I just got my first 3 month Lupron shot on Tuesday. Am I supposed to continue taking Casodex as well? My MO is taking forever to answer. UPDATE 2/7/2020: My MO just said to stop taking it. We're doing a PSA test 7 weeks after my Lupron to see where we are.
Thanks
It’s used to prevent a spike in T when starting ADT. I was inadvertently left on Bicalutamide after starting Eligard (Lupron equal). Urologist noticed that his NP renewed my Rx about 4mo’s later and was not too alarmed. He said “we sometimes use both... but you don’t need it”.
So in my experience, it won’t hurt if you have it on hand and until you hear from your Dr.
Good luck brother!!
Jc
I used both for three years.
Hi Fran, what happened that made you stop taking both? Did the PC become resistant?
The cancer starting "feeding" off the Casodex. My psa rose from 0.1 to 0.8. when I stopped taking Casodex my psa went back down for 30 months.
Oh I see. I'm pretty new to all this. I'm on Casodex and Eligard and my balls ache a lot. 😁
That's part of it, there's more things to discover. Good luck I hated Eligard, still have side effects and it's been 9 months.
DBB, as this is all new territory for me, I was wondering if you could share what Eligard side effects you had and what made you stop taking it, thanks 😎
Hot flashes, pain in scrotum, you know that, mood swings, tired, irritable, no erections, night sweats, my female friends describe all this as PMS. When I would grab a piece of paper or periodical to use as a fan, they would chuckle. Still have some of those but not nearly as intense as before. Hang in there we've all had to do more than we ever thought. Much luck on your journey.
Because you have a very aggressive PCa the doctor wants to combine Lupron and Casodex. The side effects are caused by Lupron, Casodex will not make much difference if added to Lupron.
I was on both for 8 months. The combination was tough on me emotionally. That settled down once I stopped taking the Casodex. I don't cry at movies or while watching Subaru commercials anymore.
Man i hear you. It did me the same.
After I stopped Gasodex night sweats reduced, emotions settled, PSA stayed down.
LOL, I understand brother, me too. Don't cry as much as before either.
Yes, it has a purpose. In this study patients who added bicalutamide were resistant after a median of 117.7 weeks while the patients who just had lupron were resistant after 60.3 weeks. 42.2 % of these patients had bone mets.
Absolutely, They both work differently. Don't stop the casodex, you can get a lot of mileage out it.
My MO said not to take Cassodex on a continuous basis because it MAY affect the effectiveness of the 2nd generation drugs.
Has anyone ever heard of such a thing?
Many thanks.
I have heard this but I do not believe it. E.g. when bicalutamide stops to work you can switch to flutamide which will work then.
Kaiser starts every 6 month cycle of Lupron with 21 days of Casodex, none after that. I am with Kaiser Santa Rosa.
My husband has been on both, starting with Casodex, for not quite two years. It’s the standard of care at the UCSD Moore’s Cancer Center. He had his final Lupron shot in December and will discontinue the Casodex by the end of this month. His PSA is <.01 and T is <.12. After March 1st, it will be a matter of watching and waiting. He has been lucky to have had minimal side effects from ADT treatments and from the radiation treatment. The main issues have been fatigue and total loss of body hair.
I wouldn’t stop the Casodex prior to confirmation with your oncologist.
If the doctor isn’t good about communication, I would encourage you to seek a second opinion. You must advocate for yourself and have a medical oncologist who specializes in prostate cancer or at least genitourinary cancers. It’s a long road that you’re starting down and you want a good support team. Best wishes, Mary
I was told to begin ADT in 2010 after failed open RP attempt. I was given Casodex for a month before first 3 monthly injection of Eligard, which was my first ADT drug. I was told Casodex lessened side effects of starting Eligard, and was never meant to be continuous.
I paused ADT after 2 years to see if the ADT plus EBRT primary treatment had worked, and Psa went from 0.08 to 8.8 in 6 months after my testosterone production re-started in my testicles. So initial treatment of EBRT + ADT for 2 years failed badly. I then re-commenced Eligard, with Cosadex for month before. Psa suppression was good between 2013 and 2016, and doc changed me to Lucrin monthly injects. But that made no difference, it failed, so I had extra IMRT to PG and then took Casodex continuously for 6 months, and that made Psa go low, but then it all failed to hold Psa down, so ADT continued and I began Zytiga after a month of quitting Casodex, and down went Psa but Zytiga failed after 8 months, and so Casodex did its part for me, but then I quit Zytiga and began Chemo which failed after 4 months and then I had 4 x Lu177 shots.
This got Psa from 25 to 0.32 last November, but Psa is now 1.4, so maybe Xtandi is failing, and I a day being scanned yesterday to see what is happening in bones or elsewhere and I may also need PsMa scan and maybe FDG scan and docs may just know what is best thing to do. Docs want me to continue with Lucrin injects but it is unlikely my testicles could ever work again due to long term use of ADT.
