I had 6 radiation doses my psa was .04 everything was good in July I had pain in back left side Dr said sounds like kidney stones ct no stones ,new mass aggressive prostate cancer now i had to start chemo after 3 cycles ,they tested me said everything looked good but I would have to stay on chemo the rest of my life for till I can’t tolerate it anymore. I was scheduled for six treatments. I was on the strongest chemo they can give you a strongest dose they can give you plus one more that they give women for breast cancer first three treatments weren’t bad fourth and fifth started to get worse I came to Florida for the winter change my doctor to a Moffitt Cancer Center in Tampa seen the doctor after we’ve got to Florida. He says you can’t stay on chemo the rest of your life he took me off of it after the fifth treatment, which I was so thankful for put me on the Xofigo it’s a radiation isotope injected into your bloodstream once a month best treatment ever a little bit of diarrhea. Other than that it was great. I have one more May 2. I’m on my way to see my cancer doctor today but since then another spot popped up on my back more aggressive cancer. They’re talking about patient in a couple weeks does ,the Xofigo is once a month for six months. He gave me six months of relief down here in Florida to enjoy the winter and I’m going back to Ohio after my last treatment find out which doctor wants to do what Ohio or Florida I don’t know who I’m gonna listen to yet.
Just back from medical oncologist
Since 40 days radiation in 2018, on and off Zolodex, radiation of L2 in 2021 and back on Zolodex, then Jan 2023 when PSA went from 1.2 to 4.0 to 9.8 I got on Enzalutamide and it dropped to 4.1 in 6 weeks and now to 1.7 in next 4 weeks so its working
Just added XGEVA injections every 3 months to push calcium from blood back into bones, but I must take 1,220 mg of calcium daily
Yes. The radiation therapy erased them. By the 20+ session of the 39, the technician told me Mets were gone. When the PSA went up the PET scan showed nothing. Big time relief. I do not know about you my friends but getting PET scans and PSA is torture. So stressful.
The waiting is especially, is that what you are referring to? Are yall getting the newer scans, Gallian, PMSA? Our insurance will not pay for those. It has been frustrating. We appealed it but didn't help.
I got the Axumin pet scan. They have PSMA now where I live. I have federal insurance and they cover it . Waiting for the results of tests is what I am referring to as torture. I hate waiting for results. I have issues handling stress.
I understand I went to my primary care physician and he gave me a mild medication for depression and sleep issues and it has helped a lot. I am 75 and was a managing partner lawyer in a mid size law firm I never had issues of depression prior to PC. Age, medication, cancer changes everything Good luck!!
Went to my cancer Dr yesterday at Moffitt in Tampa just found out the Xofigo I’ve been on all winter does not work on my aggressive cancer on my back so it’s been growing the hole time now they have to radiate it I’m so mad the doctor knew this in the beginning I don’t understand you trust with your life I’m pissed sorry 😞
It really sucks that your doctor knew this information and didn't share it with you. Do you have options to switch to another doctor or hospital? Do you have any cancer hospitals nearby that are certified as Centers of Excellence? We have Memorial Sloan Kettering in NY. These centers are supposed to offer the newest/best options for us. I also found out that my insurance company, Empire Blue Cross, has a special program for those of us that go to Centers of Excellence. They waive all copays and cover doctors that are outside of my regular network. It was a shockingly great discovery for me.
Went to my cancer Dr yesterday at Moffitt in Tampa just found out the Xofigo I’ve been on all winter does not work on my aggressive cancer on my back so it’s been growing the hole time now they have to radiate it I’m so mad the doctor knew this in the beginning I don’t understand you trust with your life I’m pissed sorry 😞
I am on Enzalutamide or Xtandi since Jan PSA dropped from 9.8 to 1.7 in 8 weeks
L2 lumbar was radiated in 2021 Spine has abount 4 spots T10 T11 L1
40 Rads on prostate in 2018
Just added XGEVA injection 7 weeks to push calcium into bones I am 78
Tired but feel great
Must take 1200 calcium daily Staying on Zolodex injections 3 mos
It really sucks that your doctor knew this information and didn't share it with you. Do you have options to switch to another doctor or hospital? Do you have any cancer hospitals nearby that are certified as Centers of Excellence? We have Memorial Sloan Kettering in NY. These centers are supposed to offer the newest/best options for us. I also found out that my insurance company, Empire Blue Cross, has a special program for those of us that go to Centers of Excellence. They waive all copays and cover doctors that are outside of my regular network. It was a shockingly great discovery for me.
