After my successful run on Zytiga, I've now been approved for Xofigo. My first labs were yesterday, and my first injection is next Monday. I've done A LOT of reading about Xofigo. If you've used it and want to share any surprises--side effects not in the literature or anything else--I'd appreciate hearing from you. Thanks.
Approved for Xofigo: After my... - Advanced Prostate...
Approved for Xofigo
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YostConner
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Congrats Yost! Elgie's one and only treatment....he described as electric current feeling in legs and he was weak only for couple hours in the evening after having it around 2 ish. We believe it worked wonders. Just our opinion. I hope it works fantastically for you! Please keep us all posted.
Huge hugs and always great wishes,
Jackie
Congrats Yost! Since Xofigo is hopefully in my future, after Xtandi (or with it if research shows there's more benefit that way), I'm glad to hear your report on Elgie, Jackie, & also very glad for him, & you!
Thank you Neal 😊
How are you doing? I'm hopeful you're feeling well.
Fall has been so beautiful but the cold will soon follow. Here's hoping it's a mild and short winter 😉
Sending virtual hugs,
Jackie
No experience with it, just want to wish you well!
Not at this point yet, good luck keep us posted
Just wanted to wish you good luck! We are all pulling for you!
I hope it will work very well for you.
Just curious, what were the approval criteria for the xofigo treatment? Do you have any mets in bladder or any inner organs? or just bone mets?
Basically, I needed no evidence of soft tissue mets and a blood test showing good counts. Blood will be tested one week before each injection.
Best of luck and successful results. thanks for sharing.
Don't have anything to report that you won't find in the literature. I finished my last Xofigo injection 10 days ago. I won't know whether Xofigo helped until I have my next scans in about three weeks. I'll post here when I get the results. As to side effects, as advertised, mine were mainly queasiness and diarrhea a day to three days following the injection. It took me 5 injections before I learned to help the elimination process along by sticking to a highly digestible diet the day before and the day after. For me eating mostly fruits, vegetables and juices during this period produced diarrhea a short time after the queasiness from the treatment began. In two days, all the toxins seem to have been expelled without further upset. After the earlier treatments (when I was eating normally) the nausea and cramps went on for several days, so it seemed to me that the fruit, veg and juice diet helped. Except for this, Xofigo was easier and better tolerated than chemo.
I have just been appoved for Xofigo. My HGB is low and I have had one shot of Procrit. I have a second shot of Procrit scheduled for today. So far my numbers are still low. HGB is 8.4. I am anxious to get started.
my husband's were low, too. they tranfused him to bring it up to 10.4.
I'm surprised they gave you Procrit. Do you know their rationale? I thought Procrit was not recommended in patients with cancer. I assume you are in the same situation as myself since Xofigo is an option to me. I have been asking my MDs who refused to give me Procrit but got transfusions instead which is more of an hassle. Genuinely curious of their reasoning if you know...
I think transfusions are the second choice if Procrit doesn't work.
• in reply toComanche24
I had no choice when my HBG was at 7. MedOnc gave me InFed infusions for four weeks. Procrit makes the bone marrow produce more red blood cells, whereas, InFed, is an iron infusion. My brother gets Procrit because he's on Dialysis. I'll assume, because it's a med, Procrit would take much longer to work, as opposed to an infusion.
StephanB• in reply to
Kidneys are the organs sending the signal to have bone marrow produce more red blood cells. Procrit is definitely an important drug in patient with renal impairment. How is your HGB doing?
• in reply toStephanB
Hi Stephan,
I see where Procrit fits in. My HGB is fine now. I didn't realize at the time that I was pissing blood. Not enough to notice it, but enough to put me in the hospital, with an HGB of 7. Another time was due to radiation proctitis (Melena).
This all needs some clarification on my part, my first issue arose out of medical stupidity, nothing more. I am fortunate to have good liver and kidney numbers, as well as good bones, thanks Mom. Now I understand why my brother is on Procrit, his kidneys have failed. The infusions didn't bother me so much, less than an hour, but, add the drive time, the wait, the bullshit, and then you wasted the whole morning.
Joe
Comanche24• in reply to
Don,t know. I am seeing ny second option Doc next week at the Mayo Clinic. I will ask him.
