Hi Everyone , I don’t really come on here much to write or ask questions but I read posts everyday !
My Husband John age 58 was diagnosed in July 2021 Dx PSA 122 Gleason score 9 unfortunately it was already out of his prostate and in surrounding areas they put him straight on Erleada + zoladex + xgeva he went aslong quite nicely for about a year then PSA began to rise so they gave him another PSMA scan and it showed complete resolution in some areas and partial in others and new lesions ?
so he had radiation end of last year December , his PSA did not go to Nadir as I thought it would and in fact after a couple of months began to rise again .so in March they did another scan and there were a couple of spots so they radiated them too in may .we went away for 3 months to Cyprus and before we left he had a PSA test and it came back at 9 our oncologist said she didn’t know if it was going up or down because he hadn’t had a PSA test before the radiation . But she said he needed to do a test when we were in Cyprus 6 weeks in We got the results and it had gone up to 13.5
We went back home to Dubai 6 weeks later and the day we arrived he had to have another PSA and results were 38 so doubling 6 weeks .
While we were away John’s whole leg swelled up including groin pubic area we went to get it checked out it wasn’t DVT they said it might lymphodema .anyway to cut a long story short we went back to our oncologist who ordered PSMA scan and there is cancer progression in ribs lymph nodes so now she wants to do Lu -177 .
Im freaking out to be honest I am so worried about him can this treatment help..? him has anybody gone through all these treatments ?
it feels like there is not many treatments left Is he now castrate resistant ? Should I be asking more questions?
im at a loss really the treatments here although fairly good ,there are still things they will not do like triplet therapy which we asked for in the beginning . He is slightly anemic but the rest of his blood work is all good ..
Should he be having this now or something else ?
Any advise would be greatly appreciated
Thank you .
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palser1
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Without going all of my details, my cancer began to spread into lymph nodes this past Spring. there was enough swelling in some nodes in illiac area that femoral vein in my right leg was partially occluded. Right leg swelled and was painful, walking became difficult, Drs. couldn't find cause. Finally after long flight and swelling that wouldn't go down with elevation and rest, sought further medical attention and they found a large blood clot. The removed it with a special procedure and put in a stent. Swelling and pain began to get better immediately.
Had already had an infusion of Actinium(similar to Lu-177, but alpha emitter(can have better effect when cancer has reached bones), where LU radiation is beta). PSA began to go down immediately. After the second infusion which was LU-177, PSA had dropped from 180 to 1.3 in about 6 weeks. Also began Orgovyx at same time as radioligands, Dr. said it was to increase PSMA expression. This would make the radioligand treatment work better. So far my experience with Lu-177 has been positive. I am going for a third treatment and then will pause, do a PSMA scan to assess where cancer is, before deciding to go on with further treatment.
If so he is on Erleada and zoladex and xgeva his SE’s are fine he gets tired but nothing other than that, although he cannot take the full dose of 240mg he takes 160mg of Erleada as the SE’s of the full dose were horrific for him .
Or were you asking about Actinium? Really no side effects to speak of aside from fatigue and those normally associated when following instructions to drink 2 1/2 to 3 liters of water a day.
They have done a scan on groin and surrounding area in pelvis and found large lymph nodes I think that’s the cancer so they have found the problem it’s what they can do for it .
I hope so too! If swelling in leg persists, they can check for blood clots with ultrasound-be sure they go high enough toward abdomen, that was the problem I ran into. Most blood clots will form in lower leg and that is often where first examination is focused. With me, once discovered it took an Inari procedure to remove the clot and then a stent could be put in to resolve any future problems before cancer was controlled/eliminated. Also am on Elequis, a blood thinner.
Yes I will be sure , but to be fair that’s what they done an ultra sound they did his groin pubis arrears and as most of the swelling is upper part of his leg even into his private parts they focused a lot there then eventually went to the bottom of his leg . We are going to see the dr Wednesday for results fingers crossed they can help him . Thank you for everything .
My hubby was diagnosed 12 months ago - he was 59yo, G9, N0, M0, T3b - he’s had triple treatment, still has another 2 years of zoladex to complete but PSA now undetectable. Please push immediately for triple.
I've been on zoladex for about two and a half years, that's all the treatment I have taken , i get an injection every three months, and it has only risen once after a 9 month break , and after new injection PSA has gone back to 2.0 Radiation may be a good thing , but I'm not a believer in it
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