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Posted 5/16/2018 8:41 PM (GMT 0)
I take my husband in tomorrow (May 17th) to get a port put in for his Provenge treatment. Then we start on Monday. Any words of wisdom, things to do, things NOT to do, from folks that might have gone through this regiment? Thanks ....
Posted 5/16/2018 9:10 PM (GMT 0)
The procedure for the installation of my port for chemotherapy was relatively simple outpatient procedure. The doctor advised my not to get the area where my port was installed wet for about a week but after that theres not much to it. If your husband decides to keep the port in as I did, it must be flushed every four weeks to avoid infection setting in. This is very important. Also, if after surgery the area feels very hot or he experiences red streaks from the area where the incision is he should go to ER immediately. Not saying this to scare you but for you to be aware. I have not had a single issue with mine and have had it in for over two years after my last chemotherapy infusion. Hope this helps.
Posted 5/16/2018 9:24 PM (GMT 0)
Having a port can make the leukapheresis process easier, compared to having larger bore needles in each arm during the minimum 3 hour process. Being hands free and not squeezing a little rubber object all that time is also less boring. Maybe bring in some of your own headphones/tunes or casual reading. The techs will be closely monitoring you and taking notes at regular intervals. With your blood going out into the machine and back again, it can cool off and make you feel cold. Ask for a nice warm blanket if you need it. Have a light calcium rich breakfast beforehand. Some men feel slowing growing symptoms of citrate toxicity during the 3 hour leukapheresis process. The anticoagulation agent in the machine can sometimes deplete calcium in the blood when it returns to the body, at a rate a bit faster than the body automatically adjusts. Many men don't have any of these symptoms at all. Slight tingling around the lips or mouth. Maybe a little numbness in the lower face. Sometimes a false sensation that the couch might be slightly vibrating (when it's actually not). Perhaps progressing to a feeling of "buzzing" all over, and in very rare instances, some cramping or stiffening of leg muscles. Report any and all potential symptoms or comfort needs to the techs right away. They may feed you some Tums or other calcium supplementation. If you feel too hot or cold or light headed for any reason, also report that right away, too. They are there to help you be safe and comfortable.
Right after the leukapheresis procedure you may be more tired than usual. No need to rush around. Having someone with you, and to drive home, or to have a light meal afterwards might help, too.

A few days after your cells go off to be treated and become "Provenge", it's important to make your infusion appointment on time. Again, you will be monitored well in the Infusion center, and it would be good to have someone with you. During the next 2-3 days afterwards you may have some follow-on symptoms, depending on how your body/immune system is reacting. I felt really tired and weak from about the 24-60 hours after my infusions. It's probably an individual thing.

Afterwards, I did not have any big immediate PSA changes as a result, but I choose to believe that it may have given me some long term benefit.

Charles
Posted 5/16/2018 10:09 PM (GMT 0)
Thank you ....
Posted 5/17/2018 7:48 PM (GMT 0)
The advise I was given was to buy some press and seal to cover the area while showering. It worked better than the covers that the hospital gave me. The port made the process go pretty smoothly.
Posted 5/17/2018 9:06 PM (GMT 0)
Thank you all. He got his port today and he is sore, but otherwise ok. Strange, but they had him stay for 2 1/2 hours after surgery to monitor him. That's fine, but when I asked for a chair, the nurse said no, family members must just stand. So, I'm a bit exhausted, standing with a bad back for almost 3 hours. Not sure why family members must stand .... I sure hope I can get a chair on Monday when they start. Another 3-4 hours standing may do me in!
Thank y'all for your advice and wisdom. It is appreciated more than you know. smile
Posted 5/24/2018 10:16 PM (GMT 0)
The leukapheresis procedure went well ... no real side effects other than being a bit tired. The infusion process today also went ok. He's very tired tonight from the infusion. Our son and daughter in law (and their two dogs) are coming in tonight for the holiday weekend .... so hopefully he will be feeling ok. Anyway ... just an update.
Posted 5/30/2018 12:53 PM (GMT 0)
Just an update. The first infusion was last Thursday and all went well. No side effects of it as of yet (Wednesday) .... so, thinking he is one of the lucky ones that will handle this quite well. We did finally get the backpack with the goodies in it ... nice backpack - it rolls!

Dealing with paying for the upcoming Zytega now .... seeing if Johnson & Johnson will help out ... no other things available at this point. But, it is what it is ... all good smile
Posted 5/31/2018 3:08 AM (GMT 0)

Hello DebbieMH,

I always follow your posts, and hope your husband is doing well with his PROVENGE treatments. Hope all is going well for both of you!

You mentioned ZYTIGA on the near horizon for your husband.

When I was diagnosed five years ago, ZYTIGA and XTANDI were the relatively new breakthrough medications that had gotten F.D.A. approval.

ZYTIGA is an important weapon in the arsenal, and ZYTIGA has helped many of our brothers here on this forum. I am just one of those fellows who has benefited from ZYTIGA.

Since your husband will start ZYTIGA soon, please read the ZYTIGA thread put together by our members here.

