"if it weren't for bad luck, I'd have no luck at all..."....LOL.
61, Pca at 57, Stage 4 at 60,
I just got my most recent PSA from online...(I see the Oncologist in a few hours) but, alas, it went up AGAIN. This after a year on Lupron, six sessions of Chemo ending in February of this year. It went down slowly until the chemo ended...and now has begun it's gentle climb back up...from 1.1 (the lowest my PSA has gone PERIOD since starting treatment 4 + years ago) just after Chemo ended...to 1.83 on last test...and now ...today....Voila 2.4
I'm being thankful that's it not higher. Every time I get mine checked I have myself geared up the be "thankful" for what is really NOT good news. NOW, when I see the Oncologist, I'm hoping to NOT have to start any additional treatments --Cassodex, Xytiga(or something like that)--for about 3 more months~~ so that I can get a planned 3-week holiday. to Europe in late August over with at the same energy level I am at now with just Lupron. It's bad enough....LOL.
Oh, well, I will hear what the learned Doctor says in about 4 hours.
Life Is Beautiful!
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greatjohn
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Best of luck for your upcoming doctor visit. I’m going to say a prayer that your PSA will go back down, and that you’ll get the break you need for your upcoming Europe trip. Holiday to you, vacation to us in the USA.
Keep the faith, brother! Life really is beautiful.
Good Luck John. Seems we are in the same exact boat. I went on Wednesday and mine jumped from 1.99 to 2.74 in two weeks. Joy! That might answer your concerns about the Lupron, (Ha!) Let us know what the MO says.
Mine did the same thing after Chemo. I only lasted 3 months on Casodex before failure. I have been on Zytiga for over a year and have traveled the world. When traveling you have much more energy than you would have at home. All in all it is not a bad next drug. I have not really had any significant side effects the PRED will help with energy and appetite. My only side effect I blame on the PRED is weight gain which I also blame on my feet nephropathy from the chemo. If you do change it up and you feel tired in the morning take it in the evening. The only issue is a empty stomach so first think in the morning or 2 hours after the last solid food. Good luck and have a fabulous vacation. Post some pictures it makes all of us happy when one of us has a good time. Bon Voyage!
Hang in there buddy, thankfulness is a great thing. Attitude is a big part of it. A rollercoaster for sure!
Your experience is fairly close to mine. My PSA at nadir was a little lower, but came back up after fairly quickly after chemo. Mine starting doubling every three weeks after a year. My doctor said he often sees the PSA bounce back up with guys that do early chemo with ADT. I let it go up to around 26, then started Zytiga.
Since I started Zytiga about 6 months ago, my PSA went straight down. Last check was undetectable. Based on my response, my doctor said I might go 1-2 years on it, but of course there are no guarantees. No side effects so far.
Good luck with treatments, hope you get something that works for you.
thanks...this was a while back. I am now on Xtandi and I have also done Provenge. My PSA went down as low as 0.86 but it bounced back up to 1.2(ISH) the last time I had it checked. I had just had a Axumin pet scan and it showed LOTS of improvement with almost half of mets disappeared and the remaining shrunk....so I'm hoping the uptick was a fluke and it will be back down under 1 at least....or...like you, lucky guy....undetectable. Happy New Year(and many more)
I realized after my post that this one was 7 months old.
Glad to hear you are doing well. My friend Charles (Ctarleton) has had a PSA of between 1 and 2 on Xtandi for 2 years now. His PSA is just over 2 now, but staying with the program.
