After Four Cycles of Ra-223

[TheWizardofWesley]

After four cycles of Ra-223 sadly it seems not to be doing as well as we would of liked. I have numinous new uptakes (to numinous to mention) as well as an increase in size of some of the older sites while a few have decreased in size or disappeared the new activity is outweighing the overall success of the treatment. At first my RO was not going to treat me with cycle #5 .. but then he changed his mind and said I'm going to treat you.?? He also ordered another genetic test from a different company other than Gardiant 360 to see if any new mutations will show up. Then he suggested that I give LU-177 a try.. that's when I kinda lost it..!! I said if you read my history you will see that I already had been treated with LU-177 at Moffitt last year and it did not work... hence me leaving Moffitt and going back to Tampa General Hospital's Cancer Clinic and my original MO who was willing to administer some dual chemo treatments (which Moffitt would not go for) which also did not do well and he suggested I see YOU and give Ra-223 a try. Anyway it's been 14 years since my diagnosis... and while I've had my share of ups and downs on this journey...my life has been fairly good to this point .. I'm just not sure what to do next? I'm starting to slow down.. and also feeling a little bone pain.. which a medical marijuana topical cream is helping. Any suggestions for future treatment ... or do I stop and enjoy the time I have left with the best QOL I can have? Thanks in advance... Larry ~The Wizard of Wesley

[Ahk1]

I would have been extremely disappointed and upset about your doctor offering you LU177. that says one thing, he never read your profile. I HATE it when doctors go inside the room without taking the time to read your chart. VERY DISAPPOINTING

[TheWizardofWesley in reply to Ahk1]

I agree with you there... I was livid..

[Ahk1]

people won’t know how to offer suggestions without you completing your profile. Your history is important to be added to your profile

[TheWizardofWesley in reply to Ahk1]

Ahk1, Sorry I don't know what else to add to my profile.. I've had all of the SOC oral drugs and was also on a 24 month trial with Olaparib and Zitiga, Robotic Prostectomy in 2011, and Salvage radiation approx. 9 months later.

[Kaliber]

imho …. No matter what your condition is or how it changes , I believe that you should get in as much QOL time as possible now. We are never better later on, today - right now is a better time for you than 3 years from now will be. You will never regret having QOL time with your significant other and family. You might regret it later if you don’t. Just say’in.

❤️❤️❤️

[TheWizardofWesley in reply to Kaliber]

I have to agree with you ... Thank you !🖖

[Kaliber in reply to TheWizardofWesley]

❤️❤️❤️

[Lizzo30]

What about estrogen patches ?

[TheWizardofWesley in reply to Lizzo30]

Not sure for what I would need them. The SE's have never really been an issue as far as hot flashes go. It's more of an overwhelming fatigue and instability while walking.

[treedown]

It's a hard place to be in and I suspect we will all be there eventually. On this forum I have seen people go out fighting and others excepting it's their time and just wanting to be comfortable with the time they have left. Not sure which one I will be either but I lean toward the latter.

[macdunno]

Sorry that I am not knowledgeable enough to help you. You should address your request to Tall Allen who can help in a meaningful way.

Good luck.

[Tinuriel]

My husband had all 6 treatments with RA223, similar results - the doc said, "we'll never know if it prolonged your life, but things might be much worse if you hadn't had it." It seems to be doing some good, and if you tolerate it well (my husband did), you may want to proceed. I remember their literature boasts being "shown to prolong life by four months." (?!?)

I am praying for you to find some better ways forward.

[TheWizardofWesley in reply to Tinuriel]

Thank you, and good luck to you and your husband Stay blessed

[j-o-h-n]

You're a freaking Wizard so do some of your Wizardry and beat those wizzy little bastards. You will be here for at least another 20 golden years....and you can take that to the WIZ national bank. Fight on and don't be a wuz be a wiz!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[TheWizardofWesley in reply to j-o-h-n]

Thanks j-o-h-n

[Seasid]

Could you try cabazitaxel chemotherapy 10 cycles?

[TheWizardofWesley in reply to Seasid]

Did that already..

[Seasid]

Most important is that your platelet count is good and that your blood test results are ok. What is your current ALP result? Chemotherapy will help you with the pain. Don't worry about the PSA too much. What is your current PSA? Are you talking Metformin at least 500 mg per day? Don't worry too much until your blood test results are not extreme.

[TheWizardofWesley in reply to Seasid]

My ALP is off the charts at 537, PLATELET COUNT 140, PSA 311.0 I went into this battle with a PSA of 1.6 at the time of my robotic prostatectomy .. Gleason 3+3 =6, after surgery 4+3=7. Why would I take metformin, I don't have diabetes.

[Seasid in reply to TheWizardofWesley]

I am taking only Bicalutamide and it looks (I am not 100% sure) that Metformin plus crestor 40 mg per day make a difference for me.

[spouse21]

So sorry that MO didn't even read your chart before coming into the room to suggest a treatment you'd already had! That's so demoralizing. I know all oncologists are extremely busy, but they waste more time backpedalling in situations when they're reading things on the spot. That's how mistakes happen as well.

You know those endless and annoying surveys medical institutions ask as a marketing tool? Tell them what happened! Tell them medical staffs must come in prepared and not read test results in the moment. We've had this happen at top cancer institutions. Right now the only oncologist who walks in prepared is our local oncoclogist, not even a specialist in PCa. She gets to the point right away and has more time to spend with my husband.

Thank you for sharing your updates. You've been through a lot. Is there a palliative team at your hospital who can help you weigh your choice between more heavy duty treatment and quality of life? Palliative care at your stage isn't the same as hospice.

[TheWizardofWesley]

You are 💯 % right about being prepared before walking in. I know my failing on LU-177 previously, was discussed during my initial consultation... I also think that now that I show more active PSMA soft tissue involvement... I think he feels it might be more effective at this point in time. .but yeah I was taken aback for sure.

I'm not really ready for any palliative care at present, I'm a fighter and will keep on "truckin" for as long as I can. BTW that was my Radiation Oncologist, not my MO who I'll be seeing next week. Hopefully we will come up with a new plan of action to move forward with. It ain't over till the lady sings... 😉

[rhenrick]

I have written here on radium 223 and how it destroyed my husband who died in April. You need to dump your doctor.

[TheWizardofWesley in reply to rhenrick]

I'm truly sorry about your husband's outcome but ...

I will have to dump my entire team starting with my Dr.s at the Mayo Clinic as well as Moffitt and TGH Cancer Center they all felt that the next step in my treatment should be Ra 223.

[Maxone73]

Can you check if you would qualify for this trial: healthunlocked.com/advanced...