10/06 Xofigo

Hello Gentlemen, My cancer has come back on my L4/L5 albeit scan shows light gray area. My Oncologist suggested Xofigo and I start 10/6. Get this, my PSA is over 100. Scans show no other areas i.e. abdomen, lungs, tissue, bone etc. Looking for success stories with this drug. Had prostate removed 10/09, gleason 9, 39 radiation treatments to prostate bed, ADT , Zytiga, now CRPC. Had one shot of 6 month shot of elligard a few months ago. Best I have ever felt since coming off the zytiga. Thanks Bill

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  • You had RP last October, followed by radiation. The surgery should bring your PSA close to zero, and the radiation should be just for safety. You had no mets at the time. Your PSA began to rise quickly, and so in July you got a Eligard depot, which seemed to have little effect, so your doctor gave you abiraterone. Now your PSA is up to 100. Last year, you had no mets that showed up on a tech-99 scan and now you have two.

    You could easily have more mets. Radium-223 seems to me to be in-between a systemic therapy and a focal therapy. It goes to the skeleton; to any place that bone is being deposited. This includes mets. I would say Radium-223 is sort of a good idea, but your mets seem to be growing faster than Radium-223 is reputed to work. Just for starters, Radium-223 is not known for its ability to control PSA; namely, not known for its ability to kill lots of prostate cells, including not know for its ability to kill a lot of metastasizing cells.

    I don't get what is going on with you. Does not sound good.

    Let's see what others say.

    I'd would think a better scan (at the mayo clinic C11).

    Did you have ductal cell or cribiform on biopsy, or the new scary thing Neuroendocrine prostate cancer (NEPC) ?

  • While you are at the Mayo Clinic, see if Dr Kwon will give you ipilimumab with Provenge.

  • Sorry Sir, October of 2009 was my RP removal robotic. I was being treated at OSU James cancer here in Columbus then I decided to get a second opinion and was being treated by Dr. Myers in Va. until he semi retired and doubled his rates. I know Xofigo will not drop my PSA. I am just looking at does it work? I would think that the James Cancer Center here at OSU would have the scan you are talking about (C11). This has been incredible journey for me as I am a Marine Vietnam Vet that was subjected to agent orange. Since 10/09 I have been feeling pretty good except for when Dr. Myers (who I have a ton of respect for) had put me on vivelle patches that reduced my energy level but did not lower my PSA. Thanks for your reply Martin. P.S. was on the shot first with eligard w/casodex. Then went to the Zytiga. I am sure you have been around and you can see a pattern here as I see it with everyone. Great conversation and website. Guys helping guys.

  • Yes I missed that the RP was 2009.

    I dont understand when you went on ADT. etc.

    Or when Dr Meyers semi-retired.

    I should not have tried to guess. That was silly.

  • No problem my friend I could have been clearer. I feel the provenge has been effective. Just looking for someone who has had Xofigo and it has worked. Best to you

  • I have had 5 injections of Xofigo with the 6th scheduled next month. No noticeable side effects. Great pain relief from multiple bone mets in spine,ribs,sternum and femur from after my second injection. See my profile and posts for more details of progress on Xofigo from the beginning. Hope it is helpful.

  • Very helpful. Thanks so much! Bill.

  • My husband had his first xofigo in July followed by a pain flare ..which the dr said was good meaning the inj was working ..no issues w the 2nd inj and the 3rd has been postponed due to low labs ...hope he can have it Tuesday .it did help w his pain and he has decreased his pain med ..occasional upset stomach for a few days ..

  • Thanks so much and I will pray for your husbands successful completion of treatment. Best Bill

  • Xofigo is a really good drug that has been effective for many. Positive effects can include pain relief, although it is not a list effect. In most cases it shrinks the bone mets and has proven to extend survival.

    Don't expect it to have any effect on your PSA.

    It should be taken along with the other standard of care, so don'r discontinue other treatments while you take Xofigo.

    Increased survival and pain relief adds up to a good drug.

