Hi, I posted once before.please read my bio for more information
My 89 year old Dad with stage 4 prostate cancer diagnosed 11/1997 with a rising PSA presently 7, right shoulder bone mets diagnosed 2015.(treated with trilstar & radiation)
The Dr was going to treat him with taxotere now then decided to do a CT of the pelvis, abdomen and chest plus a bone scan in hopes to treat him with radiation. The results came back with mets to skull x2, spine, ribs, pelvis. Right shoulder area is increased with tumors. Multiple ribs , thoracic and lumbar spine, left pelvis and ? right ( Dr can't say for sure in the right due to a right fractured hip in 11/2017. Met with the radiation oncologist today. He doesn't want to radiate any of those areas because my Dad is not complaining of pain, except for in that shoulder. The radiation onc does not want to radiate the shoulder a 3rd time for fear of damaging it. He has suggested Zytiga with Prednisone or Radium 223 (Xofigo) He also mentioned Xtandi. He says he would try to Zytiga first. Does this sound like a good treatment plan?
We meet with the medical onc this Wednesday. Hopefully, to get the best plan possible.
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ann1919
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I'm not doctor, but Zytiga with Prednisone sounds like a good plan for him. Taxotere chemo is an option, but can be hard for someone that age. Most would save Xofigo for later. Radiation only for specific areas where there is pain.
It all depends on what his status is. If he's otherwise healthy and has good blood work, either Taxotere or Xofigo would be good choices. Taxotere is much more tolerable if used earlier, and it adds more to both quantity and quality of life than if used later.
Either of those taken at the same time as an immune therapy (like Provenge) can have a synergistic effect. Xofigo cannot be combined with Zytiga, however. I think he should take Celebrex as long as he's taking Xgeva. I think that many doctors hold back on therapy to the aged due to ageism.
He's not in good health. He is thin and frail. He gets frequent upper GI blockages from scar tissue related to multiple GI surgeries from diverticular bleeds. Also has had multiple compression fractures in his spine from osteoporosis.
Ann, Welcome, Most of us got years on oral meds zytiga and xtandi before we ever went to chemo. He has done so well for so long, Ask why you can not just try zytiga first, and if that does not work go to xtandi. For him I like the idea of going least toxic first, and I am willing to bet he will get a great response, I know going from psa 2 to 5 seems like a lot , but believe me they go into the thousands. With any luck at all he can get a great response from zytiga, and from what I have read he is exceptionally lucky.
Thank you for your response. I believe that sounds like a good plan.
His PSA is 7 now. It went up 2 points in one month.
He has been very lucky. I feel very fortunate to have him. I wish this never came back.
What is heartbreaking is that his internal med Dr let his PSA rise to 30 plus from 1986-1996. The Dr was impaired and lost his license shortly after my Dad was diagnosed, which was by accident during surgery for the GI bleed. I am a RN and worked at one of the hospitals he practiced. I asked my Dad multiple times to get a new Dr. I told him there was something wrong with that Dr. My Dad refused saying if he had anything "bad" he'd go to a specialist. My Dad went to him 2x a year, for cholesterol checks and a yearly check up. My Dad is a retired pharmacist and definitely would have gone to a Urologist if he knew his PSA was going up. I obtained all the medical records/lab reports during that period, which showed a steady increase over those 10 years. When found, it was 49. The Dr had altered the progress notes to state that he told him every year to get a urology consult and that my Dad refused. The original notes obtained after the Dr was served a subpoena were forensic tested and found to be altered/ written all at once. However, by then the Dr had declared bankruptcy, was arrested for distribution and possession after he lost his license and his medical malpractice insurance had dropped him. About 4 years ago he called my Dad apologizing to him.
Sorry to go on and on about this. It's unbelievable to me how that Dr did this and no one in that office caught it. I wonder how many others he hurt.
Ann, I would add to what Dan59 said about trying to stay in the precious here and now, rather than dwelling on the past.
