Greetings from New Delhi, just finished round two infusion. In six weeks PSA 13.8 to 1.9. PSMA scan showed rib lesions are not visible , spine and pelvis you can barely make out their existence. I do still have a bright spot on scapula but it is reduced. We had side by side scans to compare. Also 3 weeks after infusion Dr. Zhang ( Duke OC ) had a genetic test run and the report to be brief stated tumor volume was too low to get a good read. Related to either early stage disease (not the case) or successful treatment, or stable disease...Pretty good stuff . Both of my doctors feel I caught it at a great window in which I was becoming castrate resistant with fast PSA progression but also chemo naive. I now have the plane trip down pat also....13.5 hours and if pilots and flight attendants do it routine really not so bad for us...The food here at the Westin Hotel is wonderful and it is a 10 min. drive in which they take you and pick you up....Infusion Monday, scan today which is Tuesday , Wednesday off , Thursday scan , fly out Thursday night and at my home south of Atlanta Ga. by 1;30 pm Friday. I could not wait for Lu-177 to become available in the USA but it is coming.. Duke will be opening some trials for early treatment with Lu-177 next year and I am sure other institutions will also...FDA approval on Vision I understand will be around 2022 , Tall Allen may have up to date information on that....I am not sure if SOC will want you to have chemo prior to Lu-177. I stopped looking into it when I had to scoot....If I can help with any questions I am here. I know it is daunting for some to travel but I can ease your transition and getting a visa is pretty easy....Blue Skies for now....
Keep fighting the beast.....
Sky King and Penny (woof)
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A good friend who passed from PSA was first going to Germany, when they refused him his 3rd treatment with LU-177, so he went to Australia - for the 3rd treatment. The results weren't as dramatic as yours (he had a lot of metastasis in the bones) but things were improving.
When Covid started up he couldn't get a flight to Australia and that was the end of his treatments. He passed away about 4 months later.
No , India does good job considering their numbers. I arrive at the airport and the hospital has a handler waiting . I use them because they get you past long lines. Once at the Westin I am in for the duration. They take me back and forth....more on logistics if anyone needs it..Dr. Sen will send a medical needs letter to you to print out to apply for your emergency visa and you have her request triple entry.. You have to go to Delhi airport website and request a travel exemption and that you get in a matter of minutes . ( again i could walk you through it) India takes your temp entering any business, and mask are mandatory. No problem getting back in either. Cost of each treatment is under 6k you will need 3. Depends on how you travel but business class is just over 4k. Once you learn the ropes of long haul it is not a big deal and coming home is much much easier...India requires RT covid test 72 hours before you depart US. It sounds like a lot but is not. Hope this helps. I looked at Isreal but they demand a 2 week quarantine. You can get your treatment during this time and you may be able to come back sooner since you are leaving and not staying.
My friend who comes over has had no problems. I get thick saliva for about two weeks and it recovers. I had extremely high uptake of PSMA and he did not so this may be the reason not sure, however no big deal.
Pilot 52. Great to read your update and pleased that things have gone so smoothly for you. A great outcome. Your persistence and research has paid off. Keep well.
This is all headed to the US I just could not wait. I hope most can wait but if you have too and have a strong PSMA scan it is good to go..Dr. Sen is very upfront and will read your scan and let you know if you are a candidate. She is a sharp cookie....Hospital is so so but you go for a 40 min infusion that comes from Germany , and then a few scans...Monday is a long day but the rest are a skate.....I started this travel because of some other people on the site. One cat is one week ahead of me in the rotation because I was slated for Isreal then changed. We actually are coming for our last infusion and will be at the same time... the first of the year. We are both pilots so New Delhi hang on! Dr. Sen smiled and suggested we come together.
Yes I'm sure with the positive outcome of some of the trials things will change in the US.
For us here in Australia PSMA and Lu 177 is virtually almost considered as SOC once you fit the criteria and can afford Lu177. Certainly PSMA's are just standard, run of the mill now.
I'm really glad things have worked out for you and great you've got a companion taking the 'journey' with you. Looking forward to your updates.
