PSA seems stuck around 1.0 while on Orgovyx and Nubequ

[joeguy]

After a few months experimenting with Nubeqa as a monotherapy, and seeing PSA climb to around 4.0, I added Orgovyx to the mix. Initially PSA dropped to 1.07, but after several months of daily orgovyx and Nubeqa, PSA seems "stuck" in the 1.0 range. A PSA of 1.0 seems to be fairly encouraging, but Im wondering if it could actually be problematic considering I have grade 5 tumors, and I am castrate resistant. Hoping the combo of Orqovyx and Nubeqa continue working, as I have tolerated them very well with few SEs, but am a little concerned PSA is not continuing to drop.

[Longterm101]

Do u have any current mets? Last scans?

[joeguy in reply to Longterm101]

yes, have multiple lymph node mets from pelvic area extending up to periaortic region. Its been about 10 months since last scan.

[Longterm101 in reply to joeguy]

Hoping things are stable …

How long have u been on nubeca

[joeguy in reply to Longterm101]

About a year total. I was trying it as a monotherapy for about 8 months after having a terrible SEs from Firmagon and Xtandi. The monotheraphy experiment failed, so about 4 months ago I added Orgovyx to go castrate again.

[Longterm101 in reply to joeguy]

Understood

Good luck and keep us posted

[Teacherdude72]

Nubeqa as mono therapy for pca with mets? Bayer states Nubeqa with Lupron/Eligard shots works best. Surprised you get it given mets and no Lupron. I am now in my 11 month of Nubeqa, no mets, and Lupron with psa undetectable. Seven yrs ago diagnosed with G9 aggressive pca. Returned twice with meds knocking it down both times.Best of luck and live strong.

[joeguy in reply to Teacherdude72]

yes, I had been on a drug vacation after 3 years of Firmagon or eligard with Xtandi. I was having major cardiac and cognitive SEs. When PSA started rising while on vacation, I decided to ease back into ADT by trying Nubeqa as a monotherapy (it by far had the best side effect profile). At the time I was not technically "metastatic" because all the lymph nodes we could see, were below the split in the aorta, and therefore considered "non-metastatic". I have since had a more sensitive PSMA scan done, and it showed lynph nodes from the pelvic area up to the lower part of my chest. I have always thought it was kind of silly how they classify some drugs as for use in "metastatic" or "non-metastatic" only. I had a difficult time getting Xtandi several years ago because all known lymph node mets where in the pelvic area and not considered "metastatic".

[dhccpa in reply to joeguy]

Yes, that distinction has puzzled me as well.

[Teacherdude72 in reply to dhccpa]

It is referred to as oligometastatic cancer.

[GeorgeGlass in reply to joeguy]

Joe, do you attribute the cardiac problems to aortic lymph nodes or due to general problems with your heart as they related to the lack of testosterone? I have a similar cancer pattern as you, which is why I ask. I have suspected cancer in my aortic lymph node.

[joeguy in reply to GeorgeGlass]

Not sure what role the cancerous lymph nodes in the aortic area might play, but the tachycardia, and irregular beats was definitely from ADT. The blockage I developed in my LAD was most likely growing for years, but I feel like Xtandi caused it to speed up

[Sam1962 in reply to joeguy]

May I ask what kind of cardiac side effects you had and how did you treat them?

[joeguy in reply to Sam1962]

Tachycardia and a lot of irregular and skipped beats. I also developed a 70% blockage in LAD, which I attribute somewhat to Xtandi, but suspect years of eating bacon caused the blockage to start developing years ago. Stopping ADT drugs for a drug vacation caused the tachy and irregular beats to stop, along with some heart drugs like Metoprolol. Blood thinner and 4 fish pills a day seem to be keeping blockage in check

[Sam1962 in reply to joeguy]

Very helpful. Thanks. We just leaned that I have severe calcification of the LAD which I believe was caused partly by the Calcium pill I was advised to take when I started Lupron 5 years ago - I just learned that it’s high risk to take a calcium supplement since the body cannot absorb it and it stays in the blood and can cause blockage in the arteries; I am reviewing the impact on heart health now from long term Lupron and Nubeqa which has kept my PSA undetectable for two years and everything stable and in remission (diagnosed G9 with abdominal nodes affected) - this recent development is a wake up call regarding heart issues caused by ADT.