I’ live in Ohio I go to the Cleveland CLINIC CANCER CENTER I’m a snowbird i switched over in November I will be going home in May after my last injection im scheduled for radiation of the aggressive cancer I would rather get at home I have a great radiation dr at Cleveland I don’t think I can wait to get it then im afraid how much its grown I just hope they know what there doing Sloan Kettering is a great place I heard I’ve thought about Mayo there number one
I too am on Prednisolone 10 mg because I am on Abiraterone 1000 mg daily. I too have a ravenous appetite, but apart from trying to cut down a bit on my carbs, I am doing nothing. I used to walk for over 3 miles everyday which I had to give up because of extreme fatigue post radiation. I re-commenced walking 10 days back and 5 days ago I slipped and have had an ankle injury. So, back to no exercises and just hogging and keeping as happy as I can!!!
You mentioned “prednisolone”. Did you mean “prednisone”? I ask because I’m on both but the prednisolone is an eye drop. Most people that I know who are on prednisone do have the problem of weight gain because of the stimulated appetite. That includes me.
Just back from medical oncologist
Since 40 days radiation in 2018, on and off Zolodex, radiation of L2 in 2021 and back on Zolodex, then Jan 2023 when PSA went from 1.2 to 4.0 to 9.8 I got on Enzalutamide and it dropped to 4.1 in 6 weeks and now to 1.7 in next 4 weeks so its working
Just added XGEVA injections every 3 months to push calcium from blood back into bones, but I must take 1,220 mg of calcium daily
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Just back from medical oncologist
Since 40 days radiation in 2018, on and off Zolodex, radiation of L2 in 2021 and back on Zolodex, then Jan 2023 when PSA went from 1.2 to 4.0 to 9.8 I got on Enzalutamide and it dropped to 4.1 in 6 weeks and now to 1.7 in next 4 weeks so its working
Just added XGEVA injections every 3 months to push calcium from blood back into bones, but I must take 1,220 mg of calcium daily
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1 ReactionThe waiting is especially, is that what you are referring to? Are yall getting the newer scans, Gallian, PMSA? Our insurance will not pay for those. It has been frustrating. We appealed it but didn't help.
I got the Axumin pet scan. They have PSMA now where I live. I have federal insurance and they cover it . Waiting for the results of tests is what I am referring to as torture. I hate waiting for results. I have issues handling stress.
I understand I went to my primary care physician and he gave me a mild medication for depression and sleep issues and it has helped a lot. I am 75 and was a managing partner lawyer in a mid size law firm I never had issues of depression prior to PC. Age, medication, cancer changes everything Good luck!!
-
Like -
Helpful -
Hug
2 ReactionsIt really sucks that your doctor knew this information and didn't share it with you. Do you have options to switch to another doctor or hospital? Do you have any cancer hospitals nearby that are certified as Centers of Excellence? We have Memorial Sloan Kettering in NY. These centers are supposed to offer the newest/best options for us. I also found out that my insurance company, Empire Blue Cross, has a special program for those of us that go to Centers of Excellence. They waive all copays and cover doctors that are outside of my regular network. It was a shockingly great discovery for me.
-
Like -
Helpful -
Hug
1 ReactionI am on Enzalutamide or Xtandi since Jan PSA dropped from 9.8 to 1.7 in 8 weeks
L2 lumbar was radiated in 2021 Spine has abount 4 spots T10 T11 L1
40 Rads on prostate in 2018
Just added XGEVA injection 7 weeks to push calcium into bones I am 78
Tired but feel great
Must take 1200 calcium daily Staying on Zolodex injections 3 mos
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4 ReactionsI’ live in Ohio I go to the Cleveland CLINIC CANCER CENTER I’m a snowbird i switched over in November I will be going home in May after my last injection im scheduled for radiation of the aggressive cancer I would rather get at home I have a great radiation dr at Cleveland I don’t think I can wait to get it then im afraid how much its grown I just hope they know what there doing Sloan Kettering is a great place I heard I’ve thought about Mayo there number one
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Helpful -
Hug
2 ReactionsYou mentioned “prednisolone”. Did you mean “prednisone”? I ask because I’m on both but the prednisolone is an eye drop. Most people that I know who are on prednisone do have the problem of weight gain because of the stimulated appetite. That includes me.
Today he had his 5 th chemo ! Also the new drug called Xgeva ! Anyone try this one ? For the bones! Thanku 😊
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1 ReactionYes had my first Xgeva injection Momday Once every 11 weeks
No issues I am on Xtandi as well daily and 3 mos injections of Zolodex
You must take 1200mg of Calcium daily
Xgeva pushes calcium from the blood back into the bone for density
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