That would be me!! Just got my blood work back 2 weeks post 2nd treatment of lu-177. Went from 4.5 to .03. I had 4 bone Mets that are no longer visible on psma scan. I have no side effects from lu177 but I treated early and was still hormone sensitive. I suspect side effects are related to disease burden. Also I started lupron after a 14 month vacation so I’m not sure how much my decrease is coming from lu177 and lupron. Also Dr Sen reminded me is this isn’t a cure but it will kick the can down the road. Maybe years.
I'm not sure. Men who have had chemo already may simply have more progressed disease. Using it earlier may improve outcomes, as it does for most therapies. It may have nothing to do with the chemo itself.
Sen talks about chemo shuts down some pathways, and early into the disease your bones are able to withstand higher dosage without complication. They watch for WBC and a few other markers. I had no problem.
I don't know. Arguably, it reduces the cancer load which leaves less work for the radioligand to do. Or, it might weaken the cancer cells so that even a lower dose is lethal to them - much like ADT radiosensitizes PCa cells. But there have been no randomized comparative trials that I know of. In Australia, they are running a few trials combining Lu-177-PSMA with adjuvant therapies that they hope will improve its cancer-killing ability: chemo, PARP inhibitor., Xtandi and Veyonda.
Yuppers I am back on Xtandi, Sen said she saw a possible benefit for me but not everyone...One more scan and it is that great trek west tonight...!! i am glad I brought my Mac Air so J-O-H-N can work on his reading skill. you do good stuff brother. Blue Skies
Yuppers, however Tagawa at Weill Cornell has a early one shot trial ongoing. I almost got in. Zhang at Duke states they are opening early use trials next year so they are at least moving albeit slowly in that direction...
Only speculation on my part at this time..There is a lot of money hanging out there. MD Anderson still has not opened it's recruiting for early use..While it is rather obvious the potential benefit this drug has it will not change the environment as I see it..Think of it like the NRA does large clips and assault rifles. If we give them this they will take more..If you are PSMA positive when Lupron fails and you could take one shot of Lu-177 and keep the monster at bay for an indefinite amount of time where would the 12K a month oral medication end up? Hoffman in Australia wrote me and they are now doing clinical trials of early use. I could not get in(covid) and they do not accept non-residents which is understandable Ishita Sen here in Delhi loves this window of high PSMA signature and chemo naive. I will also note they have me back on Xtandi for a while because it seems to aid the process. My personal point of view is Tagawa is on it..Hit it very early with one large dose. Hoffman has some chemo naive patients 55 months out still undetectable and that was some time ago...I think kicking the can that far down the road gives hope for new therapies in the pipeline. Food for thought..here a very effective immunotherapy is being used and saved one of our own..Developed in Houston at MD Anderson..Advantage foreign travel . A funny story...on a flight over I was talking to a flight attendant . She was 59 , as we were talking she pulled her mask down and her face looked as if she was 30. She said the pilots head to the lounge we head to the spa's . They have skin treatments 10 years ahead of anyone in the states. Also I got 150 125 mcg levothyroxine tabs for 200 rupees(2.65) They ask me if I needed and pain meds or needed and patches....sorry for the long post sitting here at midnight just pounding away.
I do I will have to look....keep in mind you have to be PSMA positive on the scan but negative for bone or other mets on standard scanning...that is what knocked me out. I had been negative for two years on all standard scans including Axumin. I was six months out of my last PET so we thought all is good. Had a bone scan and boom lit up like the old X-ms tree. So I am here in Delhi
I do understand. I went to Munich 4 years ago, when the cancer was hormone sensitive and it had PSMA metastases only in the lymph nodes. One treatment made all the mets PSMA negative.
I hope they do a phase 3 RCT in hormone sensitive cancers, before patients get treated with chemo or the new anti androgens. Most clinical trials with Lu 177 PSMA treatment have been done in very advanced cancers.
I had treatment in Munich. The doctor you refer to is Dr Baum initially at Bad Berka and then from at Frankfurt-Wiesbaden. I am not sure if he retired.
