My husband was diagnosed with high grade prostate cancer in 4/06 Gleason 4+3=7 in 12/12 cores with 90 to 100% involvement of the tissue cores. His original clinical staging was T2c versus T3. PSA at that time was 6.4.
-First treatment was brachytherapy and IMRT. Undetectable PSA never reached.
-Recurrance in 2009, no spread to bones. Began ADT and continued that on and off (PSA low of 0.01) until 2018.
- Fall 2018, PSA rose to 40 and PCa found in 3 lymph nodes. Continued ADT.
- In 4/2021, bone scan showed approx 12 mets throughout thoracic skeleton (CRMPCa) out of the blue.
- In July 2021 we switched oncologists because he was only being treated with lupron and casodex and we felt the treatment wasn't aggressive enough. He was switched from casaodex to enzalutamide.
-Feb. 2022, he had spine surgery to address a met that had escaped the vertebrae. Recovered like a champ,
-Feb/Mar 2022 had 3 sessions of radiation,
- Mar 2022 began docetaxel which was stopped after 3 sessions because PSA and alkaline phospatase were rising.
-April 2022 switched to cabizitaxel and stopped after 3 sessions (7/13) for the same reason.
He is 7 weeks out from his last chemo session and has been experiencing significant lumbar pain (onc says mets, spine doc says possibly degenerative disc disease - but the pain is constant now so likely mets) leading to vomitting, then to deydration, then to kidney failure, to hospitalization (small lacunar infarcts found on the MRI and now a liver lesion they think is PCa) and 4 days of torture by the neuro team looking for stroke, afib, and a number of other things. Since discharge on 8/25 he has continued to decline rapidly.
For a man who was still rowing and exercising 3-4 times a week 4-5 weeks ago, he is increasingly weak, sleeping much more, has lost his appetite and is vomiting daily (We have been together 32 years and I think he has vomitted 2 times as long as I have known him!). He can walk about 0.1 mi now and then is in pain and needs to rest.
PSMA scan this week showed very little PSMA activity so our follow up with the oncologist was rough. He said if we do nothing, the average time left is 9-12 months and followed it up with the fact that my husband is not a statistic. We know that and have always been extremely optimistic, but things aren't looking good right now. He is proposing carboplatin and possibly immunotherapy if that doesn't work but also counsuled my husband to consider how much he wants to put his body through since none of us have seen him this weak. He turns 75 on Thursday, but presented much more like a 60 year old even 2 months ago. They are also running a DNA blood testing (he was negative for the standard mutations in 2019) to see if there are any more detailed mutations to indicate treatment options. We have a 13 year old and I work full-time, so this sudden shift from someone who has "managed" this disease so well his hard on everyone.
Sorry for the long background, but I know this group is so helpful when armed with details.
I have a few questions for the group:
1. We haven't received a good explanation for the regular vomitting. He is taking antiemetics, but they aren't keeping it at bay 100%. Is this a natural part of the decline/catabolic state or is there something we aren't seeing? No one seems too worried about it and they just want to treat it with the anti-nausea meds.
2. I worry that the carboplatin will take too much of a toll on him, but the PSA keeps rising (latest was 219 and alk phos 708). But if the cancer is what is taking the toll, it may help and slow the decline?
3. What other treatment options (allopathic or otherwise) should we be asking about?
4. Have you rebounded from this kind of physical low state that is not chemo/radiation/ADT induced and what was most helpful and supportive?
We aren't ready to give up, but I admit we are crossing some i's and dotting some t's again. We are shooting for at least 5 more years for our son which would really defy some odds, but even our son is a perfect post-PCa miracle, so we have defied odds before.
I asked about that when he had the spine surgery since it was a recent and obvious way to get some info, but the MO said they "didn't get much" which feels pretty vague. Other than the original cores in 2006, no other biopsies. What is the difference between what they find in the DNA blood test (which he explained would give them indicators for the cancer cells themselves, almost like shed cells) and a biopsy? I have not understood why they haven't done a biopsy on the lymph nodes at least.
Germline (blood or saliva tests) can only give heritable gene mutations. Biopsies of new metastasis tissue (called "somatic") can provide info as to what is occurring in his metastasis. There are also blood tests that look at circulating tumor cells, but such tests provide genomics only.
I took two blood tests, one showed tp53 and the other didn't, when I asked why I was told that one test was measuring heritable genetics and the other circulating tumor cells.
He needs direct (if possible) or liquid biopsy to do genetic, histological and IHC studies . This could help to select specific drugs such as olaparib, rucaparib, keytruda or similar and chemo with platinum compounds. It could also help to select clinical trials.
If I were in his situation I would consult with Dr Beltran at the Dana Farber in Boston:
I would find the source of the back pain, which could be causing the vomiting. If the PSMA scan didn’t show uptake there, it could be a protruding disc— even more likely if he’s a rower. I had a 5mm protrusion at L5 and rehab’d it successfully five years ago.
If he has a met to the liver, probably the next best treatment is Lu-177. Search on that— many good posts on this site.
Didn’t see Zytiga mentioned. Also if PSA is low, your next question to the MO should be if it’s neuroenocrine. Very best to you… Tim
I did ask about BAT and the oncologist is willing to try it after carboplatin. He did warn that it can sometimes induce a signficant pain flare. We are having trouble managing pain right now as it is.
I would use someone that has a lot of Bat experience. Probably someone who has worked with the Denemead trials. There are many, including Sartor at Tulane.
There is a lot of knowledge and intuition they get from doing it that hasn't yet been formally written up.
Or I would at least consult with them.
Asking a doc to do something they don't normally do is not a recipe for good results or encouragement to choose it as an option. Actually you can say the same for non-medical experts and subjects as well.
For nausea and loss of appetite medical marijuana is of great benefit. The THC will also help fight pain. If you get a variety with CBD, or just CBD oil on its own, will help with anxiety and feelings of well-being.
As for the lower back, I have to agree that PT is very beneficial. I was having a terrible time with back pain and headaches that all resolved after a couple of months of PT. I still do the exercises 3x a week to keep my back strong as I have lots of mets in my spine.
Here is the best concise description (click image for full description).. Note it is from May and the PSMA PET from last week also identified hypoattenuating hepatic lesions which had the highest FDG avidity of all his metastases. But not enough for Lu-177 treatment.
Dear Aixen, I am not that knowledgeable as many of our friends that have have answered, but if it's lower back pain, you might want to look into the McGill 3, in any of its versions if your husband can hack it. I had some serious problems in my lower back, years of wear and tear, rugby, accidents plus PCa pain got intolerable at one point, and I am exercising out of it with five minutes of very simple exercises every morning. You might want to lok into it, the Physiotherapists know McGill since he is like the Bible for lower back pain, Lots of youtube videos of his conferences and examples of exercises. youtube.com/watch?v=IyGaKuS...
He is being treated at Duke, and we feel like his treatment has been appropriately aggressive over the last year. They are processing a Guardian 360 test for circulating tumors now. And when they took a portion of a tumor that had spread from T5 in Feb, they said they “didn’t get anything” from it. So I need to be asking more questions about what that meant. If his back is opened up, one would think that was a prime opportunity to get a biopsy.
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RUNNING OUT OF OPTIONS
PSA 199.46 on 8th Sep started taking Enzultamide PSA 455.160 today What options we have now?
Is Pluvicto worth pursuing?
Radiation or operation with mets and beginning ADT only once symptoms arise?
