why can't he stay on casodex forever ... - Advanced Prostate...

Advanced Prostate Cancer

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why can't he stay on casodex forever and ever amen!?

pwallace
pwallace

hey guys,

it's been awhile since i checked in. we've been dealing w/some personal family stuff, and i've been trying to stay offline to keep myself sane. hope you're all hanging in there.

could really use some guidance if anyone is around & familiar w/casodex long term etc.

here's our unusual situation:

-husband had RALP & undetectable PSAs for 17 months before it started to rise again

-then he had IMRT (70 Gy in 35 fractions at 2 Gy per day) & Bicalutamide 150mg per day which lasted 11 months before his PSA started to rise again

here's the tricky part, while planning for next steps with MO (scans, genomic sequencing, next meds), his PSA suddenly went undetectable again & hasn't shown up since. nobody could tell us why this happened, especially when he hadn't changed anything med/treatment wise. it's been approx 9 months of undetectable PSAs.

here's the thing- he's supposed to stop taking casodex at the end of this month- that was the plan when he started radiation. but after that weird rise & fall, and after thinking about his particular pathology (intraductal carcinoma & tertiary 5) it feels incredibly scary.

with any other chronic illness, if it ain't broke you don't fix it, right!? why can't he just stay on casodex long term? he doesn't mind taking it at all b/c he's one of the lucky ones who has minimal side effects, and we'd be sure to keep up with bone density tests & heart scans etc.

his fear (and mine) is that he goes off the casodex, the PSA comes roaring back & then MO wants to do lupron, zytiga, the whole nine yards. side effect city. that's the way she was headed when we had that rise 9 months ago. "we've got to hit intraductal hard" --but my question is- why can't we ride this out & see where it takes us? why mess with a seemingly good thing!?

if anyone has done this, can you point some studies or research my way?

would be forever grateful.

thanks,

summer

ps. i've attached an older pic of my grumpy kiddos b/c that's how i feel about this WHOLE thing, grumpy. (please note- also incredibly grateful to be on the downward slope at the moment. i know how quickly these things can change.)

52 Replies

Because he is taking Casodex as ADJUVANT therapy with curative intent, not as lifelong therapy with maintenance intent. If it wasn't cured, Casodex is a poor choice anyway b/c it eventually may feed the cancer.

Bounce in PSA was probably from some cancer cells dying.

pwallace
pwallace in reply to Tall_Allen

thanks for the response, allen. wonder why his MO didn't refer to this rise as a bounce! i was thinking a bounce could only happen w/first line radiation treatment. that would obviously be best case scenario over here- but with his pathology i didn't think the stats were on our side. could he go back on casodex if PSA starts to rise again?

Tall_Allen
Tall_Allen in reply to pwallace

You committed to a curative therapeutic strategy and nothing happened to kick you off course, I don't understand your cold feet suddenly. I also don't understand the Casodex - if you believe that his cancer required aggressive treatment, Casodex is the least aggressive option.

pwallace
pwallace in reply to Tall_Allen

cold feet b/c this whole thing has been v scary since day one. his dad died at a young age from this disease & we've been told my husband's pathology is adverse & we need to be aggressive. can't speak to the casodex choice b/c that was up to his team at the cleveland clinic. his MO in california is the one who has mentioned other therapies. so my question remains- could he go back on casodex if PSA starts to rise again? (just trying to prepare questions/thoughts for next appt!) thanks!

Tall_Allen
Tall_Allen in reply to pwallace

Same answer.

pwallace
pwallace in reply to Tall_Allen

understood :-)

treedown
treedown in reply to Tall_Allen

TA is my memory correct that sometimes radiation can have bounces and/or other effects up to 2 years after the treatment ?

Tall_Allen
Tall_Allen in reply to treedown

This is salvage, but whenever cancer cells wake up and die, there will be a transient PSA increase.

treedown
treedown in reply to Tall_Allen

Thanks TA, I usually miss something of relevance when reading about others treatment.

Wow! What beautiful children . A reflection of the parents . My heart breaks to see such a young family suffer APC. I don’t have any medical advice .But i am pulling for him and you all . We walk on eggshells .. You are a strong leader . A lot on your shoulders . Keep the faith .. Love is the best medicine . 🙏❤️

pwallace
pwallace in reply to Lulu700

thanks & yes, love is everything ❤️

PWalace,

Three cute kids in your photo. (like the three musketeers!)

