Should I buy a Geiger counter? - Advanced Prostate...

Advanced Prostate Cancer

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Should I buy a Geiger counter?

Cynthgob profile image
23 Replies

My husband is in the Lu-177 clinical trial. He’s on his third infusion next week. I am worried about possible contamination and have ordered a Geiger counter from Amazon. Am I over reacting? We follow the rules they have set up about distancing and sleeping in separate bedrooms. Thoughts? I have a granddaughter that is 5 years old.

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Cynthgob profile image
Cynthgob
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23 Replies
Tall_Allen profile image
Tall_Allen

Just follow their directions. It is rapidly excreted in the urine. Half is excreted within 4 hrs, and 70% within 12 hours.

ncbi.nlm.nih.gov/pmc/articl...

You might want to consider cancelling that order.

Savoy profile image
Savoy in reply to

I’ll second that.

leebeth profile image
leebeth

I would follow the rules and not worry beyond that. I am curious as to where he is receiving the Lu-177?

Cynthgob profile image
Cynthgob in reply toleebeth

The university of Chicago is doing a clinical trial on the Lu-177. Started in august .

leebeth profile image
leebeth in reply toCynthgob

Fantastic! I just reached out to our oncologist there last week. Dr Szmulewitz. I am sure the reason I haven’t heard back is the holiday. Hopeful we can get my husband enrolled.

Cynthgob profile image
Cynthgob in reply toleebeth

That’s the dr running the trial. He’s your oncologist?? I believe there are 20 in the trial with the idea that this treatment is going to be considered before chemo. Very little side effects with a drop of psa from 25 to 0.77.

Alesak514 profile image
Alesak514 in reply toCynthgob

Hello! I’m aLao in Chicago, and my dad sees Dr. Hussein at Northwestern. She just told us Lu177 isn’t happening at U of C anymore? Something about limited supplies of medicine? I’d love to get my dad on trial. Who is your doctor there?

Cynthgob profile image
Cynthgob in reply toAlesak514

That’s true for the time being. They are having problems getting the LU-177 from Novartis in a timely fashion.There are 28 in the trial currently in with a hold for now. I think they were perhaps growing too fast to keep up and want to be sure they can finish the trial with the 28 they have. It doesn’t sound like it’s a permanent freeze. And don’t forget the FDA is supposed to come through soon.

Nettie8200 profile image
Nettie8200 in reply toCynthgob

Thank you! I got on the phone with a clinical trial coordinator today and got lots of good information. We’re going to do Jevtana for now and have an appointment with Dr. Smulewitz and establish a relationship with U of C and make sure we can get started with Lutetium once it’s approved and offered as SOC at U of C.

TeleGuy profile image
TeleGuy

I used a Geiger counter to watch my radiation levels on a couple of my returns from Lu-177 treatment in Munich. I am much more conservative than the rules would have me be in either Germany or the US. I would rather sleep in another room for as long as it takes rather than needlessly expose my family members to my radiation. In Germany, they require you to be sequestered until your radiation level is below a governmentally mandated level. For those three days on the lead-shielded ward, they use vacuum toilets and they hold your waste until the levels decay; they don't want you walking around in socks because the radiation from your sweat comes off on the floor; and if you blow your nose you have to put that waste in a radiation bag. In the US it seems that they just send you home though I don't know for sure.

Think about how if you get a typical 7.2 Gbq dose, and eliminate 70% in 12 hours, you still have more than two billion emissions going on in your body per second, around 10 percent of which comes out of your body in the form of gamma rays. That's still in the millions PER SECOND.

On one of my returns to the US, I felt like the obelisk in the movie 2001. The customs and border patrol officers were so impressed with the amount of radiation I was giving off that they gathered around me took turns approaching and backing away, remarking that they got the highest readings they had seen.