I do not have any info about Lu 177 PSMA treating micro mets. I wonder about this possibility and also about the effect this treatment could have on the biology of the cancer. Perhaps it could leave behind a cancer which is mostly PSMA negative and it could not be imaged by PSMA PET/CTs.
I think and again not really important but have done a lot of reading..any tumor cell that has PSMA properties could be challenged . Go back to Hoffman and look at his success at chemo naive patients. One would think that the PSMA cells die. I do think the reason of it not being a curative therapy is cells that are not PSMA sensitive but this is not in my pay grade.
Understood, I think that is why Tagawa was excited I had multiple bone sites with strong PSMA signature and had been for two years negative on standard scanning. I just plodded along with a PSA between 4 and 6 with Axumin PET negative. If I would have had the PSMA scan early I could have gone in the trial which is a 2:1 ratio. Once we get the Lu-177 as SOC we will have access to more scanning other than the two in California. Maybe it needs to reach bone and this is advancement enough...That is what the trial is all about....Your case is interesting..He also is doing a AC-225 trial but I think that is for people who are failing at most other therapies . It is an alpha emitter which is pretty strong stuff but if you are falling off of the cliff it may come to your rescue. Blue Skies...and please do not take my opinions as anything more than a lay observer. I started all of this just a information I came across and my experience so far in my dealings . As we all know or should know cancer is highly personal and varies so much but there are some common denominators. Sky King and Gracie (woof)! Bored in Delhi
I completed the Vision trial, 6 infusions LU-177..At first it provided spectacular results, rapid PSA drop, nice QOL improvement. But by infusion #5 PSA was moving up again..and quickly returned to former levels..It's not a cure..It improved the mortality of trial participants by 5 or 6 months..Will the FDA approve it ? Maybe not....There are other SOC drugs and treatments that work just as well..
I agree totally about not being a cure. It seems that being chemo naive allows for higher dose setting and once again we all respond differently. On the approval Zhang at Duke who was an investigator said yes it was coming but who knows...what kind of PSMA signature did you have ? The interesting thing that happened to me is following my first infusion at 1pm I retired to the hotel. They were very excited on my two scans on the follow up that first day on medicine uptake. So I drank some water and had a few beers and dinner and went to bed. It was about 3 am when I woke up with a sensation of discomfort and a crawling sensation at my tumor sites. It was if the uptake was doing its job. Finally after an hour it calmed down some and I took a couple of Tylenol and Advil and it knocked it out. 6 hours later repeated and have taken nothing since. Just from my bodies reaction I felt we had hit the tumor sites pretty hard which was confirmed Monday on PSMA scans. Dr. Sen was excited for the first time the words came out very pleased . She did caution me when we started that I could respond then suffer the same outcome you did. Now she feels more confident we will continue to improve. I guess she is seeing the markers she need to see to feel this way. We are getting 3 infusions at around 320 mCi. I do get dry mouth the first couple of weeks but it gets back to normal with time..I think are own observations are important as long as we stay objective. This therapy is certainly not a catch all by any means but I see actual bone mets disappearing and my one large one reducing ...so progress is made..Blue Skies.
Do you know your mutations, did you perform Genome sequencing (NGS)?
"There are no germline mutation that looked to be directly related to a hereditary cancer syndrome, and the somatic circulating tumor DNA test did not pick up on any mutations either." This was a text from Dr. Zhang. This included 84 different genes. I was happy that the narrative that came along with this said I had a low tumor load either from early disease ( which was not true) or undergoing successful treatment ( had first infusion 3 weeks earlier) or I was stable.
my tumor burden was not evaluable.. MSI was not detected , I was explained this could change as tumor progression begins to advance but at this time not known.
Before treatment I had a high tumor load so the first infusion hit it pretty hard...I am so early in treatment with Lu-177 that we will just have to follow.