Casodex did very little for me. Do not fear Lupron, Zytiga , and the whole nine yards. Many men have little side effects. Me for one, some hot flashes that pass as quickly as they occur, some fatigue ,definitely, and Testosterone levels of near zero, so you know what that means! All tolerable. Other than that, Zytiga I feel is primarily responsible for my incredible undetectable PSA 6 years now. Started with DX with Stage 4, Gr 4+3 with 6 bone mets and PSA of 71.5

Like Lulu 700 said, as always, keep the faith!

Wings

6 years with zytiga! wow that's wonderful! i don't love that we have to be on this path, but it's so good to know there are many different treatment options if/when we need them. will try to stop being scared of lupron etc. thanks for the note.

Aplutimides beat bicludimites.. ...lupron/erleada....good approach

There is a planned attack by SOC agents and they do not get tired of badmouthing casodex..a perfectly good medicine. They need to scare you in order to shovel heavy meds whether you need or not.I am on Casodex 50 mg a day for last 8 months and my PSA is 0.4 . ALP is 50. MRI showed bone mets are invisible now. I plan to continue it as long as it works. Our fellow member Magnus was on only Casodex for 5 1/2 years. There is other member who was only on Casodex for almost 8 years.

If Casodex is working ,I will continue with it with close monitoring of PSA and ALP. Try not to discard a medicine which almost has no side effects in my experience.

There are a few things you can do to make Casodex last longer...Make him eat Cauliflower, Brocolli ,Radishes, Mustard Greens every day (at least one of these) They have Sulforaphane which prevents Casodex from losing effect. Also, there is a supplement called MSM with optiMSM (Doctors Best) which contains organic sulfur compounds and may prolong Casodex efficacy.

Do Not be scared of SOC peddlers trying to scare you...The key is to carefully monitor his PSA and ALP. I will do blood test once a month. As long as they remain good. .ride the best drug ,Casodex. At some point if PSA and ALP starts rising, then its time to go for other stronger meds with stronger side effects.

Hope u r not talking about my reply..lol BTW what does SOC stand for?

Not at all. There are men for whom Casodex work wonderfully. Then, there are some men for whom Casodex does not work or works only for a few months.If casodex is working well.. why there is hurry to stop it....?

Yes good point.....and I think I misread PWalaces' dx....not advanced PC as of yet.....Also, so SOC might be Standard of Care? or???

i don't know where we fit on the PCa spectrum. after surgery he was 4+3 with tertiary 5 (EPE in two places), but he had a rare cancer called intraductal carcinoma, so docs were on high alert. and then surgery was only successful for 17 months before needing IMRT. and then we had a rise after, but tall allen thinks it could have been a bounce. feel like we're dangling in mid space. trying to be hopeful!

and yes SOC is standard of care! :-)

pwallace
pwallace in reply to LearnAll

thanks for this, learnall. just started reading through the archives about others' experiences with casodex. as much as we understand & respect SOC, quality of life is so important. and casodex is obviously very effective, or i don't think his docs would have treated him w/it in the first place (dr. ornstein & dr. tendulkar at the cleveland clinic). lots to think on. thanks for taking the time.

LearnAll
LearnAll in reply to pwallace

pwallace...I was on lupron and zytiga for initial few months . Before lupron and Zytiga, I was on 50 mg/day of Casodex and in first 3 weeks my PSA declined by 88%. I kept wondering when Casodex is doing such a fantastic job..why they refuse to continue.Recently, I found answer to this question in a video by oncologist Mark Sholtz who was asked why Casodex is only prescribed for first 2 or 3 weeks and not continued. His answer was enlightening and interesting. He said that when Casodex first came out, it was very expensive and Insurance companies would not pay for it. They wanted Lupron which was cheap. So there was a middle ground negotiated among SOC drafters who made the guideline that Casodex use should be limited to only 2 or 3 weeks.

My Oncologist was not happy when I said last year that I want to try only Casodex as Lupron and Zytiga are corroding my body. I never had high blood sugar but I developed Diabetes, I had mild Hypertension but it went to severe Hypertension requiring 3 meds to control it. My fatigue was horrendous, I am a brain worker and use my brain a lot..I started to forget names and had slowed cognition and difficulty with concentration.

I rebelled against my Oncologist and refused to be on anything other than Casodex. I think that was best decision. My Blood sugar went back to normal ,,BP came down,,fatigue evaporated and my T came up to 455. I was happy again,

Its only 8 months on Casodex monotherapy but I feel great..walk 5 miles a day, sing and dance every day. I do check my PSA and ALP every 2 weeks and pay out of pocket.

