PSA still rising on 2 types of chemo treatments

[Daddysdaughter]

So my father has now finished 3 rounds of Jevtana and carboplatin. His PSA has only gone up 1-2 points over the last 3 infusions, but today it went up 3 points. Not much compared to

The doubling time before but I’m Still concerned if chemo is working or not. He has NEPC and the plan was 3 rounds of chemo and then a CT scan. All this and no results are coming back positive yet. I don’t want to waste time with chemo especially because all the numbers so far have showed no improvement.. I can’t imagine that his scan will be any different. So what to do next? Figure out which treatment he should try next. Is it CAR-T, PRRT, LU-177?? I fear that his MO will say continue chemo and we will see. I don’t want the chemo to weaken him to the point he cannot revive or qualify for other treatments.. what do you all think??

[Dan59]

How high is his psa now? 2 or 3 point rises are not that much, Mine jumped 20 after first Jevtana. IMO three tenants of if a therapy is working are 1. If it reduces disease. 2. If it maintains stable disease. 3. If it slows doubling time.

Is your Father doing ok so far with his chemo side effects? Are his WBC and platelets maintaining in range? Is he in a Location where it would be possible to get these other treatments? I wish you both the best.

Dan

[Daddysdaughter in reply to Dan59]

Hi Dan, we are in Southern California and my fathers treatments are all At city of hope. Yes CAR-T is available they are still waiting for IRB approval. His WBC are 11.7 he has never dropped below 6.8. His Hemoglobin has been slowly decreasing now at 9.1 platelets are 160’s stable.

How about BIRM, now I’m thinking to have him start.. what do you know about this and what company does anyone recommend?

[Dan59 in reply to Daddysdaughter]

The blood numbers seem good, I would assume that would continue. I have only just recieved my first bottle of Birm in the mail from amazon, I figured it could not hurt , and may help boost energy while on chemo, others here have a lot more experience with it. I will see how it goes.

Dan

[Daddysdaughter in reply to Dan59]

What brand did you purchase?

[softwaremom00 in reply to Daddysdaughter]

My husband uses BIRM. If you can afford it buy the concentrated BIRM from the website. Take it 3 times a day. The distributer will bill you through paypal - url is birmproducts.com/en

Will post more later... I gotta run!

[Tall_Allen]

Here are some clinical trials that he may be interested in:

pcnrv.blogspot.com/2016/12/...

[JLS1 in reply to Tall_Allen]

Thank you for that very informative link!

[Chiquis]

Hi Daddysdaughter,

I understand your concern. Being patient when it seems like treatment isn't working can be difficult. He's halfway through chemotherapy ("my husband is too"). Let us hope for the best. You are a great Daughter, your Father must feel very loved knowing that you are by his side. Take care🙏💛

[Daddysdaughter in reply to Chiquis]

Thank you, I need patience with treatments. everything else in life I have maintained patients but with chemo 21days between results seems like 3 months!! Thank you 🙏🏻

[softwaremom00]

More on BIRM -

Here is how I get it:

1.I send an email to the company and ask for a bottle of BIRM Concentrated and tell them my paypal email and my mailing address.

2.They email me an invoice.

3.I pay it through paypal and it arrives a couple day later

My husband takes it 3 times a day.

My husband seems to tolerate it well. It tastes bad though.. so you might want a chaser .. or you could put it in his morning smoothie. At first see if he can take it and then chase it(follow it) with a drink that he loves ..

Be patient with your Dad's therapy.

How is his chromagranin score ?

Remember that with all of these scores some changes are normal. Markers can increase with tumor die off.

I am sending you positive wishes for a good scan. It will be good ! It will be good!

Tons of hugs and prayers!

[Daddysdaughter in reply to softwaremom00]

Not the news we were praying for😕 scan shows multiple Mets to spine and pelvic bones. His lymph nodes have only grown minimally and no new nodes.. again I guess that the chemo is keeping it stable. Except for these new spot in bone. Now I think our plan is to do a biopsy and see what it shows. His Chromogranin did decrease from 409 to 385 but PSA increased from 18.3 to 21.6. So chemo is keeping it stable kind of??? Not sure really.. his MO recommends after biopsy possible immune therapy with keytruda... I don’t know much about this..

[softwaremom00 in reply to Daddysdaughter]

So sorry about the mets to spine and pelvic nodes. Glad there are no new nodes. Keeping it stable is not a bad thing. You can live with cancer as long as you manage it. I am confused about the biopsy.. didn't they biopsy it when he was diagnosed ?

Have they considered anything for the bone mets like Xofigo ?

They would not do Xofigo here for my husband .. the nuclear medicine folks qt the cancer center give the oncologists a hard time using it for neuroendocrine prostate cancer. This is why we got strontium and then Dr Arap had them do a lose dose of chemo for 6 weeks right after the strontium.. this was (We think ) to radio sensitize the cancer to the strontium. It was an easy treatment... unusual though. We did 5 out of 6 of those treatments as it was such that if my husbands counts were too low then the dose was skipped. I used RealBuild to help keep his counts up high enough to get as many of the sessions as we could

After this we were going to look at immune therapy. For now we have been able to delay the immune therapy.

Are you going to finish the chemotherapy or does the oncologist want to stop ?

I am still praying for you and your dad! Lots of hugs!

[Daddysdaughter]

Hi, we haven’t done the biopsy yet. Plan is to continue chemo, do biopsy figure out what the target treatment will be. His MO recommend immunotherapy she is explaining that the bone Mets can be “old dying cancer” I’m not sure how to understand this??. Then she said that he would be if it from immunotherapy.

Keytruda.. thank you... wishing strength and prayers to you and your husband. ❤️🙏🏻