    Joel

  • Joel, do you know the result of studies comparing Xofigo & Zometa?

  • I am not aware of any studies comparing the two drugs. There is little reason I could think to compare the drugs since they are entirely different and do entirely different things.

    Zometa delays the on set of bone involvement while Xofigo is a radio pharmaceutical that specifically attacks bone metastases.

    Joel

  • Thanks Joel, my bad. So Xofigo is radium 223? I mixed it up with the newer alternative to Zometa. I didn't have a choice, because Kaiser was only offering Zometa. But a UCSF urologic oncologist told me there was then-new research that indicated that the new one might be a bit better.

  • Thanks Joel, I appreciate it. That is exactly what I was looking for. Best Bill

  • Irwinb3, Im going to try the radium 223 within the next week or 2, Im just waiting for a call for my schedule. From what I understand, it will help with the bone pain, I need that. Im on 10 mg of oxycotain 2 times a day and 5 mg percocet, as needed in between. Im having to take 1 percoet mid day and I still pain in my hips, legs and feet. I'd rather not take those drugs and hoping the radium 223 helps. I'll still have the nasty hot flashes from the Lupron, but I'll live with that. I don't want to do any type of radiation . From what I understand, Its a very , very low dose of radiun that penatrates the bone only a very small amount and not get into other organs and bone marrow. So, I'm going for it, I feel its a better option for me. Hopefully iron will take away my pain?

    Good luck in your journey .

  • Been fighting this for 7 years and this has been by far the easiest therapy I have done. My cancer has spread to my spine L4 & L5. Don't have much bone pain as I am on 800mg of script ibuprofen. My oncologist is amazed that it has lowered my PSA (as it is not supposed to). This is the best I have ever felt in 7 years of ADT, provenge, etc. My psa has always been low but now I am CRPC. PSA went up to 100, then down to 70 and my last reading was 20. My oncologist said PSA is just a number and not always an indicator of cancer growth. He said he puts our faith in the bone scans which show very little activity in the spine that was before the xofigo. I am in no pain now. BTW the person that observes the injection said they have had tremendous success with the results of xofigo and it can be a repeated therapy. Best of luck to you and I hope you can get some pain relief. Bill in Ohio

  • I started this journey In Oct of 2015 @ 55 Started out at my urologist,next to my oncologist in Feb of this year 2016. Started 1 week before my birthday in March, Taxotere Chemo mega doses for 10 rounds @21 days along with neulasta @ all 10 rounds and was also getting Lupron, last round was Sept 13. Still getting the Lupron every month also with Xgeva. So in this boards eyes, I'm a pretty new patient. Right now, My psa is undetectable 0.1

    It's funny you say your onc says don't worry about the PSA numbers and rely on the scans.

    My ONC told me at the end of the chemo, My PAS was undetectable and clinically, I didn't need any scans. I told him,If he can see into my body and assure me the cancer didn't spread, then I'll be ok, But I want a scan....So I can see in my body and see if if spread. He then ordered me another scan for "My own peace of Mind" They all looked good....for now!

  • Wow you have been through a lot in a short period of time. You still have your prostate? Good thing about Xofigo is that it goes to all of your bones and I view that as a preventive. I am hoping to delay making the decision on Chemo as long as possible.

  • What I forgot to say in my last reply was, My ONC says, I have nothing to worry about as long as my psa stays like it is , undetectable. So He's more of a "Numbers" doc, and yours is more of a "Scan" man. Interesting, right. Yes, I still have my prostate. After I found out I had PC from my urologist, He said that he was going to remove it via the da vinci method, but We had to find out if it spread, by doing the bone scan and MRI, It did. Both he and my ONC said after seeing the results, I would not get it removed because I was going to get the chemo and it was to evasive to recover while on chemo. Makes sense to me, But I'm wondering If and when they will have it removed, If ever? I have to ask about that my next ONC appointment.

