My PSA (2.5 years post successfully completed chemo) is now on the rise.
Still a modest movement from undetectable to 0.2 to 0.3 to 0.4 to now 0.5 (each separated by 6 weeks). But obviously it’s time for treatment given my high grade and high tumor load when I was first diagnosed. I currently remain on Lupron and Zometa injections.
MO wants a PET scan before discussing the decision about what treatment is next - but obviously there are a few clear choices.
Zytiga / Yonsa vs Xofigo are really the two ones I’m expecting.
My questions:
1.I’m CRPC now at this point. Extensive bone Mets in my history but resolved from chemo. If bone Mets are back, should I do Xofigo first? Any studies done waiting to do zytiga or xofigo in any order?
2. Zytiga vs Yonsa? I’ve apparently been living under a rock on this one. Yonsa sure sounds better - but I don’t want to fall for the marketing jargon if zytiga is more proven.
3. I’m still hoping to keep working. I’m 58 and like my job as an engineer. I work from home so no public risks. But I’m worried about the side effects of next treatments. Do I need time off to adjust? Or does zytiga/xofigo or whatever go pretty smoothly? I didn’t work through chemo and was glad for the time off. I tolerated chemo very very well, but I needed the physical time off. Will I need time off again?
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BigM62
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This is very helpful advice. I will absolutely do my research on the xofigo/Provenge option in case the scan shows new bone Mets. At this point I’m not sure what I will see on the Axumin scan with my PSA at 0.5.
My only biopsy was a T12 met when I was first diagnosed in 2017. At that point they knew I had cancer but the primary was still in question. I never sent it out for testing - and notes just say run of the mill “high grade adenocarcinoma” which was a welcome (unwelcome surprise).
Post chemo I haven’t had any Mets detectable enough to biopsy. But that could be changing. I’m definitely looking into liquid biopsy and Germline testing as a next step as well. I’ve put this off.
What is the point of waiting for more detectable bone metastases? You already know you are metastatic to the bone. That doesn't change. Get germline testing now. Somatic when you get more metastases. Liquid biopsy is expensive and in your case will probably tell you nothing yet.
I was in a very similar situation...completed Taxol and psa began to rise relatively quickly. Next step for me was Provenge (completing the 3rd dose today) then I’m told Zytiga.
Based on my experience...I’d talk about Provenge as the next step, then Zytiga or one of the other similar drugs.
Do you feel like provenge was a useful? It’s an obvious combo with xofigo. But I’m nervous about things growing out of control while doing provenge. How did you decide for yourself?
I did the oposite, I worked thru 4 years of chemo, 21 bags, and Lupron/Zytiga. It was not easy but I was only in my late 40's. On the third recurrence they put me on Lupron/Xtandi and have been there for 44 months. I retired 3 years ago to enjoy the time I had left. I miss the aerospace industry and the people but we take what life gives us. I personally think that managing dr appointments, medications, exercise, appropriate rest, quality family time, and therapy is a part time job in itself. It is a very personal decision.
I took early retirement 2.5 years ago after diagnosis at age 55. I also wanted to enjoy a few retirement years even though I loved my career. I had access to a disability pension and no debts so I was able to make it work financially. I don't regret my decision at all. I have time to focus on healthy living with no job stress. I spend a lot more time with family and friends. I'm loving every day.
MarkBC, so you retired right away at 55? You said 2+ years ago. Do you regret anything about it?
My wife is 37 and makes even salary as me. We have a 7 and 8 year old. And from my company I can collect a very good disability partial salary - or assuming they don’t fight that my reoccurrence is “enough” without a 2pt PSA jump which sometimes is the definition... We own our home and cars and have no debt.
My wife says to retire now at 57 and manage the house and kids and collect my disability. But at the same time I feel so much guilt putting financial pressure on her as the only working adult. And the money I can be docking away for her. And I do LIKE my work (most of the time).
I just don’t want to look back and wish I had collected a salary longer. I know as I type this it sounds obvious “priority to time with family!” Which that is certainly true. But I’m going to be leaving her with two young kids - I also want her to have everything SHE needs.
Cancer sure has a big impact on all aspects of our lives.
Taking early retirement is a huge decision to make. It sounds like my circumstances made my decision easier to make than the situation you are in. My partner and I do not have dependent children and he has a solid income to survive on. I was a high school teacher (and military reservist) who is still technically an employee of the school board but on a long term disability pension. If I really wanted to, I could return back to work as a teacher but not in the assigned position I used to have.
When I was diagnosed at age 55, I went on sick leave for 6 months while I went through chemo. I then had to decide whether to return to work. Initially there was no question that I would go back to work. I loved my job and looked forward to going almost every day. The six months off gave me a lot of time to think about my situation. Stage 4 cancer qualified me for a disability pension that would give me about 70% of my previous income. I had money saved up for retirement. I also have an inheritance coming if I live longer than my parents. I knew I could manage an unplanned early retirement financially although I would have to be a little more careful with my spending.
I didn't enjoy chemo but I did enjoy the six months off work. It did feel like an extended holiday with no stress from work. I started to realize all the fun things I could do if I was retired. I also realized that the ADT fatigue I was experiencing would make spending six hours per day in classroom full of teenagers more difficult than it used to be. 😀
We can't predict the future but I started to think that the first few years of my cancer may be the only ones I have without severe pain, bone degeneration, etc.
Ultimately, I thought about the statement: "No one ever said on their deathbed ‘I wish I’d spent more time at the office.’ ”
So I decided to take the long term disability pension. I have been on that for two years now. If I live long enough, it will last until age 61. At that time, I will need to permanently retire with a regular pension. I miss some aspects of work but it becomes less as time goes on. I have no regrets about my decision. I love each day of my life now. Every day is Saturday! 😀 I've done lots of camping and travel. I'm doing things I used to put off doing. I'm spending much more time with family and friends. My days are busy but in a relaxed manner. I'm eating better and getting more exercise.
As I said before, I think your situation makes the decision more difficult. I wish you the best. Let us know what you decide to do.
Wow! There are a lot of heroic inspiration on this page, but working through chemo is amazing! I was 54 at the time - did 10 rounds - and was generally in top athletic shape beforehand. I would say it was a piece of cake compared to my expectations. But the fatigue combined with the mental expectation of caring about whatever work crap was going on would have been too much for me.
But I’m hopeful I can also work through zytiga as well. I’m lucky enough to have great disability insurance when the time comes. And my kids are only 7 and 8 - so time with them is key. But I’m still trying to believe that I’m 10+ years from the end and it’s to soon to “focus on the time left”.
Of course sometimes you don’t know until you don’t know....
I've been on Zytiga for almost three years now... work at the BIG UPS (part-time) and maintain an exercise schedule---all good, except I just have that 'giddy up' .....build on your athleticism and maintain an exercise schedule as much as you can...and yes spend time with the kids! Mine were little when I was diagnosed so I took nothing for granted....good thing because they're 17 and 16 now...good kids but just into their own things now!
In principle, Xofigo is fine. My concern would be if it makes you ineligible to participate in new radioisotope/PSMA therapies (I simply don't know if it does or not). There are some promising therapies currently available (Lu/Ac with PSMA ligand) and a couple already in trials (Thorium, and CarT w/PSMA) with promising results. Talk to you MO and make sure Xofigo won't interfere.
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