psa rise, but scans stable

[Judymin]

Is it time for new oncologist? PSA now at 29, scans stable still showing mets in lymph only. He is feeling fine, the doc feels we should wait, psa only one part, the other is how he feels and scans. He had chemo, doxetaxol, psa went from 35 to 5, but now doubling monthly. I'm not sure he is aggressive enough with plan. I asked about Eubequa, few other drugs to try after chemo. He feels since Zytiga stopped working these other meds won't work either. I have heard after chemo, sometimes they do. I can't really argue with a doctor as who am I? wife only. We are in South Jersey, any suggestions? We used to see Snuffy Meyers who I liked as thought out of the box, Of course he retired. Should we be worried?? thanks Judym

[Magnus1964]

Has he tried xtandi? It works differently than zytiga?

[Judymin in reply to Magnus1964]

Yes didn’t work. Was in trial with keytruda

[Hidden]

South Jersey near Philadelphia? Penn. Jeff. Fox Chase. 90 minutes away is Johns Hopkins in Baltimore.

[Cleodman]

Finding a new oncologist should be based on your personal relationship with him or her in my opinion. They all do and prescribe the same things. I’m at the Mayo Clinic in Phoenix and I don’t think my care is better here than it would be elsewhere. I do see license plates from all over the country from patients that are convinced that the Mayo Clinic Hospital will do something extraordinary to other places in their home states. Currently no standard treatments are working anymore and I just got referred to palliative care by my oncologist at my age of 47 with no follow up oncology appointments in the future. You need to be your own advocate but if you get a feeling that you are not being heard then yeah sure change but don’t expect too much difference. American oncology is pretty much the same everywhere. Some places have more cutting edge scanners and so on which may be needed in the future but they usually involve therapy options that are not even available in the USA (PSMA-PET CT for example to see if you are a candidate for Lu 177 which is not FDA approved in USA for prostate cancer yet).

[Shooter1 in reply to Cleodman]

Looked into Mayo in Phoenix, but they were too rigid in their care. Northern AZ ONC let me work out of the box with my treatments. Ran myself into neuropathy for life but cancer in remission.

[Cleodman in reply to Shooter1]

Lesser of 2 evils right? Happy for you! Now stay in remission for as long as you can!

[Shooter1 in reply to Cleodman]

Got that right!!

[Concerned-wife in reply to Cleodman]

When I saw your response, I realized that I must have missed your previous post. I am so sad for you that Covid has affected your quest for treatment abroad

[j-o-h-n in reply to Cleodman]

I keep thinking about your situation.....and I really get ticked off... With all the shit we have to fight this ugly disease you are left with the palliative care option. That sucks, meds suck, doctors suck, everyone sucks, even sucks sucks. It may mean nothing but I will say a prayer for you.... This post sucks........The holidays suck.... my ex-wife sucks.....Covid sucks.....my typing sucks....I suck,,,,,

j-o-h-n Thursday 12/24/2020 9:43 PM EST

[Cleodman in reply to j-o-h-n]

Awe thanks j-o-h-n for you kind words...

[Tall_Allen]

Here's some info on optimal sequencing:prostatecancer.news/2019/12...

If all his metastases are in pelvic LNs, he may qualify for Nubeqa or Erleada (Because he is stage N1 and not M1, insurance may cover it). Why not at least try it?

[DarkEnergy]

"I have heard after chemo, sometimes they do."

Yes, Chemo "could" reset sensitivity to Zytiga, you're in the right to ask this question.

I've been able to go SOC+ with my Dana-Farber Oncologist, because of Snuffy Meyers' combinational therapy rationale. So, with PSA <0.02 and no scan signs of progression was able to get Taxotere treatment.

I agree with Cleodman , it's really about communications...

[Doseydoe]

Hi Judym, my wife and I agreed that our Oncologist came across as meek in his explanation of current and future treatment options so we sought a second opinion. The second Oncologists manner was more direct and provided lots of detail in his explanations. I recommend seeking a second opinion, however in the end, the treatment options were the same, just explained better. We stayed with our original Oncologist but learnt to interact with him better. It does feel sometimes like we are questioning his professionalism but we found he was willing to be engaged and posed more open questions. He just needed a prod, train your Oncologist/dragon 🐲 so to speak. You are one of the key fighters in this war. Youre not just the wife, you are your husbands best friend and strongest advocate. You are his warrior woman, keep strong 💪 Judymin.

[teacherdude70 in reply to Doseydoe]

I agree that some doctors need training on how to interact and communicate. Seems that the MD training doesn't do that.However if you can find an oncologist that's a DO you will be very surptised at their ability to connect with you as a person.