Pilot52, Thanks for your post. I am in Munich and can't get scheduled either here or any of the other clinics for at least 6 weeks. Dr. Baum is booked until mid-January. Seems like many Americans have discovered LU-177, thank God. Can you please send me the contact info for India. From your post, it's a third of the cost in Germany. More than pays for my flight. Thanks
My first trip I had everything fall in place and made it all happen within two weeks . I can help with some of the paper work if you decide to go...just private message me..
dr.ishitasen@nuclearmedicinetherapy.in ,,,,,Just e-mail Dr. Sen directly, she will answer you along with her admin. Manav ....You can get the ball rolling . Tell her you found the info on Health Unlocked..you can even mention her American Dad....private joke she will enjoy. that is up to you...Blue Skies ....
Thank you for posting all of this. Very timely in my husband’s case. He was just turned down for a Lu177 trial at Johns Hopkins. I am very interested in discussing this with our oncologist today. Would you please share the contact information for your oncologist in India? My husband has been battling the prostate cancer beast for 15 years and we are running out of options. An oncologist we have relied on for many years (not our primary in Kansas City) told us we have a short window now and should find a trial or travel for Lu177 treatment. Your post made it sound much less daunting. Thank you so much for sharing your story!
Ok Dr. Sen's contact info is in a post above. Go to private messages if you want me to talk you through. Then I will be available to help you with visa and airports hotel ect. once you land here with the correct paperwork they take you through the airport to the hotel. The hotel is nice with great food. Westin ...Blue Skies. I will be back in country Friday
I just reread all of your recent posts. My husband’s last bone scan (September 2020) showed minimal uptake in the spine, but back pain caused us to do an MRI, which showed cancer in multiple vertebrae. He has since had radiation to the affected vertebrae and ablation and kyphoplasty to T12. Would this preclude him from receiving Lu177 in India?
no, my friend had the same to his back and his pain is gone completely and has evidence of bone regen. we are actually coming over together in January for our last pop....two pilots , this will me a hoot.....
Thank you so much for your response. We really appreciate it. I am so new to this blog, I will have to figure out how to contact you if Dr. Kohli approves of this plan when we talk with him today. It helps our peace of mind to know someone successfully walked the path first.
I see Dr. Armstrong at Duke. As I try not to worry about tomorrow, it provides some comfort to know that I am being treated at a hospital that seems to one of the leading places to be treated.
Good advice. What would you say are the right questions? I feel I have been very proactive since shortly after my diagnosis. I don't just sit back and wait for the "Dr.'s orders", but I also know I can drive myself mad if I think too much about what to do, eat, take, etc... I came up with a plan to eat healthy, exercise regularly, sleep, pray meditate and try not to worry.
Hey Dude, not only that I am now a cowboy!!!! had Buffalo Tenderloin last night....!!Good to see you can still read.....just chasing a dream and loving life brother! Blue Skies
No I brought it up. You see I think they would be amiss to suggest something that may really help you and at the same time not understand if you are willing to travel and take on the expense. being a pilot she already knew the travel was marked off. I always let my physician know I am willing to travel and have the budget. I lost part of my jaw to IMRT. Chambers told me(MD Anderson 2015) the good news it had to come out. He asked did I want to have it done where I live or come home to the mother ship....I said I would go to the best person he thought...he did not hesitate...went to Bob Marx in Miami ...reputation is global and a really cool dude. Most people never notice I had it done...Point being if they said Lu-177 may really help you but it is a long and not cheap ordeal and you could not handle it how would you feel. Just let them know your capabilities . Some docs want to keep you but no comment on that.
I find your comment really interesting. Although I consider myself lucky to be doing pretty well after 12 years, I am a retired veterinarian and am constantly somewhat suspicious of solely SOC treatments for our problem.
Hi, I was falling off the cliff so I had some choices to make..you sound stable which is wonderful. I am projecting to kick the can down the road a ways and making decisions as things change with what is available at the time. Blue Skies
Also , SOC as we know is a cookbook. Knowing this and your options are always a plus. My RO is at MD Anderson, OC Duke and of course Sen in India. All three are open too what will benefit me not them or the institution..Blue Skies
If you happen to need a dentist Cosmodent is great a short walk from Medanta where I had my prostate taken from me. The guy is very honest and you have to put on those plastic bags that melt around your shoes like shrink wrap to go downstairs where they do the real work. Very modern and very reasonable. The other doctor there does cosmetic surgery there if someone would be so inclined, but I just wanted dental work.
