I met with the Radiation Oncologist here at M.D. Anderson in NJ and said I am not qualified for Provenge. I do not have the symptoms such as bone pain, lack of appetite, unable to sleep, fatigue, change in bowel movements, urination problems, etc. The doc strongly recommends Provenge which i strongly support. The Doc said you can have xofigo should the symptoms arises. It does not have any impact on your PSA whethet it will rise or not. it kills the bone cells that are causing the symptoms. PSA is currently 1.6. i work out 4-5 days doing weight training and cardio for 30 min.Take care guys and good health to everyone
Nick
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Nicnatno
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I'm on lupron every 12 weeks since I was diagnosed in March 2017. I completed 6 rounds of docetaxel. My bone and scan from last month was stable. My Onc was pleased with rhat.
I am not sure what is going on here. I didn't have any of those symptoms and I qualified for Provenge. The only thing was I had some nodules in my lungs. Provenge worked well for me.
I didn't have those symptoms and was offered Xofigo. I didn't do it mainly because my PSA doubling time was 3 weeks and I didn't want to imagine where it would be after 6 months of Xofigo treatments. My doctor said he has not been impressed with Xofigo at all. He said people either seem to have no side effects or terrible side effects, not much between.
My husband was diagnosed July 2017 and had bone Mets at the time of dx with a very low PSA.
He has had Lupron, Xtandi, Provenge,
and Zytiga which he is currently on but has stopped working. Before Zytiga he has 2 very bad reactions to Docetaxel.
The may be able to try it again but it would have to be inpatient.
He has tolerated all the other drugs well.
He has resentful become symptomatic again in hips, low back and pelvis and has been offered Xofigo as his next course of trestment. His PSA is 213 and rose 60 in the last month.
What is this rule with Medicare and Xofigo? Is it bring suggested to edit until the pain is worse? Right now he takes extra strength Tylenol when hurting and it seems to help!
Here is a link to an article that just came out in Practice Update: practiceupdate.com/C/91401/... you may have to register for the site. Title: Genomic and Clinical Characterization of Pulmonary-Only Metastatic Prostate Cancer
You are confusing Provenge and Xofigo. It is Provenge that may not affect PSA, Xofigo usually does. Xofigo may work best if used earlier - Read the section titled "Early use of radiopharmaceuticals":
"Patients earlier in their disease course with <5 Bone Scan Index, low pain score, and good ECOG performance status are optimal candidates for radium‐223."
"Micro-tumors showed severe growth delay or eradication in response to Rad-223, whereas macro-tumors persisted and expanded. The relative inefficacy in controlling large tumors points to application of Rad-223 in secondary prevention of early bone-metastatic disease and regimens co-targeting the tumor core."
Tall Allen says some good sense about Ra223 and Provenge.
But where is your Pca located? Ra223 is only good for bone mets and from what TA says, best when bone mets are small. But what about soft tissue mets? Provenge might stop them, or may not so the two things could be given and bone mets reduce but soft tissue mets don't.
Methinks a PsMa Ga68 PET/CT scan would show the total Pca condition well, and maybe Lu177 would work on all mets. Lu177 tends to work best on soft tissue mets which have PsMa avidity. It works on bone mets but takes longer. I had lowish Psa before Lu177 at 25, Psa went flat for weeks before going down but was 0.4 at 2 months ago, well after 4 x Lu177 shots. PsMa scan after 4 shots showed I had very good response on all mets, doc said I will not need any other treatment for a long time. I am also taking Xtandi which helps action of Lu177. I'll know if my luck continues next Thursday when I see my oncologist and see what Psa is.
Nobody can predict what their next Psa will be or what treatment outcomes will be. If my Pca comes back in bones but not in soft tissues, maybe Ra223 is a good option; mets are small, never were larger than 10mm dia, size of a pea.
Last week I cycled 230km at good speed, I feel so well, so I expect my luck is continuing, but I just really don't know yet. I'm 72, and was diagnosed with inoperable Gleason 9 in 2009 at age 62. Psa has been up and down like yo-yo over past 10 years, but 50 was highest after chemo failed after 5 shots about 14 months ago. I had countless mets. Lu177 was from last Nov to May, seems to have done good, but the fight goes on....
Great to hear of your response to LU-177. Where I get treated at MD Anderson, it is not offered yet but I'm sure every Oncologist in the USA has heard of it.
Lu177 is yet to be approved in USA and it seems is only available in trials.
But its available here in Australia if chemo fails, as well as in 3 trials I can think of. Its approved in Germany and Sth Africa and I am not sure where else. I got Lu177 from Theranostics Australia which has been giving it since 2015, when the PsMa Ga68 PET/CT scan also became available.
