I'm just wondering what people think about this? I've never been in any kind of a trial. I know the price is a lot less than the 40+K for the treatment in Tel Aviv...but the trial in Omaha Nebraska comes with expense and inconvenience as well. Being there every 2 weeks...(which means I will rent an apartment or small home for a few months instead of flying back and forth). **this could be nice for a getaway for the summer in South Florida.
Dr. "Luke" Nordquist seems to have a GREAT reputation...he's with the Trial. The Sheba Hospital in Israel seems to have a great reputation (in the top ten worldwide for hospitals.
if I go the with the Trial it will be an ADVENTURE because I will stay up there most of the first 32 weeks (over half a year) because flying up every two weeks sounds like a nightmare. This is the "trial" breakdown from them copied and pasted here:
SPLASH overview: Our site is in the dosimetry phase of the clinical trial.
Visits are Screening, Day 1, 2, 3, 4, and 6. Visit's then go to every 2 weeks for the first 32 weeks. Receive 4 doses of Lutecium 8 weeks apart. Treatment phase is 32 weeks long. Followup phase consists of scans every 8 weeks until progression along with every 12 week MD aptsIf faced with the decision of trialn here or treatment abroad
...what do the learned folks on here think?
Gjohn
P.S. I will be taking my Husband, Richard up to Nebraska or to Israel with me. His doctor gave the go ahead...but HE voted for staying in this country in case there's a problem from his issues.
P.P.S. Me relaxing with a book this morning while the mornings are still cool enough here in Ft. Lauderdale 🥳
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I read your posts toying with the idea....what did you decide to do? I'm leaning on doing the screening for the trial (I assume it will get me a free PSMA pet scan if nothing else)
Trying to get in somewhere in the States. With the covid protocols in place for over seas travel I'm afraid I would freak out and run back home. Omaha is much like my place of residence. You could get a place 20 minutes or so outside of town and be in the middle of nowhere. You might even find a place on the Missouri River. It's very nice there, my Vietnam vet friend lives there, great area.
You can get to Isreal and India with very little problem. I did three rounds in New Delhi during the height of the pandemic. Now with the vaccine it would really be less stress ..They take it much more seriously than we do...
it IS closer...but 1500 miles away from Ft. Lauderdale...Hence I would make a move there for 6 months...and make Omaha home for 1/2 a year! That part I really would look forward to.J.
I lived in FLA 12 years, got married there first time. Fla is most comfortable in the winter months, being hot and extremely humid in the summers. You get used to it tho. Get your ear fungus shot right off if you swim in the zillions of luxurious little lakes there. Scuba fun in those lakes and coastal inland rivers is simply amazing. I found Fla to be surprisingly conservative , much more so than I expected. Probably more progressive now than back in the 60s ( I hope ). I suspect you’d love it there. Much of it is vibrant and alive with nighttime social life.
I didn’t know about ear fungus shots. I use to get several painful earaches every summer in Fl. Finally started douching my ears with a 50-50 solution of vinegar and alcohol after swimming. My ear doc said I’d probably never be back to see him again. He was right. It works like a charm.
Yea ... I used those alcohol and hydrogen peroxide and alcohol and benzoate flushes and they worked fine. But being young ( then ) and invincible I skipped the rinse a lot and finally got the fungus. Everyone said get the shot and forgetaboutit .... the pain was excruciating , I got the shot and never looked back. Loved to dive those Florida small lakes, most were open pits to the deep water table filled with water caves. One I liked in Orlando was 90’ deep ...had dead cars ( and who knows what ) at the bottom . Yayahahahaya
Meeee toooo. yayahahahaya. Well ... I misread the body of your post as to that you’d be traveling to Ft Liquordale ... then when I saw your picture ( reflection on glass ) it looks like you are actually there and speaking of plane trips to Omaha , and back ( or renting in Omaha) .... so , me speaking of you doing some lake diving in FLA would be old news etc. you already know all about lake diving in the zillions of lakes down there. Yayahahahaya. Dunno if that makes sense ... probably still clear as mud ... just Lupron fog plus adt brain cell damage ...no biggie. Just trying to socialize ... not succeeding very well I guess. Sorry buddy.
Nal,this is what they sent me: (copied and pasted)
SPLASH overview: Our site is in the dosimetry phase of the clinical trial.
