Starting Xofigo/Radium223

July 2014: Changed to new medical oncologist.
Previous oncologist had no more options after Jevetana.
August 7, 2014: Met with new oncologist August 7th, 2014. Baseline PSA 132. Weight 238.6
August 14, 2014: Injections for Xgeva and Trelstar at new oncology center. Weight 235
August 19, 2014: Lab work for possible Xofigo treatment
August 20, 2014 Consultation with Radiation Oncologist - very informative & personable physician.
Weight 235
August 28, 2014: 1st Xofigo injection. Weight 232.4
Sept. 11, 2014: Xgeva injection. Weight 235
Sept. 22, 2024: Labs. Weight 236.8. PSA 112
Sept. 25, 2014: 2nd Xofigo injection. Weight 236.6

Given multiple warnings/precautions actually. Drink plenty of liquids for the first several days. Really good idea to do this always.
Treatment once every 4 weeks for 6 months. No bone or CT scans until after treatment.
No side effects noticed, almost immediate improvement, less pain, almost none to speak of (arms and shoulders sometimes ache). Fatigue still high. Could hardly get out of his chair and even had trouble walking the day before this injection. Was told to go out and walk, exercise get out of recliner. Appetite same, but giving Megestrol to help, also Ensure Plus. If trying to do anything strenuous, will get out of breath, he's not used to that, again told to exercise.

I am going to try to imitate Gizzy'n me (Rob) on documentation, but I will not be as articulate, if any of you who have read any of his posts, you will understand when I say he was absolutely "over the top" with posting and documenting his results. Rest in Peace Rob, I will miss you!

Sal

Just finished the sixth Xofigo treatment. No SE issues. I just wish the insurance companies would pay for another 6 when the mets fire up again.

pepsiguy said...
Just finished the sixth Xofigo treatment. No SE issues. I just wish the insurance companies would pay for another 6 when the mets fire up again.

Kind of like college scholarship funds, there is much more prostate cancer financial assistance available than people realize. Here's a couple of many Google answer sets from prostate cancer financial assistance or prostate cancer foundation

www.patientadvocate.org/news.php?p=972

www.pcf.org/site/c.leJRIROrEpH/b.5699537/k.BEF4/Home.htm

Since Karen and I are living off fixed income IRA and Social Security distributions, I am getting assistance on the entire cost of Zytiga, on the travel associated with Provenge treatments FL to LAX, and looking into travel assistance for the SBRT living expenses again FL to UCLA.

The foundations go by your income not by your total assets, and will assign you a case manager to help you navigate through various foundations ustablished to help.

LupronJim

Hi all, how many treatments after infusion do you see an improvement in alk phos? My dad had two infusions and opted out and had no pain relief with both Psa and alk phos going up. He ended up getting spot radiation. Thanks!

Okay,so I want to pull info from you guys who have already has the Xofigo injections (this treatment is not an infusions, it's a 60 second injection),

Casper319....this is your 2nd round of Xofigo? How many injection on the 1st go round? Your clinical study, is it Phase 1, 2 or 3? How long after Xofigo treatment did you have a bone scan? How much time lapse between the 1st round and 2nd round? Any information that this thread could use or PC folks who will be wanting to know what to expect if and when they start this therapy. Also how can Xofigo be a "clinical trail" if it has been FDA approved ( pardon my ignorance)? What is the "reasoning" behind this clinical trail? I have so many questions...so sorry for the 3rd degree. What was your: baseline" PSA before you started your 1st round and what was it after? Same question for the 2nd round: baseline PSA prior to start date?

pepsiguy.....no signature, so had to go look up your previous posts with signature. What treatment after provenge, continued HT, nothing posted after 7/13 on signature? What's your opinion of the results from the Xofigo? (I read your post under Update, so kinda know some)