I decided that I would return to sleeping with my wife when the radiation I was giving off was about the same as the background radiation at about a two-foot distance. So I measured the background radiation (set the Geiger counter a ways from you and let it just count the naturally occurring radiation to get this reading. This is the radiation coming from the earth and the cosmos). Then keep track of the radiation that you are emitting and decide when you think it is reasonable to return to sleeping with your wife. Note that I did not say "safe." Nobody can honestly say what is "safe," so again, what I think is "reasonable" is way beyond the guidelines. The bottom line is that it took about two weeks for my radiation level to be the same as the background radiation at two feet. And my gut feel is that exposing people to double the background radiation for several days should be fine.

If you get a Geiger counter, you can be impressed at just how radioactive your clothes can get. The counter I had makes a little tick at each emission it detects. When I held it up to my underwear I wore while sequestered in Germany, it screamed. (J-o-h-n this is your cue for some humor!) Just the couple of drops of urine that end up there was pretty highly radioactive. I just stuck them in a bag and re-measured in a couple of months. On an object, the radiation decays with the 6.6-day half life of the isotope. In your body, your excretions accelerate the decay.

Hope this helps you and is interesting to the others!

j-o-h-n profile image
j-o-h-n in reply toTeleGuy

I really hate to teleguy bad news.... but that was not the Geiger counter screaming, it was your wife when she finally saw you naked....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 12/24/2021 3:50 PM EST - Happy Christ's birthday tomorrow.

TeleGuy profile image
TeleGuy in reply toj-o-h-n

Oh thanks, glad you are engaged here again!

Savoy profile image
Savoy in reply toj-o-h-n

There he is!

Cynthgob profile image
Cynthgob in reply toTeleGuy

Thank you for so much information. You are right in the US they send you home! I wonder if it’s the same size isotope!! That’s what I’m going to check out. He gets six total in the trial.

Cynthgob profile image
Cynthgob in reply toTeleGuy

How many isotopes did you have ? My husband is slotted for 6!???

awb1 profile image
awb1 in reply toTeleGuy

How did you arrange your treatments in Germany? Do you mind sharing how much is your out-of-pocket (not travel, just for treatment), and is that per Tx, or for multiple? Thank you!

TeleGuy profile image
TeleGuy in reply toawb1

It was about €12,000 per treatment.

Cynthgob profile image
Cynthgob in reply toTeleGuy

I bought the Geiger counter and used it on the ride home from the hospital. The reading in the back seat was 4500 cpm. It’s only an hour home so I believe that’s fine and will live in separate parts of the house for 3 days. I’m glad I bought it just to make sure what’s going on.

TeleGuy profile image
TeleGuy

The term "isotope" describes what Lu-177 is, not the treatments. An isotope is an element (like carbon, oxygen, nitrogen, or, lutetium) which has one or more extra neutrons that make it unstable and therefore radioactive. For the treatments, Lu-177 is combined with a molecule that likes to attach to prostate-specific membrane antigen (PSMA) where it sticks and hopefully decays in time to kill the cell that it is attached to.

Tango65 is the success story where two treatments put him in a stable state for quite some time. I did five treatments until my PSA was undetectable and they recommended stopping. I did not go back on abiraterone. I suspect that you are in a trial that prescribes six treatments?

I'm an outlier going as long as I have with an undetectable PSA. One friend I made in the hospital is having similar results though I don't know his case particularly well. The docs in Munich said that the median time to needing something else is seven months. That is just their experience and I don' t know whether that number appears in a study.

Daddyishealing profile image
Daddyishealing

When all treatments are exhausted is this the typical treatment left ?

TeleGuy profile image
TeleGuy in reply toDaddyishealing

In the US, we are waiting for it to be approved in a post-chemo setting. There are clinical trials testing it pre-chemo. Outside the US it is being tried for hormone-sensitive PCa. In general, I think the earlier the better but access is the issue. That’s why I went to Germany.

Daddyishealing profile image
Daddyishealing in reply toTeleGuy

I'm glad you did. Hope you got great results !

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