NIH Funding and Me

As I’ve written before, I’m currently participating in a study of prophylactic radiation treatments to keep small cell lung cancer out of the brain.  IIRC, the current standard practice is based on a study from the 1970s where n was small.  I got randomized into the group that gets everything except the radiation itself; and once in a while I get a test of my cognitive abilities—probably something like the test that Trump misremembered, but more interesting.

I asked the research coordinator who’s working with me about whether the study might be in any danger; and she said that, although they’ve heard some rumors, it didn’t seem like the study that I’m in will have its funding cut.  That’s good news for me personally since I feel fortunate to be able to do my tiny bit to help improve human knowledge.

She kindly sent me a link to the study details (https://clinicaltrials.gov/study/NCT04155034?term=s1827&rank=1 if anyone is interested).  I didn’t understand most of it 😕; but I didn’t spot any of the keywords that might flag the study as too “woke” for the folks who want to keep the rest of us asleep.  (I had thought that the cognitive assessment might be controlled by things like socioeconomic status or educational attainment, but I didn’t see anything about controls at all.  Maybe that’s in a different paper.)

I guess that the particular study that I’m in is OK; but we still need to do whatever we can to mitigate the likely gutting, not only of HHS under the anti-vaxxer, but also of science generally, and even education itself.

Unless I missed something, every Trump nominee that got a vote in the Senate, without exception, no matter how wackaloon, has been confirmed.  Hegseth, Gabbard, Kennedy…seriously?  I see no limit to the power of Trump and the Muskrats to dictate whatever.  Our only hope seems to be the midterms next year…if we still have meaningful elections then.

I wish I were young and able enough to do something besides preach to the choir here on FtB.

The Next Treatment

I mentioned in a previous post that the cancer had returned and that I’d be getting yet another round of treatments.  The plan was to start four weeks of more aggressive radiation, twice a day for five days per week, and start another round of chemotherapy on radiation day 1.  That changed for some reason I don’t remember; so the current plan is to do just the chemo today, tomorrow and Wednesday, and then start the radiation and second session of three days of chemo on the 28th.

2024-05-06 13:30:

Here I sit getting my first of three days of chemotherapy.  I got started shortly after noon with some administrivia, three drugs administered from a syringe hooked up to the IV, and a bag of some drug that took about half an hour to drip.  Bag number two has started and will drip for about an hour; and then there will be maybe ten or fifteen minutes of more administrivia.  I hope to be out of here by 15:00.

Likely More Cancer

Back on the 12th of last month, as part of the study I’m in, I had a CT scan that showed what could be another bit of cancer in my lungs; and a PET scan about a week later confirmed that the lump was “hypermetabolic’.

Today, I had a bronchoscopy and a biopsy of the new lump.  Since that required general anesthesia and I have no one to drive me home and watch out for me overnight, I was admitted to the hospital for “observation”.  If my last two biopsies are any indication, nothing will be observed; and I’ll be on my way home by late morning or early afternoon.

I’m not sure when I’ll find out the results of the biopsy, but it’ll be tomorrow at the earliest, maybe not until Monday.  I have appointments with the radiation and chemo oncologists next Thursday when I’ll decide what to do.  At my age, there won’t be any thoracic surgery.

Update, Friday the 19th:  one thing I forgot to mention is that they put me in a private room, which was convenient.  Also, I brought my laptop with me along with my WiFi hotspot, so I was able to mitigate some of the boredom.

There was one interesting bit of news on NBC’s Today:  Israel, in response to the Iranian attack, refrained from cranking it up to eleven.  I was surprised by that.

Around 10:15 this morning, the doctor who had the authority to release me deigned to show up; and since, just like after the first two bronchoscopies, I had no unexpected, or even uncomfortable, symptoms; so I was out by about 10:30.  At 12:30 as I write this, I’ve returned home, unpacked, and checked my regular mail, e-mail, and the blogs I frequent; so I’m now ready to resume my normal life. 😎

I still haven’t seen any results from the biopsy, but I don’t really expect that until Monday.

