that flax, rye, lentils, almonds, chestnuts, dates, berries are some of the few foods I can eat.

Interesting, too, is that CANadaOLA OIL is not on these lists from canada, but olive oil is. Hmmm.

xenoestrogens

this is a list from a blog that has some debunked risks in it, that I will try to eliminate

A List of Xenoestrogens
Posted on October 20, 2007 by sowgenerously

If you are attempting to avoid xenoestrogen exposure, here is a list of substances to avoid. I compiled this from many sources and it’s the most complete list on the Internet. Xenoestrogen contributes to “excess estrogen” or “estrogen dominance”.

Avoid:

* Commercially-raised, non-organic meats such as beef, chicken, and pork
* Commercial dairy products including milk, butter, cheese, and ice cream – Use only organic products that do not contain bovine growth hormone
* Unfiltered water, including water you bathe in – Use reverse-osmosis filtered water such as Dazani or get your own filter
* Laundry detergent – Use white vinegar, baking soda, or tri-sodium phosphate (TSP)… According to some experts, avoid even the Seventh Generation and Eco brands

I figure trader joe's hi-e is ok.

* Dryer sheets and fabric softeners – Use white vinegar is a marvelous natural fabric softener, no smell after it dries

The problem IS the smell after it dries! see avoidance of lavender oil... aiyyy I was using lavender instead...

* Avoid Primpro, DES, Premarin, Cimetidine (Tagamet), Marijuana, and Birth Control Pills.

* Hormone replacement therapy (HRT)
* Paraben preservatives
* Soy
* Ground flaxseed – If you’re looking for the Omega-3 effect, use fish oil instead
* No sunflower oil, no safflower oil, no cottonseed oil, no canola oil – Use olive oil or grapeseed oil
* Avoid Tea tree oil (melaleuca) – I know, I love tea tree oil, this one is tough
* No lavendar oil
* Avoid coffee and caffeine
* Sage and rosemary
* Shampoos, lotions, soaps, cosmetics that contain paraben or phenoxyethanol – Almost all contain them, you have to look far and wide. Make sure no Dr. Bonner's with tea tree or lavender!

* Avoid reheating foods in plastic or styrofoam containers
* Avoid drinking out of plastic cups and containers

This has been pretty thoroughly debunked, although my reading today IS implicating plastics manufacture... (doing it, living near it)

Avoid naturally occurring plant estrogens:

* Coffee
* Clover, red clover tea, alfalfa sprouts
* Sunflower seeds
* Queen Anne’s lace (wild carrot)
* Pomegranate – The Greeks used this plant as a contraceptive!
* Dates
* Fennel
* Licorice, red clover, yucca, hops (beer) and motherwort
* Bloodroot, ocotillo, mandrake, oregano, damiana, pennyroyal, verbena, nutmeg, tumeric, yucca, thyme, calamus rt., red clover, goldenseal, licorice, mistletoe, cumin, fennel, chamomile, cloves
* 4-Methylbenzylidene camphor (4-MBC) (sunscreen lotions)
* butylated hydroxyanisole / BHA (food preservative)
* atrazine (weedkiller)
* bisphenol A (monomer for polycarbonate plastic and epoxy resin; antioxidant in plasticizers)
* erythrosine / FD&C Red No. 3
* nonylphenol and derivatives (industrial surfactants; emulsifiers for emulsion polymerization; laboratory detergents; pesticides)
* polychlorinated biphenyls / PCBs (in electrical oils, lubricants, adhesives, paints)
* parabens (lotions)
* phenosulfothiazine (a red dye)
* phthalates (plasticizers)
o DEHP (plasticizer for PVC)

Here is another list from Dr. Peter Eckhart, MD:

2. Change your laundry detergent because it cannot be fully washed from the clothes and can be absorbed through the skin. Do NOT use dryer sheets or fabric softener.
3. Do not use anything on the skin with parabens or phenoxyethanol in them. This includes shampoo, soap, makeup, hand lotion, body lotion, and toothpaste. Oral substances are 90% filtered by the liver. Skin-absorbed substances are 100% absorbed by the body, thus, a skin dose is 10 times an oral dose.

