I'm 84 and diagnosed with PC 5 months... - Advanced Prostate...

Advanced Prostate Cancer

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I'm 84 and diagnosed with PC 5 months ago. I was told I had High Risk Localized PC with a Gleason score of 8.

Vegasman profile image
26 Replies

I was put on Firmagon immediately and took 45 radiation IMRT sessions, which I just finished. Although the pet and bone scans showed no signs of spread outside the prostate, I am also taking 500mg of Zytiga with 5mg of Prednisone as a precaution, . I also take .4 mg Flomax (I no longer have fainting spells in the early morning hours since I started taking Flomax in the late afternoon after a snack).

My urologist wants me to switch from Firmagon to Lupron because I complained about lumps in my abdomen and he believes taking a shot of Lupron in my buttock every three months would be less intimidating. I have not consented yet because I was told at the outset that they favored Firmagon because Lupron caused a short-term rise in testosterone. My concern is that Lupron might cause a flare up even though I taken 4 months of Firmagon injections. Also, I also have always believed that "if it ain't broke, don't fix it", so that is another concern.

I would appreciate any thoughts regarding switching to Lupron for me. Thanks and God Bless you All. George

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Vegasman
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26 Replies
Tall_Allen profile image
Tall_Allen

Lupron is more convenient and the risk of injection site reactions is much lower.

It is increasingly common to use Firmagon first to prevent a testosterone flare when starting Lupron. It shuts down the pathway to signal testosterone from the testicles. A s long as you don't wait too long to begin Lupron, it will be OK.

dhccpa profile image
dhccpa in reply to Tall_Allen

I have heard differing opinions of whether, for most patients, Firmagon or Lupron has worse side effects. Again, this is for most. What's your opinion?

Tall_Allen profile image
Tall_Allen in reply to dhccpa

Firmagon and orchiectomy have lower risk of cardiac SEs than Lupron, but the risk isn't very high unless you've previously had a heart attack.

Seasid profile image
Seasid in reply to Tall_Allen

I was actually afraid of dementia with lupron.

Tall_Allen profile image
Tall_Allen in reply to Seasid

See my response here:

healthunlocked.com/advanced...

Seasid profile image
Seasid in reply to Tall_Allen

Professor Epstein also thought that lupron is more convenient. He also thought that lupron has 30 years of experience behind. In short he recommended lupron. He thought that Degarelix is still a very new drug and that we still don't know his long term use side effects. I preferred Degarelix as I wanted to contribute to the medical science by using it. Plus I really didn't think that I will live so long. I believe Degarelix is a much better option for me. My life expectancy was never too great with either drugs.

Seasid profile image
Seasid

I would stay with Firmagon. It is better for your heart and brain. 50% less chance of urinary infection etc. The list is long of the benefits. You should find an oncology nurse who is not jut trained but also giving a Firmagon injections on a daily basis. I am using Firmagon 80mg (Degarelix) for almost 4 years. Some people are using it for 6 years and it is working. There is also a Firmagon video how to inject it properly. I presented it to my oncology nurse. They should change (rotate around your belly button) the site of the injection. So every four month you come to the same area on your tummy to get the injection. It should be injected very slowly for longer than 30 seconds. I hope you are not on blood thinner medication? They should check where is the four month old "lump" from the depot Firmagon injections and palpate it and avoid to inject directly into this lump. I suggest you give a piece of Lint chocolate to the nurse. She will be happy 😊. Most importantly Firmagon injections should be given under the angle of 45° deep into the fat tissue!!! (All of this is explained in a video for healthcare professionals. You should just say that you are a healthcare professional when the Ferring site ask you in order to grant you excess to the educational video). Not just under the skin. What is easier for them but not good for you as it will cause more redness and pain. They should use the original needle from the original set of supplies included in the box of Degarelix (Firmagon 80mg). I wish you all the best. István

Ron53 profile image
Ron53

I did Lupron for every 3 months for approximately a year. When i started, Dr never told me there was an alternative. On one of my 3 month injection visits, I complained about all the horrible side effects. You know them all, so won’t list them, but hot flashes being the worst and I had them bad. He then offered up Firmagon. He said for some , Firmagon was a good alternative with less side effects. Only downside being the monthly visit. .Wow! For me , the side effects have been significantly less, especially the hot flashes. The nurse that gives the shot is very proficient at it. Once I got past the first dosage of two shots, it’s less painful for me than the the butt. It’s worth the once a month visit for me.