I am continuing to have a fairly good QOL and am able to cycle 200km+ per week at present, with few aches and pains. I am now 72. There's a fight to find out why Psa is now rising and to choose best plan yet again to delay the day when I begin to un-live.
Highest Psa was 50 after failed chemo, and since 2009 at diagnosis Psa has gone up and down like yo-yo and I have survived 10 years after diagnosis that was too late with low Psa of 6, but high amount of Pca at PG which prevented docs removing PG. Mets probably began well before diagnosis. I should have been diagnosed years before when Psa was < 3.0, but system here in Australia does not offer to examine men with biopsy until Psa reaches 5.0, which is 5 times the Psa of a man at 60 who is never going to have any trouble with his PG. Many don't, and they have no reason to post here. So I should have had biopsy in 2004, not 2009. If my PG had been successful and all PG material removed, my QOL would have been better with testosterone, and the expense of chasing the horse after it bolted would not have totalled $200,000 so far, with most paid by Medicare.
Politicians just do not hear me, they just hate dealing with problems of old men. Subconsciously they would like us all dead, so Govt does not have to pay pensions and medical costs of them getting old. Their wages allow best health insurance, plus best that Medicare offers. Its not THEIR worry.
Patrick Turner.
Hi PT, I just wanted say I too am in Australia and had an initial PSA of 50. I liked your post and feel your pain and frustration. I am 58 and while having regular medicals, having regular PSA tests was a not something given much dissussion or pushed by the Dr. Though Google tells me medicare funds one PSA test per year for males over 50. I suspect most men don't know and would not even ask for one. Women seem good at getting their mammograms, maybe one day having an annual PSA blood test will be more common place. One of the impediments to this appears to be the conjecture amongst the medical fraternity on the benefits of PSA testing prior to a PC diagnosis. From my point of view it now seems like madness not to encourage men over 50 to have the test. Well, that's my soap box for now. Keep strong brother and live to fight another day 😎
Had my first PSA test at 66 years. Stage IV prostate cancer. Surprise, surprise! Same dr. for 17 years. I didn't even know what a psa test was until it was much to late to stop the train. Drs should be REQUIRED to give psa test to men over 50. A person can then make a decision if things may need to be addressed. It's just like when they tried to take mammograms away. What part of early treatment may delay or even cure cancer do the politicians not understand? Guessing they might get a smaller bonus.
Yes they should but there is a malaise about getting any kind of successful treatment.
Its the potential of many unsuccessful outcomes that thwarts the PSA test process. One of the big issues is the identification of a locally organ confined disease. It is difficult to determine this aspect of the disease.
I opted for 3xADT( Leibowitz protocol 2004). My DX PSA was 4.7 and GS was 3+4.
I actually added 6 months to the protocol because my URO wouldnt do it at the beginning. I had to find another doctor to help me do it.
The PCa grading process is flawed. You can take a substance which can alter your GS dramatically and not even know you are doing it. These hormonal related drugs can change the look of your PCa cells. While these drugs lower your PSA they also make your PCa look more aggressive warranting a more aggressive treatment or eliminating a treatment option.
Some of these herbal remedies actually work better than RXs or other medical options. I took prostasol for about 6 months in 2004 and it did cut my PSA in half at a minimal dose of 2 pills per day when 6 were required.
I dont hear anything re: DES or PCSPES. Some friends take these and felt they are miracle medicines.
If you are in Australia, then you know how many men here are, they take the Egyptian solution - standing in de Nile.
I once spent a day at Murrumbateman, a small country village 30km northwest of Canberra at their agricultural show and the support group here had a tent to publicise Psa tests, and I had to walk my knees off to walk up to men and women walking past and give them a pamphlet with info about Pca and Psa tests. It was no use sitting in the tent, I soon found I had to move with the ppl and get a quick conversation going and leave them with something the women were very keen once alerted but many men could not respond, and this vast group of men will never go to a doctor, but must go when they cannot pee, or there's blood in the pee, at any age over 50, and of course many have Psa that is very high and Pca has spread everywhere.
I have had many more than 1 Psa test per year after I was diagnosed, and all were Medicare funded.
But before my diagnosis, I had yearly comprehensive blood tests to see what might be wrong with me, and it included a Psa test which increased so slowly that doctors too no notice until it got to 5.0. One doc said "You're too healthy to get cancer" and I had mild symptoms many doctors say are usual bothers of getting old. I was 60 at that time. But I don't remember ever having a Psa less than 3.
Men who never have any trouble with their PG have Psa 0.7 at 40, < 1 at 60 and I have a cousin 74 who has Psa 1.2, The silly "normal range" is 0.55 - 5.5. At 60, I didn't expect to be one of the 1 in 20 men who get Pca. And I didn't expect to see myself in the group of inoperable cases. But the probabilities are also silly things, because if you have 1 in 20 chance of getting Psa at 60, then as each year passes and you don't get it, while other men do, then the chances must increase.
