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Advanced Prostrate cancer progression spine


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Old 10-20-2016, 08:43 AM   #1
ralphh
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Advanced Prostrate cancer progression spine

Just posting an initial thread to get some feedback on progression.
Not in much pain other than numbness below thoracic spine T2-T5, especially in feet with difficulty walking (mostly use a walker or cane). Interested in others experience with progression, especially if pain is severe as it spreads further. Oncologist hasn't delved into late stage stuff yet but he is an optimist and I want to understand what is likely to come and how best to handle.

Background: diagnosed w prostrate cancer 2 years ago, long history of psa's was there to let me know 4 years earlier of impending spread if only graphed (sharp rise from very low base on yearly tests) but wasn't done. GP found lump w DRE same time first PSA went above threshold of 4 (4.1). Initial treatment after biopsy indicated cancer in 4 cores with highest Gleason 9. ADT for a while then EBRT followed by seeds. Came off Lupron before 2 years recommended by Urologist once PSA's was down low (<2). Thought I was cured but must have already metastasized either before or after initial treatment. Eight months ago pain in shoulder at night thought related to muscle strain from golfing. Two months after that sharp pain in back swinging so went to get treated or slipped disk or whatever. Wobbled walking to third therapy session (pain diagnosed as muscle strain by orthopaedic), and by middle of that day could no longer walk. Thoracic tumor compressing spinal cord required emergency laminectomy, precedeed by ADT and followed by radiation in both thoracic region and shoulder which turned out to also be prostrate cancer (in bone - with nightime incidence which should have been a tipoff of cancer in bone. Can walk again but severe numbness especially in feet. ADT didn't stop advance as the spinal column had like 4 new sites on recent MRI/bone scan, so on to standard of care Chemo for now (taxetal?) plus trying a trial for immunotherapy (1/3 placebo).

 
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Old 10-20-2016, 04:30 PM   #2
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Re: Advanced Prostrate cancer progression spine

Hello Ralph,

I'm sorry that the cancer has spread to your spine and is causing you trouble. That was a worry for me for years, but it never happened.

Here are some questions.

It's surprising that many doctors give ADT just a brief try before moving to chemo, overlooking tactics that might enable the ADT to work well. How did your PSA respond to the ADT? Did your doctor monitor testosterone and DHT (dihydrotestosterone), and, if so, how did they respond? What kind of ADT did you have (such as just one drug, orchiectomy, a combination, or three drugs, and what were they and what were the doses)? Were you on Zytiga or Xtandi?

Do you recall the doctor discussing the new treatment that uses Xofigo? It is essentially potent radiation hooked up to an antibody that seeks out prostate cancer in the bones, such as in the spine.

Are you near a major center that treats prostate cancer?

There is a real basis for hope and optimism these days, but your situation is clearly a challenge.

 
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Old 10-21-2016, 11:38 AM   #3
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Re: Advanced Prostrate cancer progression spine

Thanks for the comment IDAT.

Addressing some of your questions;

RE the ADT, I clearly have metastatic castration-resistant prostate cancer as the tumors in spine and shoulder bone appeared after an initial negative bone scan (at time of first prostate treatment) when I was on Lupron for about 8 months. Came off Lupron on my own and just a short while later came my metastases symptoms in shoulder and a little later acute thoracic spinal cord compression. Under that emergency condition I immediately went back on ADT, firmagon first and 30 days later back on lupron (which was not viable before back surgery due to potential initial flair and danger of paralyses/death). Still on ADT but it spread into more places in spine, now lumbar and lower thoracic as well as the existing sites still have indications although surgery and/or radiation treatments received.

My PSA levels were low. At discovery 4.1. Dropped to less than 1 when I went off. Rose to max of 6.1 at time of back surgery and once back on down below 1 or so now. My testosterone levels were real low at 20 and <3 with a low band under 380 or so. I knew that anyway. Don't have DHT numbers from oncologist but didn't look back to urologists testing.

Re the Xofigo thanks for mentioning. Not appropriate for me at this time since I am on Chemo. Hopefully the chemo gives me more time than the 3 months extra Xofigo does on average. It can be used after chemo, plus Dr has other plans depending on progression which may include this and other treatments.

Re Xtandi: "The aim of this trial was determine the safety and effectiveness of enzalutamide in patients who have previously failed chemotherapy treatment with docetaxel.[11] In November 2011, this trial was stopped early after an interim analysis revealed that patients given the drug lived for approximately 5 months longer than those taking placebo." So since I am in docetaxel with prednisone that (Xtandi) would be a follow on after the chemo. I was never on Zytiga.

I do trust my current team and approach. I am being treated at a major Cancer center. My biggest complaint about Drs. is with my family DR, who had many years of PSA test results (over 10). Although results were always below threshold of 4 there was a clear and distinct sharp rise in PSA values around 4 years before PSA breached 4.0 threshold at same time at tumor felt with DRE. IMO PSA results should always be graphed with time for discovery of cancer even with low PSA levels like me.



