Well...PSA up...and declared Castrate... - Advanced Prostate...

Advanced Prostate Cancer

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Well...PSA up...and declared Castrate Resistant Advanced Stage 4....I guess there's not level after this one?

greatjohn
greatjohn

Me, diagnosed at 57 with Gleason 6...then last year at 60 with Stage 4....now today....Stage 4 Castrate Resistant AND aggressive. (ouch)

since my PSA has gone up from 1.83 to 2.4, I was thinking I would be given some new drug to add to Lupron today at the Oncologist

...but NO...they are starting me on Provenge (in 2 weeks) after a Axinum Pet Scan in about 10 days to use as a new baseline. ( I just had an Axinum Pet Scan done in March.) AND at the same time I am starting Xtandi. Doctor STILL says I should be fine for my trip on August 15th(for 3 weeks) to Europe. I'm nervous...but, on his recommendation, I bought us travel insurance which, because he put in the doctor notes today that I am fine for travel..he says will cover me if something goes wrong before the trip. Got my fingers crossed. This Provenge sounds scary with how it's done and it's possible issues...but they feel it will be great for me at this point. A new path on this crazy journey!

Life is Beautiful! P.S. I still feel great other than Lupron issues.

61 Replies

When you deeply look forward to events, your body has a way of lending a hand when the time comes. Maybe it will be that way for you. If I were looking forward to a trip to Europe I wouldn't even feel a little thing like treatment ;) BTW, I'm Stage 4 Gleason 9, Advanced but "Castration Receptive"!. So far the only horrible pain I've had to endure was because of treatment, not because of the disease. I'm hoping that won't change anytime soon. Life is good. Fuck Cancer!

greatjohn
greatjohn in reply to EricE

Thanks dude...my only pain has been from Lupron and Chemo as well.

J

John,

So all this declaring of castrate resistant was put on one data point of one psa? Provenge has shown a survival advantage for us, It may be a good time to use it while psa is low and really going from 1.83 to 2.4 does not seem like it is galloping anywhere, what was the time frame?When my psa was in the single digits a 1 point bump was considered possible noise in the test, and often the next one was lower. It is my thought that it is good that you are getting these treatments. You should be fine for your Europe trip. I wish you a long response to the xtandi and I hope the provenge gives you years too.

greatjohn
greatjohn in reply to Dan59

Because of it going up twice on lupron and since chemo...I fall into the requirements to get provenge....they said it's best to do now.

Hidden
Hidden in reply to greatjohn

Go for it!

Provenge isn't scary, what's scary is having prostate cancer and living in a third world country where treatment is sparse. Go on your vacation and chill, life is good. When you get back you will be under the care of world class oncologists. See how lucky you are to have access to acclaimed treatment centers? Now go swim naked in the ocean.

Turn the page, another chapter awaits.

greatjohn
greatjohn in reply to Bill48162

Thanks

Hidden
Hidden in reply to Bill48162

Awesome Bill48162. !

Sorry to hear that, John, but don't despair, you have a lot of treatment available to keep it at bay for many many years. Best wishes and God bless you.

John...you’ve got a lot of good years left in you. Now go out and enjoy your European holiday...vacation...whatever! 😎

Hang in there man. There are a lot of treatments and a lot more coming. News is sometimes rough but you need to look at it one day at a time. Enjoy Europe. What part are you visiting? 3 weeks sounds like a great trip

greatjohn
greatjohn in reply to Emak1

thanks...this year we're doing London for a few days and then a motor coach tour of England, Ireland, & Scotland. Trying to stay in cool places for Aug/Sept...since we live in South Florida. Last year we did Greece and Mediterraean and it was a little HOT that time of year...reminding me too much of home! LOL.

Emak1
Emak1 in reply to greatjohn

Sounds awesome. It will be a great trip. Was in Ireland a few years back, it is a blast and London is a great city.

