My brother has had 4 doses of Lu 177. These cleared multiples bone lesions from his body and returned him to good health with a PSA less than 1. Seven months after his last Lu177 injection, he started to feel some pelvic area pain, but as he was booked for a North American holiday (from Sydney, Australia), he took a curcumin/berberine supplement that appeared to reduce the pain or contributed to lesser pain. On his return to Sydney about 8 weeks ago his PSA was 100. He met with his former MO and the Theranostics Australia (TA) people in early Nov. His MO castigated him for having non-SOC treatment, and sent him for a PSMA PET and FDG PET scans, which showed a significant spinal lesion. TA didn't think another Lu177 was appropriate. His PSA had risen to 315. At this time he started to experience extreme back pain and hismobility was starting to be compromised. He was admitted to hospital, put back on Xtandi, and had 5 SBRT treatments all on the major lesion. After the 3rd radiation dose he started to lose control of his left leg. Even though he is having extensive physio, he now has no control of both legs. In other words a paraplegic. His PSA 2 weeks ago had risen to 740 and his ALP 440. The challenge now is the spread of the Ca into the bone marrow. His Platelets have gone from 100 to 70 (6Dec) to 40 (18Dec); WBC 10 to 2.5; Hb 100 to 70 (6Dec) to 40 (18Dec). Not at all good. Any thoughts on where he might go from here? He has not had any genetic profiling done. We still have one option available and that is treatment with Veyonda, a drug undergoing trials now by Noxopharma, a Sydney company. Their CEO has agree on compassionate grounds to treat him, IF his MO would approved this step. As his MO is on the PCa Guidelines committee it is unlikely to do so as he only does SOC. See more on Veyonda on the Noxopharma web site or via ticker code NOX at asx.com.au past announcement. The CEO in question cured his Stage 4 PCa with Veyonda. It enters a Stage multi-centre international trial during 2nd Qtr 2020.
Any considered input would be appreciated.
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AlanLawrenson
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1. "His MO castigated him for having non-SOC treatment, "
What was non-standard with his LU 177 treatment?
2. "Any thoughts on where he might go from here? He has not had any genetic profiling done"
No reason not to do that. Why not shotgun any applicable tests that might be available.
3. "IF his MO would approved this step. As his MO is on the PCa Guidelines committee it is unlikely to do so as he only does SOC"
Get another Medical Oncologist.
Here is how. I would ask the CEO what docs the CEO has been working with for clinical trials. Then line up a bunch of second opinion appointments. As they give you second opinions, ask them if they are willing to become your treating doctor.
And I wouldn't limit yourself to Australian Docs. Sartor at Tulane can be highly aggressive. I would try to set up an urgent emergency consult with him.
Don't bring up the subject unless and until you are face to face with them and they have expressed what their second opinion is.
4. Has he tried Jevtana yet? What about Bipolar Androgen Therapy? Why not look at both of these?
What is his treatment history?
5. What exactly is his current Medical Oncologist recommending as the applicable Standard of Care?
Ask him for 3 SOC options and 3 non-SOC options that he would never himself contenance at this time, but which are in trials. Ask this of all the Docs you go to for second opinions.
Any professional that is any good at their profession can always propose multiple options... even if they are hail mary pass types of options.
It is just plain unacceptable if he won't do that, can't do that, or both.
6. Given his sudden reversal, maybe he has small cell prostate cancer? Does anyone here know the Standard of Care for small cell prostate cancer?
1. "His MO castigated him for having non-SOC treatment, "
What was non-standard with his LU 177 treatment?
It is an experimental therapy
2. "Any thoughts on where he might go from here? He has not had any genetic profiling done"
No reason not to do that. Why not shotgun any applicable tests that might be available.
I agree it would be worthwhile, with no down-side.
3. "IF his MO would approved this step. As his MO is on the PCa Guidelines committee it is unlikely to do so as he only does SOC"
Get another Medical Oncologist.
Here is how. I would ask the CEO what docs the CEO has been working with for clinical trials. Then line up a bunch of second opinion appointments. As they give you second opinions, ask them if they are willing to become your treating doctor.
I have today sent a copy of my new book "An ABC of Prostate Cancer - 3rd Edition" to Noxopharma CEO as I have their drug regime included in 25 Future Developments. I have asked that specific question re non-SOC MO's.
And I wouldn't limit yourself to Australian Docs. Sartor at Tulane can be highly aggressive. I would try to set up an urgent emergency consult with him.
I'll consider the practicality of this.
Don't bring up the subject unless and until you are face to face with them and they have expressed what their second opinion is.
