New Developments in My Husband's PCA Journey

[103532]

Hello, I wanted to provide an update on my husband's progression and, hopefully, some of you may have some knowledge to share or have a similar profile. His psa has risen from <0.04 since RP for Stage 3b to 0.06 in 9/23. A recheck a week later showed a rise to 0.1. This was followed by a drop to <.04 a week later followed by another <.04 the following week. We thought we were in the clear, but were shocked to see his psa rose to .16 a month later (11/9), A PSMA Pet Scan revealed small radiotracer activity in the lower abdominal/pelvic area lymph nodes of periaortal caval, aortic caval, common illac and retrocaval node. The largest SUV max was 10.4 in the retrocaval node although the node is not enlarged. This is considered by Yale to be stage M1A. A repeat psa on 12/5/23 revealed his psa had risen to .273 (so a definite biochemical occurence).My husband's surgical oncologist at Yale immediately referred him to a Medical Oncologist who started him on Casodex followed by Lupron two weeks later. This was immediately followed by Zytiga with 5 mg prednisone. He recommends this ADT treatment until it fails in approximately three years. We consulted with two radiation oncologists (one in Hartford and one at Yale who specialize in Salvage RT for biochemical recurrence of prostate cancer. Both said it would be feasible to radiate the pelvis and extend the field to the affected nodes using 70 gy in 39 treatments. He is set to be CT mapped in February with a start date for radiation at the end of February. They want to proceed with curative intent, although we have been cautioned by our Medical Oncologist that this may bring many side effects without the benefit of a cure. If we can stall or delay progression with the hopes of my husband having a durable remission or even the potential to take a break from ADT, then we deemed it worth it. We are visiting Memorial Sloan Kettering tomorrow to get expert opinions on our treatment plan and their take on the SBRT radiation (Stampede trial) . I am also wondering if radiation is not the most optimal treatment, then why not add a 6 week cycle of Docetaxel to the mix of ADT.? This would be considered triplet therapy (Stampede trial). His current medical oncologist at Yale is against chemo at this time because he is considered low burden, early metastatic. Yet, I need to ascertain if the chemo would be more effective on the hormone specific cancer rather than waiting for it to mutate to MCRPC. That is another question, I will be asking Sloan Kettering about. Finally, his inflammation markers are very high, and these came up at the same time as his psa began to rise. He has very high RA factors, high CRP and granulocytes. As our son has Sarcoidosis in remission, I will be inquiring if these autoimmune findings could cause a false positive psma uptake on the scan. With his rising psa, it is doubtful. We will meet with Memorial Sloan Kettering tomorrow followed by a meeting with his oncologist at Yale next week. I will keep you posted.

Stephanie

[TylexGP]

Hi Stephanie, You are doing all the right things regarding asking good questions and being treated at a center of excellence at Yale as well as seeking another opinion at MSK. I was Diagnosed at Hartford Health and went to MSK for treatment( please se my Bio). I think Salvage RT makes sense but that is my personal opinion. I wish you and your husband well as you seek additional opinions and start your next steps in this journey which is very much a marathon.

[103532 in reply to TylexGP]

Thanks Tyler! I read your bio and, even though you had a lot of high risk features, your psa is currently doing well and I was relieved that there is no evidence of cancer in your bladder. It gave me a lot of hope. My husband was relieved to hear you were able to get off the ADT as well. I pray for your continued treatment success!! Thanks for sharing.

Stephanie

[vintage42]

In 2021 at age 78 I had PSA of 7.79 and was Gleason 3+4=7 with perineural invasion. I had IMRT for the prostate without ADT. In 2023 I had BC recurrence, appearing on a PSMA scan as lesion remaining in prostate and new lesion in one pelvic node. I then had IMRT to that node, including the whole pelvis for undetected nodes. PSA dipped and rose, so a second PSMA scan showed the lesion in prostate growing, lesion in pelvic node shrinking, but new lesion in one abdominal node. I started the ADT Orgovix (relugolix) a month ago, and plan to add the ARSI Nubeqa (darolutamide) for Doublet Tx.

I have had no side effects from the two radiations or the Orgovyx. At 81 I think I am too old to endure the side effects of adding chemo Taxotere (docetaxel) for Triplet Tx. And salvage options for the prostate are too risky, and not prescribed once metastasis had occurred.

