Pluvicto Update

[db1966]

I have had 3 treatments now and unfortunately the pain has increased significantly each week. My PSA has continued to rise also. Had a PSMA SCAN yesterday (Tuesday 30th May) and received the results same day. The news is that the disease has spread completely into my ride hemi pelvis. I knew the news wasn’t going to be brilliant but not this bad. My MO called today and said I need a different therapy now as Pluvicto will not work. Well after 7.5 years I have had 2 rounds of docetaxel, 28 rds of IGRT, Lupron, zytiga you name it. I guess this is the end of the road. What other treatment could possibly be suitable for me now!!! I’m 57 years old and have run out of options.

Not a good few days for me.

[Tall_Allen]

I'm sorry Pluvicto was not effective. You can get Xofigo, Jevtana, and Provenge. Plus, there are many clinical trials. A biopsy of a metastasis (histology, IHC, and genomics) may reveal good trial candidates.

[db1966 in reply to Tall_Allen]

thank you. I’m sure my MO will recommend one of these. I like many and after a 7.5 year journey are questioning how much more of these chemicals we can tolerate in our bodies.

Thanks for the information.

[Tall_Allen in reply to db1966]

No need to wonder. Your liver and bone marrow will let you know.

[db1966 in reply to Tall_Allen]

agreed. It’s unlikely that any of the conventional chemo drugs will work now especially if Pluvicto hasn’t ?

[Tall_Allen in reply to db1966]

I didn't say that.

[db1966 in reply to Tall_Allen]

I know you didn’t. It’s my opinion.

[Tall_Allen in reply to db1966]

I don't know how you arrived at that opinion. It seems unfounded.

[db1966 in reply to Tall_Allen]

it’s just how I feel after all the treatments. I have lost confidence and feel very deflated. My body is tired Tall Allen. No science to my thoughts. Don’t take it personally.

[db1966 in reply to Tall_Allen]

happy for you to give me some positivity stats whilst I am feeling so low. Right now I can’t see where I go from here while I’m sat here in a lot of pain.

[treedown in reply to db1966]

I am not in pain but I understand how you feel about treatments. It's hard sometimes to avoid going to dark places IMO. I can imagine pain gets you there quicker. Hopefully, you find another option and address your pain after you talk to you MO.

[StePeteMN in reply to Tall_Allen]

This is how we feel when stuffs not working. It's just a fact.

[WindChaser in reply to db1966]

Have you considered Lutetium 177? That seems to be about the only treatment offered that actually deals with metastasis. I'm not a fan of all the poisons that comprise "standard treatment" and have thus far avoided ADT and chemo. Once one dives into PubMed and academic papers on prostate cancer and its growth and treatment, one learns that we're not told a fraction of what might be conveyed. Like the 28% greater likelihood of getting dementia or Alzheimer's with more than 8 sessions of ADT.

Check out ncbi.nlm.nih.gov/pmc/articl... where the researcher shows how the "settled science" of how cancer begins and grows is all wrong.

The white-coated grey beards of the medical profession don't care to have patients who question their opinions, but the only consistent winner in all this are the companies who supply the picks and shovels in these goldrush days - the pharmaceutical companies.

I asked my oncologist if there was any treatment he could recommend that actually boosted my immune system. No was the swift answer.

[db1966 in reply to WindChaser]

? I’m halfway through Pluvicto. I’m confused my your post.

[KocoPr in reply to WindChaser]

Windchaser—-That was not an informative post nor was it positive nor did it have anything to do with this warriors plight.

[StePeteMN in reply to WindChaser]

Lutetium 177 = Pluvicto

[Wgly in reply to WindChaser]

I believe that study justifies a Keto diet. No proof, but it might be worth trying

[db1966 in reply to Wgly]

what study would that be?

[Wgly in reply to db1966]

Sorry, the one referenced in Windchaser's post. Well beyond my understanding, but I think it says sugar in diets can be used by cancer cells but fat can't, which is what Keto does, intended as a weight loss program - high fat and low carbs (sugars). If nothing else I've used for two weeks and seen an improvement in my short-term memory - another claim.

[MyDad76]

It always hurts me to read that the treatment is not working. I hope that next treatment will be successful in holding things in control for prolonged time.

Do you mind sharing if you had both PSMA PET/CT scan and FDG PET/CT scan before starting Pluvicto?

[db1966]

thank you I had a PSMA pet scan prior to treatment and after the 3rd.

[MyDad76 in reply to db1966]

Thank you for sharing. I hope that you are able to control the pain with drugs and can enjoy walks with your wonderful furry friend 🐕.

[Zengal79]

I’m sorry to hear your news. As long as your blood counts aren’t tanked and liver is okay, it sounds like there are some options left. My guy continued treatments even against his MO best advice. It’s a very personal decision.

I fully understand being tired of it all. Hell, I was tired of it for him. Take some time to lick your wounds a bit before making decisions. You will hopefully know what is right for you. Tough spot to be in for sure, especially when dealing with pain. If you don’t have one already, I would suggest an adding a palliative care doctor to your team. That helped my guy out a lot. My very best wishes to you in the fight.

[db1966 in reply to Zengal79]

thank you. Yes I have a great palliative care doctor and we are adjusting pain meds as we speak. I can’t complain in the bigger picture as I have had 7.5 years since diagnosis in 2015 as a stage 4. I need to keep fighting as my daughter gets married next year which is my motivation to keep fighting…..but it’s very hard.

[tarzantass in reply to db1966]

i know what you are through as we are in the same boat. We all have to face the fact that we have to leave this world sooner or later. But one last thing we all can do to have a peace of mind is our Lord Jesus Christ. The world we are living now is temporary. Just believe in Him by repenting our sins and accept Him as our Savior Lord Jesus, and we can be saved.

[Zengal79 in reply to db1966]

Glad to hear that. Sounds like you have some motivation to keep on keeping on. My very best to you. Looking forward to a QOL post of you at your daughters wedding next year!

[KocoPr]

im so sorry that are having bad pain. Like TA said get somygenetics and IHC testing done right away and don’t say im sure my doctor will do it. You are your own advocate you push for it you demand it. Get those results and start searching for clinical trials. You and your doggie are so happy together. My puppy just brings me to a whole new place! I am not ready to leave her after we have bonded so tightly.

I just told my MO yesterday that im doing BAT as hormone sensitive before i go castrate resistant and he will support me. What a relief after one year on Orgovyx and Darolutamide i am ready to take charge.

Nina my pitty puppy! Im in love again

[Arcticfox44]

What is your PSA, and how fast is it increasing?

[db1966 in reply to Arcticfox44]

12/16 16.9

2/21 26.7

3/30. 29.1

5/24. 35.4

[Seasid]

Try BAT and do a liquid biopsy.