Hi my heroes! Can you please tell me what to expect and how to advise him ? Please share your experiences and progress as well. All hope and smiles 😊 welcome!
My dad loves to be on the go and he feels floored since radium. For him to sleep all day or wake up past 12 just isn't him, but thankfully he is allowing himself to rest. He has fought exhaustion through the 5 year cancer battle but not this exhausted or weak since chemo.
When he became castrate resistant he was first switched to zytiga and 5 mg progesterone. Cancer spread while on zytiga so this is his current protocal.
Lupron ( has been on long)
Xtandi
Exgeeva
Radium -223 (xofigo)
Ty guys for always making me laugh, for teaching me, for being brave, honest, and loving. I am grateful.
A loving and worried daughter,
Erica
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Daddyishealing
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Tysm do you have any written literature bc I want him to be able to site to his Dr. Tysm. He trusts his Dr, but now this isn't making sense to me. Hope, health, and humor always, Erica
Tysm I looked for other sources and can't find . It's saying aggressive dual therapy no fractures and life prolonging. Can I ask you honestly, after this what's left to fight this disease. we have find docytaxyl, provenge, xytiga, lupron still and now here we are? Are there other treatments left?
Doctors in my experience don’t want to see or hear about what you heard they will do what they were taught I have had to be my dads advocate and act and fight like it’s me. They are not into us googling and looking for answers on forums all 5 of my dads doctors laugh when I bring up something from this forum. It’s a joke to them. And I can see where they r coming from but after 6 years of this battle I read so many articles and forums that I could be a prostate doctor and now when I speak to them they think I’m a doctor or have medical experience lol I think no I’m trying to keep my dad alive and well for as long as we can!
That’s weird my dad was on xtandi and they were going to start him on xofigo but because the xtandi made him feel like he was losing all lower extremities the doctors never said they would take him off xtandi they said he would do both that’s when I had to jump in and say if the xtandi is making him unable to walk I have read and heard of issues from xofigo. Thanks for the article I don’t think they should combine the two but what do I know I didn’t go to Med school
Hubby just turned 69. He did great on Xofigo, a wee bit tired for a week or so afterwards but otherwise he handled it very well. He received his last injection 2 weeks ago so he's happy. I had read nothing but horror stories about Xofigo . I'm thinking unless something goes wrong people don't share which is sad. His blood panels were closely monitored every month, and the RO saw him via tele-med prior to each injection. Keep the faith and stay positive, so very important! No negative energy allowed in our home.
They took him off xtandi fir just a week. He sees a tiny difference but i see hes confused, forgetting words, thoughts, and is this all the cancer or the trearment? He still fights on and works but i see sufferring abd exhaustion in his eyes. I see unspoken fears for us, his daughters. This is freaking hard. Praying he has more besutiful days. Friday is his bday xoxo
I'm so very sorry. Yes, it's a difficult journey for everyone involved. I've tried to hide my fears/concerns from my husband. When you are joined at the hip like we are, it's difficult. But I feel he doesn't need to see my worrying as that just adds to his concerns. We take things one day at a time. Today, this moment, is all we are guaranteed. These past few years have taught me patience and to always have hope. Happy Birthday to your Dad! Enjoy his special day, shower him with love.
I hope he is taking Xtandi+Xofigo on a clinical trial. They stopped a trial of Zytiga+Xofigo early because of excess skeletal events and deaths. Adding a bone-preserving agent seemed to help but did not entirely fix the problem. On the clinical trial of Xtandi+Xofigo, everyone is taking Xgeva or Zometa.
No , he is NOT IN CLINICAL TRIAL. Can anyone send me links , so I can print and arm him with questions for Dr. Damn it. Now I am more scared.tysm for taking time for us! XO Erica
Xtandi after Zytiga will not work for long, two months maybe. I would stop Xtandi now and continue with Xofigo. Accept a rise in PSA during the Xofigo treatment.
I strongly suggest you email him those links in advance of the meeting. Printing them out and expecting him to react on the spot is less effective in my experience.
An uptick in fatigue when starting Xtandi has been reported by some (myself included).
As for the Xofigo, it, too, can affect some of the basic blood cell counts, some of which can indirectly create tiredness and fatigue. I'd be keeping close tabs on things like red blood counts, hemoglobin levels, etc., throughout the treatment with Xofigo.
His white blood cell count is now slightly low now. Fourth treatment . He is having full body pain that is now interfering with function and he's a happy guy who pain has to be very strong to ever stop. I've never seen him in this much pain or having this much difficulty . Any thoughts , hope, experience?
I have #5 Radium 223 coming up next week. First 3 treatments I was extremely pooped for several days.....basically slept and had very little appetite. Number 4 treatment was a breeze. Blood work has been good all along. Hopefully, it will get easier for him as it did for me.
Zytiga did help him for a while and he has complaints of exhaustion but nothing like this. He still continued to work and enjoy life daily with few issues. At first moody , but then that leveled off.
Best of blessings and luck and healing energy that your treatment starts kicking some butt!
My PSA was rising the whole time (0.028 in Feb), they kept saying "it's expected to rise a little" but I had no improvement in pain levels and my left leg began to swell, they did a PET scan and shows have progression to Spine, Hips and Legs, PSA went from 75 to 140 in less than 3 weeks.
It's been a tough ride but I'll keep fighting for my boys 11 and 10 years. Good luck to your Dad.
I am sorry as it sounds you are also in pain.( Applying organic peppermint oil helps chronic pain, salon pas the tiny patches last long, feet dat jow ..Chinese martial arts lineament , tens unit I literally live with on me . I do not know cancer but 25 years of chronic pain that I'm disabled by, so if there's anything I can do please ask.)
