Help! Grappling with treatment choices.

[Flydoggy]

Hello, I was diagnosed with aggressive PC in Dec. 2015 with a PSA of 18 and a Gleason score of 5+4=9. Had a radical prostatectomy In Jan. 2016, first PSA following was.348. 33 sessions of Radiation therapy followed by 10 months of ADT (to "mop up"). PSA started rising again and is now tripling every 3 months and sitting at 2.8. I had a GA 68 PMSA scan which showed positive for PC in only on lymph node. My surgeon wants to take it out (states we have a 33% chance of getting it all, a 33% chance of it being a false positive, and a 33% chance that we will get it but that it may recur. My Radiooncologist wants to radiate. Any advice or experience with this position would be most appreciated at this point. I am grappling with this choice.

[Tall_Allen]

Did you have whole pelvic radiation when you had your adjuvant radiation?

[Flydoggy in reply to Tall_Allen]

Yes, but not the nodes as the ones they took out during prostatectomy were clean.

[Tall_Allen in reply to Flydoggy]

If you are going for radiation, I think you should consider treating all the pelvic LNs, not just the one you think has cancer.

pcnrv.blogspot.com/2017/12/...

[cesanon in reply to Tall_Allen]

Radiation treatment of two of my lymph nodes wiped out all my irreplaceable cb4 T cells. I now have cb4 T cell levels like an aids patient.

I wouldn't recommend radiation therapy for pelvic lymph nodes.

[Tall_Allen in reply to cesanon]

That's an unusual reaction. CD4 cells are mostly produced in the bone marrow. Since there are no long bones in the pelvis, it would be strange for radiation to stop all production. Chemo and corticosteroids, however, can depress immune function. HIV patients who have had depressed CD4 levels usually see them return to normal after antiretroviral therapy.

[cesanon in reply to Tall_Allen]

Cd4 cells are what they call "educated" or "trained" in the pre pubescent thymus.

You only get so many of them. Myers discovered that a lot of his lymph node radiated patients were getting aids level cd4 levels.

I believe it was related to radiation of a few particular pelvic nodes.

It may not be so unusual. Just not noticed so much. Not many people get tested for this particular type of T cell level.

As you indicated, for most other types of T cells, you have an unlimited supply.

[Tall_Allen in reply to cesanon]

I know many people whose CD4 count has increased on ART:

"HIV treatment is highly effective. Many people's CD4 count will start to climb after starting treatment. Long-term HIV therapy can result in your CD4 count returning to the normal level for your age. Once your CD4 count improves, with continued treatment and care, your life expectancy is very good.

Other factors, such as age, viral load, genetic make-up, lifestyle and quality of health care will also affect your future health and life expectancy.

Some people’s CD4 cell counts do not increase, or rise very slowly, even though their viral load is ‘undetectable’. This can mean people are at greater risk of becoming ill and of dying of HIV-related illnesses. They may also be at greater risk of developing heart disease and cancers."

aidsmap.com/Diagnosed-with-...

Do you have a reference for Snuffy Myers' assertion? I have never seen that listed as a side effect.

In fact, STIMULATION of CD8 cells (a related T cell that is specific against cancer) may be responsible for the abscopal effect of radiation:

frontiersin.org/articles/10...

ncbi.nlm.nih.gov/pmc/articl...

[cesanon in reply to Tall_Allen]

"Do you have a reference for Snuffy Myers' assertion?"

Nothing in writing. Most of Myers radiation treatment patients came from the Dattoli clinic in Sarasota.

I picked up somewhere that Myers' opinion on the cause of the low CD4 t cell levels of those of his patients who received lymph node radiation treatment caused some strain in their relationship as Dattoli vigorously disagreed that his radiation was lowering CD4 t cell levels.

I can say my CD4 is under where it should be (I think that is 200).

Myers had me start taking Pepcid (famotidine) to improve the CD4 levels. It does seem to help.

[cesanon in reply to Tall_Allen]

What are your thoughts on what I can do to increase by CD4 T cell levels?

My CD3 levels seem to be OK. My CD8 is low but within range.

But the CD4 T Cells are not so good.

