9 Months and Still Improving

[tom67inMA]

For those recently diagnosed and reading this, there is hope! My experience has been that treatment works, and the side effects are far preferable to living with undiagnosed and untreated advanced disease.

tominmotion.blogspot.com/20...

[ken12491]

great story -- wishing u the best -- u r certainly a fighter!!! wow.

[Cheerr]

I’ve followed your posts Tom and it definitely is a huge improvement from where you started. Wishing you the best for the on going treatments and happy work life

[tango65]

Best of luck with your treatment.!

[timotur]

Thanks for posting, very enlightening, esp on the chemo tx. As a runner myself, it is inspiring to see you continue to do what you love, and also be able to return to work. Keep on keeping on, as my football coach used to say!

[dorke]

Thanks for sharing your uplifting story.

Wish you and all brothers the best.

Which antidepressant are u using and does it help you?

[tom67inMA in reply to dorke]

I'm on bupropion (generic Wellbutrin), only 75 mg/day. I've been on it for about 10 years, well before diagnosis obviously. It works on dopamine and norepinephrine, like Ritalin and cocaine, but it's a re-uptake inhibitor so it's gentler than those and not a controlled substance. It doesn't work on serotonin, so not much help with the hot flashes.

I used to take it seasonally in the dark days of winter, but now I suspect I'll be taking it 2x a day in the winter and 1x day in the summer.

[JamesAtlanta]

Great blog post! Great attitude, too!

Keep up the great results and perspective!

James

[larry_dammit]

35 months and counting myself, side effects are a pain but still getting out every morning to help my dad. 87 who has deminsia and stage 4. Fighting that monster 🙏🙏🙏😡

[dadzone43]

Love your insights and sharing of the inner turmoil we all feel.

[jfoesq]

Good news, Tom. I hope all of us continue reading your posts for many years to come

[j-o-h-n]

Great info... but I still don't like you (Red Socks Fan)... Go Yankees

BTW Here's another Tom in Motion (in a field also)

youtube.com/watch?v=KGR-gWh...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/21/2019 5:26 PM DST

[tom67inMA in reply to j-o-h-n]

You'll be happy to know I grew up cheering for the Yankees in the 70s, and was ecstatic when Bucky Dent hit that homer against the Sox. It was a great way to rattle the natives here back when they still had the curse of the Bambino.

[j-o-h-n]

Okay I take that back. I like you....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/21/2019 5:46 PM DST

[bellyhappy58]

HI Tom, I have been diagnosed in Nov with PCa with multi mets . My treatment of ADT , zometa, Zytiga has driven the PSA down from 126 to 0.41 . Will be starting Taxotere in mid August...Any suggestion

[tom67inMA in reply to bellyhappy58]

Only suggestion is to exercise as much as possible during chemo even if you don't feel like it. It helps a bit during chemo, but I think it really helps with bouncing back after chemo is complete. You've had a great PSA response so far and hopefully the Taxotere will knock things down to undetectable for you.

[Hidden]

Tom, I read your blog with interest. I see my urologist tomorrow to get the verdict on my latest PSA reading and yes it is always nerve wracking. I've also worked at writing software -- for realtime embedded applications. I retired several years ago. I miss the work but not the commute. Good luck with your treatments.

[Drphil1938]

Tom. I just read your blog and I must say that you have a very positive outlook, which is so important.

I too, went through several years of undiagnosed aches, pains and urination problems. I was dx in March 2019 with Gleason 9, stage 4 PCa. As a note to all, don't let your annual physical not include a prostrate exam or a PSA test. My Dr. dropped the PSA test at the recommendation of the American Cancer Society. They said there were to many false positives and most men would die of something else. I have paraphrased their statement but I believe it is accurate. So, insist on a PSA test each year.

I am getting a blood draw today to find out how well my meds are working (lupron and zytiga). So, I am anxious.

[tom67inMA in reply to Drphil1938]

I've heard PSA testing is better at catching slow growing disease early and tends to miss the more aggressive variety. Mine went from 2 to 216 in 13 months, so no real help there.

[Tommyj2]

Need a little clarification. Are you saying that you had advanced disease and your PSA's were coming back negative?? If so..didn't know that was possible.... If so..VERY bad luck. So glad you were able to get on top of it. How advanced is your disease?? What is your current med regimen??

[tom67inMA in reply to Tommyj2]

Yes, I was diagnosed with the rare intraductal carcinoma which tends not to produce a lot of PSA. The way I think of it the PSA was going into the seminal fluid instead of the blood. It was only when the metastases had gotten big enough to produce their own PSA that my blood levels skyrocketed. So yes, very bad luck, and I'm left wondering if a DRE would have found something amiss ahead of time. But of course, who asks for a DRE in their 40s?

On my initial bone scan my skeleton was lit up from shoulders to hips. Details of my treatment are in my profile, but I've had radiation, docetaxel, lupron, Zytiga, and TURBT surgery to remove a bladder tumor because one cancer isn't enough for me Now I'm "only" on Lupron, Abiraterone+Prednisone, Xgeva, Celecoxib, Atorvastatin, Bupropion, and Clonazepam. Also taking supplemental vitamin D and K. Also running 25-30 miles a week.

[Tommyj2 in reply to tom67inMA]

I congratulate you on your attitude in the face of some DAMNably bad fortune. Very glad to hear that you are able to keep up with running the amount that you do.... I'm sure it takes mental stamina to get out there each day and keep at it.... Were you running considerably more prior to ADT and your other tx components?? Are you able to maintain a fair amount of muscle tone and mass ?..... I ask because I am close to beginning my ADT and always interested to hear from people who are remaining active while on it..... my whole social life is built around physical activity and it would take a huge chunk out of my life if I were not able to keep participating..... I expect a diminution in function but I really hope it's not so much that I have to back out....

[tom67inMA in reply to Tommyj2]

You ask some very good questions. My take on things is that if you were a world class athlete you will lose muscle mass and performance while on ADT. If you were a casual athlete then you can compensate for ADT by being more disciplined about your training.

I'm a member of the local running club, so my social life revolves around running and I know exactly what you're talking about. Right now, I'm running as much as I ever have except for back in 2011 when training for a marathon. I lost a lot of speed over the past year, but it's still coming back so I'll be curious to know where I end up.

As for muscle mass, I didn't think I had any to lose, but whatever puny muscles my arms had seems to have gone to belly fat, and I've lost 10 lbs. I just started using the company gym now that I'm back at work, and it's too soon to tell how much I'll be able to rebuild. I never did weights regularly, so in theory I can get stronger than I ever was. I have been shoveling snow and using a chainsaw, so some functional strength has been maintained.

Finally, it's actually not that difficult to run. Sometimes it takes a bit of effort to get off my butt and out the door, but once I get moving it's quite enjoyable. A large part of my attitude is directly a result of regaining my ability to do things. I mean, my body was filled with cancer and I'm out there running further and faster than I was when I was a new runner at age 40 (and I have the 5K times to prove it!) I also suspect the prednisone is making me a bit manic sometimes. That's a side effect I'm okay with.