I'm new here, glad to be part of this great site!
I've just finished chemo for metastatic prostate cancer, and my oncologies has offered me a trial of apalutamide or darolutamide. Do any of you have any experience with either of these? Any advice is welcome.
My MO is telling me that Darolutamide is a superior drug. Most of the medicine doesn’t get through the blood brain barrier so there are less cognitive issues. Also, she said Daro works better on some of the mutations. There is a study out there that compares the side effects of Daro vs. Apalutamide and Enzalutamide. Would be good if you talked to your MO and see if they have the same understanding.
Unfortunately, there have been no studies directly comparing them yet. There is data on the ability of apalutamide (Erleada) to slow progression and increase survival in men with metastases, but we only have data so far on darolutamide's (Nubeqa) ability to slow progression in men who are non-metastatic but castration resistant. Nubeqa does not activate GABAA receptors, so it may not cause as much fatigue (although it is still a major side effect). Also, it doesn't cross the blood-brain barrier, so psychological effects (e.g., seizures, memory loss) may not be affected as much. Erleada prevents upgrading of the androgen receptor so it may stay effective longer than Zytiga or Xtandi - we just don't know yet.
Welcome to my life saver 😀😀. I don’t have any experience with those two drugs but my oncologist put me on Xtandi when I finished chemo. That was 36 months ago. So far so good 😀😀. PSA has stayed at <0.05 since then. I’m sure the boys here can be of more help. Fight a good fight. 🙏🙏
I agree with the above info on darolutamide. (Not crossing B-B Barrier or activating GABA) And it may prove to be superior across other stages of the disease. So if I were offered the opportunity to take it in a trial (over Xanti and Erleada) I personally would choose it based on the currently available information.
Greetings VintageGuy Tell us more about yourself; Your vintage, location, scores psa/gleason, treatments to date, location sites, Doctor's name(s)? All info voluntary but it helps us help you and helps us too. Thank You...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 12/10/2019 10:20 PM EST
Hi
My latest PET Scan report stated "there is a subtle CT evidence of healing sclerosis"
I have taken this as confirmation the PEMF therapy using a device purchased from an LA company is working.
Check out the YouTube a TED presentation by Bill Doyle and others.
Dump the Chemo and drugs.
Thanks to all who replied to this post. I sincerely appreciate it. I have an appointment with my oncologist tomorrow, and this is invaluable information for me. Thanks again!
What did you decide? Are you trying the Darolutamide? My husband started Darolutamide a month ago as a Hail Mary after Xofigo caused bone marrow failure. His blood test last week showed PSA dropped from 36 to 30 and alk phos dropped from 348 to 316 Here are the alk phos numbers and PSA from shortly before the time he started Xofigo through last week. He started Xofigo early Sept and had 4 injections with the last one being Dec 4th:
alk phos:
6/11/19: 84
7/25: 305
8/1: 438
9/6: 547
9/18: 341
10/2: 277
10/29: 256
11/26: 197
12/31: 248
1/21/20: 490
2/4: 348 - *started Darolutamide on Feb 7th
3/10: 316
PSA:
(he was on Lynparza + Zytiga + pred since early 2018, which kept PSA in mid 3's - life was very close to normal!)
3/26/19: 3.24
4/23: 3.06
6/11: 3.32
7/25: 5.98 - changed pred to dexamethasone to extend Zytiga
8/1: 12.39 - stopped Lynparza in prep for Xofigo due to too much effect on CBC
9/6: 3.54 - started Xofigo & had 4 monthly injections
9/18: 3.84
10/2: 3.79
10/29: 5.30
11/26: 9.88
**12/20 trip to ER for bone marrow failure - hemaglobin plummeted to 6.1 - stop xofigo
12/31: 11.58
***1/7/20 - CT Scan and MRI show no progression so MO says because PSA rose, cancer is spreading, but he can't find it so he assumes all the spreading is in the bone marrow-
2/4: 36.09
2/7 -Start Darolutamide @ 600mg 2x/day = 1200mg/day + 2mg dex
3/10: 30.51
Blood counts not improving at all - yet? BIG question is, can Darolutamide help bone marrow recover?? I've read it can take a while to really start working - anyone else hear this?
Notes:
** started taking melatonin supplements around early Feb - 20 mg, then upped to 30mg a few days ago (to help counteract possible insomnia from, on 3/10, MO upping dex. from 2mg to 4mg/day) - no pain yesterday + PT nurse (3rd session was yesterday) said she sees a marked improvement in strength, etc. Night before last, husband surprised himself - said he was walking across the house on his own, forgot to use his new walker!
*** side effects (and/or cancer??) while on Darolutamide - discomforts are on/off/moving severe pain in knees, leg muscles weakening, severe fatigue (from drugs or bone marrow failure - or probably more likely a combination - also from lack of use as he has become so fearful of the pain returning, he lays immobile in bed. New PT nurse is getting him up, which is helping a LOT)
Notes:
** after using pain meds rarely, and just when needed for the last 1-1/2 years, started taking them regularly a couple weeks ago to help with severe knee pain, but nothing was helping, not even OXY. Palliative care Dr changed to low dose slow release morphine, 15mg, 2x/day which helped a bit, but not enough, so started trying medical marijuana in early March. Could only get 2:1 CBD:THC (integrative care Dr recommended 15:1, but 2:1 was all dispensary had) Mar 3rd, had severe muscle weakening and loss of coordination - couldn't even stand up/get up (so I had to buy him a walker)- later realized that was from the extra dose of the medical marijuana that morning. VERY scary and traumatic for us!! Next day, Wed, March 5th, lower lip and chin numbness (could be from a lot of things, including marijuana and/or cancer - many people taking marijuana complain of this lip/chin numbness, but I read it should only last up to about a week, and this is now 10 days) So STOPPED medical marijuana, fearing the side effects. Also, side effects from morphine may be contributing to these odd side effects, so went back to low dose slow acting OXY, "xtampza". (hands aren't jittering now!) Didn't need any pain meds during the day yesterday, so only took the xtampza before bed. (from increased Dexamethasone or from Darolutamide working??)
Chemo after zytiga
Pain after Chemo
Neutropenia after 1st chemo 
Fever after chemo
Chemo After Provenge?
