An update on my husband’s treatment and subsequent results so far.
Diagnosed March 2022 with lymph nodes and bone metastases throughout the body. PSA of 1120. Late diagnosis due to NHS incompetence, so feeing truly rough. Told too late for surgery and too ill for chemo.
Seven months of Prostap and Apalutamide, along with twenty sessions of de-bulking EBRT to the prostate in August (through private health care) and his PSA has dropped gradually to 0.8.
His CT scan last week showed ‘significant’ improvement, with lymph nodes virtually undetectable and all the bone mets now being clearly replaced with healthy new tissue. Even the oncologist was impressed!
We know there is likely to be a bumpy road ahead, but we see this as a big win, and the fact that his pain, urinary issues, fatigue etc. are so much improved is the best reward of all.
Thank you all out there for keeping it real for me on this journey. I love the holiday photos, recipes and light hearted jokes, they really help to normalise things for me!
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Sailing-Todd
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Apalutamide seems to work well. I heard of a case where the patient erroneously got six months of ADT plus Apalutamide before surgery. When the surgery was done after that, the pathology showed no cancer in the prostate anymore.
Hi Pickleballplayer, his hip is good thanks. They did a total replacement. The metal is nearly all the way down to his knee! Took them five hours and seven transfusions. They also radiated the hip to reduce the burden.
Derby born and bread, perhaps my prose is down to spending so long on this site! 😄
So true. In our case ‘chasing the tail’ of the PCA seems to fit too. My parents were both in the RAF so perhaps they brought some international colloquialisms home with them🙃
hi sailing-Todd …. as someone else has already said, great news moving into the holidays. Both you and your husband have had a rough road if it, “ both “ of you deserve this nice break. The inherent upbeat QOL aspects are many, ….family, holidays ( maybe on the water ) , road trip, shopping to reward yourselves, …. Just quiet evening times beside the fireplace ….with soft music , a glass of wine , …. enjoying the love and closeness with each other and the newfound appreciation of life that you both have. How good is that !!! For people like us,…. times like this can be elusive, I hope you guys are able to enjoy it to the max.
Thank you Kaliber. Funnily enough the Doc keeps telling us to go on holiday, so much so that I was beginning to think he has shares in the holiday industry! Then I thought he was try to get us to make some memories while we could, gulp. Then I decided I was over thinking it. We do have a weekend booked with the whole family in Stratford on Avon. We are aiming to know more about Shakespeare when we leave than when we arrive, but I think that the mediaeval accommodation and dining experience we have booked is the primary draw 😄.
yes yes .. that sounds like great fun … your doctor is right. You should post pictures of your trip, accommodations, etc … might encourage ( prod yayahahahaya ) some others to lighten up, quit wringing their hands and get out and enjoy some QOL experiences. I’ve never yet heard anyone on here say they didn’t love getting out for QOL with family. Taking your mind off “ things “ is a godsend. Fun time with your loving guy priceless.
Thanks Tall_Allen. He was left to deteriorate for so long that he simply wasn’t fit enough. He had lost three stone in weight and his bloods were in a very bad way.
His oncologist is a Primary Investigator in a number of trials and appears to agree with the Prostate Cancer UK website (see photo). I imagine that now he is much improved chemo will be on the list for the future.
There was just a new trial that showed that chemo+enzalutamide will continue to work even after enzalutamide fails. I would guess that the same would be true after apalutamide.
That's really encouraging to hear. I've just started my journey having been diagnosed in April 2022 already with several bone mets. I'm on NHS-only care so on Prostap (4 months) and Enzalutamide (just 2 weeks). So far, my PSA has dropped from 13 to 0.99 so looking good but I still get some jip from a couple of the bone mets.
We are told that debulking the prostate after the PCa has metastised is fruitless so I'm wondering how much that has helped your husband? Also, hoping that Enza (for me) is as effective as Apa has been for him.
Hi Benkaymel. My husband was Gleason 10 with a de novo (pre-treatment) neuroendocrine element, so whether that is why I am not sure. I gather that de-bulking the prostate is a bit here nor there, but his oncologist is a Primary Investigator on a number of trials and seems to think that even in the last few months there has been some evidence that it may help. Whether it is aiming for a local or general reduction in progression I’m also not sure.
His side effects were limited and appear to have resolved quickly but I believe they can recur a year or two later.
My RO took ‘Stampede trial type’ basic scans when my distant mets were first diagnosed and based on those she said debunking the prostate with Radiotherapy would be on the plan after I was settled on systemic HT as Stampede showed it was well worth it for a subset of patients to which I belonged. To me it seemed a no brainer. I have to ge fair thrown the kitchen sink at it so beyond SOC but it was after the radiation to prostate and Pelvis that I finally dropped to undertectable.
Month 5 undetectable for me after 7 months of treatment and now on Degarelix and Apalutamide.
I have been offered the OVM-200 phase 1 cancer vaccine ( subject to bone scan) but unsure as yet if I will take it. It’s running in 6 hospitals now in the UK for 3 cancer types and is a tiny ‘first in human’trial.
No regrets getting the prostate/ pelvic area irradiated as I am in a good place now but aware of micro mets being the big ‘next issue’.
it was to do with the number of distant mets but had to be visible on basic scans as opposed to advanced PSMA scans. I had 6 distant bone mets on PSMA scans last Nov but only 1 visible on basic ‘Stampede trial type’ scan.
My RBC is a bit low but MO says it’s normal for someone on HT. All my side effects are HT related it seems.
I also had a very non standard 2 x brachytherapy boost after my 20 VMAT sessions. My London MO was not supportive of that but I’m totally continent etc.
Thanks, I am "high volume" on a standard CT scan. Most mets are very small but there are a lot plus 3 large ones so I think I'm a different category to you unfortunately.
Good to hear that you had no continence problems from the RT 👍
I think about this situation a lot where one has a good response to the initial therapy when starting from behind the power curve so to say. My question is there a role for PSMA PET/CT and if positive then LU177 and or AC225 used in a "mop up" fashion. I hope you response remains positive.
It is amazing and encouraging story, I am currently on Zytiga and Lupron, my PSA rises to 0.4 after 3.5 years, I wish that Prostap and Apalutamide, along with de-bulking EBRT to the prostate would work for me, bring my PSA down
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Advanced prostate cancer to lymph nodes in chest and neck area. 
Is another MRI needed? 
Is Zytiga working for my Significant other?
Undetectable PSA with bone lesions? 