Procrit should definitely work, albeit more slowly in bringing up hemoglobin than transfusions, but I guess what I understood from my MD is that there is controversy in risk vs benefit with potentially stimulating cancer cells. I wanted Procrit because transfusions are such a hassle, and I have no problem with iron level in my blood. My problem reside in that my bone marrow is suppressed by the chemo which is getting worse and worse each time. That's why I thought Procrit stimulating red blood cells production in bone marrow sounds good but my MD refuses to give it to me. That's also why I wonder if your MD had another rationale.
figo in Greek means "to leave" (hopefully it works that way).
GOOD LUCK AND GOOD HEALTH.
j-o-h-n Wednesday 09/13/2017 4:47 AM EST
Yost, I wish you the best with xofigo! It is my understanding that xofigo does not do anything for psa, I think it is important to not let psa get out of control, keep and eye on it, and if you need something like xtandi to control it, consider it. Also interest in not having soft tissue LN mets was require for, I think you mean medical approval, or maybe insurance you meant. Joel told me that may be the case,and that may exclude me palliating my bone mets because I have soft tissue mets, I hope not, will ask. Just finished processing silver salmon vac pac, sure has been an enjoyable trip to Alaska, and Lucky to have nice weather.
Dan
Well first, I'm glad you had a great trip to Alaska. It is an absolutely gorgeous state.
The approval was medical approval. I understand soft tissue mets are a problem, but pursue it with your doc. Also had to have sufficient blood counts.
no soft tissue mets or the danish company who manufactures it will not supply it.
I finished Xofigo last October. My experience with it was good. Minimal side effects, no complications. Pain relief from multiple bone mets started after about 6 weeks on Xofigo. PSA was .66 on completion of Xofigo treatments.
what was your PSA before starting Xofigo, if you don't mind my asking?
As of 8/29, PSA was 49.9. It was 41.4 at diagnosis in 2007. In the interim, I reached "undetectable" and a spike to about 39.5 when Lupron failed in 2014.
sorry, but i thought i was replying to the guy who said his was .66 after xofigo. now, i can't find who that was.
chascri, up the stream.
Yost,,
Xofigo with Zytiga caused many of my bone mets to disappear, and greatly reduced activity in the two remaining. No new bone mets in two years since Xofigo. Wish you the best.
Only advice is for the luekapharisis sessions. Dress very warmly including ski hat, socks, and gloves. The blood circulation makes you very cold and you want to avoid shaking for two hours. A blanket is not enough. Also the rapid blood flow makes it difficult for your body to get calcium from your blood during the procedure. Take the IV calcium frequently to keep from shaking.
Happy for you.
Bob
Bob,
It sounds like you're talking about Provenge. I recognized every condition you described!
Yost,
The advice was for Provenge, but the great results were for Xofigo.
I had no difficulty or side effects with Xofigo two years ago, and have had no bone pain or new bone mets after Xofigo.
I hope the very best for you.
Bob
Having had Provenge recently, I also recognized the unpleasant parts of leukapherasis. I was thinking oh, no! Would I have to do that again for Xofigo? Also, it's important to hydrate well the day before leukapherasis so your veins will work well. And I think the morning of--just follow the instructions you're given. Then you may have to deal with urgency to pee when you're not free to move about the cabin.
I have had 5 of 6 shots of xofigo. The last shot has been delayed by the hurricane. No adverse side effects except for a little fatigue. Afternoon naps are essential. Next week I'm scheduled for bone and Ct scans to check on progress. Missed 4 doses of Zytiga. Hope this hasn't messed up my progress.
Yost - wishing you few side effects and great success with Xofigo!
Did mine the last 6 months of 2015. I feel it has aged me much faster than normal including general fitness stamina and bone structure. Also have developed skin lesions on scalp and elsewhere probably as remnants work thru skin. Not that any of this is necessarily bad since trade off was PSA has held down nicely since although headed up now. Most serious downside is cost of $40k.
cograts on the Zytiga, Yost, and best of luck with the Xofigo!