4. Avoid coffee. Avoid decaf coffee. No caffeine. No tea. No colas. Caffeine increases estradiol levels by 70%!

5. No sunflower oil, no safflower oil, no cottonseed oil, no canola oil. (Guess that leaves olive oil).

7. Avoid estrogenic herbs especially TOPICALLY such as sage and rosemary.
8. Avoid weak estrogens such as soy and ground flax seed.
9. Many sunscreens are estrogenic. Check.
10. Use cosmetics with minerals or grapefruit seed extract as a preservative.

According to Dr. Elizabeth Smith, MD, there are some things you CAN do:

* Use glass or ceramics whenever possible to store food and water. Heat up your food using a glass or ceramic bowl covered with dish. When plastic is heated, it diffuses very rapidly into food.

This is true of all plastics *not* designed for microwave use as well as microwavable containers, which should never be washed & REused (like the ones frozen foods often come in), and other plastic containers food comes in, which, sorry grandma, should be RECYCLED, NEVER REUSED.

* Use a simple detergent with less chemicals; Nature Clean is a good choice for both laundry detergent and dish washing detergent.

* Simple Soap is a safe choice for shampoo and a body soap.

* Use natural pest control not pesticides.

* Avoid Synthetic Chemicals.

* Don’t use herbicides; use a cup of salt in a gallon of vinegar. That's nice if you want to kill *everything* and not just weeds.

* Buy hormone free meats to eat.

* Buy “Organic” produce, produce grown without pesticides, herbicides or synthetic fertilizer or hormones.

Actually, this is about strawberries, raspberries, apples, peppers, peaches, nectarines, pears, cherries, grapes, spinach, celery, and potatoes, and not so much about everything else. In case you were wondering.

* Use Condoms without spermicide for Birth control instead of Birth Control Pills. Use Natural Progesterone instead of HRT. << absolutely not; almost all ER+ cancer is also PR+

* In general, the hormones taken orally are first pass metabolized by the liver 80%-90%. However, when these hormones are applied to the skin, the hormones are directly absorbed by the body. Thus, any skin dose is 10 times that of an oral dose. The vast majority of skin lotions and creams use the parabens as a preservative. Avoid them at all costs. Instead apply a vegetable oil right after a shower to hydrate the skin and lock in the moisture.

Baby oil and cold cream: that's what I'm down to right now.

Paraben-Free Cosmetics List

at bcaction.org:

http://bcaction.org/our-take-on-breast-cancer/environment/safe-cosmetics/paraben-free-cosmetics/

Kiehl's isn't on it, and they do have lots of paraben-free stuff.

Now, if I only weren't allergic to everything else.

Phaltate-free list:

http://bcaction.org/our-take-on-breast-cancer/environment/safe-cosmetics/phthalate-free-cosmetics/

Link for young people (incl. gen y, z, etc.) w/ cancer

http://stupidcancer.com/

Good list of books.

Friday, February 4, 2011

Risk

If I were using my "risk management" knowledge, I would be blogging more about background risk vs. specific risk.

For example, the 12% (often called "1 in 8" but actually 1 in 8.8 = "1 in 9") risk of getting breast cancer in general is cumulative / lifetime (for the first cancer) -- while the average risk is 1.3% per year, increasing.

Tamoxifen -- measuring true risks

Li's team studied data on nearly 1,100 Seattle-area women aged 40-79 who were treated for ER-positive breast cancer between 1990 and 2005. The group included 367 women who developed breast cancer in their other breast at least six months after their first diagnosis. << ON T

It's from WebMD. Yes, a whopping 1/3 of women in the study got a relatively rare (so we read, but at 33% -- not rare at all to my mind) breast cancer.

One of the things turning over and over in my mind is: the dreaded double prophelactic (sp?) masectomy. The wife of a childhood friend just opted into one; she had an ovarian cancer when she was pregnant, in a horrifying turn of events, about 15 years ago. She has the gene, and every 1st degree and apparently most 2nd degree female relatives of hers have had one or both cancers. The DDM reduces breast cancer risk to 15%. But, um, what happened to my 11% risk after 5 years of tamoxifen? You know, is it really 33%, taking in consideration the cancers t. causes AND those it doesn't prevent?

Monday, January 31, 2011

Recommendations Received by Others

Foods. From the "lower-cancer-risk" low fat, high anti-oxidant diet in its more extreme interpretations to raw foods....

I.e., to use food as medicine.

