I did my first infusion of Lu-177 on the 23rd of April, 2019. My PSA before the infusion was 16.02. Fifteen days after the infusion, it was 16.92 and another 15 days later it was at 18.40. I took a PSMA PET-CT scan yesterday and the results are as follows : All bone mets (in the skull, spine, pelvis and thighs) have INCREASED in size. Mets in the lung and left collar bone have DECREASED in size. No new mets.
I shall be meeting my MO on the 6th of June. I have begun to get a lot of pain in the skull, back and legs. Usually, an ULTRACET tablet kills the pain for about 6-12 hours, then back for another tablet.
Now for some help, please. 1) Should I take the next Lu-177 treatment due on the 25th of June or cancel it ?? 2) If I do it, what should I expect ?? 3) If I cancel it, what do I do next ?? Yes, I will be speaking to my MO on the 6th of June. But, I would also like to know from you guys what I should now do. Thank you very much.
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whatsinaname
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Thirty days is a short time to evaluate what is happening with the Lu 177 treament. When I had the treatment in Munich they asked me to wait 6 weeks before measuring PSA or doing a new Ga 68 PSMA. I think is encouraging that the lung mets improved¡ I will continue with the Lu 177 PSMA treatments and re-evaluate after the fourth treatment unless there is significant progression of the disease 6 weeks after the second treatment.
1. Listen to your oncologists on what you should be expecting.
2. Listen some of the folks here on their experience (but I would listen to your docs harder as they know more of your particular details and have experience with many many more Lu-177 administrations.
3. Remember that Lu-177 doesn't work with all forms of prostate cancer. If some of your tumors are of one type and some are of the other, that really sort of sucks.
You were asked to stop Eligard & Abiraterone. If you did that I can understand that the tumor continues to grow. Was the last PSMA PET/CT done in April just before the infusion? If not, the mets may have grown in the period before the infusion.
I would continue with the Lu177 or Actinium 225 therapy. After that your mets should be reduced but you are not cured and will look for additional therapies.
We had a post in this forum by Fuzzman77 about an immunotherapy in India.
Your links are very interesting indeed. I have been told that immunotherapy has not been very successful on prostate cancer patients. I'll check this out.
My husband was told that pain could be a sign that the treatment was working. We were also told that it can take 3 - 4 treatments before it really kicks in. I agree, listen to your doctor's advice. My husband was part of the Vision Trial. He just dropped out just before his 5th treatment as his PSA continued to go up and up. It is well over 200 now. His scans remained stable and was due for new ones but decided it was not working with the jump of 100 pts in 5 weeks! Even though it did not work for him, I encourage you to give it more time. His PSA was only checked every 6 weeks.
I do understand as my husband has tried everything available to him in the U.S. We, too, had great hopes. But, again, give it time, as I met a wife whose husband's psa dropped over 100 points after his 3rd or 4th treatment. It is scary and difficult to watch your psa go up. We totally get that. Prayers to all our male warriors!
Thank you very much, Reader456. My PSA has moved from 16.02 to 18.4, not a huge upward movement. But, the PSMA PET-CT scan shows an increase in the size of ALL the bone mets. That is what is troubling me.
Are you being treated in the U.S. ? The "Vision" trial? When they checked your PSMA factor did you have a good, positive response ? That's the key to Lu-177 being successful. Also, with any form of radiation treatment, as the cancer cells die, they release the PSA they were carrying and you can get a PSA spike as the cancer cells die off. At this point, scans are more important than PSA numbers..
I go in for an interview to see if I qualify to participate in the Vision trial this Thursday..My PSA is 1000 and doubling every 5 weeks This should be interesting.......Best of luck to you....
I am an Indian citizen based in Bombay. I am doing the Lu-177 treatment at Jaslok Hospital in Bombay. No insurance, no trials. I pay through my nose
Yes, I have been very PSMA avid and I agree with you that that is supposed to be the KEY to success with Lu-177. But, my PSMA PET CT scan says that my bone mets have increased in size
I wish you all the very best. I truly wish you get into the "trial" and things work out for you.