Dr Sen and my onco at Medanta had me approved for Lu177, but I ended up going for removal and more vaccines since I knew they keep me stable. I enjoyed talking to Dr. Sen. She like my onco Dr. Ashok Vaid are some of the best of the best. They all know each other so will work together to give you the best care. Strange, but I kind of miss India sometimes. I have spent around six months on the ground there. Have traveled all over, and had a great time.
I have had 6 x Lu177 infusions in Sydney. I began with Psa 25 after failed chemo in October 2018. I had countless small mets in lymph nodes bones.
All soft tissue mets are regarded now to to have gone. But I still have some bone mets and its difficult for Lu177 to kill all of them.
after 2 x Lu177, Psa went from 25 to 17, hardly any reduction, then a bit more on 3rd, then Xtandi was added and by 4th Lu177 Psa was 1.7, and maybe a bit due to Xtandi, and Psa went to nadir of 0.32 at 1 year after first Lu177. Then 7 months later Psa was back up to 30 and two more Lu177 doses have reduced Psa to 7, and rate of Psa reduction has flat-lined.
Docs are now figuring out why and what they might give next, but Lu177 has not eliminated all my Pca. My PsMa scans show all my Pca is in bones now, but a few bone mets remain a problem, and are enough to keep Psa higher than wanted.
The response I have had with Lu177 has ben far better than chemo. But Lu177 is not known for giving remission in many patients. Its good for awhile, and then you cannot keep having more doses because of risk of damage to bone marrow and other organs despite the low amount of radiation to healthy tissue in the Theranostic treatment method. It is the accumulated level of radiation that is the problem.
Docs are due to confer today and will let m know soon what to do next, maybe Lu177 with a small % of Ac225.
But luckily I don't have to fly from USA to India to get each dose of Lu177, I can get on an old train from where I live in Canberra and travel 300km in 4 hours and its very cheap.
Hi Patrick, thanks for the post. Great stuff. Sen as well as Hoffman are somewhat more optimistic about Lu-177 administered before chemo in certain cases. For once I seemed to be a prime candidate. Also Sen had me put back on Xtandi. We just make decisions as options are presented to us. Would love a ride on the old train..Ac-225 is of course an Alpha emitter and much stronger. Maybe just what you need. Good Luck and stay in touch.
In August 2019 after 4 doses Lu177 up to May 2019, the follow-up scan and progress looked just fine, but my doc did talk about adding Ac225 to more doses of Lu177 if they were needed. At that time Psa was heading down, but we wonder if that was mainly due to Xtandi that I'd begun in April 2019. But Ac225 means certain dry mouth and maybe dry eyes, and both these side effects are now negligible after 6 doses Lu177.
I am due to hear from docs conferring about what to do next because Psa seems to have flatlined at 7, and some bone mets do have PsMa avidity yet remain active.
From posts I read here it seems many are getting a mixed response with Lu177.
The FDA is of course slow to approve Lu177 because its only passed stage 2 trials.
But maybe thy don't like approving something invented by Europe which disrupts existing therapies in USA, and if Lu177 was approved and became easily available, the doctors giving chemo would lose money, and doctors in US form a powerful lobby group which tells Govt what it must or must not do.
Here in Australia, if chemo fails, you are allowed to access Lu177, or anything else that might / might not work, but Medicare won't pay for it.
And if a drug for some other type of cancer did work for Pca, but was only meant for say breast cancer, Medicare would cover cost for the breast cancer patient but not the Pca patient using the same drug. That is of course, Garbage Behaviour by the medical system.
Its 7:12 am, and nice and warm, and I must get on bike to be back before today's hot weather forecast today.
