Xofigo sent me to the ER

[Chuckujo]

June 13th I had my 4th Xofigo infusion and over the next three days I grew weaker and more fatigued until Sunday night, I couldn't move. My muscles would not work in my legs or arms and my wife had to call EMTs to get me and take me to the ER. I spent the better part of the week in the hospital recovering and then the better part of the next week in a rehab facility until I was self sustaining enough to go home. I don't want to ever experience this again and wonder if anyone else has experienced a similar condition.

[LearnAll]

Feel sorry to hear your reaction to the med. We certainly need safer and good meds ...and also supplements to prevent bone mineral loss. A lady told me this week that she did make her bones better with eating sesame seeds daily and something called thai-horse ..lets keep moving to slow osteoporosis and have our calcium (natural source better) and Vit D...protect ourselves as much as possible from highly toxic meds.

[ctarleton]

A little over a year ago there was a doctor in a weekly support group I attended who developed severe abnormal blood cell counts after several rounds of Xofigo for his very advanced metastatic prostate cancer. He was repeatedly "rescued" via multiple transfusions, but even those did not work after a while. He was losing weight very fast. Very low hemoglobin counts created crushing fatigue and weakness. His platelet counts were in the tank, too. His wife got the local EMTs to help move him out of the house several times as he grew weaker. The final straw was when he fell in a parking lot on his way to get some lab work, and had his condition compounded by a brain bleed and other side effects in the couple of weeks before he died.

In the Full Prescribing Information for Xofigo there is a section that states:

"Hematologic evaluation of patients must be performed at baseline and prior to every dose of Xofigo. Before the first administration of Xofigo, the absolute neutrophil count (ANC) should be ≥ 1.5 x 109/L, the platelet count ≥ 100 x 109/L and hemoglobin ≥ 10 g/dL. Before subsequent administrations of Xofigo, the ANC should be ≥ 1 x 109/L and the platelet count ≥ 50 x 109/L. If there is no recovery to these values within 6 to 8 weeks after the last administration of Xofigo, despite receiving supportive care, further treatment with Xofigo should be discontinued. "

I can identify with your sentiments of .... "I never want to ever experience this again...". No matter what our treatments, there is a constant rolling trade-off and balancing of risks vs. benefits. Hope you keep feeling better as some recovery time goes by.

Charles

[Chuckujo in reply to ctarleton]

I just had a meet with my MO and I told him I didn't want to go thru that again and he supported my decision.

[Hidden]

I take vit K2 with nattokinase supplement for bone health. I'm not metastatic yet.

[j-o-h-n]

WOWIE....So what does your MO say? Hopefully he doesn't say "Chuck U Jo"

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/03/2019 6:16 PM DST

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

I had a meet with my MO yesterday and told him I dint want to go thru that again and he agreed with me. He actually wanted to take me off the xofigo the month previous to my 4th treatment because of the side effects I experienced, but I said I wanted to continue. I dint think it was much worse that chemo. It is now and I want off. So I guess I will be on chemo again. We'll see. It's been 4 years since I started down this road and I am hoping the side effects start to go away so I can get back to doing something other than wishing and hoping. The fatigue and weakness are really the worst.

[ctarleton in reply to Chuckujo]

Hope you feel better soon with the fatigue and weakness. As you continue to keep track of your blood counts, you might get some ideas or things to discuss with your doctor from this link if you suspect the oxygen carrying capacity of your blood may still be low.

cancer.org/treatment/treatm...

Charles

[Chuckujo in reply to ctarleton]

Thanks

[j-o-h-n]

Well I don't blame you... it's a tough and a long haul.... I wish you strength and hope....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/06/2019 1:00 PM DST

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

Thanks John