+ Reply
Log in or Register to participate in these discussions
Prostate Cancer stage 4
Johnbin
4 Posts
It has been 14 months since I was diagnosed with Stage 4 Metastisized Prostate cancer. I started chemotherapy and had a siever reaction on the first round of treatment. They stop the chemotherapy treatment and put me on Zytiga 1000mg once a day. This seems to be working well my PSA is .0001 or considered undetectable. I also receive two injections every 28 days Firmagon & xgeva.
I have no idea how long this will last and what the next steps are. I would like to chat or speak with someone experiencing the same thing.
5 Replies
Roy L.
257 Posts
Hey @Johnbin, I am also stage 4 mets to my femur and hip. I was not able to do chemo because I am a long term diabetic with neuropathy and chemo for PCa is known for causing neuropathy. My PSA at diagnosis in Dec 2018 was 442 and I had a tumour the size of a baseball. I had radiation to hip, femur and prostate and started on Firmagon once a month and Zytiga.500mgs once a day. After a few months I was switched to Lupron shot every 3 months which I am told I will be on for the rest of my days. My PSA has been holding steady at 0.1 for over a year now. I get bone and CT scans every 6 months and see my oncologist every 3 months. I was 53 when diagnosed and 55 now.

If there are any questions I can answer or try to, please let me know. You have come to the right place for support and to ask questions. You may want to post in the Advanced Cancer or Man Cave groups as well.

I wish you well with your treatments and I hope we can chat about how you are doing. Cheers.

Roy
Peace Love Cure
Johnbin
4 Posts

Hi Roy L thank you so much for your reply. We seem to be somewhat on the same path on life. I am 62 and it has been 14 months. My wife is great support, however, there is only so much she can help.

I also had radiation therapy on my hip and a bit further up on my spine where a tumor crushed the bone and resulted in a hairline crack of the spine. This was causing me a lot of pain so have been on alot of pain killers.

I struggle a lot with how long I have. The doctor's are very evasive and will never comit to any time line.

I have been struggling and the pain killers became a problem for a few days with me taking more than prescribe. I am ok now and decided to reach out to see if I could get help here.

Thanks again for replying it means a lot.

Roy L.
257 Posts
Johnbin‍, I am here to help in any way I can. That spine thing sounds miserable. For me the tumour was pushing on my bladder causing miserable pain and making it feel I always needed to pee. I was on Dilaudid for over a year but finally was able to control what little pain I had left with Tylonol assisted at night with some "special" chocolate that helped with pain and sleep.

Doctors wont tell us anything because we are all different with how we react to the meds and when they will stop working and then try something else. It really frustrated me at first, but I understand they really dont know until they have tried everything. Glad to hear your wife is supporting you, that is so important. My son got me through the first year and my dog has been awesome for me.

I understand the struggle, I just take a day at a time and try not to think to much about the future. Anytime you need to let off some steam or just want to chat, I will be around.

Roy
Johnbin
4 Posts
Hi Roy,

It was a good thing you have your son and dog. I also have a standard Schnauzer who is also great company he constantly tip his head sideways trying to understand my feeling's he is very intuitive. My son is living in Victoria,BC and my daughter is in Boston so we talk every day and as soon as covid-19 is over I am going to Boston for a couple weeks and then Victoria.

I am also taking slow release hydromorphone and Dilaudid 5 times per day. I asked about the special food and the pain specialist was open to the idea, however, was not sure of the interaction and my wife was against it. I am still thinking of it because I would prefer it over the Dilaudid.

I am also here if you need someone to talk to.
Roy L.
257 Posts
Johnbin‍ I do consider myself lucky with the support I have. My dog Harley has epilepsy so we are a great pair.

My oncologist and diabetic doctor said if it works, go for it. I know its not for everyone, but gets a big 2 thumbs up from me.

Thank you sir, I appreciate that very much.

Roy
+ Reply