Stage 4 confusion about treatment/results

dgrinnan
dgrinnan Member Posts: 12 Member
edited April 5 in Prostate Cancer #1

I am a little confused about treatment and what they can and can't do. Starting out it was made clear Stage 4 Prostate Cancer is not curable, but I could live for some number of years with it depending on how I respond to treatment. I accepted that but the more I learn the less I understand. My chemo if successful is expected to kill the cancer cells to the point I no longer light up a PET scan. If chemo can kill the cancer cells to the point, they are no longer detectable, why wouldn't it be able after one or two more rounds be able to kill it all? It does for other forms of cancer. I am being realistic and know at this point they can't cure it, but some of what I think I know does not make sense. I am 66, otherwise healthy and active with no symptoms from the cancer. It has spread to my bones/lymph nodes. I think my survival chances to 5 years are good but apparently the current treatment is known to stop being effective at the 3–5 year mark and every case is different.

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,177 Member
    edited March 29 #2

    Hi,

    Sorry to hear of your stage 4 cancer diagnosis. Did you have a biopsy done, if so what were your Gleason scores? It sounds like chemo will not kill all the Prostate cancer, don’t know why but your Urologist might be able to fill you in. Depending on how many lesions you have, external beam radiation should be able to take care of the bone and lymph node cancer. Androgen Deprivation Therapy(ADT) should also weaken the cancer. If it was me I would seek out a hospital network that specializes in advanced cancers and get a plan generated. As you stated every case is different so predicting longevity can be tricky. Sometimes doctors don’t even do a good job at that. Good luck.

    Dave 3+4

  • dgrinnan
    dgrinnan Member Posts: 12 Member

    Yes, on biopsy. 12 out of 12 samples showed cancer. On digital exam my prostrate was rock hard. October 2022 PSA was 2.2, up from 1.6 in October 2021. October 2023 PSA was 69. Gleason score 8. I am on a what the doctor called a triple approach/treatment. I started on Fermagon injections and recently switched to a daily pill that replaces the Fermagon. Orgovyx. It is supposed to do the same thing, I am also taking a form of Androgen Deprivation Therapy (ADT). Nubeque. The chemo is 6 rounds, once every 3 weeks. DOCEtaxel.

  • Richlee
    Richlee Member Posts: 3 Member

    is ADT a good choice of treatment and is it costly even with insurance?

  • dgrinnan
    dgrinnan Member Posts: 12 Member
    edited April 4 #5

    It is supposed to be having good results. The specific one I am taking has been around for only a few years and just recently obtained FDA approval. Nubeque. It is used in both prostate and breast cancer. I can't explain all the science, but it blocks the cancer cells from getting what they need to split a multiply. In conjunction with the hormone therapy that is supposed to starve the cancer cells of their food supply. the pill I am taking that replaces the Fermigon injections is also fairly new. Orgavyx. As far as cost, yes, both are expensive. Nubeque is about $16,000 per year and Orgavyx is about $5,000 per year. That said, my employer health insurance covers a majority of the cost. For the Nubeque, there is a program sponsored by Bayer if you have commercial health insurance through your employer and they cover any remaining cost. My copay is zero. It has cost me nothing. Similar with the Orgavyx. Small copay on my part. If you have a Medicare supplement and Drug Plan or Medicare Advantage plane, which I am switching to in a couple months, your cost is the amount in the donut hole. I won't try to explain the donut hole but bottom line my annual cost will be about $3,100 for all my medications for the year. I have no complaints about that.

  • Richlee
    Richlee Member Posts: 3 Member

    has anyone had a good experience with abiraterone or abiraterone acetate?

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    edited April 5 #7

    Please start your own thread. See the New Topic button (blue) on the upper right

  • pmilz
    pmilz Member Posts: 3 Member

    I’m so sorry to hear about your diagnosis. My boyfriend was diagnosed stage 4, 2 weeks before he turned 51. That was January of 2021. He was started on a chemo pill and radiation. Then was on Xtandi for many months which along with hormone therapy reduced his PSA from 795 to 22 that is as low as it’s been since diagnosis. It’s at 199 currently.Then started regular chemotherapy when that stopped working. He is now about to start PLUVICTO in about a week because chemo stopped working. That is supposed to give him several months without spreading further. His scans have always shown uptake in pretty much his whole skeleton so it is pretty severe. We are over 3 years in and his quality of life has been pretty good considering all of this. It seems like most of the treatments do their job for about a year then have to be switched. Wishing you much success with your treatment.

  • jc5549
    jc5549 Member Posts: 57 Member

    I am sorry you are dealing with stage 4 disease.
    I think some of the confusion comes from the term “chemotherapy.” ADT or androgen ablation, or chemical castration does not kill the tumor cells. It does make them more sensitive to radiation therapy AND it can put the disease in complete remission (as you commented on a negative PSMA PET scan) for typically a few years. Unfortunately the tumor cells develop the ability to grow again despite the near zero levels of testosterone when a man is on ADT therapy. This is called castration resistant or androgen insensitive disease. When Pca becomes androgen insensitive men are offered more standard “chemotherapy,” drugs similar to other cancer types. There is no chemotherapy regimen that is known to kill Pca tumor cells to date.
    I hope this makes sense and good luck on your journey.

    jc