Hi Fairwinds. May I ask how much they are charging you for your Lu177 treatment in Mumbai? It may be worth trying b4 I have surgery? Would be really nice to not have to have surgery. I just didn't know if I could afford having it done in Germany with all the scans etc. My PSMA avid is much better and you can see that the cancer in the prostate continues to get smaller and less intense. Started at 28 PSMA avid and am less than half that now. Also, since you are close by I know that APCEDEN is being offered at Ruby Hall in Pune now. Slowly, but surely it is ending up in the private pay hospitals in India. I also know I am definitely not the only one that has benefitted. Best of luck to you. I have received such great care in India I just wish it was closer to home. On the other hand, APCEDEN has made such a difference that I have traveled all over India while I have been there. Dr. Ashok Vaid is a brilliant oncologist. APAC has the attention of doctors over there, I do know that, and I know I am not the only one that has had fairly dramatic results.
Thank you whatsinaname. I have sent an enquiry to Dr. Advina and think I am going to gove it a shot of they think it may help. If I come to Mumbai again maybe we can meet and at a good seafood restaurant that you know of. My name is Chris McCue by the way. I am the one on the APACBiotech.com homepage with my testamonial. I have 5 more vaccines in liquid nitrogen in my basement so will be in India one way or another later this summer. Have you considered trying a dual modality treatment? I talked to APAC and I know they all know each other and since Lu177 is not offered that I know of in Delhi yet they could coordinate together if I am a candidate for Lu177. When talking to Dr. Kumar he believes I have most likely created memory but that my cancer is probably mutating is why I can't get rid of the primary. Nobody knows for sure, and then in top of it I was cured with just TVAX cancer vaccines for kidney cancer with bone mets in 1996. That is why I ended up in India. Never, ever in my wildest dreams did I ever think I'd be thankful for having kidney cancer but the knowledge I gained from being fascinated by immunotherapy led me to India. I like Mumbai by the way. Surat is nice too!! If I come to Mumbai for treatment I will surely visit Goa and Karala.
My earlier plan was to visit Paris and France in September, 2019 with my wife. I have since dropped that plan and have now booked my tickets for Boston, USA and New England. The New England Fall Foliage Globus Tour. The best colors that one can see anywhere in the world So from the 20th of September to the 7th of October, I will be in the US. Eating steaks, chops, lobster, clam chowder, etc, etc
Goa and Kerala are both superb places to visit. The scenic beauty is awesome and the food is delicious. Laid back elegance. Excellent for relaxation. Take a few fantastic massages at ridiculously low prices
I know of some excellent sea food places in Bombay. Variety of fresh stuff with mouth watering preparations at 25% of the price in the US Yes, lets see if we can meet up in Bombay.
I'm so sorry that you didn't get an early response on most of your bone mets. Hopefully, the second treatment will do more. I think your lung met precludes Xofigo (although it shouldn't - but insurance probably won't allow it). Let us know what the doctors say.
I was surprised u stopped abiraterone until I saw the vertigo side effects. Perhaps 250mg with food plus vertigo medication might do the trick? Also I would continue the 3 month injection.
I would do all the Lu infusions (3 planned?) and consider Ac 225 addition or after the Lu 177 treatments.
But also take into account what your MO says at your next meeting.
Whatsin, Sorry to hear of your latest setback, I share in your frustration. If I may ask have you had any genetic testing of biopsied tissue?, my MO wants to identify any cancer markers before we decide on the next course of treatment.
Yes, SsamO, I have done genetic testing of biopsied tissue with Foundation One. My MO is currently in the US talking to her colleagues at Johns Hopkins and Dana Farber (where she worked for a few years). When she gets back (shortly) I will be meeting with her to discuss the report.
Thanks very much, SsamO, for your concern. I wish you only the best.
