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susan horn, May 29, 2018 in Castrate Resistant Prostate Cancer
Not sure what your question is, but I do see you are in the US.
Please feel free to join our Advanced PCa virtual support group that meets weekly. The next meeting is today, Tuesday, May 29 @ 6 pm EDT; participation is free and drop-in. For joining instructions please visit https://www.ancan.org/joining-instructions or send an e-mail to firstname.lastname@example.org to be added to the advanced notice distribution.
We have a couple of participants who have recently experienced or are about to start Lu-177 stateside.
Onward & upwards, rd
Hi Susan, Ardee and to all others,
I'm in Canberra, Australia. My scans looks worse than last year and the abiraterone is failing, but Psa was only 5.2. My doc says I should continue abi for a month while they arrange the best they can with me with DNA test, and Lu117 infusions from a Dr Lenzo from a clinic in Sydney. I have yet to confer with Dr Lenzo, and probably he may want me to be on docetaxel which a friend here says is fine to take because he's had 10 shots now and is still playing competition tennis at age 59. Some chemo is worse than others, but DNA profile may show what will or won't work.
So how are the guys who have had LU117 now? what are side effects?
Meanwhile, I'll try to keep going forwards while delaying to the upwards trip for as long as possible ?
Hello Patrick ..... the most significant comorbidity from Lu177 I have observed to date involves myelosuppression i.e. the bone marrow is suppressed and unable to produce healthy blood cells as efficiently. Since this can also be a side effect of chemo, it is unwise to combine chemo with Lu177. Trials have also observed this with other radionuclides like Radium223 (Xofigo).
Ironically one of the men I know well who tried Lu177 also did well on chemo, and actually won a tennis tourney after his 5th chemo infusion! He stopped his Lu177 after 3 blood transfusions.
If timing allows, please feel free to join our virtual group - Nev Black was on yesterday's session. You can also listen to recordings of the groups here ... or on our YouTube Channel
If your Medical Oncologist is considering treating you with Docetaxel, it would as Ardee has suggested be wise to have Docetaxel first and then - if and when its needed check out the availability of Lu177 treatment via the TheraP trial.
This is a randomised controlled trial. Randomisation means that trial participants are put randomly into one group or the other, so that the only major difference between the two groups is the type of treatment they receive. They then compare the outcomes of the two groups to see if one treatment is better than the other. In this trial, half of the participants will receive Lu-PSMA and half will receive cabazitaxel. The trial is not “blinded,” which means that you and your treating team will know which treatment you receive, but you do not get to choose which treatment you will get but both are appropriate for advanced metastatic PCa.
As you probably know Patrick, treatment with Docetaxel ( is in most cases in Australia) a necessary prerequisite to qualify for treatment with some of the more exotic treatments that are subsidized by the PBS.
I understand there might still some be some vacancies on the TheraP Lu177 trial (Royal North Shore Hospital and Liverpool Hospital in Sydney)
After treatment with docetaxel if you are are suitable for treatment with Lu177, if you qualify for the trial - treatment will be provided whereas treatment with Lu177 by Dr Lenzo at Theranostics is I understand somewhere in the region of $9800.00 per treatment and you may need up to 4 treatments.
Hi Barree, and to all readers.
My Psa is now about 5.5, and the last test showed it rose from 3.2 to 5.2 in 2 months, and rate of rise is increasing.
Abiraterone is unable to now keep Psa low, after 10 months. The latest PsMa gallium Pet and CT scan is becoming more like a picture of a Dalmatian dog; there spots everywhere, but all are in bones, and nothing is in organs. The salvation RT I had to PG at Epworth in mid 2016 seems to have worked because the report scan says there's no cancer activity there. Symptoms of frequent nightly get-ups are no worse than 6 years ago, about 4 on average. No incontinence and bowels work OK. So in that area I am doing OK, but the bone mets in cervical spine are just starting to give discomfort at night, because they are presently small. So the storm clouds gather, pain is on the way.
I an still OK to cycle 40km to-from the hospital to see my docs, and do the occasional 60km ride across town for a cuppa and read of newspapers.
