I met with my oncologist today and we discussed the use of Xofigo. He asked me if I would consider starting it and I told him I was concerned because I heard recently of quite a few people who have had their blood numbers "crash" after using it. I always thought that it was something you did when everything else failed. But he explained that the problem is that people are using it too late to get the benefit. In his opinion, it's being used as a last resort and shouldn't be.
I did some searching on the subject and found this conversation between Oncologists on the subject. I found it interesting so I'm posting it.
And a quote from the article: Based on our clinical experience, radium-223 should be considered relatively early in the treatment course in patients with mCRPC with bone metastases. Coordination of care among multidisciplinary team members, patients, and caregivers is essential for optimizing safe and effective treatment with all CRPC therapies.
I'm curious if there are people on the forum who have used Radium 223 earlier on in their treatment and the details.
I couldn't get your link to work but I found an article which in part states " Based on our clinical experience, radium-223 should be considered relatively early in the treatment course in patients with mCRPC with bone metastases".
Although the optimum sequence of life-prolonging therapies is not known, there are several arguments for using radium-223 relatively early in the course of mCRPC, when there is a clinical window of opportunity before the development of visceral metastases. In particular, the probability of developing visceral metastases increases over time, which then renders the patient ineligible for radium-223 per the approved indication
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I need to speak with my MO regarding this, thank you.
I'm not sure, but I can say my doctor at the VA is asking me to consider it now and the VA is conservative as far as treatment goes, closely following the US FDA approved drugs, guidelines, standards of care, etc. My guess is that anything they would approve, insurance would also approve.
It's approved for metastatic castration-resistant prostate cancer, so medicare and most insurance will cover it for that. Like almost all medicines, it works best when cancer burden is lowest. I have no idea why people wait so long for this or anything else (especially docetaxel!) The more bone mets you have, the more Xofigo you will need to do the job, the higher the toxicity will be.
I also believe it makes sense to hit Pca hard while it’s weaker, ie low burden ; however, think saw trial results where OS curves for taxotere showed essentially no benefit for low burden but substantial OS benefit for hi burden Pca.
So, would you still opt for taxotere early on in low burden case-given some heavy risks, such as bad neuropathy, potentially affecting ability to walk?
Pod... not to pick an argument; just curious. I was taken aback by the phrase "heavy risks" used in the context of Taxotere infusions. Chemotherapy certainly was not a problem for me in 2004/2005 when my tumor burden was minimal and my body strong. I jumped on it as soon mets to L2 &T3 appeared - within six weeks from my first Lupron injection. Keep kicking the bastard.
Sorry, I was thinking of the risk of a bad case of neuropathy (someone I know), as an example in that category-of course each person is different and can have a different experience , hopefully good
Ok. Big difference between diabetic or alcoholic neuropathy (long term) and Chemotherapy-induced peripheral neuropathy which usually is gone 3-5 months after the last infusion. In my opinion, it's a small price to pay for the 10% or so affected as compared to a potentional life-saving treatment. Worse is a diabetic who blames chemo for the pain. I trust that your friends case was resolved within 5 months? If it was not, I would suspect another cause.
With low burden, I would opt for Zytiga first. However, the degree of side effects were about the same for early docetaxel and early abiraterone - they were different in kind. When people complain of side effects on sites like this, we get a warped picture of their actual incidence (availability heuristic).
As far as experience goes, I can only speak for the side effects of Docetaxel. I tend to minimize the side effects of Zytiga in comparison, but my doctor cautioned me against minimizing them. He reminded me that I could be on Zytiga for many years and there are long-term issues.
I think as a general rule, Docetaxel side effects are more difficult, but over less time.
Haven't used it, but it's early in my course of treatment. (I hope it's considered early.) I'll be starting radium 223 in the near future. Have been on Zytiga and Lupron for a year and my PSA started to rise again. My MO dropped Zytiga and ordered radium 223 for me after bone scan showed increasing activity along my anterior right iliac and increasing activity on my manubrium.
I think your MO is right. Check out the conversation between the oncologists in my link above. They are discussing using Radium 223 in the CRPC setting somewhere after second line, but before the disease really starts ramping up. It's a very informative discussion.
Gregg, It is true that if you have soft tissue mets beyond a certain length in the long axis they will not approve xofigo. To the best of my knowledge xofigo does nothing for psa, so it would be good to do it when the psa is relatively stable, Did your MO say anything about starting zytiga.
Xofigo can only be administered on patient with metastatic disease limited to bones. Xofigo binds to calcium of bones which is the reason why Xofigo has to be stopped ethically when mets jump into soft tissues and organs since radium-223 would not reach those mets. Hope this answers your question.
I agree that there shouldn't be any reason why they won't give you Xofigo, but they won't if you have have visceral mets beyond a certain size. It's ridiculous really.