Visits are Screening, Day 1, 2, 3, 4, and 6. Visit's then go to every 2 weeks for the first 32 weeks. Receive 4 doses of Lutecium 8 weeks apart. Treatment phase is 32 weeks long. Followup phase consists of scans every 8 weeks until progression along with every 12 week MD apts
this is my day to "pray" and reflect. Richard's issues make the U.S. more desirable to his Neurologist....plus my health insurance covers me for emergency room and hospital stays from them...in the Country. I'd be "out of pocket" for anything that goes wrong in Israel....know they are much less expensive helps...but we seem to both have "expensive" issues...he got a finalized Lewy body dementia diagnosis yesterday from him...(sad)...and I talked with him about the two different routes. Nothing is every easy for me...because I carry along the issues of him with me wherever I go. Traveling to Israel with him (as they insist I bring someone) is daunting. We would probably drive up to Omaha...I'd stay the whole time and he could fly back at some points during the 6 months. Thanks for you insight. I'm still not accepted by either yet....so it 's all hypothetical. Hoping for the best,John (enjoy the day)
FYI, there is a Parkinson's Disease Support Group in Omaha. It might offer unexpected benefits and "connections" to good local things for you both while you live there.
If you do choose to transition to the Omaha option, this Lodging Guide of temporary/transitional housing options for medical patients being treated in the area might be of some use, at least at first, while you may still be "shopping around".
Finding a place to stay locally is a great idea wherever you go. I'm still scarred from reading a story about digestive side effects hitting while on the flight home somewhere over the atlantic.
Greatjohn! Your positive attitude sees you through . I think it’s great that you have two choices . For your partners needs maybe staying in the states is best .? I was born in Omaha . I left a 1 year old . It would be cool to be in the holy land . Whatever you two do . Much love and healing ! I like your taste in those relics in the background . Peace 😷
From my experience with trials including the LU-177 trial at Duke it was not "free" your insurance will still pickup CT and Bone Scans , blood work, and Doctors visits. I myself would choose the trial you are contributing to getting approval for everyone else plus you will know through the PMSA scan if you qualify so I would choose short term accommodations until you know if you have been accepted. Plus Omaha is a base for some other travel whenever you have down time. Good Luck in whatever decision you make. You may want to also get a second opinion for you or your partner at the Mayo which is a short 3.5 hour drive. I commuted to Duke from Asheville which was a 4.5 hour drive and usually stayed at a hotel on the front or back side depending on appointment times. Whichever you choose it will be an adventure.
Omg yayahahahaya yayahahahaya ... well it could be that too .... James Taylor. or ... I’m standing on a corner in Winslow Az, such a fine sight to see ......yayahahahaya .... all the turpine fumes leaking from my wife’s mountain of primo buds might be stunning me.
Yayahahahaya that was my surgeon that time but the hammer has put me in the E.R. three times. Guess we’ll both be back Tuesday for our final shot .... how good will that be. The hammer gets her last shot in early April ... it’ll be good to get that behind us.
The sim pit IS killer fun ...plus last year I equipped one of my Dji Phantom 4 drones ( I’m a licensed UAV operator ) with FPV ( first person view ) and it’s even more intense , like riding ,literally in real time, right in the cockpit of a quadcopter . Then I have oculus quest VR which has to be the ultimate living room , out of this reality , experience man has thought up yet. The places one of those can take you is brain numbing fun. Just goes to show ya that even crippled by zombie like ADT ...you can still find amazingly great workarounds that blow your doors off. In the hammers case ( wifey ) .... delta-9 reality enhancement can amplify those experiences by a magnitude while relieving her back pain in the process. Yayahahahaya. It’s all good.
🌻🌸🦋🌼🌈🌈🌈🌈
You are such a beautiful vignette - what a great pic of you . Shallow response but had to be said 😀
For what it’s worth, I would opt for staying in the US. Dealing with medical issues is hard anywhere, but you are adding a whole other level of complexity when you go overseas (different customs, different language, different currency, different food, different medical systems,...). Been there, done that (on a much smaller scale). It could be a grand adventure, but that may not be what you’re looking for right now, especially with your husband’s diagnosis. People in mental decline can become very disoriented and agitated when put in an unfamiliar environment. The Omaha trial (assuming you get in - what a great opportunity!) would seem to be the path of least resistance. Looking forward to updates.
Do you have a link to the clinical trial you are considering? The link mentioned by GP24 is for a Lu 177 PSMA trial with a different ligand than the one used in Israel.
Most of the clinical studies of Lu 177 PSMA treatment were done with Lu 177 PSMA 617 in Europe, Australia, South Africa, India, Israel etc. Some have been done with Lu 177 PSMA I&T, mainly in Germany at the Technical University of Munich. There are studies with a different ligand Lu 177 PSMA R2 being done at UCSF. The ligands I&T and 617 appear to have similar efficacy, but comparative studies of efficacy have not been done.
The FLASH trial uses Lu 177 PSMA PNT2002. I could not find preliminary data about PNT2002. Perhaps you could ask them if there is preliminary data published about PNT2002.
Omaha is much easier than international travel, we have been to Israel and Omaha. Israel is amazing, but a very long flight. Will this trial pay for travel and lodging? The Vision trial with Dr. Luke paid for our travel and picked up the hotel expense. The hotel they put you in is in the same parking lot and very convenient. My husband had to be there in person for the bone scan, ct scan and the treatment but was allowed to do labs at our home location every 2 weeks.
