I've read a bit that Lupron is slower to start up with a testosterone surge and higher, quicker relapse. So... Would you challenge your urologist out of the gate to try something else?
Gleeson is 9, lots of mets, 120 PSA.
If you were starting out today... Lup... - Advanced Prostate...
If you were starting out today... Lupron, Firmagon or Triptodur?
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I prefer Firmagon. Rapid decrease of testosterone to castrate levels (about 24 hours) without any testosterone increase, it also reduces the FSH more than lupron. FSH could play a role in the cardiovascular, metabolic, musculoskeletal, and cognitive effects of ADT and also in the progession of the cancer.
Check out the interview at urotoday.com/video-lectures....
Discussion between two PCa experts on relative benefits of agonist and antagonist ADT treatments.
Link doesn’t seem to work
Go to urotoday.com then go to Videos then ASCO GU 2019 scroll down to video headed “A look at Established Paradigms in Androgen Deprivation Therapy in the treatment of Advanced Prostate Cancer” – Tom Keane.
sorry
Thanks for the tip. I just watched the video and it was persuasive. I’ve been on Firmagon for 10 weeks now and having good results. My urologist said there should be no difference because all the side effects are related to the low T. He essentially said that although the mechanism is different, Firmagon and Lupron were basically the same and asked if I wanted to switch to the 6 month Lupron shot for convenience. But...I could swear that my hot flashes, fatigue and brain fog all seemed worse when I was using Lupron - I was wondering if it were my imagination. Now having seen this there appears even more reason for me to stick with the Firmagon.
Thank you so much for sharing this. I think this information is worthy of a dedicated post. My husband has only been on Firmagon and we asked from the beginning for him to get his testosterone level checked with each monthly shot along with the PSA test. I don't know if they would have done it anyway, but I definitely have insisted his testosterone be checked each time. I have read other information that indicates degarelix is a superior drug as a gonadotropin-releasing hormone (GnRH) antagonist vs an agonist like Lupron and NOT only because of the lack of testosterone flare that happens with Lupron and other agonists.
This information, like Shueswim says, confirms for us it may be best to stick with Firmagon. The monthly shots are a little inconvenient and he does feel mildly unwell/tired for a day or so afterward, but not every time.
He has gotten used to the injections and they don't cause that much discomfort, however, administration technique seems to be very important, because the only time he really had a bad reaction was after his 6th shot. A different nurse had given him the injection without supervision. She was much less experienced and I watched her give the injection and her technique was not as good (slightly different angle and much faster than usual). Luckily his regular nurse is a super-pro with all thinks hypodermic. For his 7th shot after that my husband asked his regular nurse if she would administer the shot and had no problems like he had the previous month. (PLEASE NOTE this is observational only....it may not have had anything to do with the difference in how he felt, but it was a relatively dramatic difference....he didn't feel well for quite a few days afterward.)
My husband has not suffered much with side effects. He has some hot flashes, but they're not bad and mostly at night. He is doing well with energy level and all his blood work looks good. His testosterone is at 18 (started at 630) and his PSA was at 0.02 for two months then last month went to 0.01 (started out at 24 at the time of first injection).
Despite the inconvenience of a monthly appointment and the relatively mild discomfort and day and a half or so of feeling slightly more tired or fluey it sounds to me like Firmagon is the better choice.
Thank you again for sharing this, Bjry.
Firmagon worked very well for me , quickly dropping PSA so that IMRT could be used concurrently. All the Best, judg69
.........quickly dropping PSA and testosterone so that IMRT could be be used concurrently......
I think 2 weeks of Casodex will effectively block any T surge. You can get Firmagon for a month or two, but it does have injection site reactions at first.
This is just my preference, but I'll offer the suggestion. If one has a G9, metastatic, with a high probability of permanent ADT, one could consider bilateral orchiectomy to drop T permanently. Costs about what one shot of Lupron does. Surgery has some minor risks, and you have to wrap your head around the idea, but that's also true of Lupron and its kin. Long term Lupron has profound physicl effects too, so it's not that different. After a couple of years on ADT the wedding tackle is pretty useless either way.
Anyway, just something else to consider. This is one crazy disease.....
I thought I had read though that oral castration had slightly higher survival rates than physical. But we will ask. You are absolutely right that the fishing tackle just clutter up the basement at this point. 
It should be the other way round. Physical castration lowers T below 0.7 nmol/L while Lupron may lower it below 1.7 nmol/L only. Morote and Klotz showed that 0.7 provides a longer period (107 months) to CRPC than higher levels of T.
ncbi.nlm.nih.gov/pubmed/176...
ncbi.nlm.nih.gov/pubmed/257...
This was the article I referenced:
cancertherapyadvisor.com/ho...
"Men who were treated with GnRHa for 35 months or more had an increased risk of diabetes mellitus as well as elevated risk of experiencing any fractures, peripheral arterial disease, and cardiac-related complications. However, the 3-year overall survival rate was higher for patients treated with GnRHa (46%) than surgical castration (39%)."
I don't even think about 3 yr survival rate, and had Orchiectomy after 2nd lupron shot. Had left hand rebuilt by ortho. surgeon the next day as part of my 10 yr plan. Over 2 yrs into this battle and it's awful nice to have a working left thumb.
Here is another article reporting about this study:
healio.com/hematology-oncol...
It is based on the SEER database, so it is a retrospective study. Also, the SEER database is difficult to work with and can cause wrong study results:
pbs.twimg.com/media/D3wIfC4...
If I remember correctly, there was a study based on the SEER database that showed that prostate cancer patients lived longer than the general population. Just to indicate the problems with this database.