Hi whatsinaname, I'd continue Lu177 and have your next shot in about 2 weeks. My Psa was 25 before No1, then didn't go down until after No2 then was 17 before No3 then it went real low to 5 before No 4. But you need to have good PsMa Ga68 scans before and after every 2 shots to really know what's going on, and in my case I suspect soft tissue mets declined and stopped making Psa and PsMa, then bone mets didn't react much or even increased after one shot. But after 3 shots the soft tissue mets were mostly zapped and Lu177 then began in earnest to work on bone mets.
lu177 is a slow acting and fairly slow acting nuclide for Pca in bones. The faster acting is Actinium 225, or Ac225, which tends to act on everything more quickly but has more side effects than Lu177. Both these nuclides rely on PsMa avidity, something that docs can evaluate after each PsMa scans to work out if the next Lu177 is going to work. If the PsMa avidity is low, the image looks like cancer is not there, but where it is there and does not make PsMa then it might not be treated by any nuclide, except for Radium 223, Ra223, which goes where calcium is being absorbed to make bone mets, and Ra223 does not depend on PsMa production. Sometimes the Pca mutates to be something nothing much can treat so chemo may be the only thing left and often that fails, as it did with me before I began Lu177 last November. After No3 Lu177, doc put me on enzalutamide ( Xtandi ) so that is thought to make bone mets make more PsMa to attract more Lu177 and thus supercharge the effect of Lu177. I have not got my latest Psa results, but it was 3.7 2 weeks ago, so something is working, and I'll have my 6th PsMa scan soon to show what Psma avidity exists and whether I need a 5th Lu177 shot. My Lu177 treatment costs about usd $6,900 each, available in Sydney at Waratah Private Hospital. See the Theranostics Australia website.
I don't want to have Ac225, but may have Ra223 if it doc thinks it best.
I had pains in bones in 5 places, now mainly gone, except for a hip which another doc thought was arthritis, but I'll find out on next Wednesday when I see a hip&knee orthopedic surgeon, after having Xrays last week in addition to an MRI about 4 weeks ago. I did have EBRT to hip, 20 grey, maybe that has aided the killing of Pca cells in upper femur and in pelvis near the hip joint, but not close enough to enter the joint, which can be super painful. Mets are about pea sized. They show up well in MRI regardless of whether they are making PsMa. But hip MRI showed other things around joint have problems, tears in muscles, a cyst on a tendon, so may that's repetitive strain injury that is now affecting joint and preventing me cycling. Thus I might have to stay off my bicycle to let it heal naturally and slowly, and the whole area is a bit affected by past EBRT for primary treatment in 2010, and an extra 31Grey of salvation IMRT in 2016, so quite a bit of radiation hit surrounding areas around the hip joints as well as through the hip joints, maybe causing premature mis-function now.
I met guys who had Psa of over 100, and Lu177 did not seem to help them. The Lu177 would not have been given if doc thought it would not work. Unfortunately Lu177 just won't work when its predicted to work. Research continues to find out why, which is not a lot of help to men where Psa just goes high after a few shots of Lu177.
And once Psa goes high, and nuclides Lu177 or Ac225 and ADT and Docetaxel does not work, then there's maybe only Ra225 or maybe Cabazataxel Carboplatin, and expense rises and outcomes are less certain and side effects increase, so pain must be managed and a man has to make a dreadful decision if nothing is working. I could get my DNA examined to see if I am Brca2 positive and then there are PARP inhibitor drugs, but chances of it working seem low. Some men will have Pca that might be treated with Keytruda. A trial is going on in Brisbane with Lu177 + Keytruda. For a trial to happen, often the docs already know they get success, but need to have a trial to confirm that a sufficient number of men benefit if they meet certain criteria. There's a trial in Sydney for Lu177 + enzalutamide. The doc who recommended enzal for me got the Govt grant for her research to show it seems to work better than with just only Lu177.