I am a fan of Casodex. I am researching how to keep efficacy of Casodex for long time. Organic sulfur, Ivermectin, Niclosamide and Carbidopa are some of the things which have capacity to keep Casodex working longer.

I noticed that your H has intraductal histology which is somewhat concerning and therefore close monitoring of PSA , ALP and LDH is absolutely necessary. As soon as you notice the biomarkers going up..it s time to quickly switch to Lupron +Zytiga or Extandi.

And recently I found out that researchers are trying to make Casodex with some kind of sulfate salt. This altered formulation can be patented again and sold for $10000 a month. I am keeping watch on these research papers.

pwallace
pwallace in reply to LearnAll

thank you thank you thank you. very interesting info, learnall! will find the Mark Sholtz video & watch now. (he was actually the first doc we saw back when we lived in los angeles!) and yes, the intraductal piece makes all of this more concerning, so we'll definitely stay on top of labs and the like. i love that you sing & dance every day.

winkoliu
winkoliu in reply to LearnAll

Take Berberine, make Casodex continue to work. Studies showed that Berberine contributed to the reduction of the truncated AR-V7 spice variant, Berberine could sensitize prostate cancer to the treatments such as Casodex, Zitiga and xtandi.

I would ask my doctor about that and demand an answer. I don't think quitting any drug that is working is good medicine.

pwallace
pwallace in reply to Magnus1964

thanks magnus, did you end up having to stop casodex? how are you doing now?

Magnus1964
Magnus1964 in reply to pwallace

I was on casodex for for 5 years. Then my PSA began to rise.

dear all- thanks for the responses. just read cleodman's 10 things again & feel the need to be quiet & trust in this process. it's HARD but necessary, me thinks. good night to all xx

Your main problem is that it is intraductal. PSA is not at all a reliable indicator, whatever you use.

I have had OK experience on 50mg bicalutamide. There are differing stories on whether 150g is better. It is a "gentle" anti androgen. But at our stage there are no long term fixes. Our nasty critter always finds way to become resistant to whatever we throw at it. But you must remember that when bicalutamide fails, it promotes the cancer - another reason for close monitoring.

Intraductal is a nasty and aggressive bastard and I guess most oncos would agree with yours. Hit it hard and early. ADT, abiraterone for starters.

Your decisions must be based on the scans, alkaline phospatase etc not the PSA. I don't know much about intraductal but others here do. TA and Nalakrats among them. I seem to remember that PSMA scans are not useable with intraductal but there may be other scans.

pwallace
pwallace in reply to kaptank

yes to all of this!!! this is our biggest worry, the intraductal component. it's frustrating b/c his doctors say we need to treat it like any other high grade prostate cancer & yet time & time again we read the literature that says PSA is not a reliable indicator. so why are we relying on it? ahhh.

kaptank
kaptank in reply to pwallace

There is a possibility (and only that) that the treatment wiped out the normal adenocarcinoma (hence the PSA "bump") but left a population of intraductal that does not express PSA. (hence the undetectable PSA) That is why you need other means to get a handle on it (scans, bone specific ALP etc). It is a difficult cancer to treat and many normal treatments may not always work. I think platinum based chemos are sometimes used successfully.

Having said all that depressing stuff there is at least one member here with it who initially got their PSA to undetectable and nothing showing up on the other indicators, has kept it at undetectable (without SOC type side effects) for many years using a whole truckload of well chosen supplements and exercise. He uses good docs and naturopaths (is one himself). It is still there but "sleeping". I hope I am not misleading you because I am relying on an ADT raddled memory and not much knowledge. It might be useful to use the search function to find past posts.

pwallace
pwallace in reply to kaptank

really appreciate you taking the time to write, will use the search function to comb through old posts. there is so much to consider here w/intraductal which is why nothing ever feels straightforward (prostate cancer wise). thanks again & take care.

kaptank
kaptank in reply to pwallace

I speak for everyone here: very best wishes.

LearnAll
LearnAll in reply to kaptank

It is true that in intraductal.. we can not rely entirely on PSA.. because it will only tell us about that part of PCa which is Androgen Sensitive and releasing PSA. The cells which do not release or releases little PSA...Other markers become important. For Intraductal type..an assortment of biomarkers are needed to accurately assess the situation...These are .. PSA, ALP (BALP), LDH, Albumin, Hb, Calcium ,NL Ratio, PL ratio, LM Ratio. and Scans.

Intraductal does not mean 100% intraductal..it is mix of Acinar Adenocarcinoma and Intraductal Cells. Intraductal is one component only.

