After my prostate surgery, and being assured all the cancer was removed, my PSA tripled, in 6 months, from .8 to 2.50. Pet scan showed four tumors in my bones. One at the top of my shoulder, one on my rib, one on the spine in the middle of my back, and one near the tail bone.
So I had 4 SBRT treatments this January (2023) . Only side effect was tiredness. Doc put me on Lupron. He also wanted me on Xtandi , but I decided against it. Too many stories on terrible side effects. Lupron has been ok,.. frequent urination,.. small hot flashes.. I have been on that since January. Went for my 3 month PSA blood test last week and my reading is 0.008! Very happy with the outcome so far. Wanted to let you know since the SBRT treatment I have also been taking Ivermectin and Fluconazole, every day. Who knows if that has helped ,.. but why not. Iver and Flu does not interfere with the Lupron .
My goal from this point on is to have a good quality of life, not quantity.
`I walk about 6 miles a day. I am 72 years old.
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Tbird24
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Too bad that listening to anecdotal stories instead of seeing for yourself kept you from getting the best therapy. Xtandi improves quality of life by delaying bone metastases.
That may be true for some but for those like my husband and others, Xtandi has horrible SEs that end up being intolerable. It may prolong life but the cost is very high. I wish those who aren't bothered by the SEs continued success and the knowledge that they're very lucky indeed!
6 miles/day is impressive. That will certainly help with the side effects. I dont know about you but when I start feeling tired, i take that as a cue to get an additional 500-1000 steps and somehow the tiredness goes away.
What is your definition of "studies"? I am not aware of any clinical studies done showing effectiveness relative to treating Prostate Cancer with Ivermectin. I have seen studies done on it's effectiveness on horses for parasites. Please do not say evidence exists...and then fail to reference it so others can check out the validity. Sick people can't afford to play around with anecdotes. We have a responsibility to be accurate here for the sake of science...and health. I am a Patient Advocate with a MPH and PC Survivor and sit on panels that review Clinical Studies. I need facts. FACTS MATTER!
‘Stories on terrible side effects’ from Xtandi are common. Stories of well tolerated side effects from Xtandi are not. It’s for this reason you are well advised against using folklore to guide treatment choices.
Sorry your ‘one and done’ RP didn’t work out, welcome to the club.
Lupron alone seems like a great idea to you now. Consider this: The stories of terrible side effects from Lupron are even more common than from Xtandi, but not usually after only 4 months. Yet many tolerate it well for years.
If you continue to tolerate Lupron well, you are likely to tolerate Xtandi with it also. But adding it later is not nearly as effective as taking it now, so the opportunity will have been missed due to anecdotal evidence.
The walking is great, but adding weight bearing exercise to it will counter the debilitating loss of strength that Lupron is known for. That muscle wasting-which is inevitable without intervention-is also the source of the fatigue Lupron is known for. Great luck to you!
Think about adding Soursop extract Google for more information. Fenbendazole I believe has killed my cancer in two locations and one that is non active. According to my last PET scan. All I've ever been on is Casodex.
Soursop. Lots of really positive info o that out there in alternative therapy. ! I am in Canada, wonder where I could get that.May I ask your Casodex regimen?
I have been on same 150 mg per day for a year, but pulsed down to 50 mg day for two and half months as a breather from my sore tits!
Only a tiny marginal increase in psa happened by doing so.
I was a poor surgery risk, so went with radiation, and hormone. Went through a number of treatments, two chemo (first tried to kill me, second tried the same, neither helped. Currently on Xtandi and will go LU-177 soon. PSA is about 250 right now.
As others have said, you should ignore anecdotal stories of bad side effects and make treatment decisions based on sound evidence from clinical trials. Lupron plus Xtandi is a very good combination for extending progression free survival. Yes there are side effects but everyone experiences them to different degrees. For me so far they are quite tolerable. You will only know by trying it yourself. You can easily stop it and change if they are too severe.
My husband has had some added fatigue on Xtandi, but that's all. I can't agree more with the voices here encouraging you to try and see how your body responds. You can always quit if the side effects are overwhelming. It could be extremely beneficial to you. Prayers for you...
Tbird, you have made your decision; although contrary to the best medical evidence available, you have chosen the palliative care that today rewards you with immediate benefits. How long is to be determined.
No one knows in this forum of where you started in the process. I would imagine that prior to your prostatectomy, you already had micro-metastases taking place and it mattered not the first line treatment for prostate cancer that you received.
Me? I took after different approach in May 2004 when I was first diagnosed with metastatic prostate cancer (two Mets to my spine). immediate Lupron injection which continued until February 2010. Enrollment in a six month clinical trial which consisted primarily of nine infusions of Taxotere alternated with nine infusions of Adrimyacin.
One thing I learned early on that the fear of side effects was false. Most if not all can be mitigated. At 76 years of age, I can state that my quality of life is excellent. In either case, I enjoy life and my family.
Antidotal experiences by most in this forum is a bane. Listen to and ask questions of your medical oncologist as they are the best source of information. The burning question is, what makes them an expert compared to a person who has spent a minimum of ten years in advanced education? Now, there are several in this forum who have never had metastatic disease, yet they are well read on the subject and can steer you as to the latest treatment methodology. Understanding how mutant cancer cells attacks one body is key. All dependent on the amount tumor load, existing co-morbidities, and physical body strength. Early intervention with systemic treatment is important. It is unfortunate that many seek out this forum or medical care after cancer has taken its toll where palliative care is the only option.
Fear of the unknown is a strange bed fellow. I do wish you the best in fighting this bastard disease and many years of quality of life.
Thank you Gourd Dancer: I do listen to my doc... he was ok with me just taking the Lupron. At first I didn't want to take that either,.. but he said I had to... I had to starve the tumors. I am not a real fan of medication,. as you can tell.
I would take Xandia and find out what the side effects are then if they are bad you can stop it. Don’t let fear of the unknown stop you. Dying from prostate cancer is not fun. Prolonging life is a good thing. There are times when the side effects are worse than the disease but it is not common.
After Rp in Jan 2022, 7mo’s of lupron n then orgavix and 5 mo of zytiga, 32 trx of RAD I made the decision to take a vacation. Initially psa went to 6 from.34 after test returned to 585, decided to go on ivermectin 48mg/every other day for six doses n tested after last dose. Testosterone remained around 500 and psa dropped to .9, also had the psma scan done same time n two of the three lymph nodes that were lighting up no longer showed up n the third was half the size n still shrinking from the radiation ☢️. I’m not promoting ivermectin just stating my results w it. There are some that are just hell bent on using these very effective but also very detrimental drugs that usually prolong life but don’t kill the cancer ♋️ cells, so I gave ivm a try n will keep you guys posted as I’m not out of the woods yet as this is an ongoing battle…
Even after removal of the prostate there is no way to know if microscopic cancer cells aren't lurking elsewhere. But at least you don't have worms. Why would you trust stories about drugs meant for treatment of parasites in animals and not actual proven drug treatment for prostate cancer? I just don't see any logic in that.
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My 22 month psa after radiation treatment (SBRT) is 1.25. What should my nadir be? Less than 0.5?
