Moving forward after Triplet Therapy.... - Advanced Prostate...

Advanced Prostate Cancer

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Moving forward after Triplet Therapy....

LVMonsoon profile image
24 Replies

After ending the Chemo (Taxotere) portion of my Triplet (Orgovyx & Nubeqa) therapy in early Sept, 2024 my PSA bottomed out at .09. Since then, my PSA has risen to 4.10 (December, 2024). MO ordered a PSMA-PET and it showed that the mets I had on my Lymph nodes were gone along with my Prostate, but still hanging on in the pelvis, right leg and L4, L12 vertebrae. MO also prescribed a Guardant 360, which showed I developed a mutation that basically didn't allow the Nubeqa to work as it should. After a lengthy discussion, we decided to start Jevtana and possibly Xofigo along with still taking the Orgovyx. After reading many posts on here (thank you everyone), I don't think I've seen one positive post related to either Jevtana or Xofigo. The Taxotere seemed to work very well on me with moderate but tolerable SE. I'll probably start this therapy in January after a small and unrelated procedure I have to get done in late December. Any comments on whether this next step makes sense would be greatly appreciated...

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LVMonsoon
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24 Replies
KMY28 profile image
KMY28

This must be very stressful so sending you positive thoughts. I’m on Orgovyx and Nubeqa and starting Taxotere in Jan. Curious, did you do any radiation treatments?

dhccpa profile image
dhccpa in reply toKMY28

When did you start Nubeqa? I thought one was supposed to start chemo before or at same time as starting ARPI.

God_Loves_Me profile image
God_Loves_Me in reply todhccpa

No You can start Nubeqa without chemo. I am on XTANDI similar Nubeqa without chemo

dhccpa profile image
dhccpa in reply toGod_Loves_Me

Yes, I understand that one can be on Nubeqa or Xtandi without being on chemo. I just thought that TA had said that if one started chemo while Nubeqa or Xtandi were still working properly, chemo would have nothing to attack. I'll clarify that with him.

LVMonsoon profile image
LVMonsoon in reply todhccpa

I just had a Guardant 350 Genetic test and it showed that I had a mutation that didn't allow the Nubeqa to work anymore....

Milo786 profile image
Milo786 in reply toLVMonsoon

Which mutation did you have?

LVMonsoon profile image
LVMonsoon in reply toMilo786

All doc told me was that the mutation inhibited Nubeqa from working. I just forgot to ask him for the full results…

KMY28 profile image
KMY28 in reply todhccpa

Been on the meds of three months. Rapid timeline of meds, radiation, and chemo. I know there are some on here who say it's too late for chemo, but I've had several conversations with my oncologist (Dr. Mark Scholz) who says there is still high-benefit. Was wondering if you also included radiation as part of your regimen, and if not, that might be something to consider?

dhccpa profile image
dhccpa in reply toKMY28

I'm doing radiation now to prostate and pelvic bed, 6 years after initial diagnosis of metastatic. Weird development. I posted about it a month or two ago

LVMonsoon profile image
LVMonsoon in reply toKMY28

Wow, Doc Scholz, Mr. PCRI, great MO...! My MO wants to start me now on Jevtana and probably Xofigo. No Radiation yet, Mets now only in the bone, my 'Triplet' seems to have gotten rid of it in my Prostate and lymph nodes....

LVMonsoon profile image
LVMonsoon in reply todhccpa

Hi dhccpa, thanks for your reply... I started Nubeqa in May, same time I started Taxotere, started Orgovyx in April.... After 6 courses of Taxotere, PSA dropped from 54 to .09 but has risen over the past 3 months to 4.10...

LVMonsoon profile image
LVMonsoon in reply toKMY28

Hi KMY, Big thanks for your response. I started Orgovyx, Nubeqa and Taxotere last April/May. No radiation. Dropped my PSA from 54 to .09, but 3 months after the Taxotere, PSA has risen to 4.10. I just had a Genetics test and MO says I now have a mutation that basically blocks the Nubeqa from working...

KMY28 profile image
KMY28 in reply toLVMonsoon

How was your Taxotere experience?

LVMonsoon profile image
LVMonsoon in reply toKMY28

Taxotere was basically OK, I know everyone is different, but my thoughts.... Tired day 2-10 of all rounds, but not horrible, lost most of my hair starting Day 4, round 1 (started growing back almost immediately after round 6). Lost taste round 1 for about 15 days, but came back. Rounds 2-6, taste went down to 50% for about 10 days but always came back. Always seemed to have the sniffles, sometimes scratchy throat, but nothing horrible. Watery eyes all 6 rounds, lasted for about a month after last injection of Taxotere. My MO gave me Nulasta on Day 4 for of each round to beef up the white cell count. Nulasta, for me was nasty, worse than the Chemo for about 3-4 days. I did not get bone pain (took Claritin) but really made me feel like someone beat me up. Rounds 5-6 developed some nasty Edema, took about a month after round 6 to clear up. Overall though, I could maintain a relatively normal schedule, walked a lot. It does make you pretty weak, for me, in the legs. Even with the exercise, I fell in the parking lot at Lowes during Round 6, nothing serious and not because of weakness, just being clumsy. I could not get back on my feet, lucky a couple people helped me up, more embarrassing than anything. About 30-40 days after last injection of round 6, was pretty well back to 'normal'.....

Mgtd profile image
Mgtd in reply toLVMonsoon

Thanks and that was some experience in the parking lot. Thanks to that couple for their help and kindness.

NecessarilySo profile image
NecessarilySo

No idea about the drugs but see my bio about heat therapy on my spine.

podsart profile image
podsart

can you tell us which muthation was found that mad daralutamide ineffective?

LVMonsoon profile image
LVMonsoon in reply topodsart

Hi Podsart, my MO just told me that there was one mutation that showed that Nubeqa would not work on me anymore, I did not get further details yet. He did though keep me on the Orgovyx and will probably start Jevtana next month....

podsart profile image
podsart in reply toLVMonsoon

thanks ; you normally would get a copy of that report

God_Loves_Me profile image
God_Loves_Me

Here are my personal opnion. I am NOT medical Advisor.

- if your blood work is stable, I would give shot to clinical trial that in Phase 2 or Phase 3 like ADC treatment or radiopharmaceuticals

- Schedule appointment with Radiations Oncologist, May be there is opportunity to radiate the learge METS

- May be Pluvicto is good options as well. Xofigo is also good. it is really good work if you have pain in bone

- Jevtana is BEST.

LVMonsoon profile image
LVMonsoon in reply toGod_Loves_Me

Big thanks for your reply....! It looks like I'll be starting on Jevtana next month and probably Xofigo around that time, have a consult with the RO after the new year. So far, no bone pain, I've been in pretty good shape since I ended the Taxotere in September....

God_Loves_Me profile image
God_Loves_Me in reply toLVMonsoon

Please update your bio profile

j-o-h-n profile image
j-o-h-n

Would you be kind enough to update your bio? All info is voluntary but helps you and helps us too. Thank you and Seasons Greetings to you and yours.

Good Luck, Good Health and Good Humor.

j-o-h-n

LVMonsoon profile image
LVMonsoon

Thanks for your reply. That about explains it, MO explained it to me that way, my Darolutimide was not working anymore because of the mutation though he did keep me on the Orgovyx. He said everything else on the test looked ok. So, looks like Jevtana and Xofigo coming up next for me…

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