If I remember correctly..Nalakrats also has Intraductal variant. He can be a great source of information about Intraductal.

kaptank
kaptank in reply to LearnAll

Thanks for adding good information. I also have a memory that Nal has it. It might even be worthwhile for PWallace to check his profile and even send him a message. Lots of info in his head.

Hello,

Love the photo of the kids, give it some attitude ! 😇

I hope that this may help a little, I was on casodex and Lupron in the beginning. I was as sick as a dog during this course of treatment, although initially the PSA fell, it soon started to climb back.

Eventually I was put on Zytiga, prednisone and the Lupron. Try not to worry too much about this treatment, you can tweek it, the jab is now every 3 months, that helps with the side effects, the Zytiga dose can be reduced and so can the prednisone, once the results show to be doing the job.

I've been on the above for 3 years, going into the 4th, I started at 152 PSA, it's now 0.039, it has been a steady decline in the number over the three years. I feel really quite good, nothing like I did before.

I understand that "Mr Wallace " 😉, and I are at different stages, but you've got this far and the Zytiga has proven itself to be very effective for so many of us.

It's good to hear from you, we all wish you the best, let us know what action you take and how " Mr Wallace " makes out.

Phil

winkoliu
winkoliu in reply to Lettuce231

Take Berberine, it might make Casodex continue to work. Studies showed that Berberine contributed to the reduction of the truncated AR-V7 spice variant, Berberine could sensitize prostate cancer to the treatments such as Casodex, Zitiga and xtandi.

Lettuce231
Lettuce231 in reply to winkoliu

Thank you for your advice.

Phil

pwallace
pwallace in reply to Lettuce231

thanks for sharing your story, phil. it's always good to hear from others who are in various stages of treatment & doing well. going into your 4th year- wow, what a blessing! will make sure to keep everyone posted. ps. wallace is his middle name! his first name is tristan :-)

I agree with Magnus that you should really ask the Doc why he is stopping the medicine. He shouldn't do the parent answer, "Because I said so!" :)

Unfortunately, this stupid disease isn't a "One size fits all" type deal. Like me, my cancer kinda sort of isn't aggressive because it's pretty low on the Gleason Scale, and when my PSA goes up, it goes slow, but the longest any medicine has lasted with me is about 9 months when the average supposed to be 2-3 years.

Even though all that shit sucks, I'm going on almost 4 years now and even though that can be frustrating, I'm not leaving anytime soon.

I know as a mom and a wife you can't help but worry, but it is okay to lose to cancer.

It's not okay to lose to fear. When you worry and get filled with fear, it makes things worse.

I'm speaking from experience.

thank you for this. really needed this reminder. fear and worry are so pointless & yet it's almost a default setting at times. thanks for taking the time to write. will take these meaningful words to heart.

Hi I understand exactly how you feel. My husband, 55, was diagnosed with (metastatic) intraductal PCa in July 2020. Urologist was not interested in discussing what intraductal meant when asked. My husband was not offered any local treatment and is taking Trelstar injection (3rd due soon) along with Casodex 50mg at the beginning 6 weeks to deal with the T flare. He is keeping fit with exercise, gardening, and eating extremely healthily vegan foods. There is a lot of pressure from different people I consulted to put him on Zytiga and Prednisone. We are wondering about cytoreductive local treatment such as RP and/or RT. Right now my husband is doing very well (better than he was a year ago when he was complaining of hip pain and still the urologist monitoring his rising PSA for months did not move quickly enough to biopsy). His hip pain started to improve as soon as his diet changed (before medication) to complete vegan, no sugar or processed food. Encouraged, he does not indulge at all. He is working full time. It is difficult to decide what is the next best option for him as the current regime seems to be working well for now. We are taking our time to decide based on the latest scans, PSA, all opinions and research we can get hold of and his overall health. We have determined not to decide on the basis of fear and pressure. I send you and your lovely family the very best wishes and hope that you will decide what is best for you all. Your kids are adorable.

