Recurrence Rollercoaster – #2 Headless chicken

A quick re-cap for newcomers to this blog:  I was diagnosed with breast cancer (Stage 1) and spent approximately 1.5 years doing alternative treatments, but the tumour kept growing so I had a mastectomy.  I woke up from the mastectomy to find my left arm paralysed because of nerve damage (to the brachial plexus) caused by tractioning of the arm during surgery.  I had to have further surgery to release the nerve and because of that, I had no conventional adjuvant treatment.  Nine months after the mastectomy, the cancer recurred.  This is a summary of the options I was exploring after the recurrence.

We all want tidy endings to healing journeys.

We’re programmed through myths and story-telling and Hollywood Blockbusters, to expect tidy endings, happily-ever-after fairy-tales.

With the recurrence, it was as if the story I was writing for my healing wasn’t coming through. I know loads of people who have done the surgery- chemo-radiotherapy route and the cancer vanishes and they live happily ever after, in remission for the rest of their lives.

But I was on a different story track.

Writing this with the luxury of retrospect, I was running around like a headless chicken trying to find ways to get rid of the cancer.

chicken

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Recurrence Rollercoaster – #1 – Why Tamoxifen didn’t work for me

Emotional-Roller-Coaster-Ride

So, for newcomers, a quick recap of the back story:  I had a mastectomy, and when I woke up from surgery, discovered my left arm was paralysed.  This had been caused by damage to the brachial plexus nerve that controls the arm.  I had to have further surgery to free the injured nerves.

It took about nine months before I was finally able to lift my left arm, and control it.  It was a dark time, and I remember being in a state of numbness most of the time.  I still look back on that period with a sense of incredulity, and amazement that I got through it.

In those nine months, to give my arm the best chance of healing, my surgeon and I took the decision not to have any active treatment in case they damaged the nerves.  I was also hoping that the treatments I’d had at Hallwang Private Oncology Clinic in Germany would help.

tamoxifen-blocks-estrogen-receptors

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Best of Breast: news for week ending 19 December 2014

A summary of medical developments in cancer and breast cancer, collated from Google Alerts, for the week ending 19 December 2014.

Venn

Tamoxifen.

 

I still have a lot of catching up to do, and I’ve just realised that the news feeds are full of the 2014 San Antonio Breast Cancer Symposium – help!

I know I should rejoice because the Symposium is full of researchers jostling to show off their latest “cures”, but after so many years of following the Symposium (and other symposiums) I’ve come to realise that they are about shoot-outs between different types of chemotherapy, and that the supposed breakthroughs haven’t really filtered through to mainstream/commercial/ affordable treatments.

I open with CYP2D6 testing as a marker for how effectively the body can metabolise tamoxifen.

Tamoxifen [Endoxifen] has long been the de facto treatment for (pre-menopausal) women with estrogen-positive breast cancer, it’s been touted as a preventative against recurrences.

However, what they don’t tell us is that tamoxifen doesn’t always work, or it may work only partially.  Tamoxifen is metabolized by the human body, via the CYP2D6 gene, into endoxifen which is the active metabolite.  If there are variants in the CYP2D6 gene, then this means that tamoxifen will not be effectively metabolised.

The test for CYP2D6 can be obtained in the US by the Mayo Clinic (Cytochrome P450 2D6 Genotype for Tamoxifen Hormonal Therapy) and in the UK by Roche (Roche AmpliChip® CYP450 Test).  See also information  on:  http://emedicine.medscape.com/article/1762071-overview

It is well worth getting if you want answers if you think tamoxifen isn’t working for you.  However, the solution, as some research seems to suggest, is to increase the dose of tamoxifen, or to switch off the ovaries [chemically or via ablation] and take more hormonal suppressors.

The second article is about a 20-year study which seemed to show that although tamoxifen prevented incidences of breast cancer, this did not affect overall mortality, and in fact led to an increase in ER-negative tumours after 10 years, and a 45% increase in endometrial cancer.  It seems to be saying:  yes, there’s less chance of you dying of breast cancer, but you’re still going to die of something else

(Damned if you do and damned if you don’t.)

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Best of Breast: news for week ending 12 December 2014

The latest news in breast cancer and cancer, aggregated from Google Alerts, for the week ending 12 December 2014.

sex-chromosomes

Smoking can erase the Y chromosome (on the right) Image credit: techtimes.com

There’s been a gradual but steady rise in the number of immunotherapy articles, featuring cancer vaccines.

