I’m writing on behalf of my Dad (77 years of age). Diagnosed with prostate cancer in November 2023 however, turned down treatment as his wife (my Mam) was in hospital.
We found out recently he had cancer and with some encouragement he’s started treatment. They started him on Casodex injections and the plan was to do introduce an ADPRI drug and radio therapy.
Recent scan results have confirmed the spread of cancer to the pelvis area but luckily not the spine. (stage 4 I’m told)
We went to the hospital today and we have been advised that he will start enzalutamide but no radiotherapy. I was curious to know why we can’t tackle the cancer with both radiotherapy and the drug and the consultant who is a medical oncologist couldn’t fully answer me. The consultant (medical oncologist) however, would discuss with the radiation oncologist.
Dad is relatively active, walking and takes care of my mam. Dad does have a pace maker therefore, needs to be careful on this drug.
Has anyone any experience on this drug?
Are there any things my Dad should be doing?
Appreciate any feedback of what to expect or anything that I can do to help him
Written by
Castaway2024___
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when my father was diagnosized at the age of 65, he was in a similar situation. He had PSA of 135, GS 8(4+4), metastasis in 2 pelvic bones and 2 pelvic lymph nodes. He started on ADT (like Casodex) and the PSA went almost to zero after a several months. At that time he was offered a whole-pelvis-RT, but due to a bad luck he didn't accept it.
Over the years metastases developed to the spine and outside the pelvis. Plus the main tumor in prostate got large so he went on RT anyway to shrink the tumor. It a was prostate-only-RT, not whole-pelvis-RT because there are metastases outside the pelvis. When we talked about it recently, he told me that if he could take back time, he would accept the whole-pelvis-RT.
To know if RT could be good for your father, please check that your father is "oligometastatic".: Definition on Tall_Allen's blog: "that high volume was arbitrarily defined as visceral metastases or 4 or more bone mets with at least one beyond the pelvis or vertebrae; low volume is anything less than that (often referred to as oligometastatic)." Source: prostatecancer.news/search?...
From what you've written, I think he's oligometastatic.
There on the blog you may also read more about RT to prostate if metastasis are present, which called "debulking".
Why your dad wasn't offered RT? Maybe the doctors follow NCCN guidelines. NCCN guidelines has as a preffered regime (= category 1) of ADT+ARPI but without RT. ADT+Xtandi+EBRT is category 2B. See attached picture. NCCN guidelines are accessible after creating a free account: nccn.org/professionals/phys...
About Xtandi (enzalutamide):
My father has been on Xtandi for almost 2 years, he has no problems with it except fatigue, he takes the normal dosage 4x40mg but started with a lower dosage to "test it".
My father has a high blood pressure. He takes telmisartan+amlodipine combination, and since taking Xtandi he takes blood pressure pills that have more amlodipine. Xtandi probably blocks the amlodipine part.
I recommend to check blood pressure 1 month, 3 months, 6 months after starting Xtandi.
We live in the EU, the local prescribing label also says to be cautious when taking Paracetamol (acetaminophen).
We don't have experience with pacemaker and Xtandi.
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Please don't be stressed and remember that unlike other types of cancers, "Prostate cancer is very slow growing." Source Tall_Allen's blog: prostatecancer.news/search/...
Wishing your dad many healthy years ahead!
M1CSPC - EBRT is category 2B, not category 1 or 2A
To show the picture in fullscreen 1.) LeftClick on it, 2.) RightClick on the shown picture, 3.) choose "Open image in New Tab". (At least in Firefox web browser)
Though the reference is old and weak (small number of patients). So it may or may not be true. But in my father's case BP went up - maybe due to stress.
Thank you. I did not know this. Will get dad’s BP checked again just to be sure. How much did your dad’s BP rise on it. Dad takes 120 mg xtandi. One MO said 160. And another said 80 due to his age of 83 so I went with 120. For how long did your dad take lower dose before making it full ? - any reason he decided to then take the full 160 ? May I ask how old he is. Best wishes to you’ll 🤗
MO also not agree with radiations. I setup separate appointment with radiations oncologist and understand his opinion and He said I am 100% eligible for radiations oncologist. I think if you see anything on SCAN in that case radiate them make sense.
After 3 rounds of chemotherapy and radiation in late 2020 and early 2021, my hubby has been on Abiraterone (Zytiga) with low dose Prednisone since 2022. He is only taking one tablet per day and it has kept his PSA down to almost zero (0.2). Upon reading the long list of side effects of this drug is atrial fibrillation. He has already undergone cardio ablation back in April which seemed to quell the Afib for about five months. However, it is back and due to current relocation plans, he is postponing another cardio ablation until we are settled in our new city. I share this because at his last oncology appointment this past week, his NP Oncologist recommended that he take a drug holiday from the Abiraterone since it may help reduce his afib. He does not want to do that since we are moving currently so time will tell if and when he decides to continue taking Abiraterone. I hope this provides some insight.
dad’s experience mirrors mine, more or less. 6 years ago I started off with enza , Lupron and zometa. I too was told no surgery or radiation for me. My cancer had metastasized outside my abdominal cavity and surgically removing some of it , or killing it locally with radiation was pointless and had undesirable consequences as well. It had spread too much .
Greetings Castaway2024. It's a good idea to update your dear Dad's bio. A good start would be to copy and paste some of what you've posted above and add to it as you go along. All info is voluntary but it will help you/him and help us too. Keep posting cause you've come to the right place. Regards to you Dad (your Mom and to you). Thanks!!!
I use it along with Orgovyx intermittently with pcspes and have so for years with great success. The Orgovyx really pulls on me and makes me really tired and weak.
There are several ways to approach his condition where the focus is on the quality of life as I do. Xtandi is a great medicine when used appropriately.
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