Haven’t posted for a while about Mr. Spouse21 until I had some data as his PSA began to tick up a few months ago. Last week a PET FDG confirmed recent bone and CT scans. Summary of main results: Multiple tracer avid osseous metastases. Most prominent involving right margin of T12.
Mr.Spouse was high Gleason, low PSA (3.38) at dx, 100% cores GL 9 with some 8s. Except for one brief uptick in ALP (63) in 2018, blood tests are always within normal range. Latest ALP a couple weeks ago was 43. Go figger since he now has a “hot” tumor on T12 spine, and multiple other small ones lit up.
PSAs post-chemo 2019-2023: 0.14-0.36 (earlier PSAs back to 2014 in profile)
6/6/23: 0.14
8/29/23: 0.21
11/29/23: 0.56
2/21/24: 1.18 (missing Jan. #)
3/26/24 1.76 1 mo. later (doubling time 3 months)
Testosterone: <3 (L)
Background of who he is and how he handled his PCa.
Mr. Spouse will be 80 in July. Yup, he's a Cancer! He’s had a nearly 10-year run with the standard treatments available in 2014. The results: two 4+ year periods of fairly stable disease with decent quality of life during both 4-year periods. We took full advantage of them: full family life; travels; lots of physical activities and adventures including Mr. S’s epic bike rides every summer I’ve written about on HU before.
We front loaded all the PCa running around to big cancer centers in the first year. After that, Mr. Spouse carried out treatment plans that accounted for his early and late comorbidities (four pacemakers so no MRIs); no RALP (early 2014 open abdominal appendectomy when he lost 6” of intestine, a factor that contributed to radiation proctitis later on, which is managed. ) Some neuropathy from chemo. He’s nearly 80 now, not 70, so there are the comorbidities of age + heavy, heavy treatment: total years of Lupron/Eligard (7 yrs and current); 9 weeks of radiation; 10 rounds of chemo; 3 yrs of Xgeva (started 6- month schedule recently). Failed Zytiga. It’s that Paul McCartney line in “Yesterday” “I’m not half the man I used to be.” (Only he'll always be the whole man to me.)
So what to do next?
Our local oncologist first floated the possibility of spot radiation of that T12 tumor. Mr. Spouse has vague, sporadic pains in that region but nothing acute so didn’t seem much interested right then. Then the onc said she could make arrangements with our pre-pandemic oncologist at Mass General in Boston to discuss possibility of Pluvicto. (local hospital is a satellite of MGH 90 miles away.) We have an appt. with “the big gun” on Monday and will have a lot of questions. One I’d like to float by the HU community first is the following in case it’s a stupid idea.
What about hitting the T12 tumor with spot radiation soon to slow the thing down for several months (hopefully) and start Pluvicto in late summer so Mr. S21 can better enjoy the summer in case Pluvicto proves to be debilitating? (We’re not wowed by some of the Pluvicto outcomes on HU in the last few months among older guys who were also heavily treated with ADT. If there are some 75 year old+ Pluvicto guys out there, or their caregivers, with good outcomes, please weigh in to give us some encouragement. Pluvicto has a short track record and so-so 30% success rate.)
Quality of life has driven several treatment decisions along the way. In 2019, we got the MGH onc’s green light to travel overseas for a month ahead of chemo, for example. Mr. Spouse tweaked start dates of ADT so he could enjoy some special family times. For us, QQL has sometimes been more of a priority than timing. I can’t tell from HU men’s accounts how fast their Pluvicto treatments needed to start—seems like a long time for those who went to Germany, India, etc. We also have a concern about spot radiation being too much radiation due to current proctitis and possible Pluvicto treatment right after.
Just wondering what the great minds think about spot radiating the T12 tumor to keep it from progressing and pushing off Pluvicto until late summer. Any thoughts?
Thanks for reading.
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spouse21
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I am curious what others have to say- my dad is failing xtandi by his psa going up scans r stable- but next scan is Tuesday so I'm worried - wondering what's next and how side effects are
They may be able to hit his T12 without causing further proctitis- ask his RO. Why did he get an FDG PET scan instead of a PSMA PET scan? IMO he should have both before he tries Pluvicto.
