I have been speaking with them. I'm wondering if it's the best way to go...to find places in Spain(for instance) to get affordable LU-177 treatment....and also since I'm in South Florida...it would be the closest flights pretty much. I had been told about places in Mexico by my oncologist, but I cannot find any. I'm surprised it's not offered in Cuba. My oncologist says I need to move quickly on this...my PSA is doubling every month....it's up to 94. My mets have spread considerably as well ...although still in bones and a few lymph nodes. Xtandi has stopped working...I've done the FoundationOne test...from blood and it showed nothing that would help...no defects or anything. Did say that Xtandi would NOT work she says. We figured that out by my PSA going up up and away while on it.
Also best to get the PSMA scan here in San Francisco? I don't think my insurance will cover me out of network...but they might since it's the only hospital that is approved by Medicare to do the procedure (actually one other)
She says I need to get moving. I scheduled chemo (again) starting next week, but if I can get a definite source for getting LU-177 I want to forgo on the chemo...I already know it sucks and the good it did was very short lived for me.
gJohn
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greatjohn
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In this forum you will find posts reporting that Lu177 therapy is cheap in India. For your budget plans: you will need at least two cycles of Lu177, maybe more.
I was liking the idea of India because of the budget, however I am afraid the long flight would do me in going and coming a few times. I have been there only once in the past and it is a very long flight.
Dr. Kratochwil will treat you there: clemens_kratochwil@med.uni-heidelberg.de
Then ask your travel agency to get you to Heidelberg and back. You fly to Frankfurt, catch the train from the airport's train station to Heidelberg and then get a cab to the Hospital.
Expect about 15.000 Euros or 18.000 USD for each of the two or three cycles.
I just got my genetic testing back from foundation one with their blood test. It showed no defects. And nothing that can be used for treatment. She said it did show that Xtandi would no longer be any good for me.
John, do the chemo, soon. It will buy you time to lineup Lu177 therapy. Now isn't the time to "wait and see."
greatjohn, I didn't see anyone reply to your PSMA test question. My husband was the last patient in phase II trial of F-18 DCFPyL at Stanford. It looks like Stanford is still in phase III. My husband paid nothing. From what I could see in exclusions, I don't see where you would be excluded. My husband's scan was zero cost to us and happened quickly. Stanford ran the 68Ga-RM2 right after the DCFPyL, but it wasn't required. I have a contact if you need/want one. Name is David Marcellus. Of course, this would be good for you only if the Lu177 doesn't require the 68-Ga.
Hello greatjohn, there is a clinical trial in Houston with LU177 at Excel Diagnostics. You might see if you fit the criteria. They also offer PSMA scans through another clinical trial. Here is the link: clinicaltrials.gov/ct2/show...
Hi! For my father i was thinking about Lu 177 in Istanbul. My husband is from Turkey and we lived there for 10 years. We talked with Istanbul Onkoloji Hastanesi and their price was affordable (around 5000$ for round + hospital room for 2 days and etc). I hope that when time come we will get in clinical trials in Russia with insurance money (trials will start this summer). I think there are few more hospitals with Lu in Istanbul, but there are probably much more expensive. If you interested i can find doctors e-mail.
Update for price in 2021. It is 4000TL = 5300$ for injection. You don`t have to stay in hospital for night. And price for 68 GA PET is 8800 TL = 1100$. 6 weeks between courses.Dr. Levent Kabasakal (i guess it is better to direct write to him)
One of the foremost CaP doctors in the US told me he is quite sure the 177 Lutetium treatment will be approved in US sometime this year. He said "It will be a game changer". This gives us hope for serious help in our fight. (24 years for me). Sorry, but I can not divulge his name. Dakota Don
yes, I have. That being said...I am leaving behind (because he can't travel) a partner/recently turned husband who has Lewy body Dementia. I'm going to have to have someone keeping an eye on him...so I really can't be away too long.
