Just started Firmagon, question on PSA

[davebliz]

I started Firmagon about 10 days ago. Just mild side effects so that's good. I had my PSA and T checked a week after starting. PSA had dropped from 38 to 14 and T from 9 to 0.4. I was expecting my PSA to drop more, somewhere below 1. Was my thinking wrong? Thanks.

[Tall_Allen]

A week is too soon.

[whatsinaname in reply to Tall_Allen]

What is the minimum time period one should wait to get a PSA blood test done after Firmagon has begun ?

Why do doctors allow patients to have their PSA's done so quickly when it is not really prudent to do so ?

Thanks for any help offered.

[Tall_Allen in reply to whatsinaname]

I can tell you the PSA half life in about 3 days, so even if your cancer put out zero PSA, your PSA would have been 10 in a week. But it is unreasonable to expect your PSA output to drop to zero that fast - give it a month at least.

[whatsinaname in reply to Tall_Allen]

The answer to my second question as to why doctors allow their patients to test within a week (even though its useless and a waste of time, effort and money) is I suppose obvious

Thanks, Tall_Allen.

[Chiquis in reply to whatsinaname]

In my husband's case he started Firmagon Sep 18, 2017 and he had PSA checked Sep 22 really only 4 days after??? It doesn't make sense. I agree with you waste of time and money.

[whatsinaname in reply to Chiquis]

And, also a lot of unnecessary tension for the patient & his family.

Sad how commercial everything has become

[billfenley2 in reply to Tall_Allen]

Allen, I started my treatment 2 weeks ago with a shot of Lupron + Casodex pills. So far, no side effects. Should I be concerned about the med's not working?

[Tall_Allen in reply to billfenley2]

It is very rare that they don't work. Lupron at first gives a testosterone surge before it shuts down your testicles - that's why you are taking Casodex with it. You should have your testosterone checked along with your PSA.

[Chiquis]

My husband's PSA was 8.7

In September 2017, started Firmagon, Zytiga, and Predisone by October PSA drop to >0.1

I hope your next PSA drops significantly. 🙏

[Joes-dad]

Mine dropped just over 90%, one month after starting Firmagon. I added in the Zytiga and prednisone right after that. The percentage of it dropping had slowed over the next 3 months but was still dropping when I recently started IGRT . It won't be checked again until 3 months after the IGRT is over.

[btl258]

Mine went from 32.2 to 4.8 after 2 doses (240mg in 1st month and 80mg in second month).

[Shooter1]

54 at RRP then climbed to 62 at 6 week checkup.(not good). Started Lupron. Four weeks later at 6.6 and started chemo. (taxotere). no check for 9 weeks, Dr said not worth checking acct. it would be all over the place. Dropping at 9 weeks dropping at 12 weeks, climbing at 15 weeks ( added Xtandi to mix) dropping at 18 weeks, side effects starting to climb. 21 weeks (cycle 7) still dropping. 24 weeks (cycle 8) PSA stable at 0.137, side effects definitely worse.( Xtandi dose in blood takes 28 days to reach level state). 27 weeks (cycle 9) Psa stable at 0.140. Side effects wicked, Full combined side effects of Xtandi and taxotere. Ended Chemo. stayed on Xtandi. Slow recovery. from day four through day 25 sloughing whole body skin, vision double/ quad. blurry. Eyes just leaky red holes in face, nose running blood and mucus, hands numb above wrists, feet numb above ankles, 7 knives in belly, pain 24/7. Very slow recovery. Joints ache for first time, balance off, no driving. Continued for 2 months and started getting worse, knives still in belly and feet on fire. No sleep, more 24/7 pain.

Cut Xtandi dose to 120 mg, added prednosone 10 mg, by day three noticeable improvement. Down to one knife in belly. Day 4, best I've felt in months. Day 5, ankle edema less, better balance, by day 9 I could wiggle my toes and climb stairs without carefully placing each foot and holding hand rail.

