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.
I’ve always had allergies.
When I was a little kid they called them colds. As an adult, only time I
didn’t have them was during my wonderful 19 months living at a California
beach. I moved; they came back. The
doctor was baffled. They seemed too bad to be allergies.
Then I moved to TX. And for the first time, the whole nasal
thing got infected. Antibiotics. They
cut the infection, not the endless sneeze/cough, runny nose.
The second year, it was worse. So much coughing and sneezing I
couldn’t drive. The doctor said he'd
send two scrips - each day I'd take fewer pills, and in a week I'd be done. I got two tiny boxes.
When I unwrapped the fashionable “pacs” the first was a Prednisone
compound. No. Uh-uh. Back in the box. But I was miserable, so I
took them. The antibiotic was amazing. The steroids were not. The
coughing kept on until the tissue showed a few traces of blood with the cough.
After several phone calls, I got the promised cough syrup. Not
enough help. The doctor’s office called and asked if the meds worked. I told
them I was at the same place I would have been without the meds.
Mom used to say after disappointing
"Either this stuff is no good,
or I would have died without it." Hmm.
About a week after the steroids were all gone, the Surprises
Suddenly I got red areas sort of like athletes foot ON my palms.
(I have blepharitis- Try taking care of your eye infection with that on your
palms! Put on clotrimazole.)
Same week, I had too many errand in the hot, hot car and no place
to park in the shade. When I got home, the sweaty area at the edges of my
hair, and on my neck itched wildly. I got patches of streaky itchy hives and even
a couple of bumps. The next day, I still had big itchy red areas when I woke up.
I remembered a dermatologist’s words when I was very young:
Apr 04, 2017 Author: Robert A Schwartz, MD, MPH;
“Cholinergic urticaria is one of
the physical urticarias brought
on by a physical stimulus. Although this stimulus might be considered to be
heat, the actual precipitating cause is sweating.”
I changed my routine, stayed in during most of the day .But
I had to make a decision:
I’m due for the next Prolia injection. Prolia admits even on
the web site, that it CAN affect the immune system. Feeling nervous, I
cancelled the Priola for now.
Steroids should slow the immune system when it over-reacts to
something simple. But HOW long
until the immune system is BACK TO NORMAL?,
Go back to the doctor? I
don't want to be in any med waiting rooms with sick folk. I wear a med mask to
the grocery store. Scared? I
didn't go to Starbucks for a month! And when I did get there, suddenly a
big group came in. I was too freaked out to stay
Home –lifestyle? I can't
get the indoor humidity below the upper 50s, which is not good for respiratory
problems. And I itch.
Ever since I moved here, I've had a silent, internal battle with the yard maintenance crew. More than half of every Friday, their machinery, some of it oversized scatters dirt and whatever pollen for my allergies to inhale. So I stay indoors.
This morning, after a month of scary allergies and scary meds, I decided I had to walk. So I rushed out to try for one lap before the yard guys would arrive. I was almost back when I saw a friend coming with her walker, and heard the hated sound of a yard man starting some machine.
When friend and I started to chat, the machine was silent. She went on. He didn't start his machine. We exchanged Good Mornings, and he didn't start the machine until put my allergy mask on and was well past him. After I got inside, I was sure he waited out of courtesy for us. One kindness like that can change my view for the day. (And once before one of the crew had shut down a machine when I approached with a tissue over my nose. Sad how I forget those kind gestures.
The U.S. Food and Drug Administration today approved Nerlynx (neratinib) for the extended adjuvant treatment of early-stage, HER2-positive breast cancer. For patients with this type of cancer, Nerlynx is the first extended adjuvant therapy, a form of therapy that is taken after an initial treatment to further lower the risk of the cancer coming back. Nerlynx is indicated for adult patients who have been previously treated with a regimen that includes the drug trastuzumab.
My allergies were calm this morning just long enough for a question to rear its ugly head.
I've been checking the calendar so I won't miss the Prolia inj at the end of this month.
And I actually want) to take the next bone density test, but secretly plan it for after Prolia inj #4 has had a chance to work.
The question I shouldn't face right now is: What if that right hip isn't better?
I've always been sure that I believe in Prolia. But there are plenty of things patients and doctors believe in that turn out to be.....not infallible.) I like Prolia, because I am impressed with how it works in the body. Short version - it does its work and then goes away.