As soon as my PSA headed north, got on xtandi. Hasn't been as long as some of you guys, but put my PSA right back in the cellar. Hang in there greatjohn, we're pulling for you.

Doug

Good luck and have fun on your trip!

good luck bro....thoughts with you.

I would love to go on a holiday but until chemo is finished and MO prescribes whatever comes next I am staying put ... so go and enjoy yourself while you have the opportunity. Good luck!

I’ve been overseas 4 times since diagnosis, radiation and chemo over the past 11 months. The only precaution I’ve taken - apart from being super sensible about my movements (don’t get banged over in crowds, etc) - is injecting myself with Clexane just prior to long flights (flights 7-8 hours +). This precaution taken because of the hightened risk of clots forming as a consequence of the chemotherapy.

Sorry to hear, the insurance is a wise move ,my wife and I started doing that last winter as you just never know 😜

I have been on Xtandi for 5 months now after Zytiga failed. Side effects are minimal so I am going to Europe for 5 weeks holiday in July for the Breast Cancer survivors World Dragon Boat Championships in Florence and Bastille Day in Paris. Start radiation on Monday for a "new" lesion on my 3rd rib, and PSA is accelerating wildly but they won't stop my trip. Life is not a dress rehearsal - get out there and do it

greatjohn
greatjohn in reply to Kezza2

the "holiday" part of the trip doesn't worry me as much as the "flight" part...LOL. We even looked into doing a ship over and back...but couldn't coordinate a time for it with our land tour that we are doing. I definitely love "getting out there".....I feel better about having bought the insurance...and my oncologist says they are quite good at filling out the forms if something comes up and I can't make it. We just made the final payment ....so we have 11,000.00 riding on feeling well enough! That should HELP me feel better ! ! ! Can't wait to be out of the South Florida Aug/Sept heat and into the cooler English, Irish and Scottish weather for 3 weeks ! ! ! Good Luck with the rising PSA....I am going to be doing Provenge right before the trip...THAT is what I am more worried about...and I guess the Xtandi will be "forever". ~~John

MichaelDD
MichaelDD in reply to Kezza2

Kezza2 ... Have a great trip. I am now a Stage 2 Breast Cancer survivor. 13 years. I was told 3 days before my 50th birthday. 2 weeks after I had a radical mastectomy. 4 months of chemo, then 5 years of Tomoxifen . Unreal that now I fight PC for the last 2 years. Bless my "sister and brothers" on your holiday!! Be safe and enjoy.

If Xtandi messes woth you to much you can cut down the dose. I guess call the MO first but mine got cut in half. Full dose i was pretty much incapacitated but woth 2 i can tolerate it.

greatjohn
greatjohn in reply to Tjc1

yes, luckily I'll be starting in about 2 weeks (with the Provenge) which will give enough time to see if we have to cut down the dosage before our holiday starting Aug 14th. I think they said it was 3 pills (or 4). Once a day. How many pills did you take in the beginning ? and how many when you cut it back? Just curious.

Thanks,

John

Tjc1
Tjc1 in reply to greatjohn

4 pills i started with then down to 3 ...no change. Down to 2 i can tolerate it now.

greatjohn
greatjohn in reply to Tjc1

Thanks. I'll see how I do....and good luck! ! !

Dan59
Dan59 in reply to greatjohn

John , You may not be bothered that much by xtandi, especially in the beginning. I always did mine about 9 pm and went to sleep about midnight, If you need an extra hour or 2 of sleep ,just do it. I was on xtandi with zytiga at the same time ,4 pills each, Several vacations in Europe , and fished commercially in Alaska while on this protocol. After a few years I did notice extra fatigue, But when I needed a nap, I took one, then good to go. IMO do not let treatment get in the way of living your life. Your trip In Aug is living your life to the fullest, and that is why we even do these treatments. I wish you a great vacation, and long response.

greatjohn
greatjohn in reply to Dan59

Thanks so much...I am humbled.