Turt713171
Turt713171 in reply to spw1

Have you considered an oncologist?

spw1
spw1 in reply to Turt713171

The system here involves a decision-making committee that approves treatments and meets once a month or something. The patient does not see anyone but the urologist who talks to the committee. The histology report had suggested a local MRI for a better staging but nobody wants to give an MRI. We would very much like never to see the urologist who was lackadaisical when he was monitoring my husband for almost a year with rising PSA and hip pain without suggesting cancer. After some effort, we managed to get a referral to an MO. We are waiting to hear from him. At least he has got us CT and bone scans in March.

pwallace
pwallace in reply to spw1

yes you definitely get it! it's really hard to understand what you're dealing with in regards to intraductal. and there doesn't seem to be a definitive expert in this arena. we want to take our doctor's advice, but we also want to make sure we're doing enough, especially b/c the same rules don't seem to apply here! anyway, my husband is the same way with health, working out & eating well. one thing he's done over the past year that has really helped him with inflammation & the like is hot and cold therapy (sauna & ice baths). has your husband done this? so sorry you're on the same boat w/all this uncertainty. keep me posted with your husband's care & i'll do the same here. xx

spw1
spw1 in reply to pwallace

Please do, thank you. Yes, my husband is doing short cold walks in his tee shirt and shorts (even on -15 days), cold showers and hot tub. Everything possible that we can do, we are trying as it is a complex disease and requires this multi-pronged approach. I do not think that all doctors know much about intraductal but I have been keeping notes from readings and it does not respond that well to chemo apparently. It is one of my notes for future. In any case, chemo is not an option for my husband's work requires him not to risk neuropathy.

My own results with cassadex were very good.

I was diagnosed with prostate cancer in 2002, had a radical prostatectomy in 2002 and radiation in 2003. My PSA stayed low for almost 10 years until it finally hit 4.0 and I went to MD Anderson for an opinion.

They immediately suggested that I go on lupron and a zytiga trial that was just happening in 2012. I came home and talked to my MO in Denver and he suggested cassadex.

My PSA dropped again for 6 years until it finally came back to 4.0 and I went on lupron. After 2 years on lupron my PSA started rising again and I started on zytega which did not work at all. My PSA jumped from 4 to 15 and with the advice of my MO, and a lot of people on this blog I decided to go on the doxataxol chemotherapy. After two sessions my PSA is dropped from 15 to 2.5 and my Alp has dropped from 238 to 98.

I got a lot of years out of cassadex, with very little side effects and good results. I know that is contrary to a lot on this blog, but if I were you, I'd ride it until it fails.

Just my opinion. Good luck.

Tce

wow, there seems to be a theme here with 5 or 6 years on casodex before failure w/quite a few guys on this board! so happy to hear this. i know every case is different, but i do appreciate hearing from others who have been there/done that. i understand why our doctors defer to standard of care, and i respect them so much; i just wonder why cancer is treated so differently than other chronic disease (when so much of PCa ends up being chronic in nature). anyway, really appreciate the feedback. glad to hear your PSA & Alp has dropped. wishing you the very best.

LearnAll
LearnAll in reply to pwallace

Simple answer: Because your Doctor gets his education from sales reps of big drug companies and has stopped using his own my after completing residency. Books and journal have lot of dust on them.

I also had good luck with 150 mg of Casodex.. Kept my PSA low for 6 yrs.. YEAH..!!Only reaction I can remember is I grew some man boobs but they didn't hurt me at all.

And this treatment was from my first and best Onco that I ever had.. I really miss her..

She suddenly left the treatment center where I was going and I found out from the nurses there that she moved to Nashville & had a job at the big Vanderbilt Univ there as a cancer

reseacher/Dr. Instructor.. Tells me much about her abilities.. And it was great that she had been able to work alone.. My next Onco I had for a couple of years I ended up firing her..

Now I am with a new "group" of Dr's who only do the SOC of the NCCN and I am not sure

I am happy with that.. They will not deviate one iota.. When my PSA starts rising I am

thinking I will go to a higher institution to try to get into some sort of clinical trial..Thats my .02 worth.. Good Luck

pwallace
pwallace in reply to HamGuy

thanks so much for writing & sharing your story. 6 years! so great! so sorry to hear about your oncologist experience. wonderful doctors are such a gift. medicine without a soul is not fun. best wishes your way

Wallace, Great Kids - I want to second the use of Casodex as long as it is working. I am at 28 year PCa survivor( after surgery 28 years ago & BCR 21 years ago) on Casodex for 3 1/2 years (PSA =12.2 w/lymph and 1 bone met at start of Casodex) and Now PSA =.07 and starting to rise from a low of 0.015 on Casodex in the last year. I hope to ride it a few more years and when I stop it I will hope it will drop to zero (20% chance) when cancer is deprive of the Casodex as a food. One of the men in my support group had a rising PSA on Casodex after a few year at Age 48 ( Gleason 10) he stopped it, cancer Died and is undetectable now at age 60 with no treatment. For more information on add on treatment with Casodex see website for peter's notes at rvaprostatecancersupport.org Best Pedro Luna

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