Now, I am inclined to not view food as medicine. But you've heard it: no animal protein, no cooked animal protein, no cooked animal or vegetable protein... no yeast, yeast cakes, etc.

The true question, then, is that even though very thorough and complete diet different from the (commercial, popular standard) makes no significant change / improvement in testable outcomes of health, where cancer is concerned, it may, in populations with cancer, make subtle but important changes.

Side Effects: #1 Weight Gain

It is called central body fat, and it is coming your way; about 8 lbs of it is normal. One approach is probably accommodating it, coupled with low fat diet and exercise.

Another approach is possibly fighting it, with a low-calorie diet, exercise for weight loss but targeted to central body fat (pilates?) Trial and error to determine which (low fat or low carb) works best.

Exercise for weight loss is not yoga!

Tuesday, January 25, 2011

Memory Effects

Like many drugs, Lupron comes with inserts warning of a number of potentially serious side effects, including: depression, joint disorders plus loss of bone density, or osteoporosis.

Yet none of the warnings - except for bone loss - state the side effects might continue long after stopping use of the drug.

However, seven of the women interviewed for this story say they suffered memory loss and bone aches while on Lupron, and that the problems continue years after stopping the drug. Some say seizures and serious vision problems that started while on Lupron also haven't gone away.

--

The results of a new study suggest that side effects of tamoxifen, a breast cancer drug, can lead to decreased cognitive abilities and memory loss.

Women who took tamoxifen for a year or more were found to score lower on verbal memory and executive functioning tests, according to researchers at the Netherlands Cancer Institute in Amsterdam. Their results were published this month in the online version of the Journal of Clinical Oncology.

--

Co-STAR showed "specific impairments in processing speed and verbal memory in women receiving hormonal therapy for the treatment of breast cancer".

Sunday, January 23, 2011

Still Searching for Chemical Ovarian Ablation

" if patients receive chemical ovarian ablation (ovary shutdown) and truly have suppression of estrogen production, that aromatase inhibitors can be very effective. In premenopausal women who have early stage breast cancer, this is a research question. "

In other words, there seems to be no data on chemical ovarian ablation WITHOUT tamoxifen, or with an AI on top of the chemically-induced menopause as of 2008. Why?

In the metastatic setting, ovarian ablation and tamoxifen monotherapies produce comparable outcomes and MAY be more effective when used together.

Now, this is not early-stage breast cancer, obviously.

Continuing,

[There is] significantly greater disease-free and overall survival rates for women under the age of 50, regardless of nodal status, receiving ovarian ablation as a single adjuvant therapy.

Yipee!

Ovarian ablation followed by some years of tamoxifen produces similar results to those seen with adjuvant chemotherapy in women with hormone-receptor positive breast cancer; however, the value of combining these modalities is still unclear.

Unsaid is what ovarian ablation without tamoxifen.

Other areas of ongoing investigation include the appropriate duration of therapy with LHRH analogues in the adjuvant setting, the long-term sequelae of ovarian suppression among young breast cancer survivors, and refinement of the population most likely to benefit from ovarian ablation or suppression.

Here's some other info.:

Potentially reversible castration can be accomplished medically using luteinizing hormone releasing hormone (LHRH) analogues.

So that's what is next here.

Raloxifene

Raloxifene reduces recurrent breast cancers, but doesn't cause quite so many strokes or uterine cancers. Nor quite so many cateracts. "maybe slightly less clots"

While tamoxifen protects against bone loss in menopausal women, IT INCREASES BONE LOSS IN PREMENOPAUSAL WOMEN. This is in caps because I found this NOWHERE in tamoxifen info., only in raloxifene info. Raloxifene, actually a treatment for osteoporosis in postmenopausal women, also increases bone loss. So when you hear about the beneficial side effects of tamoxifen, ignore it. They don't apply to you.

The major study, called STAR, was on postmenopausal women, though, and it was in 2006; most postmenopausal women now choose Aromatase Inhibitors.

A study completed in 2009 on premenopausal women "at risk of developing breast cancer" (i.e., with the gene)

While AIs do lower numbers of recurrent breast cancers, in premenopausal women, they don't lower risk as much as other treatments.

Since tamoxifen halves recurrence risk, it could be that my "post-tamoxifen" risk of 11% "without radiation" could be as high as 22%. The "without radiation" caveat is that most data available was from a time when lumpectomy + radiation rather than masectomy was experimental.