But I fear pain will shove me off the bike. Then I have the horrible thought that a decent 4 hour cycle ride for 90km may be very good for cardio health but the high rate of circulation could spread the cancer. I think my days of doing 330km a week sometimes is gone, and maybe its time to join the more normal human race who'd never ride more than 100km a week. Meanwhile, the onco fellows at Canberra Hospital ( public) are eager to get me to go to a Sydney specialist for maybe DNA test to see what chemo would work best because the CT part of the last PsMa scan report spoke of some spots which are not generating PsMa and to Lu117 would not do anything with them. Fortunately, I am able to afford whatever the bills may be for the DNA testing and the $40g for Dr Lenzo and all the other bits and pieces, and I don't need insurance, because I saved up a decent fighting fund.
As the complexity of my situation grows, its very hard to know exactly what is best because there comes a time where only the docs know enough, and that isn't everything that could be known, and you just have to go with them not against them, so part of the cancer situation is not having any control over anything much at all.
I am most grateful for what Canberra Hospital and Calvary Hospitals have done for me, and continue to do completely for free, and thank heavens I don't live in the USA where my costs without Australia's Medicare system would have been horrendous.
My docs here said they would not send referrals to the Sydney specialists unless I got a mobile phone, something I loathe because like my mum who died in 2015 at 98, she found life was quite OK without a mobile. But I was told the docs in Sydney may need to phone so I need a mobile. But Dr Lenzo's office said I'd get a letter, and if there was a conference it would never be by mobile phone, and only face to face or by Skype. But the doctor's office staff may need to contact me. I am waiting for a nano simcard in the mail. I downloaded Skype to my laptop for Dr Lenzo - if he agrees to treat me which I guess will depend on whether he thinks it would be of benefit. Trials of Lu117 have found some blokes did not get a benefit with it. It is all so easy to be in the group for whom Lu117 is a waste of time and dough.
BTW, sound quality using a laptop inbuilt camera, mic, and speakers is horrible. I got a set of headphones with a mic and with USB plug, and although the video picture quality is not marvellous, its good enough in daylight. I now have to make sure the data speed is fast enough from my ISP, and see what amount I'd use for say a 20 minute call.
I think I might be begging my oncologist for docetaxel if there is pain soon; something has to be done sooner rather than later, and although I might have tried enzalutamide my docs suggest that may have kept the Psa down, but not stopped my disease progress.
I have a Melbourne friend on his 10th docetaxel and he is playing competition tennis, and doing lots of stuff. But his Psa went from 40 to 2, and now shows sign of slight rise, all in 5 months, so his battle is far from over. Its now about 3 years since his diagnosis, and Pca continued after RP, and then ADT worked for only 3 months, and Cosadex made Psa rise even faster, so hormone manipulation does not always work for everyone. I ain't afraid of this chemo, but carboplatin might be horrible I have heard.
The PBS scheme does not allow a switch to enzal after abira unless I had severe side effects; one doc said I would be able to provide a list, the other said that if an audit of records was done, they could get cooked by authorities, so no enzal, and it would not do me much good because the cancer has now become differentiated and gone to many bones and some does not respond testosterone starvation or blocking. This is just what old Pca tumours do, and its why they are so dangerous, and mine probably began in 2004, and it didn't make much Psa for the amount of Pca found. 95% of men will pass away within 5 years of a CT scan that shows the first bone lesions. Lu117 has median life extension of 13 months, and its a gamble at to how long anyone gets, I may need Radium223, also doable in Sydney, but side effects could be quite bad, and so I have no idea exactly how I would fare if I bought whatever is on offer.
I am lucky to not have other co-morbidities, and that I am fit and BMI < 25, resting HR 50, but the cancer ignores this, and I think maybe if a man is real healthy then so is his cancer, but I do not suggest anyone neglect their fitness, so I'll try to keep cycling, pain permitting.
Being fit ( apart from cancer ), probably means side my effects are less than for those who are not fit.
The radiation doc at CH told me I could get local EBRT to cervical spine for pain if needed, but said I'd have a sore throat afterwards, and from what I have seen in a friend here, that's not all, maybe dry mouth and no taste. One by one the things that make a simple life tolerable
and enjoyable just leave us as treatments go on. But the friend here is now 79, and Psa = 0.01, and he didn't get any Pca spread to distant sites, although be did need 70Gy to site of operation for robotic RP he'd had 7 years earlier when Psa had gone to 0.01 for 3 years, then back up slowly to 0.5. 2 years Before Pca got him, he had a small neck cancer and he had a small op, RT, chemo, and appears OK now. His treating doctor got a similar thing which killed him.
I must now away, to collect a dear sister at a railway station to spend the rest of today with her, galivanting in art galleries and having a decent lunch.
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