I saw my father die at 60 of Melanoma, his mother died at 55 of Oa or Brca, one of my sisters died at 60 of Oa, and other sister got Brca, but she survived the double mastectomy and follow up HT etc and had had remission after 10 years.
My mother died at 98, so never knew what cancer was to suffer even though many of her friends died of it. Many went to lung cancer after 50 years of smoking.
I expected to get cancer after seeing my sister die of Oa, and sure enough, I got a bad case of Pca. So I've had 10 years of trying to keep Pca supressed, and the only thing that seemed to kill off many Pca cells has been Lu177.
All the ADT and add on drugs like Cosadex, Zytiga. and then chemo didn't work for long, and EBRT and IMRT didn't seem to have much effect. It sure did for some men, some of whom told me I had nothing to worry about because they'd had 2 years ADT plus 70 Grey of EBRT and Psa levels could not be measured soon after and their treatment was 10 years before, so they got remission. So they had a weak wussy form of Pca. In 2009, after biopsy I had 9/9 positive samples with Psa at only 6, and pathology found I had aggressive Pca, most common in younger men, and I needed an RP urgently, but after opening me docs could not remove PG - too much Pca surrounding outside of PG, so they could not proceed.
I was told later I was in the in the less than 1% group where this happens, but I think that's bullshit, and many men cannot have PG removed, judging by the numbers waiting to get RT when I got mine. That group of ppl I was seeing every day for 5 weeks was the sorriest lot of ppl I ever met, and I could say hello to many, and there was no response, they seemed mostly defeated ppl. The only talkative man was a fellow my age with Pca who had worked in a palliative care place. The other was a 45yo lady with Brca, and she looked like she'd fight for her life. I got strange looks from some folks because I'd cycle over to hospital to get EBRT, and they wondered why this bloomin healthy man was among them, but after first 2 weeks the burning pains of having EBRT to PG made cycling impossible. These pains were acute when passing water, and continued until 2 weeks after the last RT shot.
But I swam every day, and a month after EBRT I was back on the bike to doing regular long cycle rides with good speed. That's when I began ADT, and within a few months, I could not keep up with the men in my cycling group; without testosterone, I was weakened by 10%, and so I moved to a slower group of cyclists. I kept on working though. ADT kept Psa low, but it crept up again.
I have no idea what the future is for me. Maybe more Lu177, maybe tumour analysis of DNA to discover what chemo may work best. I'll bet I am Brca2 positive.
I had extensive CT scans last Thursday to find out more. Without scans, doctors can only be ignorant about diagnosis of cancer status. Don't be afraid of any scans, none of them hurt, or have serious side effects. I may have PsMa Ga68 scan as well soon, and this scan detects small mets better than many other scans and gives 3D views which can be used to guide IMRT. PsMa scans also show if a man will get a benefit with Lu177, something you should consider. There are free trials of it, but you can buy it from Theranostics Australia.
Patrick Turner
I'm no where near experienced to say. I was diagnosed with stage 4 PC just before Xmas. I'm on Casodex and had my 1st 3 monthly Eligard shot about 3 weeks ago and one Chemo session. I'm doing what I'm advised and sticking to my normal routine as best I can. Work, gym a couple of beers on Friday night etc. See what happens. Cheers 😎
Yes these two are given together
I was on Lupron, Casodex and Avodart (triple blockade) for the 18 months I was on hormone therapy. I'd say do it, if your docs don't object.
Sir were you in the US NAVY?...I don’t how to say this but I think I know you
Yes, from '77 to "81
I used them both for many years then switched to estradiol patches which are much easier on your body.
Yes take them both together. They will work.
I took both for several years. When the Casodex quit working, I switched to Nilutamide. It kept my PSA at <0.006 for 4 years.
I take Lupron and casodex..... The casodex = 50mg per day......... 25mg for each tit..............
Good Luck, Good Health and Good Humor
j-o-h-n Friday 02/07/2020 7:50 PM EST
Betting you can twirl those tassels clockwise and counterclockwise.
I win..... cause I can also tap my head and rub my stomach while I'm twiling those tassels clockwise and counterclockwise simultaneously .... I once performed on the old gong show.....Unfortunately I got gonged....So did the female performer before me who tap danced in the air while standing on her head and was told that "she probably played stoop tag in the asparagus patch too man times",,,,
Good Luck, Good Health and Good Humor
j-o-h-n Saturday 02/08/2020 8:45 PM EST
I took Zoladex for 18 months, one shot per month. I took one Casodex for 5 months and 3x50 mg for 13 months. I also took 5 mg of Finasteride for 18 months and I still take it 16 years later. The casodex is necessary for a complete ADT treatment. The 3x50 mg are taken all at once once per day. I would question heavily why the Casodex is not needed.
PSA went from 1340 to 2.4 in 2 months on Lupron and Casodex 50 mg
lupron or casodex 
Casodex + Lupron (Blockers v Killers)
Lupron and osteoporosis