In Europe you will find PSMA Lutetium treatment available in Helsinki (Finland), Innsbruck (Austria) and Bad Berka (Germany. They all come at significant costs. In my experience PSMA Lutetium works best in soft tissue and not as well with bone mets. Traveling during covid19 has its own set of problems.
well...your reply saying that it doesn't work well in Bone Mets is new to me. My oncologist thinks I will be a good candidate...It's just spread from one spot on my pelvic bone to my clavicle, and a couple on humerus and femur. They are very small. Now I will do some more research about this. Thanks for you imput. The places you mention are all very expensive (especially when you factor travel and stays there)...which is why I am looking into Madrid and also Istanbul. And, on the back burner, India. I wish there was something closer...I never liked LONG flights...and now I worry they will do me in! I've been to India so I know how far it is from U.S. east coast. Thanks,
Hi John, I do know the PSMA is important to know if your cancer will accept the isotopes.When I wanted to go to University of Heidelberg ( I choose them because as I understand it they are the ones who developed the system ) they would not accept me if I did not do the scan. They wanted to make sure I tested high. In 2019 there was no one who would give me the scan . Reason I still have a prostate. Yikes. So I convinced the Germans if I tested low there I would just go home. They agreed. After testing Dr Haberkorn said I tested very high and they would melt my cancer like butter in the sun. Eight months later PSA is >.01. So get the PSMA scan asap and arrange to go.
Dear r friend. Yes you need to move fast. Action mode like a James Bond etc. if you are delayed a few weeks to get a PSMA scan here I would not do it. If you choose Lu you can usually get a PSMA scan at the same site the day before the treatment injection. You should definitely have combined Lu177and Actinium225 because of your extensive bone mets. So that means you need a top notch site with good access and source of their isotopes. Germany and India both look like good options. I love travel in India. It is an education in humanity!On this site Paige20180 and charlesual have posted details on contacts and logistics. Or I can forward to you in PM.
Make sure you have documentation of COVID immunization for no ease of travel as well as protection.
Chemo unless you can’t do this very very soon. Please save your precious life.
If it’s not too much trouble to forward, The contact information and such in India would be very helpful. I am finding myself too tired to get much done most days.
Make sure you’re aware of the limitations of Lu177. It only works for a subset of men - less than half.. Ideally you would do a PSMA PET scan and a glucose (eg FDG PET) scan to confirm most of your disease is PSMA avid. In the TheraP trial they excluded a third of the registered patients based on that criteria, knowing in advance it wouldn’t work.
. If you have lesions that are not PSMA avid, then you are wasting your money on Lu177. A lot of unscrupulous operators seem to just take your money don’t care if you’re actually a suitable candidate.
To further elaborate on Stevecavill's cautions. Effective LU177 treatment requires the mets to be in the physical larger size range as the nuclear decay energy is emitted in random directions. Of those accepted into TheraP and who were treated with Lu177, 66% had a psa reduction of 50% or more.
So if your psa doubles each month and if you are suitable for Lu177, then you have a 66% chance of at least a one month benefit. I'm sure that isn't the analysis you wanted to hear, but this is a costly treatment, and Covid has reduced access to the best treatment centres very complex, so best be realistic.
Based on you being in Florida, maybe get a consult at Moffitt Centre in Tampa if you aren't already on their list.
John if there is a way to avoid chemotherapy, do it. I’ve been battling this horrible cancer for four years now. I initially started this battle with 6 infusions of docetaxel. The I went to other treatments including clinicals. Some of these clinicals were horrific. The side effects were the worst. My PSA got up to 250. I got to a point where there were no other options. My oncologist suggested I start getting my affairs in order. I also have a PleurX lung catheter that I have to drain every other day. I decided to try a last resort of six infusions of Jevtana. I did three. But right before the fourth infusion I came down with extreme body pain and high fever. I’m writing this from my hospital bed. My PSA is down to 85. But it’s not worth it to me. Life is precious but not like this.
gJohn I look forward to your research on the application to treatment for our condition. It seems to me that some of the anx of travel overseas along with the anx of the treatment itself can wear heavily on one’s psychy. Perhaps some of the the anx could be eliminated if you could find a couple of others to travel at the same to time. Just thinking. Don’t know at this juncture if I am a candidate have MO appointment in two weeks. Thanks
Hello greatjohn, I recall a few posts where members said if you go to India for treatment it is a lot less expensive than the others foreign sites. Therefore with the savings you can fly first class which makes those long flights tolerable....Hope all works out for you.... keep cooking....
this is true...but with Israel what I liked was they have you stay there the whole time. I think because of the Covid restrictions. You have a 10 day quarantine every time you fly into the country. Flying in once...doing a couple of months there...flying out....sounds better and because of less flights might not be much more money. The person I spoke with said if two treatments around 20K total...if 4 treatments around 40K total. So many variables. Some people have warned me about India. I just don't know!thanks,
Well it's a no brainer then.... I would pick Israel.....Great place to visit and it's Kosher...Hopefully it will get done and you'll be ready for summer play time outside of Florida....
We have a saying here in NYC...."Nothing like a Jewish doctor".....
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