Advanced cancer, widespread bone Mets

[Stumpgirl]

Hello all. My father has now failed Xtandi after having failed Xytiga . He had a 3 year run for which we are thankful. However, he started getting fractures and intense bone pain a few months ago and a recent scan showed the cancer is spreading . His oncology appointment is Wednesday and we are expecting to hear they’ll suggest chemo. I know he’s fearful of it as are we and I don’t know if he will want to take that course. Is there anyone out there with a similar experience? This forum has always been so informative and I appreciate you all

[Tall_Allen]

What is he waiting for? The sooner, the better. The longer he waits, the less effective it becomes and the greater the side effects. He may find it relieves his pain and he feels better.

[Canoehead in reply to Tall_Allen]

TA and I don’t agree on much, but on this call he is 100% correct. The earlier you hit it, the better, and the side effects are manageable. I believe my decision to have early chemo is why I am still on this forum.

[Stumpgirl]

The hospital dropped the ball on 3 mris…

And my dad doesn’t know if he will even agree to do chemo . I’m hopeful the side effects will be minimal and it will help relieve his pain

[Schwah in reply to Stumpgirl]

PC Chemo is not that bad. Like a flu fir a few days. Ask around here. The bad stuff is what my wife took for breast cancer and even that’s not horrible. You can even mitigate the hair loss. We will teach you to help.

Schwah

[tango65]

Chemo is usual the next step in this situation. Lu 177 PSMA treatment may be an option. This treatment may be available depending where you are located. There are clinical trials in several places in the USA. Unless he has diffuse bone marrow infiltration, Lu 177 PSMA treatment does not have major negative side effects.

clinicaltrials.gov/ct2/resu...

[topofthemountain]

Xtandi failed me after 12 months. My medical oncologist does not like chemo and suggested LU-177 if I could afford the cost. My PSA dropped from 50 to 3.6 after the first infusion of LU-177 and to .36 after the second infudsion. I had no side effects with LU-177. My PSA is now being monitored closely and will I will receive more if my PSA rises in double time.

[Nickhmcg in reply to topofthemountain]

Can i please ask do you have bone mets?

[topofthemountain in reply to Nickhmcg]

Yes. My Lu177 treatment removed most of the mets in my bones. But remember Lu177 is not a cure as non PSMA cells will repopulate into the space of the dead cancer cells over time. But the treatment does buy time and hopefully a cure is found sooner than later. My cancer was described as very aggressive based on PSA progression and my Urologist told me I would be dead in 5 years. I left him and found a great medical oncologist and nuclear oncologist in Brisbane Australia. Well I am still here after 5 years and I feel great except for early morning back pains that may have nothing to do with the cancer.

[Hidden]

I can’t advise one way or the other. Everyone is different with scope of disease and body strength. In fact medical oncologists also differ.

I can only tell you that once I developed Mets in 2004, I entered into a six month chemotherapy and hormone therapy trial. I remained on Lupron for another six years.

If you have confidence in your MO, then I would not fear chemotherapy with Lupron/Eligard. I wish him the best in his fight of this terrible disease.

GD

[MarkBC]

I was nervous about doing chemo. I had met other cancer patients who looked terrible during and after chemo. While it certainly wasn't fun, chemo was not as difficult as I imagined it would be. It really knocked my cancer back. I will do it again if my oncologist advises me to.

[larry_dammit]

Not exactly the same here, diagnosed with stage 4 in 16, went straight to chemo then to Xtandi. Almost 5 years now. Chemo was tough but it stopped the spread of the cancer. The doctor now says I am stable. Hoping for more years . Tell dad he has nothing to lose at this point. My bone pain is bearable and quality of life is good. 🙏🙏. Keep fighting warrior

[Hidden]

He only has to commit to trying one cycle. If it doesn't slow or stop the progression or he can't deal with the side effects, he can stop after one cycle.

It's a small commitment for a potentially effective treatment. I didn't find it that difficult and would do chemotherapy again if it would help.

[Hidden]

How do you feel about using Radium 223? That is what they are suggesting for my husband after failed Zytiga and chemo? Thanks.

[Stumpgirl]

We were not aware that LU 177 was approved . We are in Cleveland and have moved from Cleveland clinic to university hospitals to follow his oncologist . He was diagnosed stage 4 , 4 years ago and immediately entered a clinical trial with xytiga and Lupron (i think?). He failed that within a short window and became castrate resistant . Strangely his psa doubled twice but then plummeted but they still moved him on to Xtandi. He tolerated Xtandi well but as of about 6 months ago, started developing more bone pain and fractures . After a broken rib and collar bone, fatigue and overall pain, he scheduled a mri. It took five months to get scheduled correctly . His primary just read the results as widespread as we await the oncologist visit for next steps. Both UH and Cleveland Clinic are hubs for clinical trials. I’d love for him to avoid chemo but I don’t know if that’s possible . Thank you all so much for your input

[Tall_Allen in reply to Stumpgirl]

Lu-177-PSMA has not been approved. (There is a LOT of misinformation from misinformed patients on this forum.) They have only just revealed the results of a clinical trial. Probably it will be FDA-approved in 6-9 months. When it does get approved, it will probably only approved for men who have already had chemo, because that is how it was tested. If he gets chemo now, he will be in a better situation to receive Lu-177-PSMA when it does get approved later.

[JamesAtlanta]

As everyone stresses, getting started with the next treatment fast is important. I'd want to discuss with my MO the options of LU 177 and chemo. And really press for why the doctor believes your dad should pursue one or the other.

As everyone said, chemo is not nearly as bad as we all imagined. I had 6-rounds...really sort of like getting a mild case of the flu 6-times. It does get a bit worse after each treatment (cumulative).

Before starting chemo, look at some posts on this site with suggestions on how to manage the side effects. You can avoid hair loss, if that's important, by using a cold cap. I worked through all my treatments and did not lose a hair on my head due to the cold caps. Now that I am retired, I'd probably just put on a ball cap and not worry about it. It grows back anyway.

We wish you and your dad all the best in his journey! While none of us want to be doing this, it's remarkable how many blessings we all have - every day - while we are going through it. It brings families close together. And makes us stop and think about what's really important in our lives.

Remember, God never gives us challenges we cannot handle. He's always there with you!

James

[Mormon1 in reply to JamesAtlanta]

Amen my Brother. CTR

[Mormon1]

Did your dad use bone drugs like xgeva BEFORE the fractures?

[Stumpgirl in reply to Mormon1]

No. He has not but we will ask about them tomorrow

[Mormon1]

I have been on a bone drug for 3 1/2 years since they found the P C spread to my bones. I am on Zytiga and receive injections of Lupron and xgeva once every three months. I take daily calcium, K2 with D3 and Iron (Hemaplex). Hemaplex is a miracle when my hemagobin was dangerously low and one month later after taking Hemaplex it returned to just below normal. Good luck. Say a prayer.