My husbands alkaline phosphate was 211....high!
Thanks for any info that you post...
Sal

ted....It is my 2nd round...I finished first 6 injections about 7 months ago. my Rad Onc called me to ask me if I was interested in another 6 rounds while participating in a study...dont know what the studys about but I believe they want to see how well 12 shots work instead of 6. I had a bone scan shortly after my first series of Xofigo and it showed significant improvement.....tumors still widespread but much smaller. PSA also dropped to .6 but I was also on Zytiga at the same time which I believe was the biggest reason for the PSA drop and better bone scan. Pain was a little better after all 6 shots.....but not that noticable. Once again this is hard to guage as I was increasing my pain meds at the same time. PSA at first was 12....but after 6th shot it was .6.....but like I said....probably due to starting Zytiga. I am due my 8th shot of Xofigo on the 10th and my PSA is holding steady around 20. But it was rising steadily after 1 year of Zytiga so I switched to Xtandi/HT and it stopped at 20. My last PSA came in at 18.7 but from the clinical study lab which is different than my monthly PSA reading by my Med. Onc. It still shows the Xtandi has kept me stable for 3 months. Like to see it drop a little faster though...And hope I handle the next shot of Xofigo better......was sick for 3 days after and now my WBC is pretty low. Anyhow.....Im doing bloodwork every week for the study for the 1st month.....then twice a month after that. hope that answers some of your questions. Its my understanding Xofigo is more for pain and not so much PSA.

Sal,

Thank you for starting this thread and providing updates. I also find this thread to be very informative, knowing that someday I will likely be looking at this treatment option. It is extremely helpful to read the experiences of those whom are receiving, or have completed, the Xofigo treatment.

I live in the northeast and also not looking forward to winter!

Thanks again, wishing you and Ted the very best,

tednsal...we are all in this same holding pattern for now I guess.....I was called and told pretty soon but when they get it...its first priority will be to paying customers and 2nd priority will be for the study. The study as I understand is simply to see if 12 shots can work and what the results would be.

Good news....Xofigo 3rd injection has been scheduled for 11/13/14.............after canceling the one in October 23rd......due to contamination of medication.

Latest lab resultants were potassium and calcium levels were low....hope that these will be normal when husband goes for next blood work up..... will update after we get those results......

Yea!

sal

Had 3rd injection on 11/13/14 a day after husband's 70th birthday. There have been no side effects to mention from this treatment, except the never-ending fatigue and lose of strength. Otherwise, he is doing as well as can be expected for a 70 year old guy with Stage 4 Advanced Metastatic Prostate Cancer diagnosed in 1999.

08/14 132
09/14:112
10/14:75
11/13:62.4

I will let the numbers speak for themselves. Three more treatments to go and then wait a month or two for a bone scan.

In regards to the shortage of this medication" It seems that the "cork" or stopper on the vials for this medication had left particles in the vials or containers which is what caused the contamination and stopped production. I understand that they have changed the "toppers" and are doing one more filtering of the medication before sending it out to the Denver distribution center from Norway.

sal

tednsal said...

Just as a "side bar" comment.....I miss Rob (Gizzy'n me)......

sal

I do too, Sal!! Some threads pop up and it brings him to mind. I keep wondering if he would think cancer is limited or very very strong. It was very hard to listen to his lonely story. You and he kept up with the caretakers and now it just doesn't seem to have the same feel, like the heart has gone.
I do think of all the caretakers here and how exhausting dealing with disease can be. Especially at this time of the year, it's hard not to think that everyone is sitting happily around the tree with a happy healthy family, while you ponder which treatment might give you the greatest odds.
I'm sure many of us are keeping up with your updates and wish you and Ted the best. It's a long lonely road, as Rob new so well.

Good to hear he reacts well to his treatments....I just had my 9th infusion yesterday and feel pretty good as well. I always seem to feel like Im toxic the day after the shot....almost like I can taste the radiation and smell it when breathing. Good luck and enjoy the holidays!

Sal, thanks for the regular updates. My heart feels heavy with all you folks are going through. It's been a tough road. I hope the platelet issue settles down so he can continue the Xofigo.