Update, 2024-04-25:  it’s definitely small-cell cancer that has shown up again, so the chemo routine will be mostly what I had before, the same drugs that I had no horrible response to; although they won’t be able to treat the low white blood cell side effect in the same way, so I might be also taking antibiotics to help guard against infection.  The chemo doctor also mentioned the possibility of immunotherapy, but they’ll wait on that depending on how the first round of chemo goes.

I’ll be getting lots more radiation, though:  twice a day, five days per week, for three weeks, starting on the 6th, a week from Monday.  I’ll probably get the first three-day round of chemo that first week; and it’s because of the radiation happening on the same days that they won’t be able to give me the Neulasta with the drugs that goose my bone marrow to counter the white blood cell deficiency.

I’ll know more when it actually happens, but I don’t expect any of the awful side effects of chemo since I tolerated it easily the last time.  I’ll be getting lots more radiation, but still low doses.  I think I remember being told that the dose is similar to what you get with a dental x-ray.

If my reaction to the chemo is no worse than it was the last time, the worst part of the business will likely be the drive to and from the hospital twice a day for three weeks.  One way takes me about half an hour on the best days; and since they want at least six hours between the first and second radiation treatments on each day, it’ll necessarily be scheduled to put me in rush-hour traffic to the hospital in the morning and home in the afternoon.  On the three chemo days, I’ll probably just hang around at the hospital all day; I’l take my laptop with me and be happy as a clam.  I’m not sure what I’ll do the other days.

I’ll keep readers informed about what goes on.  I’m not looking for sympathy (which, as I’ve said before, I don’t deserve); but maybe some folks might like to know what they might be up against (although I’m a statistic of one, of course, so YMMV).

On the Cancer Front

As I’ve said before, I’m participating in a study of the effectiveness of prophylactic radiation treatments to keep small cell cancer out of the brain.  That’s currently the standard care, but it’s based on a study from back in the ’70s (IIRC) and n was small.

This study is random but not blind, so I know that I was randomized into the control group.  I’ll be getting everything except the actual radiation.

On Monday, I had some blood drawn and the nurse who runs the study at my particular hospital gave me the test of cognitive abilities that, I guess, is the one that Trump misremembered; yesterday, I had a CT scan and an MRI; and today I had follow-up appointments with the chemo and radiation oncologists.  IIRC, the current plan is to do that every three months for a year, then every six months for the second and last year.

The blood work and the MRI turned out fine (I wasn’t told whether I’m thinking straight 😎 ), but the CT scan showed what could possibly me more cancer, this time in a lymph node.  I’ll be getting a PET scan on Monday, and then I’ll meet with the chemo doctor, and maybe the radiologist as well, on the 27th.  They might also want me to get a biopsy.  We’ll see how it goes.  I was told that, in any event, I’ll still be in the study and so still be doing my small bit to add to human knowledge.

One thing that occurs to me:  if Trump wins in November, this might be a good time to check out. 😎

The Latest Cancer News

As I’ve said before, I signed up for a study of the effectiveness of prophylactic radiation to keep the cancer out of the brain.

I got a call this morning saying that I’d been randomized into the control group, so I won’t be getting the radiation; but I’ll do all the rest of it:  CT and MRI scans, some blood tests, and some tests of my cognitive abilities (I hope more interesting than the test that Trump bragged about passing, but we’ll see).  The various tests will happen (IIRC) every three months for two years.

With any luck, I’ll be able to do all the tests at an outpatient facility that’s just a ten minute drive from where I live; but it’s unclear whether some special requirements of the study mean that I have to get the scans at the hospital, a 35 minute drive at the best of times.  I hope to find out more about that tomorrow morning.

I’ve had the first scans already, and I’ll get the lab work done and the first cognitive tests tomorrow morning at the hospital (but I don’t have to show up until 10:30, so that’s after the rush hour).