    My take on the chemo is, I would't look forward to doing it again, But to my disbelief, it wasn't as brutal as I thought . Don't get me wrong, out of the 21 day cycles, I felt like I was dragged behind a truck for anywhere between 7 to 12 of those 21 days. ! good thing about it was, I never vomited. I could not imagine doing that for long periods of time. I even had meds for that, I still have the original RX for them. To be honest, I was kinda afraid of taking them, cause I thought they may make me feel sicker. Kinda stupid Ha! In the last 3 rounds, I started to take them, cause at that point I would take anything I thought might make me feel better. I don't blame you for your decision at all. I didn't want to do it at all, but "THEY" told me it was pretty much my only choice. I have a wife, 3 daughters, and 3 grandchildren. My grandson was only 3 months at the time. I figured , if I had to suffer to stay with my family for as "Long" as I could, It's what I have to do. So I did. Im kinda excited to get the Xofigo injections because, if it takes away my bone pain, That will be worth it. I also read, that you can do the treatment again.

    Maybe you can tell me if there are any side effects or talk about Xofigo giving you a secondary cancer like radiation can? I have not read or seen any info leaning towards that it does. That's one major factor of me making the decision to get this treatment.

  • Ok that makes more sense i.e your cancer was already outside the prostate. Well after I had mine removed it was already outside as well. Albeit in the soft tissue. Urologist told me after the surgery he was a little worrisome he did not get it all. I told him if it worries him it does me too. However that was 10/09 and I have a a good quality of life except for being on adt, zytiga etc. I have not heard of Xofigo giving one secondary cancer. Success results have been awesome. Minimal side effects i.e. little nausea and loose stools. I do continue to exercise and that is key. Doctors are starting to not rely on PSA only as there have been many guys with high PSA that are doing well. Cancer is a very complicated disease. Can't blame you for wanting to start the Xofigo asap. Hopefully it will help you on your first injection. I have 3 down and 3 to go. Then after that it is look at the scans. My PSA was 100, then 70 and now 20. Xofigo is not suppose to lower PSA. However I did have an elligard (6 month) in June but I am already CRPC. Who knows why my PSA is going down?

  • Thank guys for sharing. You give me hope as I am only beginning, still responding to firmagone, Xtandi and xgeva and loving to hear that there are many alternatives after these cease to help me. I too have prostate cancer in my bones, lymph nodes, and possibly liver. Radiation to my spine helped get rid of pain in my right leg. My PSA is 1.4 now but it was rather low at 10.4 when the biopsy was done with Gleason 10 scores and extensive metastasis. I thought I would not make it past a year but I am now in my second year. So thanks for sharing your valuable experiences.

  • Well, I went for my consultation with the radiation oncologist to get the Xofigo injections. This is what he told me. I did not qualify for Xofigo. I asked if it was because on my insurance won't cover it, No, as he handed me a pamphlet for Xofigo that they would in fact cover it. He told me that my Medical Oncologist must have NOT read the fine print on the Xofigo pamphlet, that stated, " must be castration resistant". I said, I am pretty sure that's what I'm classified as mCRPC. He said since I'm on Lupron, and it's keeping my PSA down, and apparently working, I don't quality.

    Inside me, I got instantly pissed off, because I was questioning how my oncologist could NOT have known that, or Does this doc, know what he's talking about. Then I kinda thought My doc seized the chance to get me to a radiation oncologist a day hoped he could change my mind about getting radiation treatments that I have been rejecting all along. But , if that works true, it kinda scared me.

    I waited a week for my next appointment for my monthly injections to see him. Unfortunately, he was on vacation that week and I got to see his partner. Told her the events of the visit to the radiation oncologist and asked her, what am I classified as, and she said. I was mCRPC since I had chemo and it spread to my pelvis, but mumble something else about, I may NOT be????? And then she left the room. I guess she was done her explanation to me and figured she would rather have My doc field this question.

    I go in 2 more weeks to see him, I'll wait to ask him.

    Has anyone have any input on This? I am, but maybe Not? Anyone ever heard this before?

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