Best of luck. Do we have lu 177 in usa my dad is receiving radiation injections so which one would that be..so confused. Brave !enjoy the travel and have some joy while visiting I hope. Sending good thoughts. Glad you chose this route xo
Tulane has a clinical trial in progress but may be closing at this time. I was not a good fit. I had essentially India and Isreal for immediate treatment....Blue Skies
A couple of travel logistics to India. Covit19 test is required prior to departure. Despite travel restrictions, flights to India are relatively full. Plan ahead. Dr Sen and colleagues step you through the visa process. Consigliere meets you when you step off the airplane and gets you through customs without typical lines. They put you in a taxi for a 25 minute taxi ride to Guragram. Thumbs up for Westin gurugram. 5 star. Treated us like gold. (A suite was $140/night) Personal car drops off and picks up to fortis. 5 minute ride. Think they charge $5/trip) Helps to pick up a local phone or an India chip for your smartphone. Hotel asks to look at an app called Aarogya Setu to check for contact tracing compliance. (Remember we are guests of India and not the time to ride on top of the train to see the Taj Mahal) Give yourself 3 hours prior to return trip back. Hotel gave us a late check out. Make sure you get the letter that says you had medical treatment for possible US customs dirty bomb monitors. I was flagged on my 2nd trip. Indian people are super nice. There is plenty of real India-poverty, pollution and Fortis isn’t the fanciest hospital but I’m very happy with Dr Sen and the Lu177 comes from Germany. I’m very appreciative and optimistic about this treatment option.
I am a (private) pilot, and have identified with the number 52, ever since it was assigned as my identifier as a volunteer fireman for 20 years, so...?
I was diagnosed at UCSF in November 2018, 7 years post RP, with several lymph mets along my descending aorta, in my abdomen. I immediately started Lupron and Zytiga, but then went to Bad Berka, Germany, May 2019, for one LU177 treatment administered by dr. Baum when he was still there. Though I had one small bone met on my 5th rib by then, dr. Baum thought one treatment was enough, without a followup Ga.68 pet scan.
I had terrible hot flashes that persisted, causing severe sleep depravation, so stopped the Lupron and Zytiga, May 2020. My Anchorage oncologist would only say, "its, your body, do whatever you want", when asked what he thought of me taking a vacation.
My PSA was and remains >0.02 on monthly tests. My testosterone has recovered from undetectable to 325. My PSA never was very high, hitting 8.5 upon initial diagnosis.
I have not had radiation or chemo , and never had any pain, but still have around 6 hot flashes per night ( much better than before).
Do you think I should try to get another scan, or anything else? or just wait and watch? I asked at UCSF and was told that I could not get a scan there.
You sound like you are doing great except for the hot flashes. How long off the juice? It can take several months for the hot flashes to subside. I do not see how a scan will benefit you but UCLA has them. You may just not qualify for one since your PSA is so low....I do not feel comfortable offering you advise on this. I just posted my story to let people know when they feel Lu-177 is an option how they might take the steps ....time should help as at seems to be now..Good luck ..sorry for my lack of knowledge on this one...
Have you gone back for a third treatment? I had 4 treatments in the Phase 2 trial in the US. It lasted about 2 1/2 yrs. PSA is now over 300 so I’m working with Dr. Sen to go start treatment there. Any advise on traveling to India would be helpful. Thanks in advance.
yes , text me direct and then I will give you my number. When you call have a pen and pad ready...Not difficult but somethings need to be done to make your trip less stressful.
Assuming that I get a negative CV19 PCR test result in time (test taken no more than 72 hours before my first-leg flight departure), I have planned to leave from LAX on United Airlines ($599 Round Trip) for New Delhi to see Dr Sen for the 1st time.
I asked for a 12-month 3-entry Medical Visa to enter India, but received only a 6-month 1-entry Visa, just a few days ago.
My 79 year old body is so weak and easily exhausted from 4 or 5 years of Testosterone deprivation, that the flights will be a challenge for me. But, I am working on it, with special help from our pilot friend. (many Thanks)
Hopefully, I will know more when I return to the USA. Thanks to all who have been sharing their experiences here!
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