It includes first-hand experiences that will give you and your husband some helpful insight and advice, when he starts taking ZYTIGA.

Just go to the very top of your screen and find the SEARCH BOX. Easy to find!

In the search box, type in this thread title:. ZYTIGA: OUR COLLECTIVE EXPERIENCES.

Click on that thread title and you will find a wide variety of posts from our members here and their experiences with ZYTIGA.

Just thought this might be helpful and informative to you and your husband, with ZYTIGA in his future. ZYTIGA has continued to help me for the past three years, and remains part of my daily routine.

Wishing you and your husband my very best,
Cyclone - Iowa State University
Posted 5/31/2018 4:28 AM (GMT 0)
Hi DebbieMH,

Glad to hear that round of Provenge went very well.

Hope it all works out for any up-coming Zytiga, and costs.

Did I see a confirmed BRCA 2 mutation listed in his history? If so, you might consult with some prostate cancer specialist(s) at a major research-type institution and ask about things like PARP Inhibitors (e.g. Olaparib (Lynparza)), or similar agents, perhaps in Clinical Trials. Perhaps not right away, but maybe for another Option sometime down the road. Maybe also for a Platinum type chemo for future consideration, too?

(I had Provenge back in the Fall of 2016. We still have that "swag" rolling backpack, too. Ha. Ha.)

Charles
Posted 5/31/2018 11:15 AM (GMT 0)
Cyclone-ISU - yes, thank you. I have read that thread several times, and he will start on Zytiga as soon as the PROVENGE is completed. I will again reread it before just to make sure I haven't missed anything. Y'all have really helped me really push my husband to drink enough water for the PROVENGE. He fights me on it ... but I am prevailing smile

Curious Charles - yes, he has the BRAC 2 mutation. And ... he is with a major research institution and with one of the top PCa doctors. Tulane Cancer Center and under the care of Dr. A. Oliver Sartor. The waiting list to get with him is long ... we were very lucky that I was able to convince him to take Dan immediately (right place, right time, back in 2012)! He has treated Dan's PCa aggressively from the beginning and I'm sure will continue to do so. It really is nice to have someone you trust completely - he takes his time with Dan ... we were with him for over 2 hours on the last appointment discussing Provenge and then Zytiga. Dr. Sartor personally answers our emails and text messages. Even found and called a pharmacy for Dan in 2016 in Jackson, WY when we were there in our motorhome and ran out of Casodex. Dr. Sartor has Dan in the "Iron Man Trial" .... and is keeping on top of other possible trials for the future. Iron Man really isn't anything other than keeping track of men with Metastatic PCa and the different therapys ... what works best. The results will be helpful to others in the future.
Posted 6/2/2018 1:46 AM (GMT 0)

Hello DebbieMH,

Your husband has a very proactive plan put into place, with PROVENGE followed by ZYTIGA.

As your husband prepares for starting ZYTIGA, it's important to hear some words of encouragement, when starting a new treatment or medication.

In my case, my doctor was still assessing how ZYTIGA was working for his patients, as it is still in its first decade of widespread use, since F.D.A. approval.

I didn't quite know what to expect ... at that time, I didn't have any other friends or comrades that had started on ZYTIGA. Today, I have SEVERAL direct friends of mine who have now been helped by ZYTIGA.

My oncologist held out HOPE that ZYTIGA could help me. I remember his words of encouragement, and his belief that trying ZYTIGA was certainly worth a try.

My oncologist had me return for lab work within a month, just to see if we could detect ANY signs of improvement in my lab work ... including P.S.A. levels.

It was very encouraging to see that my P.S.A. began to drop within the first month of starting ZYTIGA. As time went on, my oncologist and I continued to track the P.S.A. levels.

Eventually, we watched my P.S.A. drop to the lowest level I had experienced since I had been diagnosed. Surprisingly to me, my P.S.A. eventually dropped even lower than it had from chemotherapy treatments, just a few months before.

I have continued to stick with ZYTIGA, ever since. For some reason, I saved the first empty medicine bottle at the end of the first month. I did so again the second month.

From there, I decided to start lining up the empty ZYTIGA bottles on a shelf --- just as a way to mark my progress on this newer medication --- and as a way to be mindful of my gratitude for these newer treatments which have emerged in recent years --- medications and treatments which are helping me --- and friends of mine, as well.

Each story is different --- but I have just about three years' worth of empty ZYTIGA bottles, all lined up on that shelf. I remember being grateful when there were 6 bottles lined up on that shelf ... then 12 bottles, which represented an entire year ... and right now, there are nearly 36 bottles lined up on that shelf.

This is my ZYTIGA story to date ... but I well remember the first day the medication arrived and wondering, "Can these white pills in this bottle really help me?"

My oncologist shared true HOPE with me that day ... and today, that's the same HOPE I want to share with you and your husband.

DebbieMH, I am truly hoping that your husband's PROVENGE treatments have a mighty IMPACT on his well-being ... followed by ZYTIGA after that.

Keep posting ... let us know how things are going ... we're all in this together.

Handshake, encouragement, and HOPE ~
CYCLONE ~ Iowa State University
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