I got used to Psa going down, then bouncing back up like a football which is not circular so the direction of bounce is un-predictable so each time the bounce occurred its back to square 1 and new drugs must be tried. When ADT on its own failed after 6 years, Cosadex was added, but that "lasted" 6 months, then it was stopped, and Zytiga given which lasted 8 months, then stopped, then Docetaxel seemed to fail after only 4 infusions so Lu177 was booked. The 5th Docetaxel confirmed chemo was almost useless. I've now had 3 x Lu177, Psa has moved from 25 to 17, so basically Lu177 has not done very much at all except that all soft tissue mets are not able to be seen in PsMa scan, and 4 largest bone met sites have decreased but Pca in my hip seems to be increasing. In the beginning at diagnosis Psa was only 6.3. When RP was attempted some 4 months later, they found Pca was well outside capsule and they could not see my PG to be able to continue so the RP was abandoned, and I got EBRT and ADT instead. But my Psa was very low for the amount of Pca they found, and in many other men with advanced Pca at diagnosis my Pca seemed like that of a man with Psa maybe 100.
So although my Psa is very low now at 17, I have hip pains so probably the same thing applies, "has low Psa but high amount of Pca present".
The doctor I saw 2 days ago is aware now that Lu177 is not going to work as well as hoped and she thinks I have mutated Pca in hip. This doc has been aware of very many Pca cases and has been involved in research studies, so was able to offer some further positive ideas, including going back onto Zytiga because she thinks most of my Pca has been re-sensitized to respond to Zytiga again. But my portion of Pca that may not be responding to Lu177 may have lost its ability to express PsMa and therefore not attract Lu177 + ligand to hook on so Lu177 has no effect. Having DNA tests done for Brca2 genes and maybe use of PARP and other high fallootin treats are now being considered, and she said that there is hope for many men when Lu177 has "failed", ie, it has not destroyed all Pca. Pca becomes variegated over time and the rate of change to cancer DNA can be slow, giving some time to figure out what to do without guesswork, or fast, so that everything becomes experimental.
30%+ of men diagnosed with Pca will die from it. Many will die from side effects of Pca treatment or from something else so that the 30% figure is misleading, and maybe its more like 50%, but I have survived nearly 10 years after diagnosis in 2009, and so far, my cancer has been slow growing. Maybe slow to mutate, so maybe I have some time to enjoy. I have zero plans to travel anywhere because my lifetime has been and continues to be uncertain, and my sore hip indicates I may lose mobility. But I can walk 2km. But I cannot cycle now because of hip pain when I try. The doc I am seeing for Lu177 said she wants me back on my bike asap. but because I can walk, I can also use a pick and shovel and wheelbarrow and I am doing some serious real work to complete home projects of new fences, re-paving, replacing floor coverings, so there's something to do every day for a few hours to raise a good sweat. I am trying to get my house to allow a live-in carer person maybe, or have ppl to stay. Before 1993, I gave up building work and house renewals because of bad knees. But knees were replaced in 2017, so I can do building renewal work again, even despite the hip. If I can do stuff, I will, there's no time to sit around depressed or being fatigued. I don't have a partner or any kids so whatever I do during my last days does not affect anyone else. I'll probably die wishing I could be in the yard working, or on my bike going up a steep hill........
Going to Europe might seem nice, but for some unknown reason I have never had any urge to go; I have seen much of it on TV, and the grand architecture is a product of kings and slaves, the past was so unfair to so many...… and I can be happy with so little without needing expensive aeroplane trips. I think what really killed my desire of OS travel was that I saw so many others go OS and spend huge sums of money, then expect life here to be a permanent holiday when they got back.
Many women I met and courted indulged in expensive travel and so the expense of having anything to do with them was vanity & stupidity, and none liked riding a bicycle, and they all hated marriage; after love faded they thought me dull and boring because I would not travel, and I'd ask them "what with?" because all my dough was on the house expense and paying off the loan, and I said nobody can have everything. Despite absence of a Good Woman, I made a good life here, and going to Italy or France would never have made it any better. I never ever met anyone who could just settle down, and focus on being good to other ppl, and live frugally like me, and be happy, useful, and feel fulfilled, permanently, as a result. So now each day is precious, helpful doctors seem like angels, and all the undone pleasures I might have done at 30 just don't matter at all. Because of my frugality in the past I don't have to pay rent now, and I can afford the high costs of medical treatments not all covered by Medicare.
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