Hi Yost,
Should I assume your AR-V7 test came back positive? So, the Xtandi is definitely out. Are you in a lot of pain from the mets? I only had three visible bone mets, which all went away in the last year, and were never painful. I guess the Xgeva did it. The point is that I was going to be put on Xofigo by my Uro, and when my Onc got a whiff of it, he put a stop to it, and instead put me on the Xgeva. And, as Comanche says, watch your HGB while on it.
Joe
YostConner• in reply to
Joe,
I will get the AR-V7 results tomorrow. My MedOnc suggested we might d oXofigo and Xtandi concurrently if I'm AR-V7 neg.
I do have painful mets--rib 6 on the left and lower right ribcage are the real problems. I feel others periodically, but those are the real troublemakers. I'm using oxycodone at night and trying to use something less pwerful during the day.
My bone scan last week showed both new mets and increased activity in the left rib cage, increased activity in the right femur, and new mets in right rib cage and skull. Oddly--and thankfully--nothing in the pelvis so far. Maybe the adjuvent radiation helped protect the pelvis.
Yost.
• in reply toYostConner
Wow, i'm just floored. If you are negative this is the way to go. The preponderance of mets, is, is....quite scary. I feel for you, bro. Have you talked to your MedOnc about Xgeva? I'm not as well read as most here, but I think it helped in ridding me of the few mets I had.
Joe
YostConner• in reply to
We have talked about Xgeva several times. The latest was before the last one scan. It remains an option. Thanks!
StephanB• in reply to
Not impossible but Xgeva main indication is to reduce the risk of osteoporosis and has been proven to delay bone factures, which can be a big problem of its own. I couldn't say if it helps my mets, but I tolerate it well and have no side effects from it.
Yost, did you have a good run on Zytiga? Doesn't that suggest AR-V7 negative?
Neal
Yes. I was on Zytiga 32 months. That was much longer than I expected at the beginning. I think that suggests neg, but I'll see the actual results tomorrow.
I remember now. Exactly the same good run that I had. I think you can sleep peacefully. I don't think you can do well on Zytiga if you're AR-V7 positive.
I'm looking forward to hear about how you tolerate treatment, and how it reduces the burden of mets in your bones. I have myself been in a weird corner, because I have been wanting to get Xofigo for a while now, but my MD thinks it's not time yet, I have extensive mets mostly pelvis femur area and shoulder. They fluctuate in pain level which I calm with Dilaudid but it's strangely not on a constant level. Were your pains more constant? I'm also worrying after each CT SCAN that there will be soft tissue involvment, and therefore ineligible to obtain Xofigo, which I remind my MD all the time. I'm not sure how close to russian roulette we're playing. And what about local radiation for your rib? Was not interesting?
Stephan, I went back and read your story. Is your MD a medical oncologist with urologic specialty? Major cancer center? If you're no longer on chemo and if your blood counts have come up, Xofigo would seem to be a reasonable choice.
I lost track of whether a couple of your questions were for me, so I'll answer anyway. My pain is persistent but not constant. Different days different meds produce better responses. I'm having a pretty good day today with Aleve, but I've also needed narcotics in the past week. I had radiation to the rib three years ago when the pain just got too bad for drugs. Relief came quickly, but it was not a permanent solution. That's one of my problem sites again.
I hope your pain is managed today.
Yost.
Hi Yost, my MD is a medical oncologist who is highly involved with studies. Beyond the Firmagon, I have been on docetaxel which showed progression after 5 infusions, then went to my actual medical oncologist who does not have urology specialty, and took part in a clinical study which compares abiraterone to cabazitaxel post docetaxel failure. I progressed again within 4 months with abiraterone, then was switch to the other arm with chemo cabazitaxel which I have been tolerating well but my PSA doesn't drop and hovers between 700 and 900, but up and down so my doc can't can't see a linear progression. It's very frustrating because I don't like the high numbers. Even with progression, docetaxel and abiraterone were in the double digits at least. As I said I'm concerned with progression to soft tissue. I am getting a CT scan and a Bone scan in two weeks which is always scary to me but at least we'll have a better picture of where my cancer cells are in my body. In the meantime I also went to get a second opinion with a medical oncologist with urology specialty, who thinks I should jump into PARP inhibitors study because of my BRCA mutation. So that is perhaps something to look forward to, but I really was wondering about Radium-223 to nuke my bone mets, so I'm looking forward to hear about your experience and results, even though you won't probably know before months.
