I'm back because IT is back

Hello again! I had stopped checking in here because for quite a few years hubby's PSA had been undetectable. he had some bone pain and occassional bouts of fatigue, but otherwise was doing well. He is on cassodex and lupron and prolia. He started walking and now averages 7-9 miles a day, occasisonaly making 10+ miles.

But in the past 8 months or so, things started to change. His PSA started to go up slowly and some of his bloodwork was abnormal (low white bloodcells, low monocytes, low red cells, low hemoglobin). Doctor upped his bloodwork from every 4 months to every 6 weeks. The PSA rise was small and sporadic, but rather continuous.

His most recent PSA jumped over 1 point from the previous 6 weeks. His bloodwork continues to be low and he is almost constantly cold. Doctor is now considering Provenge (I've looked into this several times previously- even when it was still considered experimental). I'm hopeful a decion will be made soon. Hubby may need to have some tests (CAT, MRI, etc) to 'justify' the Provenge for insurance. And frankly, I'd like him to have them- we'd have a clearer picture of where he is.

Just wanted to update and let you know I'll probably be lurking and posting occasionally again.

It is the nature of the beast for things to change. I was provenged in 2012. One of the first few on this site. I believe it is a positive thing to get the immune system ramped up and on board. PSA may continue to rise after Provenge. Mine did and then leveled off. 16 months later it was on to Zytiga. Iam not sure how true it is but I have been on Zytiga for 8 years. I think I am close to a record. Scans are always a good thing. Without imaging we don’t really know what is going on. Hang in there. It is going to be okay. Lots and lots of weapons to fight the beast. If my knees hadn’t of given out I would still be working as a pipe fitter. Not too bad for 15+ years with advanced PC.

Hello, WorriedaboutHubby ---

It sounds like the upcoming scans will be timely and informative.

Updating scans --- which I do on a regular basis at Mayo Clinic --- builds a series of sequenced images. All of that has value for comparative reasons.

Like your husband, I am also on ADT ---- as well as the six-month PROLIA shots, to maintain bone strength and integrity.

Your husband's dedication to fitness is evident --- and I walk several miles each day, as well.

It's great for "body, mind, and soul" ---- in a thousand ways!

I applaud the consistent lab work schedule --- and timely PSA testing. This allows your medical team to watch for fluctuations and trends.

A few thoughts to consider ...

If a "next step" treatment is indicated, make certain you ask about the RANGE of treatments available.

With your medical team, "drill down" into possibilities such as radiation, chemotherapy, & PROVENGE -- as well as the chemo-hormonal breakthrough medications such as XTANDI or ZYTIGA, to name just a few.

It's important, too, to talk in-depth about the sequencing of these treatment options.

My medical team "mapped and planned" my sequence of treatments.

In my particular case --- ADT was started immediately ---- a round of chemotherapy was recommended next ---- ZYTIGA was then prescribed thereafter -- and, in time, a round of radiation treatments was recommended.

My lessons learned, throughout it all?

* It's always a valuable step to get a second opinion, before starting a new treatment. I call Dr. Kwon at Mayo Clinic my "trusted and valued SECOND SET OF EYES" --- but a second opinion is often available locally --- perhaps at your current treatment center.

* Wisdom from my one of my main doctors, who said, "A great doctor will ALWAYS encourage you to seek out a second opinion, when considering major treatments." I have never forgotten those words of wisdom, and they continue to resonate with me!

* Keep an open mind --- rely on your medical team's expertise ---and ask about the range of treatments and the best sequencing of those treatments for your specific case.

* My greatest lesson learned, through it all --- my toughest treatments ---- chemotherapy and radiation treatments ---- have paid the greatest dividends, over time.

Keep us updated --- let us know how the new scans go --- and keep us updated!

A great thing about this website --- if a new treatment is needed ---- now or down the road --- we have members here who have first-hand experiences to share!

Stay in touch with us here!

We're sending support and positive vibes your way!

With my best sent to you both ---
CYCLONE --- # Iowa State University