4. Has he tried Jevtana yet? What about Bipolar Androgen Therapy? Why not look at both of these?
Genetic test would indicate effectiveness of Jevtana. I am fully familiar with BAT and discuss it fully in my book.
What is his treatment history?
20 yr PCa sufferer GS 9. LD Braccy 2005. PSMA Lu177 4 cycles last in Feb 19. PSA then 1.
5. What exactly is his current Medical Oncologist recommending as the applicable Standard of Care?
Best to date: SBRT left him a paraplegic; resume Xtandi (was on Casudex until I complained)
Ask him for 3 SOC options and 3 non-SOC options that he would never himself contenance at this time, but which are in trials. Ask this of all the Docs you go to for second opinions.
Present challenge is therapies that will be effective when the cancer is attacking bone marrow. If blood condition deteriorates a lot, it kills you.
Any professional that is any good at their profession can always propose multiple options... even if they are hail mary pass types of options.
It is just plain unacceptable if he won't do that, can't do that, or both.
6. Given his sudden reversal, maybe he has small cell prostate cancer? Does anyone here know the Standard of Care for small cell prostate cancer?
I agree the FORM of his PCa seems to have changed and become very aggressive. I thought it might be neuroendocrine NET but his high PSA suggests not.
What I was after is input relevant to his bone marrow attack.
However, I very much appreciate your input and advice to be more aggressive with MO.
Peter Mac has a clinical trial using olaparib as an adjuvant therapy to Lu-177-PSMA. But if his two scans showed discordance, Lu-177-PSMA probably will not be helpful.
I read with interest your post on heterogeneity and re-population. The short term problem is accessing the two scans which are on CD. I have asked for print outs to view them for above. However, its still not a solution. Thanks for input.
"The short term problem is accessing the two scans which are on CD."
Hmmm that is a problem I had not considered. Unless there are gross differences, you are really better of having the same place do both scans. They then will probably be able to find a way to match them up.
But if there are really gross differences between the two scans, maybe that isn't so important.
A radiologist has to do it. One can't just look at them. The SUV has to be measured against certain key background values. If possible, get an opinion from michael Hofman at Peter Mac.
I'll contact him in January. Silly season has just started in Oz. Fires are causing chaos in Sydney area. I think my brother's involvement with Lu177 is over. Theranostics Aust believe that he has had enough radiation. Keytruda reacts well when DNA errors are present. My brother has not had a genetic test.
The key question is to stop the PCa attack on his bone marrow. Failure to do so, leads to death. Not an outcome that I am prepared to accept.
I posted about Veyonda earlier today. Today their CEO, (Who saved himself from certain PCa death with Veyonda) did a webinar accessible on asx.com.au -Go to announcement - NOX. It tells how 47% of critically ill PCa men stopped their PCa progression in its tracks in a Phase 1b trial. Phase 2 trial recruiting in the new year internationally and in Oz. I have met the CEO and am in ongoing contact to get my brother into a compassionate use program.
I’m sorry I don’t have any suggestions regarding your brother’s bone marrow issues. I just don’t have that expertise.
But I have read your posts with a degree of despair as it seems to me that the situation is urgent and the timing, being Christmas / New Year is not conducive to getting prompt responses.
I think one of your best options is the one you have already been pursuing i.e. Veyonda. Please keep trying to convince the CEO to allow your brother to enter a compassionate use program. If necessary find another MO ASAP. Dr Anthony Joshua at Kinghorn Cancer Centre, St Vincent’s in Sydney might be an option.
Maybe another possible option is to contact Professor Howard Gurney, head of Clinical Trials at Macquarie University Hospital. His name was given to me as someone who would be worth contacting in a situation such as yours.
I hope you can get the situation under control quickly. Our thoughts are with you from the Top End of OZ.
Hansjd. I appreciate your reply. My brother was formerly treat by Prof of Oncology at Kinghorn. I'll check them both out. After I posted yesterday Noxopharm released an ASX announcement which was a webinar on Veyonda progress. The results to date were endorsed in the webinar by Prof de Sousa, Head of Medicine at Wollongong Univ. A powerful aid in getting access to Veyonda.
Alan Lawrenson, after tertiary studies, spent almost his entire working life in the commercial side of the science industry, marketing scientific and medical equipment and running the peak industry association for laboratory technology in Australia. He also served on a number of Australian Government-initiated reviews and committees.
His father died with prostate cancer aged 95, his brother has suffered from the same disease for more than 10 years. Alan was diagnosed with prostate cancer in 2012 and wasn't happy with the treatment options initially offered by his doctors.
