I have been battling the Beast for 20 years now. The Lord has blessed me with an extended life and many more Valentine’s days than most Doctors expected. I have been on Lupron/Eligard for 3 years. One year ago, I began five sessions of Docetaxel that ended in May. My PSA dropped from 15.5 to O.56.
My PSA continued to drop to as low as 0.12. That lasted until this January when my PSA jumped to 3.6 and in the last few weeks it has gone up at least a point a week and now is at 8.3. I feel the best I have felt in a year and exercise daily.
Obviously not pleased with the result. That's the bad news. The only good news is that my scans from last week still show no soft tissue involvement but some of the bone mets are becoming active again.
From all of your experience, when the PSA begins to rise after docetaxel, what have you guys found that has worked for you in addition to the Lupron/Eligard? I have tried Zytiga prior to docetaxel and it did not work at all. I always read all of your posts so do I add Cassodex, it worked well on the beast for 4 years for me, Xtandi, Zofigo, Jevtana, Keytruda, LuLu 177,?????
I have a meeting with my MO this morning but would love some of your real-life conditions input.
Tom, thanks for keeping us updated. I know less than some, but more than others. You do not mention a PSMA Pet Scan. TA talks about the FDG Scan later in the game. One of these are bound to show you where to attack.Kwon of Mayo, and McBride at Mem Sloan Kett (MSKCC) talk about 1-3 sessions of SBRT/SABR to any few bone mets to rid them and bring PSA back down.
My Mayo MO says because the Zytiga failed before the docetaxel, that Xtandi probably will not work. That seems contrary to a lot of experiences cited on HO. What was your experience.
Everyone responds differently to medications but it was my experience that after 3 1/2 years on zytiga I went on xtandi and my PSA stayed low for 4 years.
I should interject, I have never been on chemotherapy so I don't know if that would affect xtandi's efficacy or not. But I don't think it would.
Thanks TAMy Mo says they want to begin with a routine of zofigo plus my lupron.
They said I'm not a good candidate for Xtandi because Zytiga failed before I started my chemo. Do you know anything about the side effects of the Zofigo?
My Father (62) did 6 sessions of Xofigo, tolerated it very well, loose stools a couple of days after and some fatigue. However his blood work took a hit after number 5 & again after the last session. He has had 4 blood transfusions to try and restore his levels so my advice would be to keep a close on eye on that. PSA climbed during treatment but scans showed stable disease. The very best of luck to you 🍀
He is still taking xtandi & monthly zometa, 3 monthly decapeptyl injections. He is due scans in a couple of weeks as per the trial. The spot radiation to his hips and shoulder helped the pain tremendously so we are hoping for the same result on his ribs which are quite bad now. We will know after the scans I'd he is taken off the trial and given whatever option is next but praying there is no progression.
I found radiation beam therapy to bone mets helpful - 3 times. Reduced tumor size, reduced pain, reduced PSA. Now similar to your situation, PSA rising, no soft tissue mets visible on scans, tried Xtandi, Zytiga and several more meds. For me, Xofigo had unexpectedly severe side effects and did not seem to reduce bone mets. Just me, many people have good results.
Glad to be of some help. Now taking Zoladex injections every 3 months, tegafur-uracil (UFT) tablets 5 a day (kind of chemo), steroid tablets, Ranmark injections (bone strengthening) every month, pain killer as and when. Last course of radiation beam therapy was over 3 days September last year (2021), which reduced mets on spine T10.
My doctor here at Mayo Phoenix is not in favor of radiating larger bone mets - only if painful - and so far no pain - thank God. I have 3 month Eligard shots, PSA rising but doctor wants me to get Zofigo injections, but the wait is 30 days, and I am very concerned we are doing nothing about my rising PSA - cassodex - Xtandi??? Zytiga did not work for me prior to chemo. I have never heard of tegafur-uracil. What is it????Thanks so much for your input,
Yes, I had radiation therapy the first time because of significant pain, but last year to spine T10 to prevent damage to spinal chord, which happened before, leaving me unable to walk. If Xtandi is available, I'd try it. But maybe Xtandi is not compatible with Xofigo and your doctor doesn't want to start and stop after a month.
In my case, Xtandi didn't help for more than a couple of months, but everyone is different.
UFT (tegafu-uracil) is a chemotherapy tablet first made for bowel cancer, but later tried for some other cancers, including prostate. It's made in Japan, where I live. It seems to have some slowing effect on my PSA, and I don't have severe side effects, so I'm still taking it, but now the effect seems less or nothing based on last week (Feb 8th) test.
Just one more thing - (something my wife told me to mention!). Probably you'll be fine with Xofigo, but if at any time you don't feel right - pause or stop. I didn't, and in hindsight that was a mistake. I was thinking, 'I should grin and bear, and this costs a lot of money so should be good . ..' But, as I said, probably you'll be fine. Good luck.
