Update earlier post re: radiation for bone met pain relief

I posted a query a few weeks ago on palliative treatment options for bone mets and I am now posting the results of the chosen treatment.
Situation:
New development of bone mets in cervical, thoracic and lumbar spine. Very rapid development over period of eight weeks.
Treatments at time were and are Xtandi and Lupron. T level and PSA rising for four month prior to discovery of bone mets.
Participant in NIH trial using Xtandi and was having excellent results prior to discovery of bone mets in restaging scan.
Personal medical oncologist recommended radiation as I was in some of the worst pain I have ever felt in my life.

Treatment:
Five radiation treatments at each location on spine for total of 25 gray to each location.
Continue Lupron and Xtandi

Results thus far:
Five days since last rad treatment
Bone pain is greatly relieved though not gone and movement is restricted as any lifting or sudden movement results in a sharp pain behind my shoulder. Down to one pain pill a day. At night to help sleep.
Still some pain in upper left arm. A heating pad seems to relieve this a bit.
Difficulty swallowing. This came on gradually and feels like there is a lump in my throat or a restriction right about where my collarbone joins my neck.

Thinking about the future:
I love to garden and putter around the house making garden furniture, trellises, planters etc. I am not sure I will be able to do this going forward. I tried making a trellis for a rose I bought and had to stop. Paid the price that evening for agitating the back. Guess I should wait.

The swallowing thing has me real nervous as a friend of mine wound up eating through a tube after throat radiation and surgery over five years ago. He still uses the tube and will likely never know the pleasure of the taste of a good steak for the rest of his life. I am hoping mine will resolve or not worsen.

Also thinking I may need to sell my home and find some place that will not require as much work inside and out. I live alone so it is a burden and I am a neat freak. :) My Daughter has said she does not want the home so maybe that would be a good thing.

Thanks to those who responded and advised on my original post.
Don

Don,
Good to hear you have some pain relief. I am hoping that your SEs will end up being minimal and that you will see some recovery from all of this.
Bill

Don, glad to hear the radiation provided some relief, perhaps some of the SE will diminish over time. What about Xofigo for your bone mets ? It is a systemic type treatment......I've heard it can provide excellent results for bone mets.

Ziggy and Celebrate,

Good suggestion I will ask my med onc about this on my 3/29 appointment. I will also do a bit of research prior. As I recall this was the radium 123?

Don

Allen,
You are a wealth of information. I usually read your posts to others and always find something useful. At this point the three spinal mets are all that have shown up besides the lung. I did talk to my oncologist today and he says it is radiation burn causing my throat to swell (which is suspected) and it will resolve in a week or two. Gave me a prescription for "Magic Mouthwash" so I will try that for temporary relief. (sounds like snake oil doesn't it?)

So far I have not had any chemo. Started with RT + HT. Continued on HT after rising PSA and have been off and on Lupron alone or with bicalutimide until last year when I joined the NIH trial on Prost Vac. I did not get the vaccine just the Xtandi. Blood counts have always been good.

Don

Allen,

The trial was set up for people who have not had chemo and for whom HT had begun to fail. I was in the category. The bone mets appeared after 8 years and the lung mets have been around for the last 3 years. My initial treatment was in 2008. I have read articles indicating early chemo and felt that the horse was out of the barn now as far as combining it with other treatments. My med onc has mentioned the Zometa and the Celebrex and said we could discuss use after we evaluate the radiation results.

Thanks again for the insights.

Don

Allen,
I have discussed chemo with my oncologist before. Three years ago when the lung mets showed up I asked about the possibility of chemo. I was familiar with the Stampede study and mentioned it to him at the time. His position was that lung mets were not a serious development in metastatic PCa. This opinion was repeated to me by the lead researcher on the trial I am in. I did not have any visible bone mets at the time. I like the idea of a systemic treatment that attacks the cancer no matter where it is in the body.

I asked the researchers why they would pursue a drug like Xtandi that does not offer a cure and is primarily a stall. Especially when one considers the cost. The answer was they were looking for alternatives to chemo that are not as toxic to the body but can offer similar results. Made sense to me at the time and still does. My onco had recommended Xtandi rather than chemo for that reason. I entered the trial because of the expense, even with insurance, of the Xtandi. ($2700/mo) My travel cost are far less than my copays would be. The other upside was the close watch on the disease progression using imaging and not psa plus access to a body of knowledge that is not easily tapped.

