We hadn't taken a PSA for about 6 weeks. His psa went from 55 to 64 in that time.
It was the alk phos that scared us, it shot up to 740, I honestly can't remember the number.. it was at another blood lab. Though it was significant, maybe by 500. (pretty much freaked us out).
We decided to begin Casodex immediately. To be followed 7 days later by Zolodex.
7 hours after the Casodex the pain shot up in every spot on the scan.
It flared in places it he had never felt, although scan had showed activity.
Example, he's had T12 tumor for 13 years and never felt it before.
Every spot, T12, L4, Right hip, Tip of tail bone, all gave him pain that hit about a 7.
We took more opioids. He was only on 1/2 oxy 5, and occasionally a 5. We needed 10 every 4 hours.
Our doc thought it could be a good sign since he was getting a reaction and said it should begin to drop in about 1 1/2 days. Sure enough it dropped. We lowered pain meds.
At day 7, Friday got the Zolodex shot. I had a gut feeling the alk phos was so high that he might still get a flare.
The pain did spurt a little, not much for a day. He's since back to either a Norco, or either a 5 oxy, but mostly a 2 1/2.I believe the pain spurted a bit but not much and he's dropped his pain meds to 1/2 ox 5 from taking a 5.
We tested again the day after the Zolodex on Saturday.
Since he looks better, much less pain, feeling good, active, sleeping at night without having to wait for meds to work and actually what has been another key is. The edema in his legs, that was causing hard calves, dropped entirely. His legs are back to his bony knees etc.
Today and my heart stopped because I opened his test result from Saturday and PSA doubled to 122. In our 13 years, his PSA never doubled, yet 8 days after Casodex and one day after Zolodex it doubled from 64 to 122. His Alk Phos actually dropped by 100 points.
I'm looking for an explanation since I am not in denial about PCa. I just know that it isn't coincidental that he doubled the same week taking meds, with all of a sudden his pattern changing.
Have any of you had experience what a flare looks like, acts like and any possibility on the positive side for this kind of movement.
What signals I saw were the flare to each spot seen on the scans giving him pain.
Then subsiding.
The really high alk phos, either needing more time on the casodex to make sure he wouldn't get a flare from the Zolodex. Although, the Zolodex was only taken one day before this high PSA.
So, in thinking about it.. one explanation is a Casodex flare?
I know we have to wait another 10 days for another test to see really what this indicates. To see if the Zolodex is working and then maybe get completely off the Casodex.
I'm so confused since he's doing so much better, dropping the amount of meds, got through impacted bowels from upping the meds and not quickly enough taking the laxatives needed. He's now having regular stools on Senna-S.
I need to think this through. I hate to tell him since he's feeling so much better.
His pattern over the last 13 years was never to double. And, after psa inching up for months, doubling in 10 days after meds. Any ideas that I can discuss with his doc about this. I haven't spoken to him yet, I just got the results and you guys are my go to for brainstorming. Thanks so much..
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Bluebird11
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thanks.. it is too coincidental.. but the waiting is gruesome.. I don't have the heart to tell him.. waiting for the docs thoughts on this..
what he may have to do is drop the casodex though who know.. we have till friday to wait.. thanks very much.. even though i'm shaking, i feel it's way too odd since it's not his pattern and co-incided with the meds.. the good news is his alk phos dropped 100 points..
Frustrating circumstances persist with every new round or uptick . You’ve proven to me that this is an endurance game. If we re lucky enough to make it thru the first round. He and I both were .. then we carry it to the end if something doesn’t get us first ?. Thank you for sharing your story . It helps many including myself . We haven’t figured out APC yet . If we had we wouldn’t have 10,000 and counting members. I’m pulling for you once again to kick the fan down the road . All I can do is pray for the best . You have a major role again to save him. It’s battle for all of us . Take daily walks if all possible .? ....anything to not think of pc is good right now. This disease is info overload for me with a non scientific mind ..Keep asking questions here. We do have some brains high i q folks that know as much as the doctors and maybe even more?? Stay well you two ..🙏 Peace bluebird .. we love our loca pinyon jays. 🕊
When my husband was first diagnosed in 2007 with the only sign being rib pain, his psa was 234 with Alk phos 440, 55 years old. He didn't know anything much since his personality, while quite bright doesn't do well with medical. We thought it best if I would handle the research and he would work on healing using not only the meds, but supplements, nature, qiqong. I didn't know if he would respond at all.. He did and within months he was down to 0.01. I prayed uncertain he'd live 1 year, then for 5 years. It's 13 years later. We can't honestly say what worked since we did so many healing things and very intermittent conventional meds, which has worked for us.
His quality of life, in between a crisis here and there, was very good. This is what became our motto QOL.
