Follow up with MO at Mayo for my husband, in a couple weeks, thinking of changing treatment plan

[CancerConcierge]

First off, though my husband was diagnosed with aggressive cancer in 08/2023, Gleason 9, PSA 46.6, based on MRI and PSMA PET scan, the cancer is localized. I have been posting in Advanced Prostate Cancer, given it was assumed that the cancer was systemic at diagnosis due to high PSA. But perhaps more appropriate to post on the Prostate Cancer Network site.

In fall of 2023, we decided that he would add Zytiga /prednisone for two years , based on the Stampede trial protocols for high risk PCa with PSA over 40. He is 74.

In the interim he was diagnosed with Chronic Fatigue Syndrome, an increasing Aortic Root Dilation of 4.6 cm (at 5cm surgery is a consideration), an ongoing Klebisella Pneumonaie infection over a year and a half, Radiation Proctitis with rectal bleeding and a high Cardiac Calcium score in the LAD ( the widow maker).

He was diagnosed with bladder cancer in 2020, and will have a Cystoscopy in February 2025, which if there is no evidence of cancer should be his last .

His fatigue is significant. One of the symptoms of Chronic Fatigue Syndrome, is fatigue becoming worse with physical exertion. He has been going to a gym but has to pace himself carefully or he'll be bed bound for several days afterwards. He is at risk for sarcopenia at this point.

We are increasingly thinking that he is at a higher risk of dying from heart problems than Prostate Cancer. He will have a monitoring ECHO tomorrow, and will follow up with the cardiologist the day before the MO follow up.

We are considering discussing the following with the MO in two weeks:

-Requesting the Decipher test to gives a better idea about his metastatic risk.

-Based on the results, reducing his ADT (Orgovyx) from 24 months or more, to 18 months.

-Going off of the Zytiga, titrating off the Prednisone

Any thoughts or recommendations? Would he be playing with fire to be less aggressive with treatment? We will discuss pros and cons with his providers of course.

[Tall_Allen]

FYI -the STAMPEDE high risk protocol was 3 years of ADT and 2 years of abiraterone, but I completely understand why you want to reduce that.

[CancerConcierge in reply to Tall_Allen]

Thanks for responding. On his Mayo treatment plan it was marked as two or more years of ADT...maybe their way of breaking it gently?

[T911]

Consider a consult with a Cardio Oncologist. They specialize in balancing cancer treatments with heart health. I saw one and he was able to alleviate my concerns with multiple stents and blockages.

[CancerConcierge in reply to T911]

Thanks! We will definitely look for a cardio oncologist locally. ( never heard of that specialty)

[CancerConcierge in reply to T911]

I wanted to thank you again for your recommendation. My husband is now scheduled with a cardio-oncology specialist at Mayo in January.

[T911 in reply to CancerConcierge]

That's great, mine was able to answer all my questions and address my concerns. Hope yours does the same. My regular cardiologist is also very supportive of me bringing in the extra help.

[CancerConcierge in reply to T911]

We told his cardiologist that we might get a consult at Mayo, for Cardio oncology… she seemed OK with it .. depending on how the consult goes he may switch to Mayo , since all his oncology and urology providers are there . He did decide , after seeing his MO, to go off the Abiraterone.

MO was pretty blasé about the decision … very much leaving it up to my husband . He did reiterate that my husband had metastasis at diagnosis, even though nothing showed outside of prostate on scans, due to high PSA. ( 46.6)

Hoping of course that he stays stable .

[Mascouche]

About the gym, at his age he needs a few days between sessions, especially if he trains relatively hard. Recuperating takes longer when we age, even more so on ADT. On off days he can try long ways but he should not exert himself too much.

[CancerConcierge in reply to Mascouche]

He does take several days break between gym visits...but he really doesn't train hard.

[j-o-h-n]

Tell your dear Hubby "Take it slow.... and be the flow"....

Good Luck, Good Health and Good Humor.

j-o-h-n

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

This is sage advice for ALL of us.

[SUPERHEAT12]

I was diagnosed with a Gleason of 5 + 4 more than twenty years ago. At the time I had already been diagnosed with heart disease, but I was a triathlete in great shape for my age and managed the heart disease mainly with diet and exercise. After 43 radiation sessions I became easily fatigued. I was fortunate to find Dr. Myers who prescribed a mix of medications and supplements. Still, it was many years before I regained some of my physical strength again. It seems to me, and my current Dr., that cancer is very individual. I would recommend that he takes care of the imminent danger in the heart condition. Get that under control and then push the prostate cancer out. I was so fortunate to find a Dr. who understand multiple diseases.

[j-o-h-n in reply to SUPERHEAT12]

Would you be kind enough to tell us your age? Thank you!

Good Luck, Good Health and Good Humor.

j-o-h-n

[CancerConcierge in reply to SUPERHEAT12]

Thanks for your thoughtful response!

Do you mind sharing your supplement/medicine protocols that Dr Myers put you on?

We are of course anxious about making any changes to his treatment plan, and will listen to the MO and cardiologist feedback....

[GAdrummer]

Definitely get the circulatory system issues taken care of first. My husband's cardio doctor waited almost too long (because of a collegiate national championship game conflict) to do the TAPIR procedure.

[CancerConcierge in reply to GAdrummer]

Thanks for your feedback.

I read your husband’s profile.. he has has a hard battle..I’m so sorry

[Doctorsceptic]

He has a complex set of problems - with dilated aortic root I would guess he may well have a degree of aortic valve insufficiency. This would affect exercise tolerance as you describe. CFS is a label for idiopathic fatigue but he has more than enough reason for fatigue ie heart, and sarcopenia - so to attribute fatigue to CFS seems surprising . The ECHO will tell you about his cardiac output and valve function, and I would definitely be more concerned about his cardiac state than prostate.

ADT increases cardiovascular risk although Orgovyx is said to be a bit safer. So yes a discussion about the pros and cons of continuing this is very rational. The ECHO result is needed before you have that discussion.

You have not mentioned BP, metabolic factors - lipids (especially TGs), diabetes, weight - which are all also really important in your decision making.

Not sure I have helped much but hope it does.

[CancerConcierge in reply to Doctorsceptic]

Thanks for your detailed feedback… He did have chronic fatigue symptoms before ADT and Zytiga, and before his aortic root became moderately dilated. I do agree that at this point his heart issues are contributing to increased fatigue.

When he started Zytiga, his blood pressure became elevated, he was put on BP meds , he has been off that medication for a couple months, as his BP was stabilizing…occasionally he will have BP at 140, but mostly in the 120s.

He has gained weight with the ADT, about 12 lbs, belly fat increased.

He had his ECHO yesterday…waiting for the results.

He is on low dose rosuvastatin and a baby aspirin. His lipids are good on the statin, but triglycerides were slightly elevated on his last labs, but he had eaten before the labs. He will have a fasting lab on Thursday.

[Doctorsceptic]

well done. You sound very organised!

[CancerConcierge]

Thanks !