As for anxiety over PSA "numbers", ... My original PSA at age 65 was 5,006 with 20+ similar bone mets and also lymph node mets, and first line ADT took that down to 1.0. When I went on Xtandi my PSA had risen from around 5 to 95 within about a 10 months period of time. After adding Xtandi my PSA went down to below 2.0 within 7 months. I'll be 69 years old this summer. My experience is just an anecdotal sample size of one, and your elderly Dad's cancer biology response to either Zytiga or Enzalutamide may vary. The point is that the totality of his condition, overall, may be more important than a single thing like the quantity of the PSA numbers. His Quality of Life and day-to-day symptoms will continue to be important, regardless of treatment. His scan results may have more relative importance than the numbers associated with his PSA results. His treatment side effects or adverse events may need to be watched more closely than if he were a man 25-35 years younger. Etc.
All this kind of stuff is in the present moment, and the near term future. I hope you and your Dad do well with whatever his next treatment may be. I hope you will Live Well and love and cherish the experiences and support of others during the next months/years you will have together.
Hugs have mysterious medicinal qualities. Give your Dad lots of them. Ask for them yourself.
Hi, Ann. My spouse is in a similar situation though not quite as egregious as your Dad’s doctor errors. My husband twice requested my presence at appointments with his primary. I repeatedly asked him afterward to change doctors. While I am not a clinician, I’d say the man is on the autism spectrum. I have a sibling, a niece, and a nephew with Aspergers and that was my impression of him. The doctor never touched my husband during those two appointments for conditions including cardiovascular disease. My husband introduced me and the man said nothing. He didn’t even look at either of us the entire time!
Worse though was that without my husband’s knowledge, the doctor in 2016 included a PSA test along with the usual quarterly tubes drawn. He didn’t tell my spouse that he did so nor did he give him the results - almost 10 in July 2016. The doctor again ordered PSA in October 2017 with a result of 34. That time he suggested a urology consult but specifically said he had no prior PSA numbers-an outright lie.
The urologist’s first question was about PSA numbers before the 34. He answered his own question flipping through the files forwarded by the primary doctor. That was the first my husband knew of the earlier PSA that should have warranted a biopsy 17 months earlier!
Paul’s Gleason is 5+4=9 and he has locally metastatic cancer. Current PSA is 45. We’re just hoping there’s no micrometastases. He started Casodex 2 weeks ago and got a Lupron shot this past week. Tomorrow we consult with a radiation oncologist.
So we’ve been thoroughly caught up with scans and tests and learning. While we were very angry initially with the primary doctor, we’ve just been too busy processing the diagnosis and treatment options to do much of anything. However, your post has me thinking again of the what-if’s; in particular, what if the primary had acted on the July 2016 PSA?
I truly understand Dan and Charles encouraging you to not dwell on the past and to focus on the here and now. Believe me, I very much live without regret for the past and with gratitude for today. However, I feel something must be done to keep that Doctor from hurting anyone else. He has hurt my husband and I am mad! I hate that Paul’s options are limited because of that doctor’s failure to act. I accept the fact of cancer as we must do so in order to take action and move forward in faith.
I am very grateful to all who post here. Your knowledge, strength, and courage amaze me! Mary
And Ann, I got lost in my own worries. I am so very sorry your Dad is struggling. I’m sending both of you a big hug, best wishes, and prayers to guide his doctors.
I understand how you feel. I knew immediately that my Dad's primary was guilty, especially when my Dad was initially diagnosed & the hospital urologist requested the last PSA from him and he sent my brother's whose was 0.02. I guess he thought no one would notice.
I feel I did all I could. That Dr reapplied for his license in the early 2000's and I was subpoenaed by the medical board of examiners to testify against him. The Dr was trying to say he'd only been impaired 1 year, but by my testimony they could see it was 10 years at least. He never obtained his license back and is working as a therapist to drug addicted women. Hopefully, he doesn't ruin their lives.
I am sorry you are going through this. It's tough. I do wish you and your husband the best. Prayers and hugs also.
