live with prostate cancer : Since 202... - Advanced Prostate...

Advanced Prostate Cancer

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live with prostate cancer

Mkhaz profile image
19 Replies

Since 2021 I was diagnosed with type 4 metastatic prostate cancer ,started my chemo with texatere my PSA is below 0 , taking lupron injection every 6 months my PSA is normal since then

Now in july 2023 my PSA start increasing to 2.96 and no sign of cancer in my last Pet scan

Now my Oncologist ,recommended to take Zytiga or Nubeqa on top of my Lupron.

I appreciate for any advice if someone has similar problem and what the side affect.

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Mkhaz profile image
Mkhaz
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19 Replies
Bret5 profile image
Bret5

I’m doing triple therapy - Eligard injections, Nubeqa, chemo with Docetaxel, and Zometra for bones. I’m on second month of Nubeqa. I have not seen any side effects from it. You have to get a dental clearance because in some cases, rare, it causes jaw bone issues. It also is very expensive even with insurance. Although in 2024 and beyond the inflation reduction act will greatly decrease max out of pocket, assuming you are on Medicare.

swwags profile image
swwags in reply toBret5

2025

maley2711 profile image
maley2711

Besides what you learn here, and from your Doc, suggest you use Google and pubmed to look at latest pblications re life expectancy results with and without any new drugs, and then hopefully also find statistical data on side effects from those new drugs?

RMontana profile image
RMontana

You also need to consider doubling time not just PSA level. Take a look at this podcast.

healthunlocked.com/active-s...

…and then you cannot use PSA measurements that are taken with testosterone is either going up or going down. Those values don’t count. So it’s important to know which PSA points to take what time frame. Then see what your doubling time is. Less than 15 months is a concern but I don’t know what yours is. See this podcast at Min 15;45 may also help you manage your case with the three examples given. They go through a complete lifecycle of the disease. I found it very helpful.

“Min 15:45; PSA doubling time – how, when and under what conditions should PSA measurements be used to calculate PSADT…key to knowing the rate your PCa is progressing (affects PCSM mortality).”

healthunlocked.com/active-s...

Magnus1964 profile image
Magnus1964

From here on I would recommend a singular ADT drug at a time begin with Casodex or Zytiga. Stay with each till PSA rises.

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

Maybe a maybe but I feel tired and want to sleep all the time since using Nubeqa (started 3 months now). Coincidence or my age 86?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/28/2023 12:04 PM DST

Mkhaz profile image
Mkhaz in reply toj-o-h-n

thanks John for the update ,would you recommend take it at evening ? Good luck and wish you the best.

j-o-h-n profile image
j-o-h-n in reply toMkhaz

to Mkhaz, Re:Nubeqa.

The prescription is for two tablets (300 MG each) in the morning with food

and two in the evening (300 MG each) also with food.

Hope the sleeping is just my age......and I wish you the best.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/28/2023 10:35 PM DST

Boywonder56 profile image
Boywonder56 in reply toj-o-h-n

Your still young....blame it on the drugs

j-o-h-n profile image
j-o-h-n in reply toBoywonder56

Thanks.....Now if I could only blame the women on the drugs.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/01/2023 9:28 AM DST

Boywonder56 profile image
Boywonder56 in reply toj-o-h-n

Well ive made some bad choices on drugs....or is that ive made some bad choices of drugs...none the less...just like there are good drugs ....and bad women.....we pays our money......we takes our chances...hopefully...you have some money left.....to spin the wheell agin.......☘️

j-o-h-n profile image
j-o-h-n in reply toBoywonder56

I have the wheel...... but unfortunately no spokes...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 08/01/2023 2:48 AM DST

Mkhaz profile image
Mkhaz in reply toj-o-h-n

I haven’t start my Nubeqa yet this medicine is Godly expensive 13k /month and my medicare insurance doesn’t cover 100% my copay $3300 iam still waiting for the manufacture help!!

Derf4223 profile image
Derf4223 in reply toMkhaz

I'm curious that Abiraterone isn't the med of choice for you?

Abiraterone is available generic very cheaply -- I use scripto.com . A three month batch runs about $350+/-, cash (credit card) only, no insurance accepted.

As for SE's -- all such meds have SE's and you will be monitored monthly for them.

PS Exercise as in resistance training and cardio, helps reduce PCa mortality risk and has no worrysome SE's.

GL

j-o-h-n profile image
j-o-h-n in reply toMkhaz

Expensive oh yea! Lets hope you get assistance....(ask your MO for help)....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/02/2023 11:26 AM DST

slpdvmmd profile image
slpdvmmd

Assuming that you had a PSMA PET/CT. If so remember that depending who you read 10 to 30%+ with rising PSA will have a negative PSMA PET/CT. Has you MO considered other imaging modalities??

Mkhaz profile image
Mkhaz in reply toslpdvmmd

hi my oncologist recommends the Pet/Ct scan only I never thought of an other modality ,what you mean an MRI for example? thanks for replying.

slpdvmmd profile image
slpdvmmd

There are different types of PET/CT to include FDG PET/CT that has been advocated for by some on this forum and by one Australian researcher. It in some instances my detect prostate cancer that is not PSMA avid. PET/CT usually trumps MRI, bone scan and conventional CT. Simplistically (which is probably the level of my knowledge) PSMA PET/CT looks for a surface marker often expressed by prostate cancer cells, whereas FDG PET/CT measures increased glucose consumption which some cancers will demonstrate. So PET scans can be grossly broken down into those that look for markers and those that look at metabolic activity. I have found that talking to both a medical oncologist and a radiation oncologist can help you sort out the best imaging path to follow. Unfortunately radiologists who focus on imaging modalities do not in my experience engage with patients.

hopefull99 profile image
hopefull99

I started with Zytiga July of 2022. My PSA has dropped from 16.7 to 0.12. I had one shot of Lupron (3 month type), and my Testosterone dropped to zero but started creeping up to about 10 earlier this year. Had scans last month and the cancer load had actually decreased a bit. MO wanted to keep me on Zytiga until it failed and then deal with cancer with what would be appropriate at that time.

I did not want to stay on Zytiga until it failed. Wanted to be proactive.

I changed my MO. New MO is recommending radiation for primary tumor as well as the 4 mets I have. She restarted me on Lupron. She says I should stay on Zytiga for at least another year.

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