The chief doctor at TA here said that for those who have a scan that shows Lu177 will likely work, 70% of men get a benefit, and trials of men in late stage 4 with many bone mets showed many got a big benefit, and now PeterMac Hospital in Melbourne is trialing Lu177 as initial treatment and not using it just for extending the lives of men who might otherwise die in a few months.
There's a professor Hoffman at PeterMac who has led the trials there and there are videos on what he has found. The fact they have begun to use PsMa scans and Lu177 at after diagnosis shows the docs know it probably can work better than an RP or the usual alternative with EBRT + ADT.
But the doc at Theranostic Australia has treated 800 men since 2016 and had 70% get a benefit, so he knows it works well enough to be able to sell it. Mean time of benefit is 14 months, some will get less, some will get many years. And where the Pca has not mutated and where it does return it can be re-treated and a similar time benefit gained and this seems to be my case, because scans could not detect Pca mets which were not PsMa avid, and so maybe I live another 4 years.
Without Lu177, there was only chemo, and Docetaxel failed, so its likely other types of chemo would have failed because my oncologist said that's what happens in so many Pca cases he has seen. He was very happy to refer me to the doc for Lu177. Side effects of chemo are horrible compared to those caused by Lu177.
Cost of Lu177 is about usd $28,000 for 4 infusions 8 weeks apart, plus 3 PsMa scans at $500 each and an initial consult by Skype at $350, but there is no charge for consults during course of treatment.
I began Lu177 with Psa at a fairly low 25 at 12 months ago. Psa went down after 3 shots, and was 1.6 after 4 shots. I also began Xtandi right after No 3 shot because a research doc said its very likely to work by aiding the action of Lu177, and she's doing a trial on that in Sydney at present. Psa was 0.4 at 2 months ago, and I see my onco doc again today to see if its gone lower.
Many doctors are still not aware of nuclear therapy, and many patients are frightened to try to inform themselves as much as possible about their cancer, and some just don't get the time because the cancer moves so fast there's no time for that and symptoms of cancer and treatment side effects are so bad that its overwhelming.
But I have had Pca since about 2004, diagnosed too late in 2009 when Psa just went more than 5, but my Pca in PG was inoperable, and a Gleason 9, a real bad score, and spread had probably begun by then.
But ADT held it all down for 6 years until 2016, then the add on drugs and salvation radiation was done without much benefit for another year and chemo made Psa rise from 12 to 50.
But last week I cycled 230km, feeling very well, and will cycle 20km to see my doc today, have lunch at hospital café, then cycle further to end up doing 60km+ for the day. It seems my Pca is under control now, but I have to accept it may flare up again; Pca is often a disease you have to live with for many years.
I'm 72, and I sure cannot live forever, but docs think I am The Most healthy stage 4 cancer patient they have to deal with, and like seeing me arrive for a talk on a bicycle, dressed in Lycra, with a positive attitude.
Other patients waiting to see the onco doc wonder what's wrong with me, and don't understand that Pca can chase a man around for 20 years, but if a man is slow to act or dithers around, it will kill him sooner rather than later. So I went for whatever I found was available, with a chance of working, then let the pros get on with it.
Its not about "how long have I got?" its about "what else can we do?" and my doc here is happy to refer me on to doctors who provide care which is not available at his Canberra Public hospital. This is a big Govt owned and Medicare funded hospital where I never have to pay 1 cent for anything, but they have a lot of good stuff before anyone needs to be transferred to one of the many non Medicare funded hospitals which offer less common treatments such as Lu177.
I get to see and talk to nurses today. Its like being in heaven because they are angels......….
Hi zengirl, I was able to buy Lu177 from Theranostics Australia after my chemo failed. During the 4 infusions I had to pay about usd $27,000, total.
I met men from US and NZ. Trials are still continuing with Lu177, and are free if you qualify to get into one, but if not, then you have to pay directly for it. There was no Medicare funding for my Lu177. US men are going to Germany for Lu177.
I checked into Provenge and cost was prohibitive (my co-pay was $24,000 per session) and results so far add 3 -4 months. Can't put a price on a life, but when it's yours and your concern is what you leave for loved one to survive it has to be taken into account.)
I think about this a lot. My wife is 6 1/2 years younger than I am and will likely outlive me by a significant number of years. A small extension of life is not worth digging into what she will need to live after I'm gone.
Good luck to you. I would look into it - any way insurance would pay? My husband used it more than 7 years ago. It was the immunotherapy that worked for him. I know we didn't pay that kind of money.
Yes Provenge does nothing to PSA levels and really is a last defense that works only for less than a year usually. Like Lupron resistence occurs as well.
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Diagnosis + 18 years; update since Xofigo
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