That's horrible... My dad's doc told him to get a biopsy in 2012 and my dad didn't realize the importance... 5 years later he has Stage 4. No one bothered to check up on him.... Mets, pain... I'm trying to figure out how to start his treatment. Sad.
Ann, We can not regret what happened in the past. I know a lot of men who caught it early and had reoccurance after just a few years, many are gone now. I myself was diagnosed at age 49 with a psa of 148 in 2006, psa testing was not even recommended til age 50. All we can do is go from here. It is truly amazing that he got 20 years after a surgery with what they called stage 4 , even if it was just one lymph node. I think the oral meds will help him. He is obviously a survivor with a Daughter who has good medical Knowledge to help him, which is a blessing for anyone. We are all here for you and your Dad. Keep us posted on what the Doctor says when you ask about Zytiga.
Thank you. You are correct. I need to let go of the past.
I pray all is well with you.
God bless your father! My mom is 90.. I don’t want to see her suffer either. We are lucky to have them with us for so long. He is blessed to have you for his daughter. Hold him and love him. ....
We are emotionally attached to our parents. When we see them in decline it hits home . We see how the sands of times flow....for all of us....the same ... it’s a great lesson to learn .. don’t waste life... enjoy it..God bless your father...Keep the faith...👣
I agree with you. I'm trying hard to keep my Dad busy. We have a beach trip planned for the end of May.
I think this has been extra hard because my 88 year old mom was gravely ill this time last year and passed away 4/18/17. I know my Dad is missing her terribly. They were married 62 1/2 years.
Losing mom , very tuff for dad I can’t imagine. When it rains it pours..ask dad his favorite song or musician and get him to listen if he doesnt already listen to music. Sisters stick together . You come from good stock with longevity. As you’ve lovingly described your father his is a life well spent. No regrets. Peace and good wishes.
He loves music & really enjoys musicals. His favorites are My Fair Lady & Singing in the Rain. My Mom and Dad love Frank Sinatra, Dean Martin, Johnny Mathis, Nat King Cole & many others also.
Singing in the rain is a classic.. If dads tech savy ,all movies and any music at his finger tips..if not maybe you can help him up with those. If he’s fatigued during and after treatments sometimes entertainment can help occupy the mind. My folks took me as a 5 yr old to see inglebert Humperdinck. and we saw John Mathis. 52 yrs later I stiil remember that with my folks.. I find that the music of our teenage years and coming of age still stick with me . For me it was the 60s & 70s. Listen to Bill Withers “” Lean on me” Thank you from the fathers for being there for your dad...
I had mets in the same locations as your dad. I am in a clinical trial with Zytiga and prednisone and I am also on Lipton. My tumors have been shrinking for seven years and are now only visible in my neck, shoulder and spine. Everyone's cancer is different and everyone's reaction to various medications is different but this combination has been successful for me. May God continue to bless you and may The Holy Spirit guide you in your decisions about your Dad's treatment plan.
Ann - attitude is everything. I'm firmly convinced that more people die of worry than anything else. What is, is and we have to deal with it. But more things CAN happen than WILL happen and I have more than enough to do dealing with things that ARE happening to be concerned with those which may never happen.
"As you journey through life,
Whatever your goal,
Keep your eye on the doughnut
And not on the hole."
It's still a beautiful world and a life worth living.
Hi! So far so good. He has completed treatment number 3.The plan is for 6 treatments. Blood counts have been good. The only side effect is some nausea off and on, that the Zofram helps. No nausea so far and he had a treatment Monday. He has lost some of his hair, but not all. He has been walking 3-5 times a week, about 1-1.5 miles per day. The Prednisone seems to be increasing his appetite, which is great because he is thin.
His PSA starting was 7.7. They drew one Monday, results pending.The plan is to repeat the scans after three months of treatment. He appears to be tolerating it well so far. He plans to go to the beach with me the end of May.
They actually aren't sure if he has Mets or not. He's on the verge but LNs are enlarged. So likely lymph involvement and spine. Having another doctor look at the scans and possibly doing MRI. I want them to treat it strongly as if he does for sure have Mets because the cells could be anywhere in the body...
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