I did 3 Infusions of 223 following Chemo. But then my Dr found visceral metastatic-CRPC in my liver. I had already done ZYTIGA. After a bone scan also showed increasing activity along my anterior right iliac and increasing activity on my manubrium everything came to a screatching halt. We made application for imunothearpy ... I was told it should take a week & 1/2 ... it has been 6 weeks.
I have been in this battle for almost six years (please see bio for complete treatment history).
Like you, an MRI in 9/17 revealed liver mets, so I had 6 cycles of Docetaxel/Carboplatin which brought PSA down from 10.8 to .4 and liver mets smaller and less defined.
Have you had any genetic testing, like Guardant360 liquid biopsy?
Very interesting discussion on OncLive. It’s great knowing that these doctors are refining treatment protocols and pushing things like Xofigo earlier in the treatment plan.
Maybe someday soon they will also approve it for hormone sensitive patients with bone metastases, similar to what they have done with docetaxel and Zytiga (unrelated to bone mets).
I’m oligometastatic, but still hormone sensitive, and at my last scan, my lone bone tumor on the inferior pubic ramus didn’t even light up. My MO at the Mayo Clinic in Jax has me scheduled for a bone scan during my next regular visit on 7/13 to see if my bone mets status is still stable, or if I might need to add Xgeva. Apparently, I don’t qualify for Xofigo because I’m not yet castrate resistant.
Incidentally, to those of us who are still hormone sensitive, that link to OncLive also has a very interesting video of the same panel discussing nuances of treatment for hormone sensitive patients. The consensus seems to be a slight preference of choosing docetaxel over Zytiga as the next line addition to ADT. It didn’t sound like the efficacy of either treatment yielded much different results, but the timing of using docetaxel early v.s. Zytiga had less overall toxicity, based on the notion that with docetaxel you generally have 18 weeks (6 cycles at 3 week intervals) and you’re done, while Zytiga is long term. One of the panel members added that, if you started with Zytiga, by the time it failed the patient might be beyond a place where docetaxel could have any meaningful benefit, and implied the risk of lethal toxicity in that scenario.
In the spirit of sharing, I read Dr. “Snuffy” Myers’ book “Beating Prostate Cancer: Hormonal Therapy &Diet. Although it was copyrighted in 2007 (before Stampede and Latitude, etc.) and is outdated regarding treatment protocols and available drugs, it is still a useful “primer” on prostate cancer, and the role of diet, exercise, and supplements as part of the treatment plan.
There is a new book out (copyright 2018) by Dr. Mark Schulz, M.D. titled “The Key to Prostate Cancer”, 30 Experts Explain 15 Stages of Prostate Cancer. He presents his own novel staging system. For me, a burned out Former English Major with a short attention span who hates to read anything longer than the jokes in Reader’s Digest (yes, it is still in print), the big plus to this book is that only certain sections of it are “mandatory” reading. After that you can skip the sections that don’t apply to your specific situation.
Thanks for sharing the info, Gregg. Best wishes to all of you!
There are quite a few other interesting discussions on OncLive, I haven't listened to them all yet.
In one, they discuss the ARV-7 testing which every doctor on their panel unanimously agreed should not be used in treatment decisions. They asked their audience to vote, before and after their discussion and the audience disagreed with the panel both before and after the discussion. They said it makes more sense for a CRPC patient to try either Enzalutamide or Abiraterone for a month or two and see if it works rather than relying on the test.
One of the doctors also talked about the need for specific treatments targeting the ARV-7 mutation. Then, I would think the test is more useful.
I watched the video. Since that was taped, the preliminary results of the trial of the combination of Zytiga and Xofigo showed the combination had more deaths and more fractures. They are analyzing to assure that it's so, but meanwhile they should not be combined.
I realized that when I watched the video, but they didn't spend much time on that subject. The other things they talked about were fairly valuable. There are also some other videos that are worth watching.
Greg I just finished the 5th dose of XOFIGO yesterday. I’m taking it in conjunction with XTANDI. My MO at Texas Oncology as well as a 2nd opinion at MD Anderson in Houston both agreed with this treatment plan. DX at stage 4, Gleason 9 at 51 with extensive Mets. I’m throwing everything at the disease. I did the first 4 doses 4 weeks apart. I had to take a 4 week break due to WBC/ANC being to low. It was back in the normal range this week after the break. The key is only having the METS in your bones. I’ll have #6 on October 29th then a PET scan 4 weeks later to see how well it’s worked. Hopefully it’s working as designed. I have felt better and did take a booster shot to increase the WBC when needed. Maybe this will help in your decision to take it or not. I have no regrets. I wish you all the best in your journey.
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Gratitude & Radiation & Xofigo
My Oncologists is retiring
oncologist appointment 
Xtandi failed suggested Zytiga