Thanks, TA. The FDG is what was available at local hospital. I'm sure MGH will order PSMA PET if/when he's advised to get Pluvicto. We'll ask on Monday when we meet with MGH Boston oncologist. We'll have to set up an RO appt. if it seems like a good idea to get spot radition on T12 soon
A well chosen fractionation scheme which uses lower gr per fraction can minimize risk of proctitis. e.g. a total dose of 27 gr in 4or 5 equal fractions at T 12 met. . He can get 4 to 6 months or hopefully more with beam radiation (spot radiation) Pluvicto gives on average 4 to 5months in heavily pre treated men. (vision trial)
Your situation is similar to our's so I thought I should let you know what we've just done.
Background : Husband is also 80 (soon to be 81). He's fit and active with no comorbidities, thankfully, except somewhat high blood pressure from ADT.
History is in bio, but briefly:
Dx : Feb 2018. PSA : 168
(We had no idea he had PC - they stopped doing PSA tests in 2012 !! - wrong move)
Tx : Feb 2018 : started Firmagon [Degaralix] / 6 rounds Docetaxel
PSA dropped to .4 - .6 & stayed there for 3 years, then rose to about 1 during 2020
June 2020 : PSMA PET scan showed 4 small mets
Sept 2020 : added Zytiga + Pred (switched to Dexa mid 2023)
PSA dropped again to .3 - .6 & stayed there for 3 years, then rose to about 1 in early 2024
All blood readings very normal for the whole 6 years [ALP, LDH, Albumin, blood ratios] except haemoglobin always a bit below range due to ADT.
Feb 2024 : PSMA PET scan showed some radiographic progression in mets.
Seemed like it was time to change / add a different treatment. We investigated Lu 177 and expected to start it (we had no qualms about that), but the theranostic MO suggested SBRT to the 3 most avid mets as a better first option. That came as a bit of a pleasant surprise, as I had been suggesting it to various MOs for about 3 years with no luck.
The SBRT appointments were quickly organised and my husband had the treatment done last week. First there was a planning session which included a CT scan to precisely locate the mets. 4 days later was the first treatment, followed by a second, 2 days later. Only 2 required. Each took about 40 minutes. No side effects at all. We flew home the following evening (about 4000 km) and the next day my husband was out on the tractor slashing paddocks. He says it was 'a piece of cake'.
Those mets should be totally destroyed by the treatment. Now we keep an eye on his PSA and when it starts to go up again, he'll have another PSMA PET scan. We've been advised that he can then have the SBRT repeated for other mets and then, later still, probably start Lu 177.
My way of thinking about this, is that we are attempting to extend each stage of treatment for as long as possible, not curing the cancer but making it more of a chronic condition. And the longer we do that, the more likely there will be new treatments that become available to continue the process and who knows, maybe a cure !
With only one avid met in T12, it seems to me a no-brainer to have it treated with SBRT, especially if it is causing some pain. The treatment will kill the cancer and stop the pain.
Like you, COVID not withstanding, we have continued to travel since Dx. Travel has been an essential part of our life for the 56+ years we've been married. So over the past 6 years since Dx, we've done a 2 month self-drive trip in Southern Africa, a 1 month self-drive trip in East Africa, a I month self-drive trip in Zambia, a 2 month self-drive trip around Eastern Europe and the Baltic countries, a 2 week snorkelling trip in Indonesia, 2 small ship cruises in the western South Pacific and several trips to various parts of Australia. [We live in OZ].
Please, don't think this is some sort of bragging. It isn't. It's just the sort of thing we've always done, and as long as we're able to, we always will. It's core to who we are and we are currently planning more trips for this year and dreaming about ones for next year. We're chronic optimists, which incidentally, I think helps with the PC.
We do try and time our trips around treatments, but when we go for longer than 4 weeks, we just take the meds with us and my husband injects the Firmagon himself.
