Anyone have experience with Xtandi? It’s the last treatment we have to try.

[alirose1988]

My father is 72 years old and has had many health problems for the last 10 years. He is in the final stage of prostate cancer. It has spread to his bones and the doctor thinks bone marrow as well. He had a horrible reaction to Zytiga and Now we are starting Xtandi. It is the last option as he is too weak for chemo. Has anyone else been in this situation? It feels like the end but I hope not. He spends most of his time sleeping and is pretty much wheelchair bound.

[gusgold]

A,

I am on Xtandi which can cause your free T to rise so I take Avodart to prevent the T from converting to DHT....I also take Arimidex to prevent excess Estradiol....check with your Doc....this was rec'd by Dr. Myers. What kind of reaction did your Dad have to Zytiga

Gus

[alirose1988 in reply to gusgold]

It caused his muscles to start to break down. I forgot what the term for it was. He was in the hospital for three weeks. Also there were some kidney problems and he has become severely anemic. They didn’t know if that was from the Zytiga, but the muscle stuff definitely was.

[gusgold]

M,

that is a good list of supplements

Gus

[GAdrummer]

"He spends most of his time sleeping " sounds like my husband. The various forms of ADT do that to a man. Wishing him success with the Extandi.

[alirose1988 in reply to GAdrummer]

I know it’s hard to watch. He has no interest in anything anymore.

[GAdrummer in reply to alirose1988]

Writing novels is all that keeps my husband interested. He has self-published ten novels since his diagnosis mPCa in '09, the latest last week. He'll be 80 Sunday, and has been thru all the ADT, Provenge and now finishing a year on docetaxel with the PSA rising again. Maybe you can help your father find a new interest like telling you family history while he can still remember the stories. It is important that the stories be recorded in some format, video or digital for the rest of the family and future members especially. Short, regular sessions would give him something fun to look forward to. Does he have a pet or frequent access to a family pet? Petting an animal releases hormones that make humans feel better.

[j-o-h-n in reply to GAdrummer]

RIM SHOT!

Good luck and Good Health.

j-o-h-n Friday 05/04/2018 6:15 PM EDT

[alirose1988 in reply to GAdrummer]

I’m doing my best, but every time I try to get him to do anything like that he says he doesn’t want to. Nothing is working. He hasn’t showered in a week. I’m going to force him tomorrow.

[Walkingwell in reply to GAdrummer]

Writing novels! I like the sound of that. I am doing the same. Share?

[ctarleton]

I will be 70 this summer, and have been on Lupron for 4 1/2 years and added Xtandi for 16 months. Original diagnosis very metastatic to many bones and lymph nodes, and a starting PSA of 5,006. My major side effect since adding Xtandi has been an increased level of general fatigue. I still try to get up and walk around the neighborhood, and to do some very light yardwork, but my body just wants me to do it more slowly these days. Yes, it is a real drag.

I hope the Xtandi might have some good effect for your Father, despite the Zytiga not having worked so well.

(Personally, I'm still keep some doors open to possible future treatment options such as Docetaxel, Jevtana, Xofigo, Carboplatin, perhaps some Immune agents in some future Clinical Trial, depending on some future genetic profile of evolving tumor cells, etc. But, all these kinds of things are largely a matter of Luck, circumstances, and personal values/decisions. And subject to change, "at the will of our bodies" and our disease progress.)

As for other side effects, (I'm not a doctor), I might wonder about ruling-out some other things, or considering some other treatment options.

With muscle weakness, particularly in the legs, I would want to rule out the possibility of any impingement of nerves leading to the lower extremities due to possible spinal mets or skeletal instability. If that may be happening, I would ask whether some palliative spot radiation might be considered?

With really bad fatigue, particularly with associated blood anemia, I would want to review my hemoglobin and other red blood cells type lab results trends. Are the results low enough to justify some blood transfusions? Are the results low enough to justify a reduction in dose of any of his current medications? Have any of the medications intended to boost the body's production of red blood cells been considered or attempted? See also:

my.clevelandclinic.org/heal...