I think what people need to realise is that a cancer vaccine is not like a flu vaccine where a one-off will provide cover for that season’s viruses.  A cancer vaccine has to cope with a myriad of different metabolic factors, the state of the patient’s immune system etc.

Often cancer vaccines require a course of vaccines for as long as the person lives. The nature of the beast is that it is different in everyone and it mutates, presenting different faces to evade and disguise itself from the body’s immune system.  Multiple vaccines has to be administered to adapt to this enemy that wears a thousand masks.  If the person is lucky, the immune system will wake up and do the rest.  But if not … there are no guarantees that cancer vaccines will work for everybody.

I visited Prof Nesslehut, the world’s expert in dendritic cell vaccines and other immunotherapies, and was advised that a course of vaccines would start at one per month for six months, then tapering down to three-month and six-month intervals.  Over a five-year period that would add up to about Euro100,000 depending on the variants used.

So personalised immunotherapy that is affordable is yonks away unless you’re lucky enough to get onto a trial.

It’s the start of the 2014 San Antonio Breast Cancer Symposium which means loads of research into breast cancer sub-types and treatments, which this week is heavy on TNBC.

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Best of Breast: news for week ending 15 August 2014

A summary of medical developments in Breast Cancer and Cancer for the week ending 15 August 2014.

In Best of Breast w/e 8 August 2014 it was wasp venom that was being used to fight cancer, now it’s the turn of the bee.  OK, it’s not the most earth-shaking medical development, but it makes a change from the usual chemotherapy drugs.trials.  And speaking of which, Item 3 examines the fact that different chemotherapy regimes have different side effects, and raises the question that we should reconsider what choices are made in selecting treatments.

Item 2A is about a purported cure using salt injected directly into tumours.  Please note that this is not what it seems to be: an easy cure for cancer.  The refutation is in Item 2B, and highlights the need not to jump the gun or fall prey to so-called breakthroughs.  And this salt cure has nothing to do with Dr. Simoncini’s controversial work on bicarbonate of soda and tumours.

bee venom

How do you milk a bee? Answer: Very carefully! Today, the most widely is used the method of so-called “milking” the bees during the spring-summer season. In this case, the bees are annoyed by weak electric current pulses and sting a glass, from which the dried venom is then scraped. photo credit: keepingbee.org

1.  Bee, snake and scorpion venom could be used to fight cancer

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Best of Breast: news for week ending 25 July 2014

The latest cancer developments from Google Alerts, with a bias towards breast cancer, for the week ending 25 July 2014.

This week’s top 2 features offer potential cures for cancer which either don’t cost very much (aspirin) or are already being used in other ways (marijuana/cannabis).

marijuana

image credit: mexicoinstitute.wordpress.com

Aspirin was originally derived from willow bark, which has been used as a painkiller since the time of Hippocrates.  Aspirin reduces inflammation, and that may play a role in inhibiting the growth of tumors — perhaps by slowing the development of new blood vessels that nourish them, or by fighting old cells that keep growing when they should be dying off. It may also inhibit estrogen production, and we know that estrogen fuels the growth of most (but not all) breast cancers.

And yet, until now, there have been no randomized trials (the gold standard of research) of aspirin use among women with breast cancer – a travesty.  The solution:  don’t wait for the boffins to rubber-stamp aspirin, just take it.

As for cannabis (or rather in its concentrated form, cannabis oil), just google cannabis oil and cancer, or Rick Simpson Oil and you’ll be overwhelmed by the number of scientific studies.  Unfortunately, unlike aspirin, cannabis oil is not available in your local friendly pharmacy, and in many countries, its use is illegal.

1.  Grandfather, 63, claims he cured his cancer with ‘Breaking Bad’ style homemade CANNABIS OIL

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Best of Breast: news for week ending 20 June 2014

The latest news developments from Google Alerts for Breast Cancer and Cancer, for the week ending 20 June 2014.

This week opens with the can of worms which is Diet and Cancer.

Everyone who is anyone has a view on what a cancer patient should eat:  The NO diet –  no sugar … no dairy … fruit … no fruit … low-carb … no-carbs … no meat; or the EXTREME diets:  restricted calorie … high-fat … vegan … juicing … raw food … macrobiotics … Budwig … Gerson … alkaline … ketogenic diet.  It’s sad that with cancer diets, whole groups of foods are viewed as poisons and every cancer diet is restrictive and ends up taking on the semblance of a fundamentalist religion.

Now another study comes along that purports to prove that red meat increases the risk for breast cancer.

