Hubby got his 1st loading shots of firmagon yesterday, so far he's experienced itchiness and pain at injection sites. Why does it somehow feel like the beginning of the end? Any tips on how to make any of this any better for both of us? What would you have done different if you knew then what you know now? How do you help them decide what treatment plan to choose?
*Stage 4 G 8 (4+4) PSA 467
Hi AuburnAngel,
My husband experienced pain, and swelling around the belly when he had the Firmagon shots as well. His psa drop from 8.7 to 0.1 I hope your husband has good results. My husband was diagnosed in 2010, since then we have been visiting the Doctors, treatments, surgeries, and medicines.
What makes it better for us? Our faith in God and HIS promises of eternal life through Jesus Christ is what give us hope and help us get through everyday. Do I feel fear and have difficult moments? Absolutely!! Since he was dignosed there's 3 words thar scare me Psa, hospice, and chemotherapy which he's already on and here we are. I just have to remember that God will never give us something that we couldn't handle and through all these years I find this to be more true in our lives. Also we try not to talk about the cancer everyday just when it is necessary. He loves cruising and to travel so when it's possible we do that.
What will I do different? Without a doubt I wish I would have been more informed about the different treatments available and I would have had a second opinion. Also if he would have done radiation after Prostatectomy the cancer maybe wouldn't metastasize, since the pathology test after surgery came back with positive margins. I try not to dwell on it.
I know it's not easy what you and your husband are going through. I want to let you know that you are not alone. My prayers for you and your husband. Sorry for such a long msg🤗
Sincerely,
Erika🙏💛
Thanks for the message and the length was no issue but the content is appreciated. 🤗
Second opinion. Expert opinion. Not necessarily changing oncologists (if you think he/she is generally pretty good and listens to you), but go to an expert in Prostate Cancer. That has been the best way for us to figure out all the options. He doesn't tell us what to do but he does give us a pretty good explanation of why he thinks we should do X next. We see him about 1-2x / year.
Fortunately, we did this from the very start. But that first visit was super amazing because we were totally sideswiped by the diagnosis -- which came from an orthopedist because my husband had terrible hip pain -- hairline fracture from bone mets. Dr. Eric Small (UCSF) came in, provided an overview of everything that was cutting edge, current recommendations, and then down-the-road recommendations. We felt like we had a much better handle on what we were dealing with which really lowered our anxiety.
So that's my #1 recomendation.
Also, get an file box of some kind and keep all of the scans and lab results organized. PLUS - keep a notebook and write down notes before and during every office visit. This has been super helpful to us -- to remember everything we wanted to ask about and to be able to look up what happened, when things were done, etc.
Can't say anything about firmagon -- we didn't do that. We did everything else though!
Best wishes to you,
Brenda
Dear AuburnAngel,
Sending hugs your way and want to encourage you to make the best of the “good days,” doing the things you both enjoy.
I research, keep a “medical journal,” and write my concerns, symptoms manifested between appointments. I keep a folder with all blood work, medication changes and scan results. I try not to become overwhelmed by information, (difficult since there is so much there). I also have private, opened, discussion about progression, prognosis, with Oncologist. (whom I trust, because he is very honest).
Please don’t be too hard on yourself with what you could or should have done. You did the best with what knowledge you had regarding this horrible disease.
I keep a journal, I take lots of pictures and videos. We talk a lot about what his wishes are. We have spoken and cried at nights. We have had some mentally and emotionally rough moments, but I find with symptoms better managed, he is a lot better.
I am also very pragmatic so I read “The year of Magical Thinking, by Joan Didion... a story about the first year after her husband died. I found that it was very therapeutic. It helped me to zoom in on some areas in relationship that could be neglected and result in remorse, guilt later on.
I also read A grief Observed by CS Lewis, who wrote about his grief after his wife died.
I love the idea about traveling when you can. That’s a great way to get away from it all. We are planning a trip once radiation is finished.
Over all, we are instinctual, intuitive beings, always trust your gut instincts.
Sending a prayer and best wishes....
Just a follow up. Finished 1st month on firmagon and It brought his PSA from 486, to 70.70. They went with a 3 month shot of Lupron this time. The side effects are different and at this point it's hard to say witch was better. This is an exhausting process either way.
Mental and physical hardness
My husband was diagnosed with advanced prostate cancer a month ago today. He was treated with Firmagon and had his second treatment Monday. It brought his PSA from 23 to 2.4 and little side effects. He was in so much pain he could barely walk because so much of it in his bones. Most people we know you've had prostate cancer had the prostate removed and are cancer free. This group seems to have a similar diagnosis. We're going to Mayo next month for a second opinion. Our doctor is unsure if we should stay on Firmagon or switch to Lupron. I just want my husband to have the best treatment with the fewest side effects. He wants a good quality life. I look forward to hearing more feedback from all of you in your experiences. We rely on our faith to help us through this. It's hard, but my husbands pain is a lot less and his PSA is going down so things are good now. I look forward to giving and receiving support. I will be praying for all of you.
Update
Hubby got his 2nd 3 month Lupron shot yesterday and is trying an icepak on the spot today to help relieve the pain. He definitely has increased side effects with Lupron over what he had with Firmagon but were trying to manage. He has his 3rd round of Taxotere on July 5th and has done pretty well so far. He has experienced headaches during the infusion and his 2nd he had an added reaction that stopped the infusion for an hour and a half. After added fluid, benadryl and crackers he was able to finish the infusion successfully. The whirlwind of appointments has really worn on us, if it's not related to his cancer, it's related to my cancer and conditions. It feels like he's farther and farther away, becoming so detached. The lack of intimacy is so difficult to adjust to and work with. I catch myself on both ends of the spectrum and feeling guilty either way. We're not even 55 yet, that part of our lives shouldn't be over but I'm to be happy that his recent bloodwork PSA was 41.9 and testosterone 11. There's nothing easy about this cancer, no matter what anyone says. Oh and we had a 2nd opinion with a urological oncologist and we are very glad we did, having the added information was beneficial. They took his case before the tumor board and went over every scan, test and pathology was redone. They upgraded him to a Gleason 9 4+5 and spotted more involvement.
Sad and down but can’t show it
Two months on Hospice 
My story with my best buddy
Prostate cancer giver
Can’t Get Off Floor - dehydration 
