XL184

My husband's scans after Cometriq showed a dramatic reduction in tumor size and his blood work was much improved, unfortunately is was short lived - 8 months.

Not too sure what the Xofigo/Xtandi combination is doing. Blood work showed an improvement in Alk. Phos. We have an appointment tomorrow with the Oncologist and another treatment scheduled. Not seeing much improvement with pain, shortness of breath, walking and appetitive but we will continue to fight for right now.

Zimac

Ksalmon,

My husband was on 40 mgs. of Cometriq once a day for 8 months. Most of his side effects were GI related, vomiting, nausea and a 40 lb. weight loss. The good thing was that the Cometriq took away his pain almost immediately. My husband seems to be tolerating the Xofogo/Xtandi combination better then the Cometriq. Not sure yet what's going on with the combination therapy as it was just started 2 months ago. He is due for scans in one month. He did have lung radiation for his labored breathing a few weeks ago - much improvement there and breathing normally.

When I said blood work was much better I am referring to his Alkaline Phosphatase, LDH, and CBC. PSA is high so we don't pay much attention to it, but it did go down.

If your Dad is having pain, the Cometriq really, really helped. Side effects are so different for everyone. I wouldn't hesitate to give the Cometriq a shot.

Best of luck with your Dad. Supportive children are a blessing to have.

Zimac

Hi Zimac,
Was searching for info on xl184 and came across this post. My dad is a Gleason 9 with extensive mets. He has tried zytiga, Provenge, Xtandi and taxtore. He recently was on xofigo. On the second month he had increased pain so scans were done and disease progressed to the liver and lungs. He has been sleeping 80% of the day for the last 1.5 week. Losing weight and just detiotaring. Doc now will prescribe xl184 off label. Still going through insurance it's been day 3 and no word yet from insurance. Was wondering if your husband started zytiga before xl184. Some say if you have been on zytiga, xl184 does not work. Looking for some insight. And hope your husband is doing well!

Thank you Zimac for the response. The bad news hit us this week and it's been rough. We were at radiation planning yesterday and the radiologist said that there will be a chance that the radiation may or may not help his shoulder pain since the mets are everywhere and very hard to pinpoint. The nurse sat down with me while dad was getting his scan and said we should plan on completing health care proxy and etc. After this visit I lost hope. His current condition is very serious and if the drug doesn't work it will be a matter months. He gets off and on low grade fever that is most likely contributed by the new liver lesion. This week he can barely walk and his weight is 96 pounds and complains of having hard time swallowing. Hoping to hear from the oncologist soon on the drug. Everyday counts as his Psa has doubled in two weeks at 496. I have been with him very step of the way and at every treatment he is very optimistic but since the bad news all I see is him staring out in space.

Hi Tall Allen and Ocibote:

Ann, so sorry to hear of the difficult times you and John are having. I am also in Canada with a rising PSA and CRPC and previous bone mets. I am a subject of a Study at Sunnybrook in Toronto on SBRT and oligometastases. As you can see from my signature below, I have had 3 bouts of targeted radiation and the current scans in Canada show no progression, notwithstanding my rising PSA.

I note John is taking Zytiga and you are unsure of the effect it is having. For what it is worth, I have been on Zytiga for 2 years now and even though my PSA has been rising for the last year, my Toronto oncologist believes Zytiga is still having an effect, so I am staying on it for now, with no side effects.

However, I am interested in XL184 but living in Eastern Canada, I am not close to any Study Centers where I could obtain it.

You wrote above to Allen:

"Many thanks, as always, Tall Allen, for all the information. Thanks especially for the comparison of the studies being done here in Toronto and in London, ON. You have helped clarify that choice in my mind."

I tried to locate the studies you and Allen refer to being done in Toronto and London, but alas, I could not. What studies were you speaking of?

My thoughts are with you,

Houseboy