Before you stop going to BBQs, consider the fact that the study was based on what women could recall from their diets years back and that memory is notoriously inaccurate.

I’ve had friends who were vegetarians since childhood, who still developed breast cancer.  Of course, they may be the exception to the belief that vegetarians get less cancer.

Please don’t throw the baby out with the bathwater.  Free-range grass-fed beef is a good source of conjugated linoleic acid for one.  Please see a list of research here.  Everything in moderation!

SteakCartoon

image credit: vegansoapbox.com

1A.  Replacing red meat with healthier foods may help prevent breast cancer

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Best of Breast: news for week ending 14 February 2014

I am now fundraising for treatments at:  GoFundMe http://www.gofundme.com/78jh2w  and https://www.justgiving.com/goBananasforRona

Here is the weekly summary of news alerts from Google Breast Cancer and Cancer for week ending 14 February.

ValentineMouse

We love you! We’re helping to cure cancer!

I was spoiled for choice this week – all my favourite topics came up (and not a single tedious cohort study):  curcumin (wow!), intravenous Vitamin C (double-wow!), more mouse trials (see Valentine’s Day card they sent us), cancer vaccine, new drugs (wow-wow-and-wow) and tamoxifen.

Curcumin:  One of my most popular posts is on curcumin.  Scientists have now discovered that putting an implant of curcumin into mice halted tumour growth vs ingesting it orally.  Before we all rush out and get one … remember, it’s only been tested on mice, and only available in mice-size implants.  However, the good news is that intravenous curcumin is available.  The bad news, it’s in Germany and only six clinics at the moment have access to it.  The good news, it’s available from the reputable PraxisKlinik Siebenhuner integrative clinic in Frankfurt (costs about Euro1,600 for six infusions).

Intravenous Vitamin C:  There’s a study from the University of Kansas on the efficacy of intravenous Vitamin C in ameliorating chemotherapy symptoms – I’m not sure why it’s “new” news – this has been part of the protocol at the University of Kentucky for awhile.  If you’ve followed my blog, you know I tried IV C and it didn’t work i.e. shrink the tumour.  Having said that, in the two years I was on IV C, I never got any metastasis, so maybe something was working.

Tamoxifen:  In Best of Breast (w/e 31 Jan) I mentioned that bodybuilders were taking tamoxifen, i.e. going out and buying it.  Well, this week it’s revealed that bodybuilders may be unwittingly taking tamoxifen in bodybuilding supplements – it’s not even listed on the label.  In case you were wondering … they take tamoxifen because they want to stop their man boobs from growing from steroid use.

This week’s headline:  Finally … with all the juicy topics lined up, I chose to lead with a computer game that you can download to your iPhone or Smartphone and play and help scientists analyse real genetic data for cancer faster.  Wouldn’t it be great to help beat cancer and have some fun too?  Game on!

PalyToCure

1.  Video game to help find cure for cancer

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Best of Breast: news for week ending 15 November 2013

A summary of the latest medical developments in breast cancer from Google Alerts, for the week ending 15 November 2013.

1.  Breast cancer breakthrough: Queensland scientists identify molecule linked to disease’s spread

T-shirt

MiR-139-5P sounds like a Space Station.  If they renamed it “Rogue Breast Cancer Molecule” I think it could sell more T-shirts.

  •  Scientists in Queensland have identified a pivotal molecule, the miR-139-5P, that shows whether a woman’s breast cancer will spread and how quickly.
  • miR-139-5P acts a cellular brake to inhibit breast cancer cells from proliferating
  • The discovery will help provide a clearer prognosis for breast cancer patients and could lead to treatments that are more personalised, i.e. treatments for aggressive cancers vs less aggressive cancers.

For more information:

RNA Journal, “miR-139-5p is a regulator of metastatic pathways in breast cancer”

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Best of Breast: news for week ending 18 October 2013

A sweep of the latest medical developments in breast cancer from Google Alerts, for the week ending 18 October 2013.

[Google Alerts doesn’t always have the most up-to-date research developments, and as it’s Breast Cancer Awareness month, heavy on fund-raising and charity events, so if I’ve missed something out, my apologies. You are always welcome to post any new developments that I’ve missed out in the comments box and I’ll be glad to include them in the compilation, and include an acknowledgement of your contribution.]

Multivitamins

photo credit: mirror.co.uk

1(a)  Multivitamins May Save Some Breast Cancer Patients’ Lives

This recent study contrasts with one conducted in 2010 which showed that women who took multivitamins were 19% more likely to develop breast tumours (see reference below).

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