Also try for a female doctor, not sexist but they are more empathetic usually.

FYI: I am now beginning my 6th year of pallative care and doing well. Gleason 9; not cureable and yes to say this sucks but it is what it is.

[Doseydoe in reply to teacherdude70]

Hey dude, good points and I agree that APCa sucks. Your reply got me thinking about how I ended up with my Oncologist. Following my biopsy results, my Urologist simply gave me a referral and that was that. Being newly diagnosed and half out of my mind with fear of the unknown, I just went along with the recommendation. There are are only so many Oncologists in town, so I suspect the Urologist simply shares the referrals around. Anyway, my Onc turned out to be a nice guy. All the best for the New Year dude, cheers 😎 DD.

[teacherdude70 in reply to Doseydoe]

Thanks and I hope our new year opens doors toward better treatments.Where I live between two larger cities there are three major Cancer centers. Probably 30 urologists and even more Oncologists.

My suggestion is have an Oncologist as your primary Cancer doctor; that is what they do. Urologists do a wide range of things and few if any specialize in Cancer to the same level as Oncologists do.

[Doseydoe in reply to teacherdude70]

You are correct in your understanding of the roles of urologists and oncologists 👍👏👏

[Hidden]

Hi Judymin,

Seeing as you mentioned that you like to think "out of the box", perhaps you might also consider some complementary supplements that are relatively inexpensive and non toxic.

If you click on my avatar picture you’ll be able to read my bio and some posts I started about my own cancer journey and complementary supplements.

I've been taking Essiac tincture together with CBD oil for almost 4 years and am very happy with my results so far.

When I stopped ADT in early 2017 due to severe side effects my oncologist predicted my PSA would keep rising and my mets would continue to spread.

However, almost 4 years later my PSA is virtually the same as when I was first diagnosed in December 2016 and my 2020 PSMA PET CT scan showed a marked reduction in distant metastases compared to my 2016 PSMA PET CT scan.

I'm the first to admit that there's no scientific peer reviewed evidence showing Essiac or CBD oil to be effective, but I've been taking them for almost 4 years and am very happy with my results so far.

Best wishes

Dave

[dhccpa in reply to Hidden]

What type or brand of Essaic do you take?

[Hidden in reply to dhccpa]

Herbal Tech Essiac tincture bottled in New Zealand.

Merry Christmas to all.

[Break60]

Why not radiate all pelvic lymph nodes? He shouldn’t be waiting.

[Kevinski65]

I take Zyflamend whole body or Zyflamend for prostate. Some kind of study was done in Washington state on Zyflamend. They're both almost the same. It showed a profound reduction in cancer cells. It wasn't a big study but I'm M1 and almost 9 years out, stage 4. Sometimes I need tagamet with it because it causes me to have reflux. Later I found out cimetadine reduces cancer growth. These are very generic notions. I'm on Lupron and Xtandi and I give them most of the credit. Later I got excessive phlegm coming out of one bronchial tube on the right so I started NAC and COq 10 and it seems ok. Later I saw some evidence that it helps with PCa. My PSA just recently was less than 0.04. I'll take it.

[Shooter1 in reply to Kevinski65]

Nice reduction, Keep up the fight. Merry Christmas---One lots of us figured we would never see!!

[RVALuna]

Judymin, You are right to question and try to find a path besides or adds to the standard of care. It is important to know your a cancer mutations to help find drugs/supplements to aid in your fight. I stumbled on to things by google searches and trial and error that have controlled my PSA to slow or reverse it every time it start to grow without ADT after surgery in 1994 ( Gleason8) and BCR recurrence 1999. I found that I had developed a path of treatment for my TMPRSS2-ERG fusion mutation. 50% of men have this mutation which is very responsive to hormone Blockage, but they may have other mutations to battle like P53 and P10 deletion which are harder to battle. You can google " prostate cancer and Peter's notes" to find out more. But Proscar/Avodart worked for 15 years as long as my PSA was less that 2.2 until Dec 2014 which I started in 1999 . By Dec 2017 my PSA was 12.2 and Axumin Scan multi lymph node and a hip bone met . Started Casodex(150 mg) Dec 2017 - PSA dropped 99% over the last 3 years -but has started rise over the last 6 months initially with 5 months doubling time which has lengthen to doubling every 12 months with a few added supplements- PSA as of Dec 16 , 2020 was 0.056. not too bad after 27 years of self directed treat with help of 6 different oncologist and know my GP if I can keep my PSA below 0.2.

Best Pedro Luna