A couple of women on Twitter drew attention the past week to this September 1 article in Telegraph by Laura Donnelly.
NHS rationing bodies refuse to fund treatment which stalls breast cancer
According to the article, The National Institute of Health and Care Excellence said there was a lack of evidence to prove that the drug called fulvestrant extended lives. Studies that said fulvestrant "stalls the cancer’s growth by around three months" were seen as weak on research. Also NHS feel it is too expensive compared to other available drugs. So over a thousand women will apparently not get the drug until it is studied further. The article says Fulvestrant is "licensed for women with oestrogen-receptor positive cancer, who have not already had other forms of hormonal treatment." (my bolding) Right there I began to find different takes on the drug as used in the states.
Medline Plus for instance seems to find different rules on who is eligible here for the drug: "Fulvestrant is used to treat hormone receptor positive breast cancer (breast cancer that depends on hormones such as estrogen to grow) in women who have experienced menopause (change of life; end of monthly menstrual periods) " and whose breast cancer has worsened after they were treated with antiestrogen medications such as tamoxifen (Nolvadex). (Bolding mine.)listen
Fulvestrant is also used in combination with palbociclib (Ibrance®) to treat hormone receptor positive breast cancer in women whose breast cancer has worsened after they were treated with antiestrogen medications such as tamoxifen (Nolvadex)."
Also "Fulvestrant is in a class of medications called estrogen receptor antagonists. It works by blocking the action of estrogen on cancer cells. This can slow or stop the growth of some breast tumors that need estrogen to grow."
"Fulvestrant is approved to treat: Breast cancerin postmenopausal women. It is used in patients with estrogen receptor positive breast cancer that has metastasized (spread to other parts of the body) after treatment with other antiestrogens." There it is again! Not for use here as a woman's first antiestrogen.
So who should get it as the first antiestrogen, and who should not.
Aside from who should get it, I found notes on what it does from
On this site, Tamoxifen, which I take, is explained as a SERM - drugs that bind to estrogen receptors, keeping estrogen from binding with them. Serms are also versatile, acting as estrogen agonists in other parts of the body. BUTFaslodex/fulvestrant is presented as a different substance entirely: "However, unlike SERMs, fulvestrant has no estrogen agonist effects. It is a pure antiestrogen.
In addition, when fulvestrant binds to the estrogen receptor, the receptor is targeted for destruction." (my bolding)
Those last three powerful words from an American site might be interpreted as hope or ammunition for argument by the women who are protesting the refusal to use fulvestrant without more testing.
Recently I had the mother of all sinus allergy
attacks. I was actually coughing and
sneezing too hard to drive. It taught me
that a tissue in each hand can make me forget all I need to say. Things like what to tell the doctor and what
to ask the doctor. And showed me how
careless I’ve been. Even with my rules:
Keep meds list updated
I update my grocery list daily. But Meds list - the
really important one - not very well.
Mine didn’t have my new eye meds on it. And it was too complicated. Need to simplify. Since I’m absentminded, I leave on it some
meds I no longer take (with a line through them.) Just in case somebody wants to give me an Rx
that once caused me trouble. Or one I’m really allergic to.
Take your meds listeverywhere including to
the doctor’s office and drugstore.
The doctor and the med assistant may need to scan it (It’s amazing how office computers
eat half or all of my file including pills & meds (like the ones I don’t
dare take.) If you drive, a current meds list in your glove box might be worth doing - might copy mine & put it in today. And keep a current one in whatever bag you take with you for a hospital test, especially outpatient surgery.
Take a list of the
questions you should ask (especially if I’m too
sick to pay good attention)
What’s wrong with me?
Why do I need this test. How much will it cost?
why a chest Xray, should have mentioned I’ve had a five-year pneumonia shot.)
What medicine(s) are you giving me? Is it expensive?
Is it a pill. Or pills? How do I take it (some pills I can’t take) He
explained. (More on that later.)
What does it look like? He showed me the little packs
Is it a steroid?
Since I took them, I’ve had
reasons to wish I had asked that question!!
Write down what he says.
If you’re as old as I am, you may hate having
your daughter go in with you to see him, but my daughter’s writing is readable,
MINE? NOT SO MUCH. And she asks
intelligent questions. (If your doctor
looks AT AND TALKS TO your daughter instead of to you, you can ask plainly to
be spoken to directly. (Some doctors have not learned that.)
It’s hard to make myself ask these
questions. But I know asking could save
me. Drugstores, and busy doctors, even
mine, are not perfect .)
In the past I have been sent home with the wrong
labels on pills. (Luckily I knew what they should look like).
I have also been sent home with wrong,
incomplete or missing instructions. Some
pill bottles are so small that instructions are on a sticky flap that falls off
way too soon. You may have had that experience.
Yes, people even a lot younger than I am, take
off glasses or contacts, and just think
they know which bottle is which. And
yes, some people can’t afford the glasses they need to read microscopic drug
store label print. A friend bought a 4-inch flat magnifier for those occasions.
want to take the wrong pill, or take any pill four times a day instead of one
I have a
shiny red folder for each doctor for all this stuff. It cost almost nothing. Do it.