[joeguy in reply to Sam1962]

I was also told to take calcium for a year or two when I first started ADT because of bone thinning,,,,, I think it along with Xtandi caused rapid build up of calcium in LAD

[Sam1962 in reply to joeguy]

I agree with you - Important lesson to learn. MO’s seem to forget about the heart.

[GeorgeGlass in reply to joeguy]

Taurine supplements can help with irregular heart beats. I read a study at NIH done on men with palpatations. I had palps after Levaquin and covid vaccine. The daily Taurine solved the problem in a week or two.

[joeguy in reply to Teacherdude72]

Were you at undetectable while on Lupron alone, or did the addition of Nubeqa get you there?

[teacherdude70 in reply to joeguy]

Full story:. Was on quarterly Eligard and it failed...psa went from 0.5 to 2.18 in one month after the shot. Got a monthly Lupron and psa dropped to less than one. Started Nubeqa the next month. Psa dropped to undetectable the second month on Nubeqa. Still have Lupron monthly....my choice - another conversation.

[Sam1962 in reply to teacherdude70]

Is there a reason you prefer monthly Lupron to every 3, 4 or 6 months?

[elkmt in reply to Teacherdude72]

i always like to here a guy still talking after 7 years with a G9 . i am 4 years with my G9 and doing ok. how has your PSA done over the years.

[teacherdude70 in reply to elkmt]

Short answer, after 25 sessions of IGRTand 2 sessions of HDR Bract plus 24 months Lipton psa dipped to 0.16 from 20.6. 2 ys later it rose to 2.18. Biclutimide dropped it to 0.6 then failed. Eligard after that and a month into my 6 month shot that was an accident (was to have been a month shot) rose to again 3.17.

This was last April. Immediately on monthly Lupron and Nubeqa. Second month psa was undetectable. Still is 11 month in.

[GeorgeGlass in reply to Teacherdude72]

TD, do you have the link that shows Lupron/Eligard agonists work best (better than antagonists like Orgovyx? I want to have it when I meet with my doctor.

Also, I don't think Bayer or anyone else compared continuous ADT+Nubeqa against Mon-Nubeqa or mono-Nubeqa with Intermittant ADT, but I'd like to see the study results if they did compare those.

It's great to see you are doing well! All you are doing now is Lupron+Nubeqa? Did you get any side effects or blood level issues with the Nubeqa?

[Teacherdude72 in reply to GeorgeGlass]

Full set of monthly blood Tests show no issues. Other than hot flushes zero energy. Offset that with daily gym work.As to studies never looked and now in Jamaica for the month on vacation.

Check with your oncologist for studies and let me know the answer.

[GeorgeGlass in reply to Teacherdude72]

That’s great man. Have fun in Jamaica! We deserve that kind of vacation.

Where did you read that lupron is preferred over orgovyx?

[teacherdude70]

The reason for the metastatic" or "non-metastatic is based on the trials used for approval. Nubeqa, I think, has recently been approved for mets in limited situations.Its the monotherapy that caused my question and you explained that well.

[Pianodude]

I have been on Orgovyx for around 8 months. We added Nubeqa 6 weeks ago. I am still castrate-sensitive. My current PSA is 0.1, which is the lowest it has been thus far.

[joeguy]

.10 is a great number..... basically considered "undetectable". Hoping mine gets unstuck from 1.0 range and gets closer to your number.

[j-o-h-n]

Some guys would give up their wives for a 1.0 score.............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/26/2022 10:04 PM DST

[Jmr11820]

Where was your PSMA scan done?

[joeguy]

Had it done at the university of Iowa. If I remember right it was about $2200. They have a nice new scanning facility there.

[GeorgeGlass]

what about staying on the nubeqa and doing intermittant Orgovyx? Seems like it might be as good or better than continuous on both, but I'm pretty sure there are no studies comparing this.

[joeguy in reply to GeorgeGlass]

Psa rising now while on Orgovyx and Nubeqa. Will be pursuing lu177 trial

[GeorgeGlass in reply to joeguy]

I'm sorry to hear about the Nubeqa effectiveness waning. Hopefully LU177 will be as effective for you, as I've seen for some other guys. What location are you doing that trial? I was thinking about joining the one in LA but I'll probably try Nubeqa first.

[joeguy in reply to GeorgeGlass]

Looking at Dallas for lu177 trial

[Teacherdude72]

Ask your onco about Lupron monthly shots.

[GeorgeGlass in reply to Teacherdude72]

I asked that in the past. They recommended lupron 3 month or orgovyx.