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Posted 1/13/2017 12:14 AM (GMT 0)
I haven't posted lately, but do check the board a couple times a week and hope everyone is doing well. Overall Dan has been doing really well and has already outlived the expiration date he was given last year. This is the first setback in a few months. After Dan's 4th Jevtana treatment his PSA was down to 3.5, so we decided he could go 4 1/2 weeks before the next treatment so that he would feel better while on a golf trip. When he came back his PSA had gone up to 6.8 and now to 11.4. We're hoping it will just take a couple treatments to get control again like when he first started the Jevtana, but they have scheduled scans for next week. One of our concerns is that he been having to urinate more frequently again. Could it be an effect of the radiation or could the cancer still be causing an enlarged prostate? We'll find out next week, but we were curious as to whether anyone else has had this issue. Thanks for any thoughts on this, and I still continue to learn something new every time I check in, so thanks for that too.
Posted 1/13/2017 6:59 PM (GMT 0)
Hi Mary,
That was certainly a great response to the Jevtana, and the ability for Dan to make the golf trip a testament to how he's feeling.
It's kind hard not to a attribute anything out of ordinary to PCa, but here's to hoping the Jevtana tx will get Dan back on track lowering PSA and urinary output. Just keep a watchful eye on pain that may indicate UTI. Gary had a doozy of one that raised his Psa and made him a.sick puppy.
Beth
Posted 1/13/2017 7:53 PM (GMT 0)
Hi Mary. For what is worth. I have found myself having to urinate more frequently lately. However, all my recent scans were good and my Prostate is not enlarged, so I am attributing it to the hormone therapy.

I'm surprised if Dan was D/X'd less than a year ago that his doctors gave him such a short expiration date. Treatments have come so far improving survival. May I ask where he is being treated.

All the best to you and Dan.
Posted 1/14/2017 5:21 AM (GMT 0)

Hello Mary and Dan,

I always follow your posts ... I wanted to let you know that you have my loyalty and unwavering support, as your treatments continue.

Keep forging ahead ... keep in close consultation with your medical team ... stay determined ... keep reaching daily goals ...

We're all in this together ... just wanted to let you know I was thinking of you and sending you my very best !

Sent with my very best,
"Cyclone Team Fan" ~ Iowa State University
Posted 1/14/2017 8:19 AM (GMT 0)
Thanks for the encouraging words.
john16 - Dan's being treated at the Pratt Cancer Center at Mercy Hospital in St. Louis. He's also seen docs from Vanderbilt, Siteman at Barnes Wash U, and Mayo. After RT when bone mets were found, MO gave him 8 mos. from start of chemo on the outside. Needless to say we were shell-shocked. I think that estimate could be when chemo is a last resort. Dr. Kwon was the first to be encouraging. He said MO's were fatalists and we couldn't have agreed more. While all the docs recommended the same treatment, I'm guessing Dan's MO has never treated anyone with Dan's numbers. He's had more side-effects with the Jevtana, but usually after a week he's able to hit the golf course, and by the third week, he's getting his appetite back. Aside from the usual fatigue and some weakening in his legs, he's the picture of health. I try to keep up with the other G10's to see what's working for them. Looks like you've been doing great. Keep it up. I don't know about you, but Dan's taking so many meds, any one of them could have frequent urination as a side-effect or it could be from radiation. Hopefully the scans on Wednesday will only show improvement.
Take care all.
Mary
Posted 1/14/2017 2:30 PM (GMT 0)
Mary:

I guess you live in St. Louis? I grew up there. I miss the Cardinals and the Italian food.

My MO has always been pretty positive. When I asked the dreaded question he told me it's not even on their radar. I think at MDA they pride themselves on their talents and their care. I like that.

Dr. Kwon is great. I have watched his videos on U-tube. Talented guy.

Tell Dan to hang in there. He and you are not alone. Prayers for good scans. Let us know how it goes. I'm off to the golf course myself today!
Posted 1/15/2017 1:41 AM (GMT 0)


Hello Mary and Dan,

I just wanted to add an after-thought, in regard to your testimonial about Dr. Kwon at Mayo Clinic ...

I just consulted with Dr. Kwon yesterday, at Mayo Clinic in Rochester, Minnesota ... this was my fourth consultation with him, since meeting him for the first time in the fall of 2015.

I agree with you ... Dr. Kwon is quite visionary in his approach ... he is not bound by conventions ... he thinks outside the box ... he opens doors that others view as "closed" for cases with complexities ... he is a maverick ... he is a risk-taker ... he reaches out with hope, to those who feel that their cases are hopeless ...

As attested by others on this thread, Dr. Kwon is a "mover and a shaker" in the world of prostate cancer ... he sees possibilities that others don't see ... he is a rainmaker ... he takes time with each patient that he sees ... he shows his brilliance ... he shares his vision ... he shows his sincerity.

Over time, several of my other friends have received the same diagnosis that I have ... since then, several of my friends have also met with Dr. Kwon ...

When saying good-bye to Dr. Kwon yesterday, I stood up, and shook his hand and thanked him for helping so many of my other friends, just when they needed his help and insight and expertise the very most ... I told him that helping my friends meant more to me than words can ever express ...

Sent with my best,
"Cyclone Team Fan" ~ Iowa State University
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