Seasid profile image
Seasid in reply to Ron53

I agree 👍. I have zero hot flashes. I am on Firmagon for four years now.

treedown profile image
treedown

I never had Firmagon but had Lupron for 2 years. No hot flashes or fatique and only a sore backside for half a day. I rode my bike to most injections and for 10-20 miles afterward. Used alternating buttocks as injection site. We are all different as far as how these drugs effect us so there's no real way to know until you try unfortunately.

in reply to treedown

That's it exactly! Everyone is different. We can share personal experiences... should not advise anybody else on what they should do though. Reading articles does not make one doctor.

Welcome Vegasman! I too was a gl. 8 over seven years a goat the budding age of 53 . I too did a one month firmagon shot . It took my Psa down .I too was switched to lupron tri monthly . I agree that it is better than getting poked monthly . I too did imrt . The good news for is it worked . I’ve been in a no signs remission over six years now . I wish you the same . Good luck Sir! And Viva Las Vegas .. I lived there one year in the late 80’s as a bachelor . That town tore me . Scott

j-o-h-n profile image
j-o-h-n

84------>fist bump<-----85

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/16/2022 4:34 PM DST

Exrunner profile image
Exrunner

There is an oral equivalent to Firmagon...Orgovyx. Requires taking a pill daily. The side effects are much the same as Firmagon but if you decide to stop Orgovyx your Testosterone is supposed to come back much more quickly. I guess my question is, at your age why you would put yourself through all of this. I would ask your doctor what my prognosis is if I do nothing.

Vegasman profile image
Vegasman in reply to Exrunner

I ask myself the same question. I cut down Zytiga from 1000mg daily to 500mg and my radiation oncologist was unhappy. Quality of life means nothing to my group of doctors but I suspect most are all the same these days. For example, all doctors want patients to use their portals to communicate. Next week, I am interviewing a Concierge doctor. This might work for me. to be continued....

Seasid profile image
Seasid in reply to Vegasman

Do you have metastasis? If not you don't need Zytiga.

Exrunner profile image
Exrunner in reply to Vegasman

Remember you are their customer (patient). They work for you. They recommend but you are the one that makes the decision as to what course of action you take. You are the one that has to pay the bills and live with the side effects.Do your own research so you are knowledgeable about the disease you have and go from there.

Seasid profile image
Seasid in reply to Vegasman

Questions to ask during the interview:

google.com.au/search?q=ques...

Seasid profile image
Seasid

But I would still keep Firmagon injections

Seasid profile image
Seasid in reply to Seasid

I am only on Firmagon and I have wide spread mets i my bones. You can always add Zytiga if your PSA goes up. Try to find a medical oncologist also.

My husband also had to switch to the Lupron as he hated the pain and lumps from those shots in the belly. Testosterone is staying low. His Gleason score was 8...six years and 44 radiation treatments ago. He is now taking Xtandi because of bone metastasis in several areas. Hanging in there still at age 76.

strummer profile image
strummer

My husband started with firmagon but recently switched to Lupron . He didn’t have any problems and had fewer side effects. I think the flare is when you start on Lupron first.

Seasid profile image
Seasid in reply to strummer

Can you clarify?: "He didn’t have any problems and had fewer side effects." On which drug? On Firmagon?

I started on Firmagon injections as I had multiple mets in my spine and had very intense sciatica pain.

I said to professor Epstein:" i don't care about the PSA! I just want that this pain goes away. " And he prescribed me Degarelix and in 7to 8 days I was pain free.

strummer profile image
strummer

Less side effects on Lupron. Plus likes the 3 Mo schedule vs monthly.

He’s had 2 rounds of Lupron with minimal side effects-slight increase of fatigue. He was on monthly Firmagon for 3 years. His side effects were increasing. Chills, slight fever body aches were common every month.

Seasid profile image
Seasid in reply to strummer

I understand. Thanks. Did you contact Ferring for explanation? What your MO said about this chills? What causing them? I believe that is when the injection is not applied properly.

strummer profile image
strummer in reply to Seasid

I don't know Ferring. Our MO said it was part of potential side effects of Firmagon. Could be injection but now that he is on Lupron not a concern.

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