Starting Xofigo/Radium223

Thanks Jerry....I'm hoping for the same....and no transfusion.
How's the weather up there....we had 4 degrees last week.......burrrrrrr!

sal

Sal, it's a Michigan winter. It's shocking when TN gets those temperatures, but here they're common here and may last for days. 3-4" of snow yesterday morning, no biggie, brush off the car and head for work. It's a very different lifestyle from TN when they call off school on the prediction of snow! The good news is we have the road maintenance equipment for it, the drivers can handle it, and the whole region is very flat so getting around really isn't much trouble.

So, I'm about to throw on my puffy down coat and head to work! (Have I mentioned I miss TN? I think so. Pretty sure. Yep, definitely miss it!)

Jerry

Sal,

Been following your thread and thank you for the your regular updates. Been thinking about you and Ted and your walk with PCa. My heart goes out to you both and you are in my mind as well as my prayer list. You guys have been down a tough and winding road.

I'm with you that the platelet issue get resolved and settles down, so Ted can continue with his next injection of Xofigo.

By the way, while at my November visit with my oncologist (West Clinic-Memphis, TN), I ask her what would be my next treatment if my current one fails, she said Xofigo.

Take care and keep us posted.

Dave in Bartlett, TN

Just have had 2 treatments with xofigio last one Jan 13th . Psa keeps rising and is currently at 3,005 up from the month before when if was 1,670. Alkaline ph # has remained at 195 and 194. Freezing cold almost all the time low B/P at 90 over 60 .Had 6 rounds of docetaxel with prednisone , that failed followed by 2 months and 5 days of xtandi that never did anything. Currently gets monthly hormone Injection of firmagon and xgeva. Pain in legs seem less , they have him doing both bone and CT scans o Feb 2 with bloodwork on the 6th for" may be" 3 rd treatment. What should be next? . WHEN? If psa rises by 70% this month we could be In 5,000 teritory...what would any of you Do?? Thanks Sue and Dave

Just have had 2 treatments with xofigio last one Jan 13th . Psa keeps rising and is currently at 3,005 up from the month before when if was 1,670. Alkaline ph # has remained at 195 and 194. Freezing cold almost all the time low B/P at 90 over 60 .Had 6 rounds of docetaxel with prednisone , that failed followed by 2 months and 5 days of xtandi that never did anything. Currently gets monthly hormone Injection of firmagon and xgeva. Pain in legs seem less , they have him doing both bone and CT scans o Feb 2 with bloodwork on the 6th for" may be" 3 rd treatment. What should be next? . WHEN? If psa rises by 70% this month we could be In 5,000 teritory...what would any of you Do?? Thanks Sue and Dave

Thanks Sal,
I am going to begin Xofigo on Feb. 25th so this thread of yours has been immensely helpful. I got your fine reply on my new topic but thought I might bump this thread up to see if we can together garner more info . . . Q

Doctor visit again.

Our latest news was not good. Platelet's still dropping, now it is down to 19,000. Nurse practitioner & medical oncologist suggested a bone marrow biopsy, after a platelet infusion. This test will tell them if it was the Xofigo that is causing the low platelet count, or if the bone marrow is more cancerous & that is where the problem lay's. If it's the Xofigo, just a "rest" may help husbands system to regroup & start creating platelet's. Otherwise, we are on the downside of PC and it will be just a matter of time. There are no clinically proven treatment's for bone marrow cancer & at this time no clinical trial either. It will take a week to get full result's from biopsy.

Don't want to do any Phase I or 2 trials, thinking more about "quality of life". Just wanted to update. Will update more on the Xofigo/Radium223 later.