Update, 2024-01-07:  the test of my cognitive abilities that I took on the 4th was indeed more interesting than the one that Trump bragged about passing, but still nothing to brag about. 😎

I’m Still Here

Not much has been happening with me lately.

I had MRI and CT scans on Tuesday and both turned out OK, so on Wednesday I signed up for the study of whether prophylactic radiation is actually effective in keeping small cell cancer out of the brain.  The study is randomized but not blind, and I’ll find out on the 3rd or 4th whether I’ll be getting the radiation.

I’ve been a bit lackadaisical about finishing my C++ rational number library.  I think it’s ready to go, but I still have a bit more testing to do.  If anybody would like to suggest a change in the design, please do.

On the Cancer Front

The only chemotherapy symptoms I’ve had are hair loss, but that’s ongoing for this old fart anyway, just happening a little quicker; and constipation, but that generally clears itself up in two or three days and so is just an annoyance.  One serious side effect that had no overt symptom associated with it was a dangerously low white blood cell count resulting in an increased danger of infection.  To guard against that, starting after the second round of three days of chemo, they stuck something on my abdomen called a “Neulasta”, a small boxy thing that gives me a very slow drip of some drug that gooses my bone marrow.  Blood work shows that the white cells are under control.

My last drip in the hospital was yesterday morning; I had a couple of pills to take at home after breakfast this morning; and I took the Neulasta off at 4:00 pm today as instructed.  I am now officially done with the chemo.

The next step, which will happen on the 12th of next month, is an MRI to see whether the cancer wants to reassert itself in my brain, and a head-to-hip CT scan to look for any other occurrances.  Depending on how the scans look, it’s possible that I’ll qualify for a study of whether the usual treatment of prophylactic low-level radiation to keep the cancer out of the brain is actually as effective as some 40-year-old study suggests.  IIUC, the radiation carries with it a small but non-negligible risk of a bit of short-term memory loss.  I hope I made it clear that I’ll happily accept the small risk in exchange for the opportunity to help increase human knowledge in my small way.

The new study, IIUC, is specifically about small-cell lung cancer caught early, which is rare so that, in the earlier study, n was small, and so the data wasn’t all that good for my particular disease.  The study will be randomized but not blind, so I’ll know whether I’m in the experimental group or the control group right from the get-go.  Double-blind would be better of course; but when I asked the radiation oncologist about that, he said that there would be no “sham radiation”; and that choice of words suggested to me that there might be some ethical limitation on that.  (He didn’t say that specifically, so the “ethical” bit is just a wild guess on my part.)

I’ll be meeting with both the chemo and radiation oncologists on the day after the scans when I’ll find out whether I qualify for the study.  If I do, I will definitely sign up.  (I’m guessing that both Utilitarians and Kantian ethicists would approve of that decision, so it’s an easy one that’s not at all confusing.)

<aside>
After I got home yesterday, I took a short nap and dreamt that the chemotherapy guy asked whether I’d like to switch to his next-door neighbor who just got her “chemo license” and was looking for “nice patients” to start out with.  I sometimes flatter myself in my dreams. 😎
</aside>

Kona Trip Report–the COVID ain’t over edition

Shortly after my most recent posting, I read a message on one of the WG21 committee’s e-mail reflectors from a fellow who had attended the Kona meeting and thereafter tested positive for COVID.  Several of us thanked the writer for the warning; and several replied that they, too, have tested positive.

I successfully resisted the urge to say, “Told ya so!”; but I did add to my own reply:

There’s a big box hardware store (Home Depot) near me that sells N95s as protection against small airborne particles created when doing fine sanding or grinding.  You might find a place like that near you where you can buy good masks at reasonable prices.  I’m told that N95s are pretty good at protecting me from others, and very good at protecting others from me. 😎

I also resisted the urge to finish with something like, “That last bit is what the Ayn Randians don’t get.”