He termed the phrase "The Cancer Anxiety Factor" that afflicts all newly diagnosed PCa patients. A large motivation in his writing his initial book "An ABC of Prostate Cancer in 2015" was to provides such men with a host of alternatives that might better suit their circumstances and to encourage them to take a more proactive role in 'managing' their condition. Subsequently, he has written a second book titled "An ABC of Prostate Cancer - 2nd Edition". This new book, launched in September 2106, is a much updated and expanded variant of the initial book.It provides far more information on Diet and Nutrition and on a host of successful Alternative Treatments.
Both books broadly describe his Journey over 4 Continents to find the Best Cure. They are considered essential reading for newly-diagnosed prostate cancer patients.
Alan continues to be an in-demand speaker on prostate cancer at Support Groups, seniors clubs, etc.in Australia.
Hi j-o-h-n. Thanks for the advert. By the way, my third edition book was released on Amazon this month. I am very pleased with it and think its comprehensive content will help thousands of men. without doubt it is the very latest available. It goes into much detail on advanced cancer, but I am light-on when it comes to bone marrow attack.
You're very welcome... and good luck on your third edition. You may be light-on when it comes to bone marrow attack, but I am in complete darkness.... Merry Christmas to you and yours in the land of OZ.
Tell your brother to stay well.... and here's one for him:
Alan, questions not help I'm sorry. Could you tell me if he was on a Lu 177 trial or if you accessed it privately? Sydney/Melbourne? Also if privately how did you go about this?
I know you'll get good information and support from others but I wish you and your brother well and hope things improve.
Although I am not in need yet, I have discussed Lutetium treatment “down the track” with my MO.
He has no problem with it, but regards it as unprincipled that RO’s are charging such excessive fees for an as yet unproven treatment.
He advises that he hopes by the time I might need it, it will have been developed to a point where likely outcomes are better known making it a more reasonable investment, and/or patient costs will have come down to a more reasonable level.
If that hasn’t happened by the time I might need it, he says he will do everything possible to get me on to a trial.
I think your medic is exactly correct, other than his claim of high costs, etc. My brother and his wife are both very positive about spending US$30K to have two years of excellent health.
The problem now is after it has 'worn off', the PCa has gone wild. PSA from 1 to 760 in three months. Almost unheard of. What form its in and why, are questions that need urgent answers.
I am well versed in most aspects of PCa, (I have written 3 books on the topic), but I need to know what do you do after the PCa attacks the bone marrow.
if you compare the cost to a one-month supply of Xtandi, it is is a moderate price. Once the treatment is FDA approved, big pharma will ask much, much more for a Lu177 treatment.
Agreed that other medications are also high cost, my Zytiga here in Australia is $3,400 per month, BUT that is covered by Australia’s Pharmaceutical Benefits Scheme (PBS) So I pay $6.40. That is why I specifically referred to “patient costs”. At the moment the whole A$1000 per treatment for Lutetium is borne by the patient.
Oopps, My bad, I missed a zero, meant to say $10,000, which was the cost a friend paid. If that is now down to $7000, we’ll that is good! But still too much for some, especially if you need 4 or more treatments.
Alan, at face value it seems to me that your brother needs some immediate supportive care. That is, possibly a blood transfusion (whole or component) - simple- and maybe decompression of his spine for treating the paraplegia -possibly not so simple, depending on his health status.
You seem to have a handle on future approaches to the PC. How about radium 223 once you get his blood sorted? =Rob.
I am sorry about your brother. I do not have any promising input. I wish I did.
Actually, this is my first public post. My husband is a fellow traveler, dx 2/28, Stage 4. On ADT & Zytiga 1 year, PSA now 0.2. He feels pretty good, tired, working full time.
I just wanted to post the link of the webinar that you mentioned from Noxopharm’s update today: finnewsnetwork.com.au/Media...
Veyonda looks very promising! I hope he gets to meet with Dr. Kelly soon.
Regarding Veyonda. (Nox66). Very promising results from the DARRT-1 trial. Impressive. Function includes as a radiosensitizer for low dose radiation including 177-Lu-PSMA.
Here is the overall approach of the DARRT trials of Veyonda"About the NOX66 DARRT program
The Company’s NOX66 DARRT (Direct and Abscopal Response to Radiotherapy) clinical program is testing the ability of Veyonda® to augment an immunological response to palliative (non-ablative) dosages of radiotherapy. The principle of NOX66 DARRT is to use low-dose radiation to trigger local inflammatory and immune responses in a single irradiated tumour, with Veyonda® designed to boost that response and extend it to all tumours in the body via an ability to increase trafficking of the body’s innate and adaptive immune cells. The clinical outcome being sought is shrinkage of both irradiated tumours (direct effect) and non-irradiated tumours (abscopal response), resulting in reduced pain, extended progression-free survival, and improved survival."
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