Anyone have comments/experience willing to share on my initial question re advanced prostrate cancer progression?

 
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Old 10-21-2016, 01:10 PM   #4
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Re: Advanced Prostrate cancer progression spine

Suspect Ineffective ADT!

Hi Ralph,

From your description, I suspect your ADT was inadequately managed. While I have had no enrolled medical education, I have been at this for more than sixteen years now, with ADT (IADT3) my sole therapy for the first thirteen years (am now apparently cured with radiation plus ADT in 2013), and I have been closely following several leading experts in ADT for all of this time.

There is good news in this: soundly done ADT may still work for you, which would mean you could go back on ADT after your chemo, which also fits very nicely into the program. That’s because high-risk cases are now being treated with an ADT/chemo combo up front as a result of several studies, especially the one known as CHAARTED.

Here are the main problems I see with your ADT. First, you were just on Lupron, apparently with no drug (like Casodex or Firmagon) to prevent the flare, which may have caused the injury to your spine due to the initial surge in testosterone before causing the T to plummet. Lupron is quite good (not nearly as good as Firmagon) at shutting off testosterone produced by the testes, which certainly happened in your case (T = <3)), but it does not always do anywhere near a good enough job of preventing production of DHT, which is far more potent than testosterone as a fuel for prostate cancer. It’s strange, as DHT is mostly made from testosterone, but there are other ways it can be produced, and a little DHT can go a very long way in making an ADT program ineffective. Some men make surprisingly high levels of DHT even when T is severely reduced, and you MAY be one of them.

Here’s the way to determine if your doctor may have left open this huge “barn door” that allows DHT to wreck an ADT program: call today and ask your doctor whether DHT was monitored along with PSA and T, and, if so, what were the results. You want to see a DHT of 5 ng/dL or lower. If it was monitored and DHT was 5 ng/dL or lower, then the ADT is doing its job but the cancer is just too strong, and you are “castrate resistant.” However, if no DHT has been done, I recommend you get it done as soon as convenient. If DHT is higher than 5, then a broader drug attack is needed for sound and adequate ADT. The doctors I follow would prefer Firmagon (versus a Lupron like drug for a patient in your circumstances), with appropriate delivery that greatly reduces pain and discomfort (duration of injection, use of ice, etc.), with Casodex to help block the cancer cells’ fuel docking ports (known as “androgen receptor” proteins), and dutasteride (Avodart) (or finasteride/Proscar if genetically incapable of making use of dutasteride – about 10% of patients as I recall) to sharply cut the conversion of any remaining T into DHT. The usual dose of Casodex for a metastatic patient seems to be 150 mg, but higher doses can be used. PSA, T, and DHT are monitored, as well as liver function for several months, to make sure the patient does not have a genetic problem with a Casodex like drug, with the drug ursodiol highly favored by one leading expert to prevent/deal with liver issues so patients can use Casodex type drugs. (Xtandi is in that class and much more potent than Casodex, but is also far more expensive and may not be needed yet.)

I am short of time at the moment, but here is one more point, and it makes me concerned about your doctor. The goal for ADT is to get your PSA to at most less than 0.05, and even better to less than 0.01, not just to less than 1! So called “ultrasensitive PSA tests” are used to see how low your PSA actually is. The experts I follow believe that ADT needs other therapy in support IF it has been well done (such as T less than 20 and DHT less than 5) but the PSA will not decline to less than 0.05.

That’s a lot to digest for now. I can give you some leads to sources of information if you would like them. I’m hoping you will find that DHT was monitored and was below 5, but I will not be surprised at all if that was not done even at a major cancer center.

 
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Old 10-22-2016, 05:35 AM   #5
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Re: Advanced Prostrate cancer progression spine

I am glad for you that your ADT has gone so well. My experience is obviously different and I am not interested in criticizing my doctors treatment, which indeed was firmagon in beginning to shrink tumor before the radiation treatments. Hindsight is 20-20 and if I were offered a second chance I would not have delayed as long before the EBRT and seeds, which took over three months after diagnosis due to travel and a bout with pnuemonia and starting the firmagon.

And I am not off ADT as you supposed, my chemo treatments are in parallel with Lupron 3 month shots. I intend to ask my oncologyst about the back door you mention during next visit, but recognize my cancer is metastisized to a number of spine and other bone locations and spread in the presence of low T.

Still interested in feedback from others re experience with progression of advanced disease

 
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Old 03-30-2017, 05:00 PM   #6
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Re: Advanced Prostrate cancer progression spine

Hi Ralph,

I just saw your post on a current thread. How are you doing?

