Recent 2020 research report, and one in 2017 showing Xofigo may have a much higher risk of serious side effects on bone marrow than thought!

[JLS1]

Unfortunately, some of us here have been suspecting this, due to personal experience:

"Twenty-three patients received Xofigo at UF Health, and one was lost to follow-up. Sixteen patients (73%) completed the full course (six doses) of Xofigo, while six did not. Ten patients (45%) developed pancytopenia, with two recovering counts within eight months while the other eight had persistent cytopenias (six of which were transfusion-dependent). Older age and higher ECOG score correlated with increased risk of pancytopenia. In addition, a higher percentage of patients who received prior radiation therapy were more likely to develop pancytopenia (90% vs 75%). Conclusions We found a higher rate of Xofigo-induced pancytopenia in our patient population than the 2% reported in the literature, albeit with a limited sample size,"

Cureus. 2020 Jan 28;12(1):e6806. doi: 10.7759/cureus.6806.

A Single-center Retrospective Analysis of the Effect of Radium-223 (Xofigo) on Pancytopenia in Patients with Metastatic Castration-resistant Prostate Cancer.

ncbi.nlm.nih.gov/pubmed/321...

Another study, from Dec 2017:

"The analysis of these parameters suggests that, in patients with a high skeletal tumor burden, the incidence of bone marrow failure in the course of radionuclide therapy could be higher than what reported previously. Further prospective studies are needed in order to confirm these data."

Tumor Burden and Intraosseous Metabolic Activity as Predictors of Bone Marrow Failure during Radioisotope Therapy in Metastasized Prostate Cancer Patients

ncbi.nlm.nih.gov/pmc/articl...

[Tall_Allen]

The optimum time for Xofigo is when tumor burden is low (Unfortunately, some bone pain and no visceral metastases are required for prescription, and it can't be combined with Zytiga). That is probably true for all radiopharmaceuticals. When there is bone marrow infiltration, all treatments (radiation or chemo) are much riskier.

[Sportscar in reply to Tall_Allen]

Since I'm taking both Xofigo and Zytiga, I must ask why they shouldn't be combined. I could not follow the infiltration issue. Could you elaborate just a little?

[Tall_Allen in reply to Sportscar]

There is a black-box warning about combining them. The trial comparing Xofigo+Zytiga to Zytiga alone was stopped early because "more fractures and deaths were noted in the radium-223 group than in the placebo group."

thelancet.com/journals/lano...

It appears that the problem may be partly resolved by using a bone strengthening agent. When they looked at the subgroup who had taken bone strengthening agents, 15% of those taking Xofigo+Zytiga vs 7% of those taking Zytiga-only experienced a fracture. So even though Zometa or Xgeva reduced the fracture rates by about half in both arms, the fracture rate was still twice as high among those taking the combination.

urotoday.com/conference-hig...

There is an ongoing trial to see if there is the same problem with Xofigo+Xtandi (everyone is also using a bone strengthening agent).

[Zetabow]

Had my first blood test today (2 weeks from first infusion) my P-LCR is low and RO wants to do another blood test next week. I wonder if they will hold back on the second infusion if blood counts don't stabilize. My PCT number was also just below acceptable range but I feel no symptoms . I am feeling more fatigued though.

The pet scan just before they started the treatment showed 17 new spots, in hips, spine shoulders and ribs and I had lot of bone Mets and marrow invasion in both Femurs when first diagnosed Nov 2018 and needed regular transfusions during Chemo, the combined Chemo and ADT did a good job at stabilizing me.

On the up side it has made a good improvement on my pain levels, I still get strong breakthrough pain but this only first infusion. Reading the comments here this treatment sounds quite risky, I assume if they're monitoring blood almost weekly they should be able to keep on top of things, after 18+ months of pain, a little relief has been very welcome.

[JLS1 in reply to Zetabow]

I'm so glad to hear your first Xofigo treatment went well and you're having less pain! What exactly were the RBC, Hemoglobin and Platelets on your last couple blood tests? My husbands numbers improved with the first 2 Xofigo treaments, then after the 3rd the numbers started to deteriorate. In hindsight, that should have been a warning. The 4th treatment was the nail in the coffin for him. 16 days later after the 4th he was in the ER for bone marrow failure - RBC at 1.86, hemoglobin went from 8.2 to 6.1, platelets dropped from 98 to 52.

I wonder if (instead of 8 days before!!!) my husband had a blood test THE DAY OF his 4th treatment, the same way blood is tested the day OF chemo the results would have put up a red light, and the 4th treatment would have been withheld, to save him!! If I were you, I'd request that - to have your blood tested the day OF your scheduled Xofigo treatment, BEFORE you get the injection.

Also, per the links I posted, in the research, they state there are tests to identify which patients are at much higher risk of developing bone marrow failure with Xofigo - specifically patients with a lot of mets in the trabecular bone. Oncologists recommending Xofigo should know this - Bayer should make sure they do!!! This may be worth looking into, and requesting the test/s - might save your life. My husband would likely still be here today if we knew this!!

We were told by the specialist who administered the Xofigo injection that if patients require blood transfusions to get through Xofigo that it's usually after the 4th. I do NOT remember bone marrow FAILURE being discussed, and trust me, the way I am, I would DEFINITELY have remembered and been all over it, researching the moment I got home. I would have found the research I posted, and we would NOT have proceeded with the Xofigo!!

[Zetabow in reply to JLS1]

I don't know the numbers because she called me at home and just said she was concerned about the numbers, I will get a printout on Wed when I go for my blood test.

They do the blood test before the infusion and wait for the results before doing anything, I get the impression they're ticking all the safety boxes.

I'm very mindful of your tragic story and have a good level of trust with my medical team as they seem to be very professional.

Today I'm quite fatigued and been sleeping a lot, pain levels have been really good. I estimate it's been a good 20 months of horrible pain, feeling almost normal is a distant memory, it has raised my spirits.

I set up a FB Macmillan cancer fund for my coming birthday, it reached it's goal within an hour and still growing, it warms my heart to know I have such good friends all over the world.

Thank you and take care.