Peace, Love & Hope

Sal

Hello Sal,

So sorry to hear the news for Ted isnt great, just wanted to say thinking of you.

adjust said...
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,

Just updating this thread on our journey with PC:
After battling this disease for 15 years,it has progressed to become Stage IV Advanced Metastatic Prostate Cancer (has metastasized to his bones), he started on the Xofigo/Radium223 in late August. His first treatment was a miracle, husband responded well and was up and about, except for the continuious fatigue he was doing better. However, when it was time for his fifth injection, his blood counts were not high enough. These treatments, as all treatments, help and hurt the patient's system, and it's true with this treatment as well. The medication goes to the body's bone marrow and works from the inside out, killing cancer cells along with bone marrow. The bone marrow creates platelet's which help with clotting, creating red and white blood cells. To continue this current Xofigo/Radium223 treatment, Ted's platelet count had to be 50,000 or more and this was not happening, his counts were getting lower and lower, to the point of having to have a blood and platelet infusions. This latest condition had the medical oncologist concerned and requested Ted to have a bone marrow biopsy. The following morning after the biopsy, Ted experienced a numbness in his left hand, left side of his face, with our son, John's insistence, we go to the ER at a hospital known for having a good neurological department. This said, we go and Ted had a barrage of tests, x-rays,EKG, CT's,MRI of the brain, electrocardiogram, etc. We stayed in the ER until 8:30 that night, at which time he was transferred to a room and possibly some rest. Next day, woke up at 5 am for lab, and then the procession began. The medical oncologist came in and advised that there were several lesions in the dura (lining of the brain), probably metastasized from the prostate cancer, could be radiated. The neurologist also came in and said that this was not a TIA, but systematic of one because the cancer has caused the blood to run thick causing a blockage, which was what happened in this instance.
We have had several weather issues here in Tennessee lately, which has caused cancellations of doctor appointments to go over the latest biopsy results and what it means to Ted's livelihood. We finally were able to see the doctor Thursday morning, and the news was not very optimistic for the future. Radiation was a possibility for the brain lesions, side effects, hair lose, continued fatigue, etc., for the depletion of the bone marrow, no treatment available. The idea is that his system is "tired" from all of the years of treatment, his bone marrow is just not "bouncing back". MO advised Ted could continue on with medications (not Xofigo/Radium223), but that would just be "putting off" the eneventable. Hospice care was suggested. Quality of life is an issue that we must think about at this time verses continued therapy only to extend life a few more months.
We will see the MO again on Monday, to see if husband wants to do radiation on his head, maybe actually having a consultation with the RO directly, and to get his prospective on this procedure, will possibly suggest next step. No other treatments for the bone marrow issue and he can continue the hormone therapy, but the Xgeva will be useless with these latest findings.
So, our journey is coming to an end, he has fought a good fight, his body and he, I think are both tired and ready to lay down. I'm not ready for this to happen, but I am not the one with the cancer and living inside of his body. So I will agree with whatever he wants to do and I will continue posting until......

Peace, Love and most of all Hope to all of you PC Warriors, this is a good treatment option, and if your blood counts stay up may be very beneficial overall......would have taken this treatment anyway....

sal

Tednsal,
Just wanted to let you know your in my thoughts and prayers.
Theresa

Madelyn,

I am so sorry for your loss. It was so sudden and it must be such a shock. Know you are in my thoughts and prayers.

Cathy

Sal,
So sorry to hear your news. It has been a long, well fought journey. I haven't been on this sight for some time. My husband has been doing well, has been on Xtandi for 29 months. He is now 68 years old and has been fighting this beast almost 14 years. His numbers have been good, but are now starting an upward climb. His PSA was .37 in January. That seems like a tiny number compared to so many, but considering he started chemo when it was .94, it is getting high for him. I guess everyone is different. When he was on Ketoconazole, he had a run of 29 months, so I can see we are headed for new ground once again. He has never seemed to fully recover from his chemo, but it could be the side effects of the Xtandi. Gets tired easily, hands seem to cause pain and at times he gets confused with the easiest tasks. He, like your Ted, has been a real warrior. It is so sad to watch this take them down such a terrible path.
I want you to know you are in my thoughts and prayers. There are so many here who have benefitted from all your knowledge and experience and I want to say "Thanks" for being here.
I will continue to stop in and check on you!
Sue