The pills on the other hand grip onto one's bones and may be hard to dislodge. Like Bondo on a hole in your car (ask your boyfriend. He may give you a lecture on cars, but he'll probably like that better than a plate of pancakes. Okay, enough on Bondo.)
The doctor has already hinted that because I already had osteoporosis when I started Prolia, I may have to take more Prolia than these four shots. Will I do that?
This question will not be answered until Prolia shot 4 has had a chance to act, and the density test results are out. Probably in August.
Now my fear of authority figures is in play. He's the authority figure here. I feel guilty if I wait for the density test. And I still tend to think that if the doctor wants more Prolia, I'll have no choice. That can be a dangerous attitude for a patient to get.
This was going to be a 3-sentence post. Oops. At this moment I don't know. If the hip isn't better, I may agree to more Prolia. Not because he's an authority figure, but because I trust him and want him as my doctor.
I still remember that first day in his waiting room when the woman said, "You have the good doctor!"
The other day reporting to a hospital for a chest x-ray (for allergies, big cough) I remembered I will be getting the two-year bone density scan that Medicare allows to find out if the Prolia I take actually works.
I kind of remembered the entry area and felt it's the same place I got my original density scan. (Can't resist telling people that only my hips were scanned because there's lumbar fusion metal in my spine.)
Seems like the very same day I decided this was the place, I also ran into an online recommendation that we do go to the same place for a second scan. This makes perfect sense to me - same room, probably same apparatus, same method and so on. Most important to me: May be the same Radiologic Tech as before!
The original scan of my right hip (the one thus diagnosed with osteoporosis) was a very uncomfortable process. I just lay there and took it til it was over, then the Tech had no idea why I felt so uncomfortable. I want more info on why that happened. Especially if it hurts this next time.
As I've mentioned, I have a funny hip the won't do everything limber people do.
I want my next (maybe final) Prolia before the scan. Let Prolia give its best shot to this hip; then we'll see.
Saw the doctor yesterday. He told me that Prolia is a two-year program. I decided not to worry about it. Then he said since I had osteoporosis when I started, I might need Prolia more than this two years. Then I DID decide to worry about it.. But so far, so good.
But is it working? He will send me for a 2nd year scan. He had no definite answer on why the first scan was so uncomfortable. I do know I have a funny hip....will ask tech during next scan.
I told him I had no effects from the fall to my knees when the kid in the pickup was crowding me up against the sidewalk a couple of weeks ago. I need the scan anyway.
The very weird discoloration after getting overheated, last week and the "full-body warm flashes" also seem to him normal (not sure if that's for my age instead of Tamox.)
I'll check with his office next week to see if I'm to get the bone scan before this 4th Prolia, or after. It may not matter either way. Am kind interested to see if that right hip is significantly better.
Tomorrow is my oncologist apptmt. (I really like him.) Prolia is bound to enter the conversation. Two days ago I gave billing office entire Medicare deductible for year for Jan. Prolia inj.
I hate the things I don't know about Prolia.
I don't know if the people referred to my dentist for ONJ were taking Prolia or the pills
I don't know if Prolia is even strengthening my bones, since I haven't had another scan
I don't know if science has learned more about possible effects on the rest of my body
I don't know if there's more research since the 2012 NCBI article I've saved
Have enough women been saved from fracture?
I don't know whether to have the next Prolia injection. I'm sure Dr. will want me to. He doesn't want me to fall and break a bone.
Speaking of falls: Mayo Clinic has put out much info on balance problems. They focus a lot on inner ear problems, and their balance team. Physical therapy has done me much good without a team. Balance problems can make me fall, and Prolia may/may not keep a bone from breaking.
OTHER THINGS MAKE ME FALL and RISK BONES
Muscle relaxant pills and strong pain pills
Dehydration fainting. 911 tech made me drink a bottle of water
Bad sandals with soles that's won't let me turn on smooth floors - almost fell
Bad shoes poorly made - my feet slide around in them or out of them
A little vertigo getting out of bed or off exam table at times (but I haven't fallen)
Mild vertigo but I haven't fallen if I suddenly look left and down.
Careless motorists (some but not all young) backing up without looking
Sudden changes in sidewalk or street or hallway floor level.
Sitting way too long and getting up stiff
A cane hooked on the nightstand for night walking
A chair near bed holds my flashlight
Some neat sox with extra padding if shoes seem too loose some days
Giving up wearing heels.