If you need to call in some Palliative Care folks earlier rather than later, please don't hesitate to do so. They can be helpful in many ways, particularly with pain management.

I hope your Father feels better, and stabilizes for a while. Remember to "care for the caregivers", too.

Charles

[alirose1988 in reply to ctarleton]

Thank you so much. I will look into some of these things. The doctor told me this was the last treatment option, but maybe I need another opinion. He is still getting Lupron as well. He has had multiple blood transfusions lately and they haven’t seemed to give him anymore energy hoping for the best, but hate watching him suffer.

[ctarleton in reply to alirose1988]

..."He has had multiple blood transfusions lately" ..... etc.

So sorry to hear that these have not helped, and that his body/bone marrow has not yet been able to recover enough to produce all types of needed healthy blood cell types on its own. If one reads the Full Prescribing Information for many of those other Options mentioned, there are recommended minimal blood test levels that need to be met before starting most of those drugs, per the prior clinical trials and safety studies for those treatments, and FDA approval for use in advanced prostate cancer. It may well be, in that sense, that many of these options might currently be ruled out, for now, or at least on indefinite hold.

I do not want to take away hope, nor to be discouraging, but I was close to a man in a recent local cancer support group who faced similar challenges. In his case, his blood levels "crashed", and despite 20+ transfusions over an extended period of time, they did not recover. Low Platelets was his main problem. He had to discontinue the Xofigo (Radium 223) that he had started, and was off treatment for several months. Unfortunately, he suffered a fall and then a brain bleed and then other complications that indirectly contributed to his death after going through several treatment modes.

It was a complicated situation, and there were some things that were worth noting from his spouse, in hindsight. They did not have any Advanced Directive for Health Care Decisions, and things would have gone much, much easier in the final weeks had they done that before his last few trips to the hospital. She was ill-prepared for his growing immobility in the home and to/from labs, appointments, and Emergency Room visits; some advanced caregiver assistance and earlier Palliative Care assistance would have help a lot. Even though she was a "force of nature" in trying to do everything she could to advocate for her failing husband, after several months she really got behind the power curve, and was exhausted, and needed more "care for the caregiver" than she ever expected. The financial aspects became a growing snowball of details, despite their having great health insurance. She really had to advocate hard to get a single physician to be the "captain of her team" to help coordinate between the various specialists, doctors, and hospital staff as her husband went in and out of the hospital.

After he died, which in the end only took a couple of days, following what appeared to be a stroke, she learned some things that changed her perspective somewhat on her hopes that he would have gotten better: His disease had also been "crowding out" some of his healthy bone marrow to a significant extent. They discovered that he had many previously undiagnosed small mets in his liver that might have taken him soon anyway, perhaps with even less quality of life toward the end. Etc.

I guess it just goes to show that everybody's disease and progression is unique. And often unknowingly complicated. I will be in some similar position someday, myself, as my Stage IV cancer eventually progresses. All the more reason to do the best we can, and to care for and love one another in the present moment.

Big Hugs to you and your Father.

He is very lucky to have you.

Charles

[alirose1988 in reply to ctarleton]

Thank you for such a sincere response. I have been getting things in order, which is sad, but necessary I just don’t know how long he is going to suffer through this. I feel terrible for him.

[Bebby1 in reply to alirose1988]

Alirose... it sounds like dad has the best treatment right beside him.

The brave men on this site are full of knowledge and insight

Prayers and thoughts are with you xxx

[whatsinaname]

I am 62 years old. Diagnosed less than a year back. Treatment with ADT began 10 months. My PC is metastatic, spread to the bones. Does that mean I am in my final stages ?? I do everything quite normally including showering daily without fail.

Even if I were in my final stages, frankly I am going to enjoy life down to my final seconds.

Eating everything, no candles, little or no exercise, a lot reading and traveling. If I am in a minority of one on this board, so be it Cheers !!