I have some more information to pass on, much of it due to having studied the DVD of the 2016 Conference on Prostate Cancer in Los Angeles last September, much of which dealt with advances in treating cases such as yours, including some patients whose cancer is thriving despite very low testosterone. I’m referencing times in at least one of the talks below, especially the one by Dr. Charles Myers, MD, a prominent medical oncologist. The times will help me go into greater detail or give you leads to published studies if you are interested.

I am heartened to learn that you are on a combination of chemo and ADT, the kind of approach that has been helpful for advanced patients as proven in the CHAARTED, STAMPEDE and other trials, though done at the outset in those trials.

Did you ever learn whether your DHT level had been measured? That still might be important, and some centers and doctors are still not aware of that importance. Do you mind indicating where you are being treated, what center?

Are you having genetic testing done (blood test by Caris, Guardant, FoundationOne, others)? While there is still a lot of work that needs to be done to advance genetic technology, which was only a gleam in the research community’s eye a decade ago, some genetic research is already paying off for a growing portion of patients with advanced cancer.

For instance, do you know whether you have TMPRSS2:ERG gene fusion? Having that fusion contributes to poorer outcomes, and, surprisingly, aspirin is apparently good at countering that fusion (Myers, 2:14 into talk). Do you have loss of the PTEN anti-cancer gene, or loss of that gene’s “expression”? That too contributes to poorer outcomes and can be countered with the old and cheap diabetes drug metformin (Myers, earlier in talk also in conjunction with the gene fusion). Have you been tested for the TUB-3 gene? If you have a lot of it, taxotere can’t do its job, but if you are low in TUB-3 you are likely to respond well to chemo. (Myers, about 2:43). Do you have the BRCA-2 gene, which is very important and present in 20% to 30% of taxotere patients, maybe all prostate cancer patients? If so, then you are likely to do poorly on taxotere chemo, UNLESS you start the drug Lynparza (olaparib), which is highly effective at countering the effects of the BRCA-2 gene (Myers, about 2:44). Do you have a mutated version of the androgen receptor known as ARV7? If so, you are unlikely to do well on Zytiga or Xtandi, but are likely to do well on chemo (Myers, 2:46). While these references are all to Dr. Myers’ talk, similar comments were made by Dr. Nick Vogelzang, MD, another prominent medical oncologist, and by others. Xofigo has been addressed by both of us earlier, and Dr. Vogelzang is arguably the world’s leading expert on use of Xofigo. This is not an exhaustive list, but the point is that genetic testing that guides case strategy is making a big difference for advanced patients these days. However, a friend of mine just died from prostate cancer who might have had more good time with genetic testing; despite encouragement from friends, he never had the BRCA2 gene test. Not all leading doctors are using these advances yet, and some of us are going to die earlier because of that.

Did you ever get into an immunotherapy trial? The immune drug ipilimumab (Yervoy) just missed approval for prostate cancer by a hair, but since it is approved for other cancer, it can be prescribed “off label”. Dr. Eugene Kwon of the Mayo Clinic in Minnesota is the leading expert, and he is using a lot of Yervoy for patients with advanced cases similar to yours. (Dr. Kwon is one of the experts who is not yet making much if any use of genetic testing. I think that is partly because he is so busy with immune therapy and advanced imaging, as well as more standard approaches.)

I am relaying some of the exciting developments I have learned about, but I have no enrolled medical education and thus can only offer leads and assistance in navigating the wave of progress in managing well-advanced prostate cancer that we are now seeing.

 
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Old 04-21-2017, 10:40 AM   #7
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Re: Advanced Prostrate cancer progression spine

IADT3since2000

To answer your inquiry I am ok but cancer still progressing. First chemo (taxotere) failed to stop progression so went to jevtana/platinum combo chemo. That was strong stuff and really wracks the body, but after 5 treatments three wks apart progression was stopped so I went on to Xofigo (radium 223 w alpha particle) to get the growth in bones.

I had genetic testing done by Invitae 25 genes- APC, ATM, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4, CDKN2A, CHEK2, EPCAM (Deletion/duplication testing only), MLH1, MSH2, MSH6, MUTYH, NBN, PALB2, PMS2, PTEN, RAD51C, RAD51D, SMAD4, STK11, TP53. A Variant of Uncertain Significance, c.3416G>T (p.Ser1139Ile), was identified in BRCA1.

I was enrolled in an immunotherapy trial which I had to quit after the first chemo failed as no longer valid with trial. Received two of planned 10 treatments. In May I can return to NCI and may then be eligible for a particular trial since I will have been cord compression free for one year.

Last edited by Administrator; 04-21-2017 at 11:06 AM.

 
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Old 04-22-2017, 05:19 AM   #8
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Re: Advanced Prostrate cancer progression spine

I wish you good luck. It appears you are getting good care, and I hope you will be able to get back to that immune system drug trial.

 
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