[103532]

Thank you for sharing that! I hope the doublet therapy works well.!!!!!

[dhccpa]

I always wonder why an oncologist would tell a patient that ADT plus AA and pred will fail in a certain time, like three years. Some guys here have been on it far longer. I've been on Lupron only for five years now; I haven't even had the second level, like AA, though that could change at any time.

Hang in there! He certainly has a great resource in you.

[Radtech40 in reply to dhccpa]

I agree with why tell someone when something will fail. Each time my dad went on something new, his med onc would say, you'll probably get about 6 months out of this or 9 out of this, etc. Dad went 2 years on casodex, lupron, 2 years on nothing after that because he had a withdrawal response, then one met became active so just radiation on that one and he didnt start xtandi until last year and he was diagnosed in 2016 with stage 4 and a psa of 1260. Everyone is different and some get 2- 5-7 years out of something, I find the 'textbook' average time frames dont need to be told, theyre not encouraging to hear.

[dhccpa in reply to Radtech40]

Exactly

[103532]

It’s reassuring to know that so many are doing well for long periods of time even though advanced. This site provides a lot of experiences and hope.

[Tall_Allen]

Chemo is only effective on rapidly growing cells. Neither ARASENS nor PEACE1 included significant numbers of M1a patients, so chemo is unwarranted.

Radiation+hormone therapy may be curative if radiation is given up to the aortic bifurcation and hormone therapy is sufficiently intensive.

[103532]

Thanks Tall _Allen. I really appreciate it and respect your advice you are extremely knowlegeable.

[j-o-h-n]

To: ten-thirty five-thirty two,

Been fighting the furry little bastards for 21 years now. Was on Casodex and Lupron for many many years......(with Casodex on and off a few times). Last April my M.O. at Sloan Kettering replaced the Casodex with Nubeqa which drove down my Psa (0.72 ) to the lowest it's been in 5/6 years. So you see the Casodex/Lupron combination did not fail in your Doctor's guesstimate time of 3 years.

Anyway for your benefit, I thought I would post my time worn out post about frying of the bed. Here it is:

I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/05/2024 8:16 PM EST

[Radtech40 in reply to j-o-h-n]

My brother had the spaceOAR Hydrogel when he had his 45 radiation treatments to the prostate last year to protect the rectum from radiation, it was a quick outpatient procedure.

[103532]

Thanks for sharing your experience with this John. It is very helpful. I will definitely inquire about the Space Oar to protect his organs. I actually asked the first radiation oncologist through Hartford Health, and he said it would not be necessary since his prostate was already surgically removed, We have decided to have his radiation at Yale and have been happy with their care and quick responses. I will definitely message the rad. onc. to inquire if this can be implemented even without a prostate. Enjoy the weekend!

Stephanie

[tn12 in reply to 103532]

How did the appointment go yesterday?

[103532 in reply to tn12]

Hi Tn12,

It went extremely well. I just made a new post summarizing everything. The main takeaway is that we are on the correct ADT (Lupron/Zytiga/pred), and that adding in radiating to the PSMA avid nodes may even be curative. At the least, a very long remission. I am still slightly skeptical about radiating the whole pelvis when there is nothing visualized there or in the prostate bed, but I have to trust their expert opinion. Thanks for checking in, and I hope your husband continues to do well!!

[tn12 in reply to 103532]

That's good news. I wish him success and a long remission. Hopefully the SE are well tolerated. Please write updates often. Thanks, my husband has his 25 month post PSA next week. It's been 0.02 since RP.

[Radtech40 in reply to 103532]

Maybe they think radiating the whole pelvis will take care of any micro cells in the lymphnodes, they did this with my dad when he had only one pelvic met, the ins denied individual localized radiation so our only choice was whole pelvic radation, it did knock the psa down for a year.

[103532 in reply to Radtech40]

I think that is their thought. He definitely qualifies for Salvage Radiation with his outcome, but the plan is to extend the radiation to the avid nodes in lower abdomen. I pray they sufficiently target them. We were told no Space Oar because that would go in between the colon and prostate, but his prostate has been removed. I plan to ask about it again though.