I feel I am getting the best possible treatment to give me some quality of life without too much pain. But there will come a time when I'm in terrible pain and I am forced to quit, and prepare to say bye bye, But that won't be tomorrow, and may not be for 5 years, but could be in one year. I have NO IDEA how my future will be.
Cold wet day here, cleaning up in my work shed, getting ready for next repair job for a friend on a sound system. I gotta do something or I go a bit crazy.
We had discussed this on the board earlier. One of my doctors (who is handling the Lu-177) told me that Lu-177 and Abiraterone don't work well together. Therefore, for the period I am taking Lu-177, I should stop Abiraterone. However, other MO's told me that there is no evidence to prove that Abiraterone is either dangerous or helpful when taken with Lu-177.
Since no one knew any better, the decision was taken that I stop taking Abiraterone for the duration of Lu-177 infusions. To play safe
I guess logic is dangerous in these situations. But other than side effects, there doesn't seem like there should be much downside to concurrently beat up on the cancer with both lu177 radiation plus some chemical action.
Also, my MO who is currently in the US is going to ask her former colleagues at Johns Hopkins and Dana Farber regarding the same ( are Lu-177 and Abiraterone synergistic or not).
I should know in about 3 days what they have told her. Interesting, eh ?? Cheers, cesanon !!
Hi whatsinaname, may i ask what did your doctor told you abt Lu177 and abiraterone being synergistic or not. We are seriously considering Lu177 for our next option and our doctor said its ok to continue with abi.
A couple of comments. My PSA increased following my first Lu177 (from 1 - 1.3 ng/ml) but decreased following the next 3 Lu177 treatments. So my suggestion is to continue; too early to assess treatment. Prior to Lu177 treatment my 5 or so mets were all soft tissue and they did all regress and become less PSMA avid over time.
I took abiraterone+pred with Lu177 but stopped it after my third Lu177 because ? liver damage (serum transaminase levels went to 3-7 times upper limit of normal). I would take them both (Lu177 and Arb+p) and monitor your liver function tests carefully. I think Lu177 was more toxic to my liver than Arb+p. Yes it does hurt the pocket. All the best. Rob.
Well yes that is a reason. Although you can just plug away with both treatments and monitor with liver function tests.. For me liver function tests returned to normal 3 months after 4th Lu177. That is, after arb+p had been long since discontinued.
Amybody have any idea if the only place the PSMA PET scans show cancer now is in my prostate if Lu177 is an option? It has not shown in my bones now for almost 2 years but I am afraid not to have surgery unless I could try something like Lu177. At least I am stable and continue with primary tumor shrinkage while only on vaccines at short intervals but can't take them forever. Some patients do create a memory, but I have not since when I went to one vaccine every 3 months PSA started to rise. Onco in the states added Xtandi after all the tumors were resolved by APCEDEN, and then Keytrida, but when I stopped Xtandi for 2 months while off the vaccines PSA jumped too. I obviously can't do the triple cocktail forever and can't afford a vaccine every couple of weeks forever so something has to give. And we all know Xtandi will quit working at all at some point and probably Keytruda too so I have to either do surgery or try Lu177.
Although it has never shown back up in the bones when I did start the vaccines 3 months apart my alk phos went to 140 after 8 months so you can be pretty sure it is just waiting to attack again when it gets the chance. Maybe Lu177 can see what the PSMA PET cannot see? Alk phos is about 70 now so can't complain amd PSA is under 3. But we all know this thing is a monster.
Clarification.... have you not yet had primary " curative" treatment?
You speak of putting off surgery..... With the side effect profile you are likely having with all the treatment you ARE getting if you have not yet had primary curative tx I'd be inclined to look in that direction..... am I missing something here.
