How soon should treatment start for aggressive cancer?

My original urologist and the one who did my surgery suggested I keep a journal.

I did, it's 365 pages, a mixture of thoughts, experiences and key literature searches relevant to my PCa and decision making. It's far from book material...though it is organized by year...

Thanx for the kind words.

My objective is to share my experience, provide a perspective on how to think, not what since as all of us, I do not have a medical degree nor am I board certified. I can tell you this, my medical team enjoys our discussions!

About two years ago I was Gleason 9, rated stage 4b, metastatic. High PSA. My urologist at Mayo confirmed my diagnosis with intraperatoneal biopsy and PET Scan. Also had a biopsy on a lymph node in my chest, near my heart. I started treatment with Lupron. Shortly thereafter I started darolutamide and proceeded with six sessions of docetexal chemo. Next came twenty six sessions of intensity modulated radiotherapy. Follow-up PET scans were clear. By then my PSA was negligible as was my testosterone. I went off Lupron after 13 months but continued darolutamide. After all of that I am very weak. My testosterone is coming back (now at 40 ng per deciliter). I’m 74. i can play golf again but have to use a cart. Glass is half full. Thanks to Dr. Kwon and his Mayo-Rochester team.

Your story is very similar to mine. However, after my chem with Doxetaxel for 3 months, my MO at Johns Hopkins took me off Darolutamide and then after one year of Lupron, took me off that as well. PSA is currently undetectable and T is 33 (March 2024). I play golf 4 to 5 times a week and walk but it has become difficult. I don't know if it's the age or the disease/treatment. I will carry on and trust God.

I started out with a Gleason 7 and cancer had metastasized to pelvis,lung and lymph nodes. 10 biopsy all cancer. First psa test came back 763 wich we thought was a mistake. Couple weeks later took another one and it was 843 so was sent to a urologist. By the time I got to see him it was 1717. Took all the scans to confirm it. Went to a oncologist and he put me on lupron shots every 3 months and 2 80mg xtandi every day. Now my psa is .04 wich is undetectable and just had a scan 3 weeks ago and all tumors have shrunk 50 to 75 percent. So for me taking the hormone therapy was the way to go until it stops working. Maybe by then something new will come out. So for me 1st was finding a good oncologist and 2nd don't be to quick to jump to radical decisions. Good luck on your quest and to all of us out there 🙏🙏🙏 prayers go out to you on your decision.

@mmacaulay

I am interested in the sequencing of your therapies as I am in the same boat. Now on Lupron and will begin Proton the end of May. I am concerned my treatment pathway may not be aggressive enough given 4+5 and metastasis to the pelvic region.

Could you be more specific about how long after Lupron you started darolutamide? Did you start docetaxal simultaneously with darolutamide? I presume the six sessions of docetaxel were three weeks apart. How long after last session of docetaxal was IMRT started? And if I understand correctly you were taking Lupron and darolutamide during IMRT.

Many thanks for any info, Rick

I'm G9 (5+4). Had recurrence 6 months after surgery. Cancer had metastasized to the pelvic area. I had 35 rounds of radiation and started LUPRON and ZYTIGA all at the same time as the radiation. Docs are saying LUPRON for 3 years to life and ZYTIGA for 2 years. I also just began Fosamax last month due to bone loss caused by the ADT. I have been walking regularly and lifting light weights the whole time.

I kept a diary, which I strongly recommend. Started Lupron 10/13/22, injections every three months, transitioned to once-monthly as of 12/5/23. Started chemo 10/28/22, docetaxel + darolutamide, Ended chemo 2/10/23. PET scan 3/9/23 indicated chemo was very effective. Started IMRT 3/31/23, 26 sessions. Last Lupron injection 2/23/24. Still on darolutamide.

@mmacnelly

Thanks for the details. Most certainly a detailed account of times, places, procedures, treatments and people. Created a spreadsheet.

Just wondering about docetaxel chemo...What kind of side effects did you have? My PSA has gone up every month now form 2.5 and now it's 4.0
I've been on Apalutamide and Eligard injections every 4 months for a year now. But, because my PSA is going up, I'm seeing an Oncologist next month and they might start Chemo. This is also so scary. I thought I'd be on the hormone treatment for a few years before the Chemo. I feel okay. No pain but it's spread now to a lymph node. Before it was just metasasized to bones.
This is all so unbelievable. I was so healthy then last year, I had blood in my urine and now they give me 5 years to live...
It's really scary

Cal77,,I also have stage 4, in the bones and one lymph node (don't even know what that means). I went 10 rounds with docetaxel. No it's not great but you can do it if that is required. My psa started 962 and is now < .02, testosterone < 3. I had a great deal of pain in my leg which led me to the walk in. If the chemo is needed you will get through it. Also I had did the google on how many years with stage 4, not good but was old info. Read the responses on here of how long many have been going at it, very encouraging news. At times it's so hard not to put your foot in that hole but you need to keep pushing forward. I don't think for me it will ever be as it was but at least they are controlling it and keeping me standing tall. I wish all the best for you, stay strong, you can do this.