Radium 223 (Xofigo)

[Jashelby]

So I’ve been taking Xtandi and having a very difficult time. Today my oncologist said to stop it as she could see how it was affecting me. Starting me on Radrum 223 (Xofigo). Don’t see anything on this here when I do a search......any words of wisdom?

[YostConner]

It affects my appetite negatively, but it brings relief to my known rib cage mets.

[Jashelby in reply to YostConner]

Thank you. I noticed you mentioned that prior to your 2nd dose on another forum. The Xtandi was very effective in bringing my PSA down, but I had zero quality of life on it. Thanks for your reply.

[ctarleton]

Keep very close eye on your blood work while taking Xofigo: reds, whites, platelets, etc.

Stay ahead of the power curve with your doctors and any supportive measures, in the event they may become necessary.

Here's the Xofigo Package Insert which might help in preparing you for treatment, monitoring your treatment, and formulating questions for your doctors during treatment.

accessdata.fda.gov/drugsatf...

Charles

[Jashelby in reply to ctarleton]

Thanks Charles. Will do as you suggest. The advantage of this forum is to pick the minds of those with personal experiences.....so much better than trials and statistics!! I’ve always been the triangle in the square hole when it comes to stats.....The oncology Dr said something about possibly staying overnight after injection, but from everything I’ve read it’s outpatient nuclear med. Will just have to wait and see. Haven’t been given my date for my 1st of 6 injections yet.

[Raff5757]

Have now had two injections of xofigo. Having just finished chemo, and still dealing with the side effects of chemo, I haven't noticed any major side effects from Xofigo. Maybe a little tired the day after, but not even sure of that. Keep an eye on your RBC (red blood count) It has lowered my RBC, but not to the level yet that I need a transfusion. Best,

[jmurgia]

I think the spelling is "Radium 223" (not Radrum 223).

Try searching with that.

[Hankwhy91]

Just completed my second injection of Xofigo. Completed 10 rounds chemo at end of Sept. Also had radiation to back for 8 days before first Xofigo injection. I am experiencing side effects-nausea, fatigue, very shaky. Had to have granix injections as my white bills counts were down. That’s about all I can tell you only end.

I wish you the best. Not sure about this drug, all my doctors said it was what I needed to do. I am feeling better -tomorrow is one week since last injection.

Again, my best to you.

Hankwhy

[Jashelby in reply to Hankwhy91]

Thanks for your input. I have neuroendocrine diff type of PC and just watching PSA isn’t enough. I’m hoping this is better than the Xtandi, as I felt like I had a terrible flu that wouldn’t stop! Best regards!

[Hankwhy91 in reply to Hankwhy91]

I see a few typos I made-sorry. Meant to say all I can tell you at this time.

Oddly enough, I feel like your similar effects you experienced on Xtandi with these Xofigo injections. I hope Xofigo works for you. Forgot to mention, this was my third go with daily (for a month) radiation. Surely helped both previous times to groin (different areas) most recently to my spine. Finally feeling less pain.

[Lunbo]

Started Xtandi 4 months ago while continuing Lupron and Xgeva and had all the adverse effects until my Onc added Prednisone which I had been on before with Zytiga for 5 years and now only minor side effects.

[Jashelby in reply to Lunbo]

I really wish I could take steroids, but they turn me into a raging lunitic and I'd be divorced in a week! That's always the Oncologists suggestion, to take steroids, but I just can't take them.

[jal1954]

I have completed 4 rounds of Xofigo with no noticeable side effects. Unclear how it's working, but my PSA has declined with Xofigo + Xtandi.

[Jashelby in reply to jal1954]

So you were on Xtandi and Xofigo at the same time??

[jal1954 in reply to Jashelby]

Yes, currently, along with Lupron.

[NCrocker]

I started Xtandi in April of 2016, actually just a half dose of 2 tablets, but even that much really zonked me, with great fatigue and stiff joints. My doctor (Charles Myers in Virginia) reduced me to 1 tablet in August of 2016. Turned out I my cancer is very responsive to Xtandi, as that dosage kept my PSA at undetectable. My side effects were somewhat diminished (I can't even imagine what the normal 4 pill dosage would do!).

Of course Dr Myers retired and I switched to Dr Mark Scholz in Los Angeles, and he wants to switch me to Zytiga. But in the meantime, he has also sent me to Phoenix Molecular Imaging in hopes of locating the cancer for targetting followup radiation, and then hopefully remission... hence no further treatment needed at that point.

(Don't mean to get off topic, other than to give my experience on Xtandi, and briefly what followed)

[Jashelby in reply to NCrocker]

That is so interesting! The Xtandi worked well on me also, the only reason I put myself through so much discomfort, I’d tried the half dose too, but no changes in symptom severity so figured I might as well take the full dose, until my Oncologist saw how bad I was and stopped it on my last visit. I figure I’ll try this Xofigo and see what happens, may try that 1 pill dose with it if results not as good as desired! Do you travel to all your Oncology visits?

[NCrocker]

Yes I did travel many times to Dr Snuffy Myers in VA, and so far traveled to my one appointment to Dr Scholz in CA. Over time, I may try Skype, but in the short run I want to establish a face-to-face relationship with him as well as staff (which can be as important). Good luck with your Xofigo!

[Jashelby]

So today I received my first injection of the Radium 223. Was a cake walk in general. Got an IV. CBC was drawn then hooked up to a 500ml bottle of saline. Infused 1/2 of that bottle before getting the injection topped off with the rest of the saline. Will keep you updated, but so far so good. I’ve been terrified of getting this injection. Have been told I may need to stay in the hospital, get blood transfusions and all kinds of stuff........remember.......each experience is different. I’ll keep posting mine experiance as I go. God Bless!

[Jashelby in reply to Jashelby]

Well, it’s been 12 days.....I wish I could say I’ve breezed through, but honestly my fatigue and pain has bed ridden me 75% of the time. My first week post bloodwork was perfect, no drops in hgb or plts. My body feels like I’ve got the worse flu ever, but no fever so I’m sure it’s all response of the Xofigo and maybe some residual effect of the Xtandi, which I stopped on 12/24/17. Get my labs checked in a couple of days, let’s hope they stay in good shape. Will let you know, God willing.

[Jashelby in reply to Jashelby]

Just received treatment #5 and sadly it will be my last treatment. My PSA has steadily climbed to 17.2 from 2.43 when I started in January. Each treatment was hard on me. Felt like so had the flu the entire time but the worse was the dripping sweats, my wife and I called it manopause. My most recent CT & Bone Scan showed lymph involvement for the first time. They took me back to the tumor board and have decided to change me to something else. Not sure what yet.

This week however I lost 80% of my site in my right eye...same side as my head tumor. They don’t see any cancer involvement, so a little swelling so going to try steroids. This just today, so will post later. Praying my site returns! Never quite believe them when they say no cancer....always skeptical with that one, especially with rising PSA and increase in pain! My cancer is neuroendocrine differentials, so my PSA will always be lower than regular folks. Pray for good outcome!

[Kimmilemo]

We are from Saint Louis are you?

[Jashelby in reply to Kimmilemo]

We're in the Springfield, MO area.

[Kimmilemo in reply to Jashelby]

Ok just noticed your cardinal gear. 😄 Where do you go for cancer care?

[Jashelby in reply to Kimmilemo]

Oncology Hematology Associates here in Springfield.

[Jashelby in reply to Kimmilemo]

Very avid Cardinal fan too!!