This was in June 2020. Xofigo was recommended because I had spine mets (T7) causing pain, and damaging spinal chord. Xofigo did not stabalise Mets, in fact the bone started to splinter, but this was not noticed at first. PSA went up steadily. And, I felt unwell, tired, unable to exercise (I was fairly fit at the time), and sometimes bright lights in my vision. But I continued because I thought it would be OK, and my doctor said most people don't have bad side effects. After 5 shots, once a month, I suddenly had difficulty walking, then couldn't walk. Also pain. Emergency spine operation followed. But everybody is different.
Look forward to a three-day trip to the seaside next month, eat & sleep well, do as much exercise as I can, keep up with family and friends, continue hobbies and interests. That's the way. But I think of it as 'living with' rather than 'fighting'.
Medically, I had a couple of operations to replace 2 vertebrae with titanium scaffolding. Pain stopped, and after a year and more of physio I walk well and can swim. I have Zolodex injections, regular blood tests and scans.
Spot on with your guesses! In fact, Minami Izu, Yumigahama. Lovely beach, onsen hotel. Yeah, too cool for swimming yet, maybe just barefoot dip. Yokohama? So near. Which part?
Wife's family home near Futamatagawa, Minamimakigahara.My wife and I lived and I always have trouble recollecting exactly and takes me awhile to find on google maps but it was in Honmoku Yokohama and Sankeien garden was not too far away.
We also lived at Sagamino which is not too far from Yamato.
It's kind of dreamy. I hope my health and covid and finances will allow me another 1 to 3 month trip. My wife will definitely be going back one of these days. I was last there in 2015.
Know the ocean route road but this time by train. Yes, health and covid add hurdles to travel. Izu is as far as I'm going. I have a sister in the US haven't seen for looong time. One day. And, hey, when you're back in Yokohama, let me know. Coffee in Sankeien?
Thanks that would be great. Japan in 1975 is when I discovered coffee could be so much more than Folgers lol.
One of my Sunday recover from hangover rock music coffee shops to my surprise is still in business since the 1970's. I thought I was in a time machine when I accidently saw it in 2015.
john-john --hot dog, coffee, beer, music near Kannai station.
You've been blessed to have 20 years in this cancer journey. Looks like you still have many more tools available to fight. I would still ask to try Xtandi. My husband failed Zytiga in 2018, then had docetaxel. After that they put him on Xtandi before LUT-177 and it dropped the psa within the month. He stayed on it for 2 years. Then he had Jevtana with the carbo- platinum. Started Erleada last fall, but that's doing so so, and Mayo now hits some bone mets with SBRT. Now Kwon is waiting to see if his genetic testing will show more tumor burden which may then show something in his mutations to qualify for another parp inhibitor. You have to keep trying everything to see if ot will work for you.
Thanks so much. I am Mayo Phoenix. I your husband at Mayo Rochester with Dr. Kwon?Yes, the Lord has blessed me with 20 fighting the Beast. Did he stay on Xtandi during LUT - 177?
Yes, my husband's primary Dr is Kwon at Mayo since 2018. He stayed on Xtandi before and all the way through Lut-177 and continued for a total of 2 years.
Well, he is 3 years since first Lut-177 and the battle is getting harder. Side effects from pelvic radiation have been the worst set back. If it wouldn't be for that pain, I would say he is doing ok.
He likely qualified and received treatment @ Mayo Rochester as they are small participators in the Vision Trial. As far as I know, it's the only place you can get treatment in the US until it's approved by the FDA. FWIW, you have to be castrate resistant to qualify and LU177 has mixed results, particularly with bone mets from all I have read.
Have you had genetic testing on your tumor? I think in this era, it should guide next therapy. Every tumor is so specifically different. I am 26 years into this disease with lots of soft tissue tumors and NO bone mets yet detectable on FDG PET scans. Suspect PSMA would show more.
Right now holding on zytiga/pred and lupron. My PSA rose some and my MO decided not to treat " a number" unless I was having new symptoms or new lesions on scan. Genetic testing has determined my next treatment but he does not want to make me have more side effects if I am doing okay right now. At age 80, I will accept this conservative approach since I am my wife's caregiver as well.
If you have great trust in your MO, listen to him and take all of our advice into consideration but we cannot answer for your unique situation.
20 years is a great testimony to modern treatment and you could probably write a memoir about what this 20 years has bought for you.
Thanks DenDoc:Yes, I have had genic testing - Formula One - and MO says nothing jumped out of the test that hints at a target. PMSA just coming on-line here in Mayo Phoenix and MO says we will have a PMSA after 2 Xofigo treatments. I do trust my MO but always interested by the "real life" experiences of all of our wonderful brothers here on HealthUnlocked.
mycancerstory.rocks/ do the jop tippens protocol PSA hAVE GONE DOWN DRAMTICALLY IN 3 MONTHS , need to take 3 pathway supplements could help . god bless
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