John

Shooter1
Shooter1 in reply to Tjc1

Tjc1,

What were your problems/ Four months off chemo, six months on Xtandi. No knee, elbow or foot problems while on chemo. Now they all hurt more and more. Feet feel on fire with socks or shoes or when bent down. Is this 4 Xtani pills daily??

Doug

Kevinski65
Kevinski65 in reply to Tjc1

I may have to get off Xtandi due to upper respiratory problems. Anyone else have this complication? Seeing a pulmonologist. Just put through breathing , lung function tests. 6 months of coughing up phlem. I've been on Xtandi for 3 years.

youtube.com/watch?v=d-diB65...

Good Luck and Good Health.

j-o-h-n Saturday 06/02/2018 10:33 AM EDT

greatjohn
greatjohn in reply to j-o-h-n

yup!

Hidden
Hidden in reply to j-o-h-n

As usual you hit home runs for us bums..fantastic j-o-h-n , Robin Williams at his finest...Thanks!

Safe travels brother

Provenge should not be a big bother for you. My side effects were minimal. Good luck!

greatjohn
greatjohn in reply to YostConner

Thanks...feeling better already .

Hidden
Hidden in reply to greatjohn

You’ve got support..

party hard and live large Pal!!!!!!

Not to scare you but I do not think that your insurance would cover any event that involves or could be associated with your PC. That said, still go for life is for living and yours and mine are short!!!!!!

greatjohn
greatjohn in reply to billyboy3

I didn't either...but they insisted that they would. ☘

Gleason 6 is easy to get under control. Dont know why he suddenly says it is aggressive. Gleason scores dont change. I would have chosen Zytiga over Xtandi because I heard Xtandi should be given after other drugs have failed. There is alternative hormone therapy combining Ketoconazale with Estrogen patches (quitting lupron) + prednisone for hormone supplementation. Zytiga is a newer drug. Hope your oncologist knows about them.

I had zero side effects with Provenge. Needles are scary because they do the white cell extraction on a dialysis machine.

greatjohn
greatjohn in reply to abmicro

Gleason 6 was 4 1/2 years ago. After Radiation...psa did not go down below 2....then started to climb...then biopsy was Gleason 7....then HIFU....then the new Petscan (Axinum) and they found several bone mets in pelvic area and also several lymph nodes. My "journey" is "fast track" as I made my doctor laugh as I described it to him. I went from 0-60 QUICK ! ! ! I am castrate resistant and aggressive...hence this new therapy. Thanks & good luck on your journey ! ! !

Dan59
Dan59 in reply to abmicro

Gleason grade is determined by how poorly differentiated the small sample of cells are under a microscope, as they become more poorly differentiated over time and mutated the Gleason Grade can go up.

Provenge and Xtandi will help you. sure they control your PSA. But the trip will make you go down much more.

greatjohn
greatjohn in reply to joancarles

THANKS, I hope ! ! ! Gotta have fun (and get out of the HOT weather in South Florida in August/September)

~~John

You are young. Enjoy Europe. That is the goal of the hundreds of thousands of dollars your insurance is spending on life extension treatments. Hope Provenge does not screw up and destroy one of your infusion bags causing you to add another 2 weeks to your Provenge treatment. It may throw off your schedule. (Happened to me). Allow for contingencies.

greatjohn
greatjohn in reply to abmicro

I'm praying for best...but my doctor told me to get insurance and he put in the notes yesterday that I was "healthy to travel at this point"...I bought the insurance yesterday....so it's suppose to cover EVEN an existing condition...if you're fit to travel when you buy it. So, finger's crossed..but I'm NOT packing yet....LOL. (and it's 2 1/2 months away still)

~~John

Provenge isn't that bad, I did it 3 weeks in a row. I felt bad after receiving my altered cells back but just that day. I started this journey at Stage 4 Gleason score of 9. PSA went down to less than .1 for about 4 years, my PSA has again risen to 10.9 in less than 3 months. I was on Casodex and Trelstar, now I am on Xtandi and will start Firmagon this month as well a Xgeva. Enjoy Europe!