Now 24 days later, hands and feet still not right but working. Back to work after 2 1/2 months off.

Don't be afraid to cut dose of meds if toxic side effects of level 3 and 4 manifest themselves. They kill cancer but in some of us max dose will kill us too. PSA still dropping, Last at 0.118 on reduced dose. Hit it early and hard, but don't but don't let meds kill you.

Doug'

[NewAgeBrother]

Typically, the labs would not be done again until one month afterwards. However, in my case they waiting for two months (according to the Firmagon flowchart). They should do again your testosterone and liver enzymes. Your T should be down to near castration level (50 or less) in about three days.

Hopefully, your injection site is doing well. It really helps if the nurse waits 60 seconds before withdrawing the needle. My noticeable (without touching) soreness lasts only a day.

[NewAgeBrother]

In what units is your testosterone? Is it dmol? Mine was ng/dl.

[leo2634]

PSA 14.7 one month after Zytiga,Prednisone,and ELIGARD injections was 0.1 two months undetectable.

[davebliz]

Thanks all for your comments. The blood test after just a week on Firmagon wasn't a money grab, I was due for my regular blood test as I also have CLL. I'm in Canada and typically blood tests are covered by our public health care. One person asked about the units for my testosterone, it was 0.4 nmol/L which converts to approx 11 ng/dl.

[whatsinaname]

Merely because you are not paying directly and your public health care is paying does not mean that it wasn't a "money grab".

Also, making you do tests all in one go whether or not they can be of any use, does not strike me as being particularly efficient.

[Philly13]

I posted this a few minutes ago before noticing this thread. It seems appropriate here so I added it.

I had the loading dose of firmagon on May 8. Labs on May 6 indicated PSA had jumped from 5.8 to 47.16 in 3 weeks. I use Direct Labs online testing to order my own PSA tests on a monthly basis. They use Quest labs for the testing. FYI, PSA is the test of the month for June and is only $29 bucks. Normally it is $44.

The result was encouraging as PSA dropped to 11.4. I had a second treatment yesterday and will start Zytiga today. I need to pick up the prednisone at my Pharmacy. I got Zytiga at the Jefferson Specialty Pharmacy along with a bill for $3235, which is the maximum they can charge in the coverage gap for this month. Will be about $1700 next month.

I saw my Philly MO yesterday and he said the quick drop is encouraging. I understand that getting PSA measured at different places can be misleading, but believe trends are consistent and helpful information.

He reported that a whole body bone scan taken 2 weeks ago showed widespread osseous metastases in my skeleton but revealed nothing we didn't already know from fluciclovine PET, FDG PET, and CT scan from head to toe. Also, positive news that the appearance of the METs and the quick response from the Firmagon are good signs for the disease to be responsive to the plans we started at the beginning of May.

I am pain-free, and the side effects of Firmagon have been minimal to date, but have struggled emotionally since the discovery of additional METs in April. I am sharing this good news and know I should be happier about it but I am having trouble trusting positive information. My Dad died from Pca in 1984 at the age of 60, and the treatments in those days were as destructive as the disease, or possibly more destructive. I know it is the wrong movie for me to be playing in my mind but can't turn it off for the last couple of months.

I have been a warrior my entire life, and ran a big business after my Dad died while I was in my 20's, and know how important mental outlook is. I will work on returning to good habits for exercise, meditation, and sleep that I abandoned in April. It is strange that I suspended activities that have been very productive for me through good times and bad. My plan is to start with exercise and believe that therapy will cause the rest to follow. Indeed, I did an hour on my elliptical machine last night and feel better this morning.

[binati]

I have T3bN0M0 and my PSA was 253. A month after taking Firmagon it was 15.83. Next month it was 2.69 and then after third month 1.47. I did not check if after that since after the 5th month I have been on IMRT. I did check the T level before the Firmagon it was 580 and after 3 months <20. I hope this is useful. I agree that one should wait a month before checking.