Xofigo. What should I be aware of?

[roke]

Looking for anyone's experience with Xofigo, and preferably with Xtandi.

And feedback appreciated!

[Tall_Allen]

The combination of Xofigo and Zytiga made matters worse, even in some men who used a bone strengthening agent. There is an ongoing clinical trial of Xofigo+Xtandi+bone-strengthening agent - we'll have to see if it does any better.

There are some early indicators that Xofigo does combine well with Provenge and with docetaxel (perhaps all three together).

[Olivia007 in reply to Tall_Allen]

That’s seems grueling my father had provenge and that was taxing on all of us physically and mentally then to add xofigo and doxetaxel there is only so much a human body can take? How much time goes on in between the treatments before you start them?

[Tall_Allen in reply to Olivia007]

Xofigo was given every 6 weeks for 5 infusions, and docetaxel was given every 3 weeks for 10 infusions. The combo reduced the dose of docetaxel, yet was found to be more effective than the full dose, while incurring fewer serious side effects.

ejcancer.com/article/S0959-...

[Olivia007 in reply to Tall_Allen]

They were given both at the same time no breaks in between

[Tall_Allen in reply to Olivia007]

Right.

[Magnus1964]

At present I am on xofigo and xtandi. No problems so far. I have been on xtandi for years and have had 2 infusions of xofigo.

[Olivia007 in reply to Magnus1964]

How did u do on xofigo did it help with pain reduction

[Magnus1964 in reply to Olivia007]

I have now finished with xofigo. When I started it I was using a cane to go any long distance. Now I don't need the cane😃.

[Olivia007 in reply to Magnus1964]

That’s awesome 👏 it great to hear good news!!!

[ctarleton]

I have known a couple of men from some support groups who took Xofigo after already being on Xtandi for quite a while.

One man had very extensive disease that was all over in his bones, and who had a history of needing several blood transfusions before his blood work numbers were good enough to even start Xofigo per the Full Prescribing Information. Here's a link, which includes dosing criteria and collective reports of Adverse Events during prior Studies.

accessdata.fda.gov/drugsatf...

During his very real but anecdotal experience, he and his wife really went through some ups and downs with his Xofigo treatment and side effects. One time an error was made in a calculation of dosage, based on his body size/mass. It may or may not have actually made a real difference in the actual progress of his disease or his side effects, but it was an extremely high source of anxiety for his wife. In his case, the absolute need to Really stay on top of blood levels while on Xofigo, and to adjust/delay doses really came to the forefront. Unfortunately, he died from accumulated "blood levels crashes" side effects and also as the result of a brain injury sustained during a fall when he tried to go out by himself to get some blood work done while he was being treated. The emotional toll on the wife was quite difficult, and compounded by the amount of energy she spent in efforts to keep pursuing things via legal actions taken after his death (mostly for naught, as it turned out in a practical sense, but certainly all-consuming for her while it was all happening). What I took from the experience was that vigilance during any treatment is important, and that practical/emotional preparations for "life transitions" before, during and after death are important, too. I've felt very humbled that I had started my journey with a PSA of 5,006 and similarly extensive mets a couple of years before he was diagnosed, and have now outlived him by a couple of years, while having been on few advanced treatments.

The other man was a 12 + year survivor who has had good responses to many of his prior treatments of his originally wide-spread disease. His overall quality of life during most that time was pretty good, aside from most of typical ADT side effects arising from low testosterone for such long periods of time. His PSA had bounced around between 16 and 100 for all those years, never getting really low. When he recently added Xofigo, he went right through the full course with some tiredness each time. His main comment was that he was tied to being near a toilet for most of the time, due to loose bowels. That quickly resolved when he was done. He's back to doing his by-now-usual life stuff again, and monitoring future PSA results and periodic scans. What I took from this was that long-term survivals and relatively acceptable quality of life can sometimes happen regardless of whatever specific PSA numbers may be doing, and that responses to various treatments can sometime last longer than one expects.

What I took from both of their experiences is that they were also consulting with very good doctors who were top specialists in advanced prostate cancer. Whatever the unique make-up of their evolving cancer cells, they were being offered a better range of treatment options than they might have found elsewhere.

As always, we are individually "statistics of one". Whether we get lucky or unlucky, we do our bests to live as well as we can with the time we continue to live.

Personally, I've been on Xtandi for a little over 3 1/2 years. General background fatigue and reduced energy levels/strength are my main things. For me, Xtandi has been much like an extension of the trend started over 6 1/2 years ago when I started ADT-for-life at age 65. Even though my PSA has been trending upwards in recent months, "I'll take it", and will keep riding this horse for a while longer. Meanwhile, I've just taken my Keytruda # 4 for metastatic melanoma that recurred during the past year. It may get me first, but who knows? Meanwhile, I seem to be appreciating some of the little, simple, beautiful things in this world just a little bit more each day.

I've found that sometimes I'm better off trying not to overthink absolutely everything (easier said than done, of course).

Just some thoughts...

Charles

[MateoBeach in reply to ctarleton]

Very valuable perspective and lessons well shared, Charles. Thank you. This post is very valuable and humbling for me.

[GoBucks in reply to ctarleton]

Agreed, great perspective. Thanks Charles. I will smell my roses and lilac bush as soon as I get home.

[Walkingwell in reply to ctarleton]

Thank you, Charles. Just a couple of cases, sure, but very useful to me. I may start Xofigo in the next couple of weeks.

[Olivia007 in reply to ctarleton]

Can I ask how old was the first gentleman that was on xofigo that died?

[ctarleton in reply to Olivia007]

He was 62.

[Olivia007 in reply to ctarleton]

Wow that’s young!!!

[annjohannsen]

Husband was on both a few years ago. I don't remember anything major happening.

[Olivia007 in reply to annjohannsen]

Did it help him? My dad might have to try this next but He’s not so sure? Did it help ur husband with the bone pain and how old is he? Thank u

[annjohannsen in reply to Olivia007]

Hi There,

My husband is 67, but he was probably 64-65 when he was on Xofigo. I don't remember much either way - no bad side effects, but I don't think it helped him in a major way. There was some improvement but nothing notable. He did not have much bone pain at the time. Each man is different. I wish you the best - it's so hard to know what to do.

[Hidden]

I burned through Xtandi fairly fast. I just finished my 4th infusion of Xofigo. It seems to have worked on some pain points in my hip, rib and back. Blood tests are great, no bowel problems. Had fatigue for days on first 3 infusions but am doing quite well on the 4th. PSA has held steady at 32 since starting. Going salmon fishing tomorrow!

[roke]

I also only had a short ride with Xtandi. And, I had just one Xofigo injection before

we decided on back surgery. The surgery went well, and now I'm on Lupron and

Xgeva . I'm trying to make it into a Clinical Trial at UCSF with a drug from Univ of Washington. not as yet approved,

Thanks for your replies! Roke

[Olivia007]

How did u do on xofigo did it help with pain