Thanks and good luck with the new combo.

Good luck on your new treatments and have a blast on your trip I’m sure it will all be good for your head ✈️

greatjohn
greatjohn in reply to bhr17

Thanks Ross.

Hi John,

My husband was diagnosed 14 years ago, Gleason 9, BRCA2. He had Provenge maybe 5 years ago. Only problem he had after second infusion was severe chills. After that, they wrapped him in heated blankets and he did fine. We are also going on a trip to Europe next week to celebrate our 50th Anniversary. All the kids and grandkids are going. It took me a while to talk him into going. One of his biggest concerns was he was almost completely incontinent. About 3 months ago he went in for an artificial sphincter,and thankfully, that is no longer a problem. It’s a tough journey, but we have enjoyed so many good times a long the way. Hope you have a wonderful trip.

Susan

greatjohn
greatjohn in reply to Craigslife

Thanks so much...I wish you all a GREAT trip! ! ! Since I'm HOT all of the time...and with the added bonus of HOT flashes...and LIVING in South Florida...some chills sound almost pleasant...(lol)

Hidden
Hidden in reply to Craigslife

Thanks Susan , very encouraging for us beginners..

Have a great 50th anniversary, m'Lady. It is ours too this 19th Aug. Only thought which mars the expectation is the recent find from PSMA Scan of widespread mets almost the whole of the upper body. I have no symptoms though, so we are going ahead with the celebration!!

Hidden
Hidden

Sorry man , this sucks, mama Mia. Sounds like more bills to pay. Hope this new stuff will break the mold of your APC... I had forgotten that you had started 3yrs back like me...feeling great besides no t effects or Lupron is just about all that we can ask for, besides getting that dreaded Psa down. Good luck greatjohn ! Good that you’re enjoying as much as possible....keep spirits high amigo...

You will have a ball on your trip and you can carry on kicking cancers butt when you get back. Have an awesome time. 👍

GreatJohn,

I'm fairly new to the site but sounds like we have a similar path with this cancer. I'm still in stage 3 but PSA quadrupled in last 2 months so after about a year of just Zytiga, prednisone, and Lupron looks like I'll be on a new path shortly.

On the trip take it and enjoy the beauty and history that is Europe. I know its scary to be that far away from your doc but you'll do well. Push your limits and show this cancer who's boss.

Mine is grade 9 and I have had 2 bouts of Chemo, 1 Radiotherapy for a compression on my spine and now on Enzalutamide (Xtandi) but PSA up from 3, to 6 to 9.7 now.

I haven't stopped holidays and obviously take medical cover for prostate cancer.

Not sure whats next though as I was hoping that clinical trails could be an option as the Xtandi has slowed it down but with it being a grade 9 then the aggressive nature is more than the treatment art the moment.

greatjohn
greatjohn in reply to paulparry

I'm not even sure what "grade" I am...LOL. I feel like I'm in pre-school with this disease ....but I'm pretty sure I'm in the fast track and being promoted up grades quickly! Good Luck, I hope your PSA starts back down...oh, and how was the Xtandi for side effects? I'm going to be doing it at the same time as doing Provenge. It sounds scary!

--John

paulparry
paulparry in reply to greatjohn

Tiredness but take it at 6pm so if I am tired by 9 its ok.

Constipation - least said the better.

Hot flushes but sage tablets work well for that.

greatjohn
greatjohn in reply to paulparry

thanks....I have always had such a perfect "movement"...that I haven't had any issue with drugs, chemo, radiation...YET. So I'm going to cross fingers that things "keep moving". I was constipated once on a LONG road trip and I did NOT like how it felt. Hot flashes ...I have gotten used to (sit in front of a fan and a ceiling fan constantly)

~~John

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