I thank you for your well wishes and I'm saying a prayer for you and your lil tykes who I am sure keep you smiling. Blessings, and energy sent your way. Don't give up, champ!
Last 3 or 4 days I've been stuck in bed, my left knee hurt so bad and couldn't walk without crutches, I was taking full dose of Oxycontin 240mg daily with little effect (I slept more lol). Anyway got up this morning, zero pain in knee and no crutches, it's not the first time but it was the first time I thought "This is the beginning of the end" seems like I'm like a Cat with a few more lives. Take care.
Yes, you have a few more lives left. Oxy loses effect with tolerance . But the fact that today no crutches...I just want to high five you bc I understand the small joys of pain relief.
My feline friend, enjoy and you are allowed to hiss at people when in pain. You remain in my mind and I'm praying xoxo
How are you doing? My dad is now in full body pain and I thought of you? Hope your boys are doing well and that despite this pandemic being awful that you got even more special family time with your little champs. Wishing you good health and warm comfort xo
Thanks for thinking of me. The last 10 days I've had increase in pain and in some new places (arms), I'm still way down on Oxycontin dosage, it may just be colder-damp weather causing it. I seem to suffer more from fatigue with the Zytiga, I'll take fatigue over pain any day.
I've been walking my dog regular with my boys only 30min sessions, I'm just trying to build some fitness and stamina when I'm able. I see Oncologist Friday, I don't think the pain increase is anything to worry about but it will be good to see him for peace of mind.
I miss my family in UK, I wish this pandemic would get under control, if I can get the vaccine I will travel, I'm more concerned about giving it to my Mother than myself. It can be frustrating as I don't know how long my health will hold out to be fit enough for flights etc, always feels like the clock is ticking lol
Hope the pain isn't too bad for your Dad, it's always tricky getting the balance just right with pain meds, you don't want to be in pain but you don't want to be sleeping all the time or with a foggy head.
How old is your dad? I’m realizing age has a lot to do with the treatments. My dad is 82 and a lot of the treatments have made him worse. From moody to not being able to get oof of his chair and walk. Again everyone has there own feelings and experience but I have been dealing with this since my dad got diagnosed 6 years ago and it’s not getting better as he ages. The treatments really slow him down. We took a break from the treatments and it’s like he has all this energy even for a 82 back but he will start back on them and the 82 year old will act and feel like 102.
Tyfs. My dad is young 67 going on 68 ( I think ) lol . As a woman who got sick at 20 and lives in severe chronic pain it is do hard to watch, bc I know exactly how certain things feel. I also know first hand the frustration with limits , so I'm still amazed at his optimism , at his smile, his choice to fight do hard .
His main issue is exhaustion since treatment and moods but fir him it's the exhaustion that bothers him most. Kit I will share anything that could be helpful. Healing love to your daddy and to you and the family. Tysm for the time you took to share.
Your said your father has had prior treatment with chemotherapy. How many cycles was that? The reason I ask is that men who are chemo-naive (never having used chemo before) usually do better on Xofigo. I began Xofigo treatment with a cohort of men who’d all had chemo previously. I was the only man who’d never had chemotherapy. As it turned out, I was the only man who completed all six Xofigo treatments. All the others’ white blood cell counts dipped so low that to have given them another dose of Xofigo would have killed them! For me the treatment was very easy to abide. Yes, it’s true that your PSA is basically left unattended during this treatment. My PSA rose 8 numbers during that six months, but the treatment debulked the cancer in my bones and my PSA came right down when I went on Zytiga.
I would like to offer a special shout out to Bayer Pharmaceuticals, Inc. who gave all six custom mixed treatments to me at no cost thanks to a letter written to them by Cancer Treatment Centers of America.
Thanks for letting me know this I have read a lot of articles that said but my dad is 82 and I don’t know if we should go that route xofigo im worried about his blood count getting low and no energy he barely has energy now?
You could consider using Xofigo (Radium 223 Dichloride) knowing that if his white blood cell count dips too low the treatment will be suspended for a few weeks to see if his numbers come back up. If they don't rise within that amount of time, you may be assured that the radiation oncologist will not be giving the drug to him anymore. Most doctors seem to be adverse to killing their patients!
He had the full course of chemo but while body blew up and discontinued for the last round . When first given however many rounds he had one less. He went straight to chemo and lupron aggressively when dx.
I'm so happy to hear your outcome. How are you feeling these days?
I'm doing pretty well. I've been on Zytiga since 10/22/18. It seems to be keeping my PSA very low (.01) and my testosterone even lower! It may not continue to be effective much longer, but so far so good. I did great on Xofigo (Radium 223 Dichloride) but, like I said I was chemo naive. Best of luck to you all. May you be satisfied with the treatment choices you make!
His white blood cell count is now slightly low but they did a fourth treatment . Also he's in widespread pain in all muscles and difficulty with movement I've never seen bc he never ever complains and admitted his function is being limited. Never saw in this much pain. Any ideas on how to help. As a daughter what's the best I can do for him...spend more time with him? I'm going crazy bc I can't help and I live in severe pain. It's traumatic to see.
Do the white blood cell count levels drop lower for men who have had chemo? My father had 10 rounds of taxotere in the past. He will be starting ra-223 soon... I'm scared they will drop too low....
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I had read nothing but horror stories about Xofigo . I'm thinking unless something goes wrong people don't share which is sad. His blood panels were closely monitored every month, and the RO saw him via tele-med prior to each injection. Keep the faith and stay positive, so very important! No negative energy allowed in our home. 
Xtandi failed suggested Zytiga
Provenge vs Radium 233
Decision time on Tuesday morning after progression shown in scans
Ra223 Xofigo and Cabazataxel compared 
What should I expect at the end?