Remembering to pick up my feet since I need a "throw" rug in kitchen door
Using the railing on stairs
Not using stairs when a heavy bag unbalances me
Shout if necessary, bang on fender when careless motorist backs toward you
Walk as PTh told me - weight on f'wd heel, feet not too close together
A very smart lady lawyer once said in an article on falling:
The worst cause of falls may be the FEAR of falling!
I'm sure that's true, because physical therapy had to cure my fear of going down stairs.
"In Bold Move, FDA Approves Cancer Drug For Any Advanced Tumor With Genetic Changes" Forbes Elaine Schattner
I almost gave up on this article (which was on Twitter this week) because I'm not familiar with the disease types that may be helped.
But the writing is so clear and important that I marched through the first two paragraphs. And found the WHY of this important turning point:
"It suggests the agency may be ditching an archaic system for classifying cancers based on body parts—like breast or liver or colon cancer—and instead will focus on molecular aspects of malignancies, qualities that render tumors
vulnerable, or not, to targeted drugs."
We're talking about Keytruda. And we've arrived at the possible problems and considerations;:
"The FDA cites data compiled from five non-randomized studies that support this drug’s effectiveness in various tumor types." Generally, I hesitate when I see the words non-randomized studies. Then: $Cost. Big. And high toxicity. Then two things I would hope for if it were my tumor, my body: physician's judgment. And appropriateness/accuracy: "Distinct ways of checking tumors for these abnormalities could yield variable results." Yes, a tough road, tough decisions. And I remember something beautiful I retweeted this week: with apologies to the original writer, something about the patient being the only one who knows all that's really going on in his body.
Once, I was referred to a doctor who just did not like me. He did send me to Pth, but at the end of our awkward hour, he informed me that:
"You're not good at saying what's wrong with you."
I thought he was supposed to tell me what's wrong with me. But I think I know what he meant; Describe some pain, something that will tell me where to start, something you want to do but can't. When I was tutoring, I remembered a girl I knew in college who drew muscles and whatever on her own skin as a study skill. I suggested at a tutor training that there might be a place for that when the tutor and the client didn't speak the same language,
Now I found this article thru Twitter.
Show, don’t tell: how visuals improve healthcare visits
The banner of the article was just very simple line drawing, like a smart kid could draw (of a doctor's office. BINGO. I wanted to draw too-tall waiting room chairs and how they cut off my circulation. But the bylined author, Katie McCurdy is not about furniture, she's sharing how pictures can give a trainload of our information to the doctor - and in a picture of how one symptom, one day, one weather change may cross-affect other ills, other tests.
McCurdy has drawn an elaborate time line chart; symptoms, felt or diagnosed, overlaid on each other day by day I see this as valuable for so many reasons - each day shows a relationship of symptoms, so if there's an effect between two symptoms, it shows. I hope you can find the article to see how this looks: with one major problem in pale color, the others can be line drawn on top of it. Tests and other affecting factors can be written in the margin.
If I could learn to do this with my colored pencils -
it might take the place of even an hour of talking to the doctor.
He could see for himself what aggravated a pain, affected a test.
A help for people like me - a lumbar fusion that affects arthritis and circulation and more... a dermatitis affects my eye infection; and do my sinuses also affect my eyes.
Dr. Sarabu, the other author, is a pediatrician. He understands dealing with a kid's vocabulary, including scared vocabulary. We might be surprised how kids can draw the hurt times and place - just what doctor needs to know. And Yes, adults have scared vocabulary days. I sometimes do, and did when that voice on the phone said "cancer." He also mentions how visuals can help the doctor. (So we don't feel funny bringing in these charts and pictures.) There is so much more covered here. Including a reference to " a long history of surgeons adding paper drawings to the chart to better describe the details of the surgery they performed."
Even if we don't chart (I don't,) McCurdy shows us her very simple "paper doll views" that we can do. One front view sketch can show where it hurt Monday, one for Friday. a different one for Wednesday. Could show ailments like Arthritis that stab Tuesday morning, then disappear for days. She has a photo of how she arranged those paper doll "day" sketches in order before the doctor even got into the office. Did this work for Katie and the doctor?
"I felt that she heard me,
and she ordered a bunch of tests
based on the symptoms I was having."
There is even a worksheet you can copy to start your own "record."
I see this as a way to "engage" our doctors and to show that we are and have been engaged. (Medium) @Medium https://medium.com/@katiemccurdy/show-dont-tell-how-visuals-improve-healthcare-visits-1b994f7fd90e