Hi John, did you end up checking Tampa? H. Lee Moffitt Cancer Center and Research Institution in Tampa, Florida. Dr. El-Haddad is the Principal Investigator. Starting May 2021
I went with Dr Luke in Omaha. Flying up on Easter morning for screening and PSMA pet scan. I wasn’t given Tampa as a Choice for the trial. It was Houston or Omaha.
IF you are assured of getting the treatment, then you should probably consider what if something goes wrong. Does Israel have more experience & therefore might be better or is this pretty much a wash with both sites about equal?? The point I might suggest is do not assume just because you can get treatment in the US it is better ..... the US is not as good as other countries in life expectancy in general (e.g., in general, Australians live about 4 years longer vs US citizens), so this has to come from somewhere. Just do not fall into the trap of the myth of "American Excellence" in all things ..... the data says the US is good at some things but Health Care is questionable, at least on an overall basis, so how does this apply to your specific treatment??? ..... you might actually get better care in the US because this is a study and the study principals will not want problems which might exclude you from the study & you would be better monitored. Israel might be better as you could be "found money" which they might want more of so a good result would be important as they would want more of this. COVID protocols are another complication. Nalakrats makes good points. Expense is always an issue. BTW IMO insurance companies not covering the legitimate costs of health expenses overseas (for which the costs would be less vs the same care in the US) makes no sense .... but this is the way things are in the US for-profit insurance system .... insurance companies will figure a way to make absolutely as much profit as possible ..... patient care quality, experience & competitiveness are secondary if they can get out of paying anything .... just my rant. Lots to consider here.
Let us know the updates! Great pic. Your store must have had so many interesting finds in it. I do remember a great natural ice cream place in Omaha, and something about a foot bridge walking path over a river. Halfway across you take your picture. Yeah. Real helpful info. 😏
Before I purchased Lu177 in Australia for about usd $7,000 per dose, there was a trial going on where I could have Cabazataxel OR Lu177, and nobody would know what they would get because patients were randomly assigned to one or the other. Before the trial began, I had 5 doses of Docetaxel which increased Psa from12 to 50, so I sure didn't want any more chemo, so I was referred by my onco to Theranostics Australia for 4 doses Lu177, at 8 week apart.
But if the trial near you has only Lu177, then go for it, because there's nothing to lose.
But maybe you can only be in trial if your PsMa Ga68 PT / CT scan shows you have high PsMa SUV that indicates Lu177 is likely to work.
If you were to take Xtandi for period of trial, you might get Lu177 to work better but the ppl doing the trial probably would not agree with that. But if you got your onco to prescribe it, and you didn't tell trial ppl you were taking it, you could sneak in a better outcome. If you got a better outcome than anyone else, you could then confess your sin, and say "See, adding Xtandi to Lu177 works real good eh?"
But if you do get a benefit with Lu177, just remember that when is over after the follow-up scan is done at 36 weeks after first dose Lu177, your Psa may be well down, and scans look good, but Psa may do down more mainly due to Xtandi. Mine went from 25 before to 0.32 at 12 months after I began Lu177. You get to Psa nadir and then Pa may rise to be back to where it was before you began Lu177 within 6 months, so more Lu177 may be needed, and I had 2 more doses. But then Psa went from 30 to only 7 and then Psa doubled each month when Xtandi stopped working, and by the time I needed to begin Ra223, Psa was 180.
But Lu177 got rid of all visceral mets, leaving only bone mets, some of which could not benefit from any more Lu177. Hence the move to Ra223.
I have no idea if the first dose of Ra223 on 26 Feb 2021 did me any good or not, but I have blood tests today to look at bone figures which should show bones are not getting eaten away by Pca.
I feel OK, able to do all things without bone pains.
So Lu177 gave me about 18 months extension to life. Cost for 6 doses was about usd $42,000, plus 3 x $500.00 for PsMa scans and these were partially paid by our Medicare. But Medicare did not pay for Lu177. Train travel of 300km from Canberra to Sydney to get Lu177 was cheap, and I stayed 2 days at my sister's apartment.
I hope all goes well for you.
Its raining and raining and raining here, and I can't get out on bike, so working in shed on tube amps, and enjoying time with friends.
I will find out about my PSMA testing when I speak more with them tomorrow and when I have an in person interview on April 8th. Followed by intake on April 9th (if all goes well on the 8th). I'm assuming one of the first things they will do is a PSMA Scan to see if I'm viable for the study. I was on Xtandi for the past 3+ years (now off for a month) so I am hoping that helps me "light up" on the scan as they say. Thanks Patrick.
As our former Denver Broncos QB Peyton Manning said “Omaha” ! Nice small city with excellent healthcare. The humidity will make you feel at home! . Good luck!
Dr. Nordquist’s facility is pretty fabulous. State of the art. His employees are wonderful. There’s absolutely nothing wrong with Omaha. We have firsthand experience.
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