Recently diagnosed - Stage 4 with mets

Hi Anuja, I have just a few comments to add:

Regarding post treatment PSA values, the 3-week results seem very consistent with expectations. There is no specific target...the goal is to treat, then see how low it goes, then take next steps based on the results which follow. I feel that the orchiectomy + Casodex was a good, aggressive first step...now time to monitor. I would also agree that a radiation onco is not needed at this time, as you mentioned "no symptoms" at this time. Radiation can serve different purposes for different types of cases...but for your dad's case it can help to relieve "bone pain" which may show up later.



I'd like send you an important & valuable message based on several of your comments...this is a message of love and caring. In your first post, you wrote that you "want to do everything in my power to prolong his life..." This is a quite natural first response, but as time goes by (and your dad is not facing impending demise despite his serious illness) and as you begin to more rationally face his mortality, do keep in mind that what you may want for yourself may not be the same as what he--the patient--might eventually want for his life. At age 29, mortality should not a part of your regular thoughts--I know (both of my parents were gone by my mid-20s)--but the reality is that many lethal diseases reach the point where the best win-win decisions are not always simply "prolonging his life." I can tell you that it is much better to be prepared for good doctor/patient/family discussions than to be unprepared to even confront the reality of mortality.

As I said, your dad is not facing an imminent demise, and so to help bridge to that period I'd like to recommend an outstanding book to you--one of the best I have ever read--titled "Being Mortal" by Dr Atul Gawande. This book can help you navigate some of the decision making which comes with serious diseases, and can help you to keep focused on what's best for your dad. Dr Gawande is a native of India, and some of the stories of his dad's illness and final journey will probably resonate closely with you. I strongly recommend the depth and details one gains from reading the book (2nd half of the book most closely applies to your situation), and I have given copies of the book to several of my close friends as their parents have faced their mortality...but if you'd like to "sample" the content, here is a link to a documentary (54 mins) which captures much of the tone.
https://www.pbs.org/video/frontline-being-mortal/

Good luck

Post Edited (Blackjack) : 8/5/2019 12:46:39 PM (GMT-6)

Thanks a lot mattam, wings of eagles and randyd . I took your advice and am glad that we went to the MO. He echoed your voice and asked us to switch to Abiraterone along with a corticosteroid. Said the urologist suggested what was the norm earlier, now the treatments have advanced. Said this is out first line of attack - Abiraterone should work well for 2-5 years, then we can move to other treatments - no need to worry till 2030 and smiled. Just asked dad to start taking walks as it would help. Also mentioned about some people witnessing few side effects of Abiraterone such as swelling of feet and hands, increase in Blood pressure and asked us to check the BP every week. He also advised dad to get his tooth work done (he needs a root canal to be done for one of his tooth) and then return for a shot of zometa equivalent for bone health. He also asked us to get various tests done - CBC, creatinine, Vitamin D, B12 and some other liver tests etc. Also, mentioned there is no scientific evidence for avoiding sugar and dairy, you may continue to eat healthy for your overall health but don’t forget to indulge in foods you love and continue to enjoy life 😊. When I asked mentioned that I give him powdered turmeric and fresh curry leaves , fresh mint, fresh tulsi and honey infused tea for immunity owing to flu effects prevalent in the current season - he dint say it has no scientific evidence this time around, so am going to continue to give it to him. He advised to take the Abiraterone at night before sleeping and the corticosteroid in the morning. I just hope dad does not witness any grave side effects and the medicine works for him for long even longer than 5 years mentioned by him ☺️. Any advise on which generic Zytiga is the best and how to avoid its side effects ... I am glad there is a seperate thread on Zytiga - I am going right on it . The doc just prescribed Abiraterone and said any brand should be good ...

Post Edited (givemesomesunshine) : 8/6/2019 10:12:37 AM (GMT-6)

Blackjack, I hope the PSA Drop continues for a really long time. Thanks for your book recommendation. I will surely look into it, but sometime later - the diagnosis is still sinking in - currently I m trying to look into various treatment options, alternatives, diet etc and juggling with work - and I am not sure I am mentally ready to read a book on mortality right now - I will get to it slowly.

Mattam, Thanks a lot. I would say i am lucky to have him and would love to do everything for him to a happy and comfortable life. Touch-wood, the side effects continue to remain minimum for you. We are going to start dad's Abiraterone in 3 days time, hopefully it will be effective for him . The MO said 2 tablets of 500 mg, we are getting a medicine from Glenmark and Cipla of 250 mg tablets (120 tablets - so 1 month dose). Another company Dr reddy has 500 mg tablets but you need to buy 2 months tablets - so trying to figure out what to start with - the MO has said to take it for a month and visit him then for further advice- i have read instances of people for whom abiraterone has not been suitable and given its high cost am confused whether to get the 500 mg 2 months dose or 250 mg 1 month dose as dont want to choose one now and then switch companies later on. Also, the MO does not insist on two hour gap before taking the medicine - just asked to take them before sleeping - however everywhere it says to take it on an empty stomach (2 hours) and not eat anything for 1 hour post the medicine - so am confused on that one as well.

Todd, believe me your diagnosis and treatment account was the first i read upon my dads diagnosis and it did bring in lot of hope and sunshine during a grim time. In fact, i admit to have read it again and again on multiple sites - i even remember the runaway walk Your story is one of hope. Its inspirational.

Hi Mattam,

I did re-clarify from the MO, he said there is some research which says Abiraterone can be taken with some light snacks but it needs more evidence, so currently it needs to be taken on an empty stomach - he advised taking it at bed time as normally people tend to have their dinner at 20.00-20.30 hours and sleep by 22.30 so a gap of 2 hours is generally there - and the medicine may produce some fatigue so taking it before sleeping helps many people... but my dad is an early riser - wakes up at 5.00 am for his bowel movements so tends to sleep by 21.30, so he said if he takes the medicine in the morning that would also work - 2 hours empty stomach and post eating the medicine there has to be one hour gap before you eat or drink...the prednisone has to be taken with food to avoid acidity...Also, this may help others in India- regarding the medicine brands - there are just two manufacturers for abiraterone - Cipla and BDR Pharma - the others such as Glenmark, Dr reddy's are just marketing the drug - so does not really matter if you change brands or dosages ...

I am curious as to why you were put on Xtandi instead of Zytiga? Usually i have seen people put on Zytiga initially and then they move to Xtandi due to liver enzymes rising or zytiga not working as Xtandi has some restrictions to usage such as past history of seizures etc...