Hi Tommy. I tried everything that there was to offer and it still kept coming back. When I went to India Zytiga was already failing after less than 2 months. Testosterone had gone from 3 to about 80 in a couple of weeks. I had Sloan, Cleveland, and Rutgers all tell me sorry, there is nothing more we can do. I could have done more chemo but I figured what was the use. They would not operate on me because when diagnosed I was already stage 4 with tumors up into my lymph nodes in my neck. I understand why. Now they restaged me so I can have surgery now. It keeps shrinking but I know it may quit at anytime so I am inclined to have it removed. I did find out they have started doing Lu177 at at least 2 hospitals in Delhi also so will most likely have it removed, do the Lu177, and have more vaccines made while I am there. Actually the side effects of everything I am on is minimal. I can do pretty physical work again which only makes me feel better. I also did the Livestrong program at our local YMCA. it definitely helped. I just tire more easily and mostly I think it is the Keytruda jacking with my diabetes so bad. Considering where I came from I am pretty happy since I feel good most days. You wouldn't honestly know I was sick now to look at me.
I'm really sorry for your bad luck... on the plus side it appears that you have some fiscal resources that allow you to address the issue.... If I were in your situation I'd be definitively dead ( as it is I can't even afford to have my teeth fixed AND purchase a new used car.... it's one or the other.
How did it happen that you were Dx'd at such a late stage??
More my fault. The doc didn't want to do a PSA because the AMA was advising against them for awhile. I asked him several times and should have just gone to another doctor. Even after having kidney cancer b4 he didn't want to do a PSA. I think I had it at least for 15 years. I never did pee right again after I had my kidney removed 23 years ago so put that down to that but it appears it was the pc. I also suffered from severe migraines from the kidney cancer for 10 years and when it was removed they mostly went away, but I'd still get one here and there until the last couple of years b4 I was dx'd with mPC I was having them 2-4 days a week. When I started Lupron and had chemo they stopped so pretty obviously it came from the cancer again. My onco thinks I have had cancer for about 35 years now but my immine system was able to fight it somewhat. We will never know now. On the bright side yes, I have some fiscal resources so I am extremely fortunate to basically buy my own trial. Crazy, because not that long b4 I was diagnosed I had nothing and was living in an old mobile home and lived day to day and then our business took off. Pure luck as if diagnosed 3 or 4 years b4 I would have been unable to do what I am doing. Still tough sometimes because Lupron kicked my ass so bad I was literally bedridden for 18 months having 60 full body hot flashes a day and kept having kidney failure from it until we had a family meeting with our them 9 and 11 year old kids and we all agreed it was better to let me go. NOT a conversation u want to have with kids that age. First guy I met in India selling DENVAX ended up being a scam more or less and was a total jerk, but just because I was in Delhi I found APAC. Literally 2 days after I found them they got their license from the Indian FDA so I could have the treatment. I am not a religious guy at all, because I can't understand why good people get cancer but something or someone was watching over me. They were so nice to show me their lab through windows of course because it is a clean lab so I couldn't just walk in it. They told me later they knew the guy was scammong people with no license or authorization to even do what he was doing, and wanted to know they were the real deal. I knew enough about immunotherapy to know the guy, Dr Kahn was full of crap and told him that. Promised me autologous b4 I flew and then wanted to do just a blood draw without leukapherisis. It has been a crazy trip to say the least Tommy. Dr. Decker from Baylor was consulting on my case b4 they ended up being in collaboration with Dr. Decker and Diakonos Immunotherapy out of Houston. Hoping you can get an immunotherapy trial like I did 23 years ago that cured me from kindey cancer. I survived a marble sized bone met, and a 5.1 pound kidney cancer tumor back then just from vaccines. They have actually put a couple of guys in remission that were riddled with mets in their bones in the trial. One guy still is, and the other guy had to have more vaccines made at 5 years as it started coming back. Less than a dozen with mPC have been treated so far so they are having pretty good results and keep making the vaccines stronger as more is learned. They've definitely learned from me somewhat. I'm pretty mentally fried however. Somewhere on their website has the trial results from the 4 cancer indications they did it for. They are defintely next generation vaccines to be resolvong bone mets out of a few of us. Now they will be doing a National Indian Cancer Institute sponsored trial with 120 brain cancer patients using double loaded vaccines that were developed at Baylor. Crazy, have to go to friggin India because it is so hard to get a trial approved here. Dr. Decker actually put one dog out of 5 into remission from metastatic pancreatic cancer with the double loaded vaccines and it kept barking until it died of old age. 2 became stable and 2 it didn't do anything for. Same with mice. I can't believe sometimes I had to go to India when they know how to do this stuff stateside but in my case I would not have wanted to be in a blind trial since I was able to pay for it. If I was filthy rich I'd take anyone over there that wanted to go. I know enough that I believe if you can just hang on that new and better things are around the corner. 23 years ago they gave me less than a 1% chance of survival so you just never know. Hang tough if you can. I know it is sooooo.... hard though sometimes. It very well may get me anyway but at least I gave it my best shot, and groups like these have so much info. For instance, I am almost certain there was no Lu177 available in India until recently and I found out about it here. I looked b4, but had quit looking. Strength in numbers as they say.