Got it. I posted (on the prior blog) about my Provenge experience. I'll do the same with Xofigo. It won't be blow-by-blow, but I'll try to note the important parts.
I understand the trepidation about your upcoming scans. My whole body gets nervous leading up to those.
Are you in the U.S.?
Best to you.
Was in New York for 16 years but moved back to Montreal to be close to my family after serious diagnostic. It's been quite a challenging year with metastatic disease, moving away from my beloved NYC, treatment failures, body/sex/libido changes etc. Despite all I try to be zen about most of it even if anger pops up once in a while.
I'm still so new to all this but do a lot of research to be able to be my own advocate somehow. I have a background in science and research which doesn't hurt, but still not easy to navigate all this. I really hope they find new ways to hit prostate cancer, because for one, taking away the testosterone from men has quite detrimental effects, physically, physiologically and psychologically. Maybe we need to talk about it even more but I, myself, have a hard time talking about my issues. Maybe it's a men thing, but women did so great with breast cancer advocacy.
BTW, what was your experience with Provenge? I asked my MD and didn't seem to be too convinced of data and significant improvement in life expectancy. To your knowledge, was it beneficial to you?
Thanks Yost for indulging me and my questions 
It's near impossible to measure the success of Provenge in the individual, but in the trial groups, there was clear extension of life. I did Provenge before I started Zytiga. My husband, my mother and I all believe Provenge "worked" for me. The side effects for me were pretty much what you see published--fatigue, chills during process, calcium depletion during process. I had a port installed, so I had to clean and flush regularly. I got through that without any infection.
Good to hear Provenge seemed to have a positive effect on you. Good luck Yost with your next adventure with Xofigo. Hope it helps significantly your pain. I understand how you feel, bone pain is not easy to endure. It keeps me awake at night sometimes. But I'm positive it will help you. And it looks you have good supporters to go through it all. I miss my ex-partner more than ever strangely. Perhaps an unconscious dread of loneliness from now on. I do have wonderful friends and family.
Best of luck to you,
Stephan
Good evening Yost, I also after too much pain, decided with my MD to start Xofigo. I had my first dose a week ago, last Friday, and have high hopes for pain relief, which only seems at this point to be relieved by opiates. Hopefully it will decrease my need for them. How have you been tolerating the therapy so far? Data is good for tolerance, but I have basically not been able to keep meals in, vomiting everything. It's very frustrated because my appetite is good and I am hungry but I just can't keep anything in. I know response and adverse effects are very individual but was wondering. So far rice and Ensure types are the only things goes passed my stomach. In any case, hope you are doing well so far
Stephan
Hey, Stephan. My second shot is this coming Tuesday. Since the first shot, I've had some fatigue and frequent diarrhea. My appetite has changed pretty dramatically. I don't want to eat much--and what I do eat needs to be bland. Ive lost 10+ pounds. (I'm a bigger guy, so the weight loss is OK as long as I get some nutrition in.) I've had nausea but no vomiting. I'm still using opioids daily, but I didn't expect significant pain relief until the second shot. I hope your side effects improve quickly.
Yost.
Good morning Yost. So basically, you are also struggling with some type of GI disturbances. Do you sense improvement with time in your case? I also lost weight which I don't have extra to lose, and it weakens me for sure. It's interesting to read that it is well tolerated (which it might be in general). My doc even made a point of showing me that there is a higher % in placebo group for GI disturbances than group getting Radium, but I can't see what else would do this to me. I always have a good appetite, and not the type to vomit easily, as my skydiving, sailing and rollercoaster pass could attest.
This is really rough. My small filet mignon and few tiny potatoes last night which were so good...down the toilet drain 30 mins later. It's now a daily occurrence. I'm seeing my doc this week and not sure what this mean for the next 6 months. Scary. I want this to work so much. I read that effect on bone pain start with 2nd or 3rd shot so we'll see. This is when I also wish I was still with my partner. It's so easy to not eat and push oneself to do so when this happens. A little "you gotta eat something babe", "let me make you rice" from him would truly help morally.