So that's our journey. I hope yours continues to be a good one.
Thank you so very much, Gail. This is incredibly helpful and will run it by Mr. Spouse along with the other comments. I appreciate your taking the time to outline the plan you followed. You should be bragging! His T12 is the most avid, and there are others that are much smaller, so he does have more mets than your husband had.
I would love to imagine that Mr. Spouse will be out on his "tractor" er, bike this summer after treatments that may make that possible. The spot radiation was the first thing our local oncologist suggested, but somehow we moved on to Pluvicto without discussing it further--need to get back to that with the Boston oncologist. Again, deep appreciation for your input. I hope your husband's experience with this stage of his treatment carries him along for a good long time. All the best to you on PCa journey and the actual travel journeys you've been able to take.
We can’t speak to spot radiation, but there are a number of Pluvicto success stories on the site. It wasn’t a cure for my hubby, but he has had a good response with minimal side effects. He’s willing to do another round of it if necessary. His dr says his other patients have been a 50-50 success. So we’re grateful for this treatment.
I don't know much about Pluvicto except from this forum, but with such a supportive person in his corner, I'm sure his prospects are much improved. Carry on!
I’ve never been irradiated but my thoughts are that if random tumour cells have migrated up the venous trunk where does it end. Having low Alp is mysterious coupled with the low onset PSA. Has he had genetics done as knowing something about etiology might help…I’m a believer that genetic based treatments will catch up with same testing. Got a ways to go in that clinical field. I’m being tested surprisingly after out of the blue five years on, a research team reached out asking to use my originally donated samples.
I have taken many reported bi effective treatments along the way expressly cholera vaccine Dukarol as it was reported in retrospective studies as extending survival. Also Guardasil as it has been effective combating papillomas which haven’t been ruled out as a PC treatment. My experiences have been fairly narrow using only Eligard and a 4.5 yr hitch with Zytiga which I’ve terminated last year.
Hubby’s spinal tumour Rads should be used palliatively imho if anything for possible future impingement. My wife died with runnaway breast cancer but had a few weeks relief from an impingement in her final days from Rads, poor girl.
Cancer treats us so randomely cruelly and I hope your darling husband finds a new fruitful path out of the grips of PC.
Thank you for responding, jboomi, and for your suggestions. I'm sorry about your wife's suffering and death. These two diseases, breast and PCa have taken away too many people.
Yes, the high Gleason, low PSA has been a mystery from the beginning. He's had two big genetic tests at Mass General but nothing that provided insight into the etiology. The ALP has always been low, including now with a lot of mets and one bigger concerning one. It's reassuring to get support for possible radiation on the biggie and consider delaying Pluvicto.
I can’t reply about the spot radiation but I can tell you I’ve had 5 of the planned 6 Pluvicto treatments and the latest radiology report says that, compared to the first post-Pluvicto scan, the mets in my lungs have resolved. Praise the Lord and pass the Pluvicto!!
So my question about doing spot radiation of that one big met on T12 wasn't stupid at all. Our Mass General oncologist brought it up himself before we did. He found Mr. Spouse's post chemo, nearly five-year endurance "remarkable,” “highly unusual,” “extraordinary.” He repeated those words multiple times. Good going Mr. Spouse21.
He then interpreted the scans, which he put up on screen, and said that since Mr. Spouse does have that very lit up met on T12, the best way to handle it is to zap it with radiation. The other mets were so faint, Pluvicto would be overkill and “it’s not the moment” for that level of systemic treatment. He added that when the cancer progresses on a PMSA scan after the spot radiation, he might recommend cabazitaxel since Mr. Spouse21 was a “super chemo responder” or Pluvicto later on.
So that was our appointment, so we feel "good" about the recommendation. When someone has advanced prostate cancer that has metasticized, "good" is relative to that--not like "Good, you're cured."
I can't thank the HU community enough for responding with such encouragement and solid advice. In this case, a very top gun Mass General oncologist agrees with the HU community about the next step.
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