Talk about good AND bad luck.... your business takes off ( good luck) which gives you enough money to treat the prostate cancer that SHOULD have been Dx'd years before ( REALLY bad luck)..... You are right that the world looks brighter for advanced prostate cancer sufferers in upcoming years..... but what they REALLY need to do is find a way around the draconian PRIMARY curative Tx's for PCA.... they are barbaric in their side effects and cause many men to undertreat or not treat it at all due to quality of life issues..... I myself might have BEEN cured had I been willing to do the ADT along with my Radiation... now here I am 7 years later and having to contemplate ADT because psa continues to rise..... Unlike yourself.... I am not really interested in fighting the "good fight".... I'd rather spend what money I have on a good time for the next five years and then bow out gracefully rather than spending my remaining money on fricken cancer treatment just to simply remain alive...... BUT... we don't offer that option here until one is so far gone that all quality of life is gone for months before you can qualify for euthanasia...... I have long felt that humans should be afforded the same dignity as pets......why make them suffer prior to being " put down ".... If you are terminal.... bow out before you have to suffer the indignities of advanced disease and relying on others for many of your day to day needs...... I'm going to end this rant now because I am very inclined to step up to the soapbox on this topic........
I completely agree with you that quality of life is far more important than just fighting to survive.
But, I understand that everyone is different and the situation might be different for others. For instance, if I had 3 young children, I would want to fight on, come what may. Fortunately, I am not in that situation.
Are you getting this treatment out of the USA or as part of a research study?? Not aware of this being available as a standard treatment...... sorry you have not seen positive results as yet.
Whatsinaname said he is receiving it Mumbai, India at a cost of appx of $13,000.00USD for 3 injections, everything included. Since I am going to India for a prostatectomy plus more vaccines in 2 months I searched online and found at least 2 places in Delhi that offer Lu177 too and hope I am a candidate for it too. I am stable now and run out of vaccines in August so have to something. Unfortunately a lot of these new treatments are not available in the USA, but thank God they are somewhere.
I am paying approx 40-50% more because I am taking the imported stuff from Germany. They also offer you the local stuff at a considerably lower price. The local stuff is also supposed to be quite good. I just did not want to take any chances this time.
I will ask them if they are using imported products. I know the Ga-68 that Medanta uses comes from Belgium and Fortis is also a major private pay hospital in Delhi so most likely they are usimg the imported stuff. I would want to be absolutely sure too since this is mo did t likely my only window that I can get pretty good control of the disease. Omce they take it out at least I will be NED for awhile. Glad it works better for low volume disease. Maybe I will get lucky. Metastatic kidney cancer to the bones with a 5.1 pound tumor like the one I had was considered incurable 23 years ago but here I am. I think there's going to be some of us that at least get some lomg term NED with these new treatments. Hoping we all do. Do you not live in India?
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