Did your MD offer or talk of any antiemetics or alternatives?. I can't find any data on that. Are we destined to eat bland flood in small quantities for the next months? Any other people in this community with this type of adverse effect with Xofigo? Looking forward to hear about your second injection. Mine is in 2 weeks.
Since I haven't had the vomiting, I haven't had to explore treating that. My nutritionist suggested small, frequent meals. And yes, she said cold and bland would serve me well. She also suggested nutrition drinks to make sure I get enough protein in. I'm tolerating dairy pretty well. And even though I have diabetes (thank you, ADT), she wants me to eat whatever I want during this period.
I understand your partner comment. I wish I had a suggestion for you on that.
Yost.
Just to update, I did go through a week of hell with not keeping anything in, but now been 3 days without significant GI reactions and vomiting so it's looking good. I stopped eating meals basically except nutrition drinks and soups, but now been able to keep small but regular meals in. I'm looking forward to see how my body will react to my second injection. To be seen. I still have the same pain level so far but I know that takes a few injections for significant pain reduction (+my being sick all the time and weak made me skip my ADT injection...10 days late yikes, that also could not help my pain if cancer cells more active i guess). Doing it today for sure. How is your second injection going so far?
I've spent two days at home since the second injection--GI issues and general blah. I got up this morning, showered, dressed, was ready to go the the office. Then I walked the dog. It was in the 40s, but I was sweating, and my legs felt like noodles. Have had some hunger today, so that's a good sign!
It's so interesting how we hear it's so well tolerated etc but it really kicked my ass. Even my chemos were better tolerated in my opinion so far. In any case, hope you feel better. We'll go through it. Pain free goals!
Stephan & Yost,
Hang in there, guys. A big virtual Hug for both of you, especially Stephan. Having cancer is bad enough. Being lonely or fearing loneliness is really tough, too. We all need that TLC from someone with whom we can be intimate and authentic, and who can also make us something warm to eat when whatever it is hurts.
Yep, Xofigo can really kick somebody's ass, or they can get lucky and get through it fairly well.
(I'm in a local cancer support group with a man who up until just recently had been trying to work full time, and whose blood work just barely recovered after his first two Xofigo injections. He's also been traveling quite a distance to get treated. Still having bone pains. Feeling like crap. A lot of it perhaps his low blood counts. Just yesterday he was trying to go by himself to get some local blood tests done, but passed out in the parking lot and got a big bump on the back of his head. He quickly awoke and drove home, where his spouse freaked out and took him to the local ER and impounded his car keys until things resolve. And now his future for trying to complete his Xofigo is just that much more uncertain.)
Yes, sometimes, there is nothing easy about any of it. We need all the support we can get.
Charles
Thanks Charles, I accept the virtual hug. Still feels good. How are you doing on your end? When I found out my PSA was 1200 at diagnostic, I was scared and shocked. Reading yours was 5,000+, is quite a shocker too. Have treatments been getting good response? Hope you are in good spirit. Thanks for the supportive comment.
Stephan
Thank you, Charles. Hugs back.
Yost, have you also heard back from testing AR-V7 presence? Just curious...
Yost, this was by far the easiest of all the treatments I have been through with very minimal side effects i.e. little loose poops. I had some mets in my spine and the way I looked at if anything else was going to develop I would rather be proactive than reactive.I have done the provenge, zytiga, currently still getting a Lupron shot ever 6 months and just stopped Xtandi as it not working my next step is probably Chemo depending on what my scans show. Been at this "whack a mole" since 2009. Gleason 9 with prostate removed in 10/09 then f/u with radiation and was a patient of Dr. for a couple of years till he raise his rates. You will do fine with Xofigo. Never was tired after etc. Best of luck! Bill in Ohio. P.S. I do have a profile if you are interested. Semper fi!
Thanks!
Wishing you the best, Yost!
No info to give, just good wishes to you. Stay strong!
Yost....new med means new progress!! I missed my chance with Radium as I now have a lymph node involved. You'll do awesome, you're in great shape, well informed and have a very positive attitude!!
Best to you Yost. Hope it works well for you.
Wishing you the best, Yost.
Good luck Yost!
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