I’ve been on Abi for an about a year and Lupron for over two years. I stopped getting Xgeva shots due to side effects and the fact that the worst number on my Dexa scan was -.1. Soon after I stopped the Psa and alp both started to rise very slowly. Anyone experience this? MO is already talking chemo after a pet scan and bypassing Xtandi.
I know everyone says get a MO but honestly I trust my urologist much more when it comes to prostate cancer. My urologist routinely tested T levels and I had to beg my MO to get a T test and when it came back it simply said <40.
I see my urologist in Nov. and will get his opinion. He was at John Hopkins for several years and may refer me to a MO down there for second opinion. TIA and God bless.
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Thanks for the response but if you research you will find that Xgeva also inhibits bone turnover where the cancer has formed tumors in the bones. So one has to wonder if there were bone tumors being kept in check to a point and then that was halted and the tumors were left unchecked would those tumors not release alp and Psa? When I was on Xgeva my alp was 64 which is lower than I have ever seen it. Before the cancer went to the bones my alp ran 80 to 85.
The bone loss is caused by ADT because it lowers testosterone and also estrogens. A lack of estrogens causes the bone loss. I know a patient who uses estradiol patches to gain a normal level of estrogens. He has no bone loss while on ADT for about 15 years.
You can also radiate the bone mets detected with a PSMA PET/CT with SBRT. This destroys them and will reduce the PSA value a lot.
You should consider using transferal estradiol patches or gels to prevent osteoporosis. It has been proven to grow bone, in a head-to-head competition between Lupron ADT and estradiol ADT by the UK PATCH study. Your PCP will be the best doctor to prescribe the estradiol supplements. Private message me if you would like more information and references. I have most of them.
Fatigue, shortness of breath and upper respiratory issues. Xgeva has a half-life of 30 days which means if you get an injection every month when you get your fourth injection you will have almost two full doses in your system. I am considering going on Xgeva every three months. My SEs didn’t really become an issue until I had my third injection. Thank you very much for your response, it has definitely shed some light. God bless.
thank you for the response. I will consider an injection less often than is recommended. I have only had one(one month xgeva shot) so far and that was five months ago…. I had almost pneumonia- like symptoms as a reaction and so opted not to get a second injection, but then my subsequent monthly bloodwork showed that after the xgeva injection my PSA doubling time went from every three weeks to every four months and ALP remained constant for three months.
I forgot to mention the drugs I was taking at the time….
at the time the PCa had become resistant to enzalutamide, and so I was only taking Ogovyx, and I was waiting for a slot to open in a natural killer cell style immunotherapy clinical trial. PSA doubling time was every three weeks and ALP was shooting up fast. I decided to get an xgeva injection.(one month) while waiting for trial to start.
I had what appeared to be a strong immune response to xgeva, which presented similar to pneumonia, cytokine reaction syndrome .
I continued with only Ogovyx, and did not see receive any subsequent XGEVA injections. For the next three months, my PSA slowed way down, and ALP remained stable..
My husband was wondering the same thing. After his oncologist cut back his Xgeva from four times a year to two, mets exploded near the end of the first six-month Xgeva cycle. Need to update his profile, but he's about to start a docetaxel rechallenge after nearly five years of post-chemo stability. (10 docetaxel infusions, 2 years of monthly Xgeva, then every 3 months for about two years, then every 6 months for less than a year.)
Now he's back on Xgeva every three months, starting last week. Interestingly, he's feeling less of the general pain he started to develop after spot radiation in May to a spinal met. We're still sorting everything out as he prepares for more chemo and more frequent Xgeva. I believe one of those articles GP 24 cited said more Xgeva doesn't reverse the mets, though. We didn't ask about Xgeva at our most recent visit since we were dealing with the unwelcome chemo plan.
I'm going to keep an eye on this thread since you, farmhand, and my husband, Spouse21 all experienced changes in met volume that could possibly be Xgeva related. Or maybe as TA says: Post hoc ergo propter hoc, "after it, therefore because of it." Did adding, stopping, or decreasing Xgeva affect met volume? Dunno.
What advise side effects from Xgeva?I got osteoneucrosis of the upper and lower jaw bone from Xgeva. Lost my teeth. I hate Xgeva & the standard protocol of giving it to us.
One wonders if the 120 dose every three months was found to be non inferior to the dose every 28 days why they start with the mega dose. Could it be the nearly $4000 per injection. I have the same issue with abiraterone. I take a 250mg tablet with a low-fat breakfast and have a T level <1. I doubt 1000 mg without food will improve on that. You definitely have to do your homework and be your own advocate. God bless.
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