Agree. That’s my fear. But my urologist is confident the levels will rise on time. It would take long I know. Is the price you pay to stay alive. No regrets. Thanks.
I have stage 4 prostate cancer with Mets to the bone in 5 places. On Lupron and Eligard. Was in Xgeva but got necrosis of the jaw on the left bottom side. A 3 inch slit opened up in the soft tissue of my mouth. I could feel bone with my tongue. After going off Xgeva the dead part of the jaw bone broke off and the oral surgeon reached in and the piece popped out through the hole. After two months the slit healed up on its own. Amazing! I just finished 3 infusions of Provenge to boost my t-cells. No side effects except need for afternoon nap. Will be talking with my oncologist tomorrow about the success of the Provenge treatment.
Testosterone almost undetectable and PSA at .8 .
Post surgery with several lymph nodes positive went on Lupron for 15+ years.
Hot flashes resolved quickly and good control of PSA until eventual bony metastasis and switched to zoladex.
Many ongoing treatments, chemo, hormones radioactive radium and will start lutetium.
What was discovered about lupron, and other ADH treatments I suppose, is the occurrence of coronary artery disease which resulted in CAD and bypass surgery in a guy with no risks for CAD: low cholesterol, high HDL cholesterol and 4-6 hours/week of vigorous exercise:running, tennis, hiking ……
Control risk factors and talk to doc about Lupron and risk of heart disease. It’s real but I was/am on ADH treatment for 20 years and still alive.
The other inevitable is loss of muscle mass which is very significant. Good question for doc.
My PSA did not drop after surgery. Had three positive lymph nodes pelvic region. They were gone after 39 sessions of radiotherapy. Took Eligard for 3.5 years. Testosterone very low: 20. Undetectable PSA and 4 years in remission. Still struggle with some fatigue and urinary incontinence. Waiting for T levels to go up to feel better. No power in my legs. Difficult to lose weight. Diagnosed at 65. I am 70 now. It has been rough but I look at my kids and wife and I keep going. PC is beatable. Absolutely.
So are you still taking the eligard? You and my husband have a similar story. He is 62. He had a radical prostatectomy and then 40 days of radiation. He has been on ADT 2 yrs this June. He is considering getting off of it because with his back issues and fatigue he can’t do much of anything. I read that 18-24 months has optimum results. Just hoping cured and that psa will remain the same if he discontinues.
I have stage 4 prostate cancer with Mets to the bone in 5 places. On Lupron and Eligard. Was in Xgeva but got necrosis of the jaw on the left bottom side. A 3 inch slit opened up in the soft tissue of my mouth. I could feel bone with my tongue. After going off Xgeva the dead part of the jaw bone broke off and the oral surgeon reached in and the piece popped out through the hole. After two months the slit healed up on its own. Amazing! I just finished 3 infusions of Provenge to boost my t-cells. No side effects except need for afternoon nap. Will be talking with my oncologist tomorrow about the success of the Provenge treatment.
Testosterone almost undetectable and PSA at .8 .
Before. I regularly went to the urologist every 6 months for PSA bloodwork since there is so much history of cancer on both sides of my family. My PSA hovered around 5-6 more or less for years. Then in December 2020 it came up at 42. Two weeks later it was 72. So, it was certain something bad was up. January 2021 my doc did biopsies or my prostate and 12 of 14 samples were cancerous. I suspected metastases were likely and after a scan in February 2021, that suspicion was confirmed with mets detected in my bone in five places: my pubic bone, left clavicle, a thoracic vertebra, left pelvic bone and a rib on the right side. The cancer was very aggressive and stage 4. Six rounds of chemo (March-July '21) , ongoing 3- month Eligard injections, ongoing Abiraterone acetate (Since March 2022) and Provenge therapy(January-February 2023) happening in the order just described. No surgery. I am without pain. Lots of continuing fatigue due to almost undetectable testosterone levels. Long answer....sorry!
So are you still taking the eligard? You and my husband have a similar story. He is 62. He had a radical prostatectomy and then 40 days of radiation. He has been on ADT 2 yrs this June. He is considering getting off of it because with his back issues and fatigue he can’t do much of anything. I read that 18-24 months has optimum results. Just hoping cured and that psa will remain the same if he discontinues.
I have been off Eligard since June 2022. I am off Xtandi too. The fatigue improves after discontinuing Eligard. I took it for so long due to having a very aggressive cancer. Gleason 9. 24 months for your husband may be enough but his urologist decides that. Some people are off and on this drug. Best for your husband. He needs to stay positive. It’s a long and difficult road but it may lead to a beautiful destination.
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Agree. That’s my fear. But my urologist is confident the levels will rise on time. It would take long I know. Is the price you pay to stay alive. No regrets. Thanks.
Never going to use Zomeda again it was so painful ! Down for 8 days
I have stage 4 prostate cancer with Mets to the bone in 5 places. On Lupron and Eligard. Was in Xgeva but got necrosis of the jaw on the left bottom side. A 3 inch slit opened up in the soft tissue of my mouth. I could feel bone with my tongue. After going off Xgeva the dead part of the jaw bone broke off and the oral surgeon reached in and the piece popped out through the hole. After two months the slit healed up on its own. Amazing! I just finished 3 infusions of Provenge to boost my t-cells. No side effects except need for afternoon nap. Will be talking with my oncologist tomorrow about the success of the Provenge treatment.
Testosterone almost undetectable and PSA at .8 .
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5 ReactionsThanku ! Also so what should I try to use for the bone cancer?
I am on Zolodex for 2 years Now added Xtandi or Enzalutamide :look into these
78 years Had radiation 2018 L2 radiated 2021 Its in my spine
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2 ReactionsThanku I will ask on Monday 😊
So are you still taking the eligard? You and my husband have a similar story. He is 62. He had a radical prostatectomy and then 40 days of radiation. He has been on ADT 2 yrs this June. He is considering getting off of it because with his back issues and fatigue he can’t do much of anything. I read that 18-24 months has optimum results. Just hoping cured and that psa will remain the same if he discontinues.
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3 ReactionsDid they discover the mets at the beginning or after treatments?
Before. I regularly went to the urologist every 6 months for PSA bloodwork since there is so much history of cancer on both sides of my family. My PSA hovered around 5-6 more or less for years. Then in December 2020 it came up at 42. Two weeks later it was 72. So, it was certain something bad was up. January 2021 my doc did biopsies or my prostate and 12 of 14 samples were cancerous. I suspected metastases were likely and after a scan in February 2021, that suspicion was confirmed with mets detected in my bone in five places: my pubic bone, left clavicle, a thoracic vertebra, left pelvic bone and a rib on the right side. The cancer was very aggressive and stage 4. Six rounds of chemo (March-July '21) , ongoing 3- month Eligard injections, ongoing Abiraterone acetate (Since March 2022) and Provenge therapy(January-February 2023) happening in the order just described. No surgery. I am without pain. Lots of continuing fatigue due to almost undetectable testosterone levels. Long answer....sorry!
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6 ReactionsI have been off Eligard since June 2022. I am off Xtandi too. The fatigue improves after discontinuing Eligard. I took it for so long due to having a very aggressive cancer. Gleason 9. 24 months for your husband may be enough but his urologist decides that. Some people are off and on this drug. Best for your husband. He needs to stay positive. It’s a long and difficult road but it may lead to a beautiful destination.
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