I was just told by City of Hope there is a nationwide shortage of Firmagon.
Ah, OK, good to know. Thanks.
I had a similar diagnosis. PSA 103, Gleason 9, multiple mets. My doctors put me on Degarelix (firmagon) for the first three months because it hits hard. It did. It brought my PSA quickly down to under 2. The injection site in the belly does welt up like a giant wasp sting and is sore for a few days after injection. After three months I was switched to Zoladex and have been on that ever since. The injection is less sore and only needs to be done once every three months. It has been holding my PSA at around 0.25.
I had chemo with the injections too. Good luck with your treatment.
firmagon worked well for me to drop psa rapidly. switched to lupron after three months.
My urologist put me on firmagon for a month to avoid the spike, then switched to trelstar. She said they all did the same thing, but that trelstar was cheaper. Also on Zytiga. That firmagon shot hurt so bad, I had to ice it twice a day. Could have been the technician, and the way it was administered.
How are you tolerating the Zytiga. Starting in a couple of weeks.
I’m feeling pretty good. Main issue is hot flushes, but Venlafaxine has cut those in half to make them tolerable. The cost went way down recently also, with the generic.
My doctor at UT SW are just as convinced that I should only do monthly Lupron shots and NOT go on Zytiga as the two doctors at Dr. Mark Scholz' group at Prostate Oncology Specialists of Marina del Ray is convinced that I SHOULD go on Zytiga and prednisolone right away!
What the heck should I do?Active 67 year old who just lost his wife last August and needs to continue my Commercial Real Estate business to make up the $ I spent on her care for 10 years.
I’m also 67, And active. Been walking and lifting light weights, etc. Trying to eat healthy. I think it all helps you feel better, and limits the side effects a little. My PC is Gleason 10 with many bone mets, so Zytiga sounded like a good idea to me. PSA is 1.4. Started at 14.9 and after a month of firmagon 4.5. Been on trelstar for 5 months. You have a tough decision to make. I guess just go with which ever doc you trust more. Good luck! I hope you stay active for a long time. Also very sorry to hear you lost your wife.
<5.0 ng/dL Testosterone
.96 PSA 04/12/19
Firmagon shot 03.27.19
PSA Preshot 2.68
Good drop? Anything significant?
I’m no expert, but your numbers are better than mine, so I hope it’s good. 🙂
So, listen to UT Sw Medical Center Dallas doc and stay the course, leaving Zytiga in "my back pocket" or Richard Lam MD advice to add Zytiga and prednisolone now?
I’m too new to this to be telling anyone else what to do. There are a lot of smarter people than me on here. I would read everything I could find, and then make the best guess you can. The trouble with cancer is that everybody reacts differently to different meds. A lot of people say Zytiga quits working at some point, but who knows. Whatever you decide, don’t drive yourself crazy with “what if”. Keep positive. Stress is bad.
My husband (66) is in the same boat as you. One doctor is telling him to stop Firmagon shots and monitor PSA and react when it starts to rise and another is telling him add Zytiga and plan to never be off ADT.
We are still weighing options and will probably talk to another oncologist while he gets scans (recommended by second doctor - CT with contrast and bone scan....first bone scan before surgery in March of last year showed no mets). It’s difficult to know what to do. My husband had Gleason 9, PSA 34 at surgery PT3bM0N0 PSA 17 after, PSA 24 when Firmagon started, down to 0.67 30 days after first Firmagon shot, has been undetectable since 4th shot (currently 0.01).
Gleason 7; 4+3. 21ish PSA pre-surgery; 2.8 PSA 8 weeks post op. 1st Firmagon shot on 03.27.19 and 16 days later, PSA last Friday was 0.96. I have asked my doctor at UTSW if there is anything clinically significant about the drop in numbers. T is <0.05
My husband’s Gleason 9 and very high post RP PSA indicating assumed although not yet identified metastases, are the reasons the second doc is recommending he add Zytiga, but before he does the doc wants him to get scans. My husband is hesitant to increase side effects by adding Zytiga, but we are waiting to see what scans show. His testosterone is at 18. Started at 630. I will be interested to hear what you decide.
Based on Doctor Scholtz's book and the logic behind his position, I believe that I'm going to go on Zytiga and prednisolone. I would like to get this into Progression Free Survival within 18 months. I am not aware of any additional SE with Zytiga but one must monitor blood sugar, bone density, liver function
My husband has had 6 month treatment Taxotere Chemo 2 1/2 years ago PSA @ 32000 brought it down to 35 then started Lupron and Xtandi and for another 9 months Pet Scans were good Bone Mets were in remission . Then in November last year it flared up and he had Provenge treatment an immunotherapy treatment . That seemed to work along with the monthly Lupron Shots and added prednisone and Zytiga. Last Pet showed no active cancer. Xtandi was discontinued since oncologist felt it was no longer helping so now he’s on Zytiga. It’s a battle but there are always alternative drugs in their bag.
Blessengs, trust the system. It works, remember to be your own advocate. Alwas get 2 opinions, there are several doctor-specific medical pathways. Some over-the- top, some a little risky.
That's the difference with the "designer" TV clinics, they closely monitor every med or procedure they give you , for effectiveness. They insure each treatment is 99.5%
effective rather than 95%. There is a big difference when you have 6-7 different steps; 95% times itself 7 fold is much lower than 99.5% times itself 7 fold. Try the math.
All this says is we have to take part in our own healing- each and every step, it greatly affects outcomes. Ask or research each med, every procedure, every step of the way. Wear their asses out with questions, make them work, not rubber stamp that doctors usual procedure.
What you get for your sweat is a life CURED of PCa.
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