A retired well known urologist said.. always look to the horizon, have your back pocket things ready and go for quality of life. In our situation with grown kids, he didn't have the added burden to take, as with men who have young children and try everything conventional to challenge this thing. I feel we all take into consideration who we are and with 2 very good oncologists, one in private practice, solely a PCa oncologist and a local one we've been able to continue.
It's a tough game for many. I always say the cancer tries to kill you before it can actually take your physical body. It's the fear, the side effects, the loss of so many things. It's a trip in life that we don't ask for or want.
I will stay hopeful. My gut says, this could very well be a cancer die off since this week he has improved greatly. He looks better than ever. Tired though just began zolodex.
And for couples, the challenge is that our relationship issues are still there with the added burden of this. The caregiver takes a different brunt of this challenge. I'll write as soon as I get any information. We will retest on Friday. We can then get more information.
Just a guess, but with such a high Alk Phos, and dropping 100 points, he has had to have a lot of bone turnover thus cancer load.. of course, I feel this is the case with what LearnAll said as a possibility. I thank each and everyone of you with all my heart for being a lifeline in these confusing times.
Looking better than ever this week. That’s priceless ! I hope newbies can see your post . Turning 1 into 5 into 13 is proof that others can do the same. Our caretaker spouses and anyone who loves a man with pc can feel the the pain and see the turmoil firsthand .You encourage me to think that I too might extend my life a little further ... This might sound weird or convoluted . He is one of the lucky ones to bet the odds with a pretty good QOL ...so am I so far .. TG ..Good luck Friday . Your docs sound good to me.. I’m very glad that you are posting .. peace bluebird 🙏🕊🕊🕊🕊🕊
I did have a flare in Alk Phos after starting Casodex. ALP went up from 191 to 490.shocking !
But then, ALP just kept falling and ended up at 59 in total 5 months.
I will be really worried if both PSA and ALP rise at the same time.
There is speculation that sometimes when cancer cells die at fast rate, a chunk of PSA is released quick;y in the blood ...giving high PSA reading....lets hope it is this way in for H's case.
actually LearnAll the alk phos dropped 100 points in 7 days, but the psa doubled. this is not his pattern at all. it isn't coincidental to me that upon taking casodex with a flare, (and he did have a flare with it, meaning that all the hot spots gave him pain only to drop the pain and lowered mets.). that his psa would double.. does this make any sense. and yes, i'd be concerned if both rose but they didn't .. i'd appreciate your thoughts on this.. thanks.. waiting for docs thoughts..
I just reread your post. And, it is a comfort to know that when cancer cells die at a fast rate a chunk is released into the blood.
Honestly LearnAll after 13 years of much good and a number of these challenges, we've experienced so many things. I am hoping that beyond hoping. I feel this may be the case. This sentence you wrote is in keeping with what he experienced.
He had an immediate response to the casodex. I am hoping but want to thank you.. since I didn't correctly read it until now. I'll keep you posted..
The hard thing is he is so much better and I don't want to worry him since he's having a good day. This is brutal to go through and I have such great compassion for all of us who are working this, the best we can.. xxxoooxxx
Bluebird..I keep track of my blood numbers (dozens of them) every two weeks. There are many things in blood tests that can give a strong clue if cancer is progressing or backing off. Some are Neutrophil to Lymphocyte Ratio (NLR) , Platelets to Lymphocyte ratio (NLR), Albumin, Hb% , C reactive protein and LDH.
Keeping a graph of each of these markers can tell you whats really happening to cancer. Because PSA and ALP are important but sometimes not enough to give full picture.
Not sure if you saw it, but I did post this in the last thread you started: Casodex may be contra-indicated in men that have previously used it.
Casodex works by acting on the androgen receptor. After initial success with this drug, it has been observed in some men that their PC mutates to find a work-around, and Casodex ends up helping to feed the cancer and promote PROGRESSION, rather than regression. It shifts to acting as an AR agonist, rather than AR antagonist, as intended. Doesn't this sound like it might be a possibility here?
This has been called the "Benedict Arnold effect" by oncologist Dr. Bob Liebowitz, and it should be discussed with your doctor(s). If it was me, I would stop the Casodex immediately and never use it again. A first-generation antiandrogen is NOT absolutely essential for continued use in an ongoing campaign against PC that is in its thirteenth year!
"In this report, we describe 5 selected patients who demonstrated a rapid rise in PSA shortly after the initiation of bicalutamide 50 mg for advanced metastatic prostate cancer. PSA levels declined in 4 patients and stabilized in 1 patient after discontinuation of the drug. In 2 patients, the PSA rise was accompanied by subjective disease progression. Pain levels dramatically decreased after both patients stopped bicalutamide treatment."
"we demonstrate for the first time that within only 6-13 weeks of in vitro exposure to bicalutamide, LNCaP-FGC cells, whose growth had initially been suppressed, came to use bicalutamide as an AR agonist via W741 AR mutation to survive"
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