You may be right that it is time to broach the subject of chemo. I have a staging visit at NIH early April and will likely be dropped from the trial since the bone mets are obvious evidence of disease progression. Even so the lead researcher mentioned that there were some other trial and we could discuss. I really wanted the Prost Vac vaccine which was another motivation to join the trial but did not get selected for that cohort. Luck of the draw. I will take the issue up with my med onc and research team in the next two weeks.

Allen, Thanks for your time and good suggestions. Both are greatly appreciated. You are one of the reasons I find myself coming back to this forum. Good people who share information freely.

Don

I know of no reason why you can't take Xtandi, Lupron and Taxotere all together. In fact, while you didn't get the Prostvac, I've always thought that Provenge (which you can now qualify for) and Taxotere is a particularly good combo. Taxotere is immunosuppressive while Provenge is an immune stimulant - cancelling Taxotere's worst SE. Also, Taxotere leaves a lot of dead cancer cells(as does radiation) in the serum, which gives those stimulated T cells even more stimulation. So far in clinical trials, Taxotere doesn't seem to interfere with the T-cell response. It seems to be a win-win situation.

There are some major clinical trials that are designed to test the combination of chemo and immunotherapy that you might qualify for. A Czech pilot study of another immunotherapy called DCVAC found a 42% survival increase with the combo over Taxotere alone.

Phase I/II clinical trial of dendritic-cell based immunotherapy (DCVAC/PCa) combined with chemotherapy in patients with metastatic, castration-resistant prostate cancer

Based on that, there is now the following study that you might qualify for:

Phase III Study of DCVAC Added to Standard Chemotherapy for Men With Metastatic Castration Resistant Prostate Cancer (VIABLE)

Ravi Madan at NIH is currently running a trial of Taxotere+ProstVac for men with metastatic castrate-sensitive PC, and they've completed a pilot test of the combo for men with metastatic castrate-resistant PC:

A Randomized Phase II Study of Concurrent Docetaxel Plus Vaccine Versus Vaccine Alone in Metastatic Androgen Independent Prostate Cancer

I suspect they will expand that to a larger trial soon. Perhaps you can discuss with Ravi Madan while you are there.

- Allen

Don,

I'm afraid it's my turn to rain on your parade, but I'm sorry to tell you that there is currently no cure for metastatic prostate cancer. All of these therapies delay progression and shrink mets so that you feel better. It is, however, a condition one can live with with excellent quality of life for many years.

The DCVAC study is being conducted in many locations. I don't see any in Georgia, but there are sites in Mobile, Myrtle Beach, Knoxville, Chattanooga, and Pt St Lucie, Fl. Taxotere treatments are usually once every 3 weeks and there are usually 6 infusions given. For the other Prostvac study, you can ask at NIH if they can coordinate the Taxotere infusions with your local oncologist - sometimes they allow that, sometimes not.

Even without an immunotherapy boost, Taxotere is the one medication that adds more survival time than any other.

I think the combo of Xtandi and Zytiga is very promising - they work in complementary ways. The new hormonal in clinical trials, ARN-509 looks very good so far.

- Allen

Don,

No, of course you haven't offended me. "Palliative" is an interesting word here. Certainly these medicines relieve pain, but they also prolong life. But you are right that none of them are cures. In my opinion, there will never be a cure for metastatic PC, but there will be, and have been, great strides made into making it a long-term manageable disease. Consider chemo. The best one we used to have was mitoxantrone - it relieved pain but didn't prolong life at all. Then docetaxel was invented and we are now finding that it not only relieves pain but prolongs life by a median of 17 months if used early enough. Cabazitaxel even works after docetaxel fails. The same kind of incremental progress was made (and continues to be made) with hormonals and their combination. I'm sure immunotherapies (and their combination) will incrementally improve survival as well. Radiologicals too. Then there are all the growth factor inhibitors in the pipeline that may work in combination with any of the above. It will take a long time to get the best ones and combinations, but the trials are certainly in place.

One of the problems with a chronic disease is one's life can get very small. All of one's time and attention gets focussed on the disease. Even when it's possible, it takes a huge effort of will to divert one's attention away from the pressing needs of the disease, and into other pursuits. I don't have any solutions to offer, but I agree with you that it's exasperating.

- Allen

Don
Sorry. I forgot to ask: what kind of scan disclosed your mets? What was your PSA at the time of the scan(s). I've had bone scans which showed nothing and CT pet scans which showed nothing. Not until I had MRI with and without contrast at Sand Lake were " suspicious" iliac lymph nodes discovered.
Thank you!
Bob

Break60, maybe somehow you have inadvertently "ignored" or "blocked" Tall Allen in your profile tools or something like that. If you do that, as is with all open forums, you will no longer see the blocked persons' posts.