[Tall_Allen in reply to cesanon]

Provenge? Neulasta? I’m with Dattoli on this one. It’s hard for me to imagine a mechanism where rt depresses cd4 and increases cd8

[cesanon in reply to Tall_Allen]

hmmm It was only two lymph nodes near my back.

My uninformed imagination was that during radiation treatment over a period of several months, my CD4 T cells were flowing through one or both of those particular lymph nodes and getting killed.

Whatever the cause, the low CD4 T cell levels were quite common among those of Myers patients who had radiation treatment of their lymph nodes. I guess those would mostly be the retroperitoneal lymph nodes, because those are the ones that are hardest to operate on and which make the most sense to irradiate.

So you think that Provenge or Neulasta would increase my CD4 T cell levels. I thought Provenge just retrains white blood cells. Is it specific to CD4 T cells?

[Tall_Allen in reply to cesanon]

I think that granulocyte colony stimulating factor (G-CSF, Neulasta) or granulocyte macrophage colony stimulating factor (GM-CSF, which is one part of the Provenge treatment) will stimulate white blood cell production in your bone marrow. They are not specific to CD4 cells, but who cares? When was the last time you had it checked? Did they check the CD4/CD8 ratio? Are you getting sick a lot?

Also, why did the radiation of a couple of lymph nodes take several months? How long ago was this? Nowadays it can be done in 1-5 treatments.

[cesanon in reply to Tall_Allen]

I looked up HIV ART. It does not seem that there is any direct mechanism by which they could increase CD4 or CD8. Other than they hear the general call of battle, then mobilize.

Though if that is the case, it would seem the ART would only have such an effect for someone whose immune system is engaged in a battle with an HIV/AIDs infection.

[Tall_Allen in reply to cesanon]

Yes, ART only works for people with HIV.

[AlanMeyer]

I am not competent to advise you but I have some questions that may be pertinent.

If cancer has been found in one lymph node is there a good possibility that it is in others? Should all of them be treated?

If it looks desirable to treat all of the lymph nodes, will radiation be easier? Will it be more likely to be effective?

I like the 33% comments made by your urologist. It sounds to me like he is trying to be realistic. If he's right, then there is a very good chance (66% by his reckoning) that the treatment will not cure you and you'll be headed for long term medical treatment with ADT and possibly other drugs. If that is the case, and maybe the radiation oncologist can give you his own opinion of the odds of success, do you want to take a chance on further surgery or radiation treatment?

If I were told I had a 1/3 chance of a cure by using a potentially side effect prone treatment, I'd consider it very seriously. You could wind up with serious side effects and no cure. You could wind up with moderate and not serious side effects and no cure. Or you could get lucky and wind up with a cure.

All we may be able to say for sure is that with your 3 month PSA tripling rate, if you decide on treatment, you'll need to get it ASAP to keep the odds of success from getting worse and worse.

I think it it were me I'd ask for immediate ADT treatment to stop the growth of the cancer, right now. I'd ask the radiation oncologist to phone in a prescription for Casodex to my local pharmacy ASAP and then get a shot of Lupron or whatever after a week or so. Alternatively, a shot of Firmagon without the Casodex is a good option (or get the Casodex now and the Firmagon when it's easier to get.) Hopefully, the ADT will weaken the cancer, stop its growth, kill off some of it, and give you a breathing space to get more information and make a more considered and informed decision. Then you can either forgo the attempt at curative treatment and stay on ADT (adding either chemotherapy or Zytiga) or get radiation along with the ADT. The ADT supposedly make surgery more difficult but radiation easier.

I'm no expert, but those are my inexpert reactions to your dilemma.

Best of luck.

Alan

[Flydoggy in reply to AlanMeyer]

Thanks for your input. Starting ADT to slow things down on Tuesday. Still weighing benefits and drawbacks of both...

[Hidden in reply to AlanMeyer]

What an informed and caring response , as always, Thanks. AlanMeyer. Good health to you!

[Hidden in reply to AlanMeyer]

Spot on, Alan. What frequently is lacking in the replies is that each treatment often comes with very serious side effects. They may not show up today, or tomorrow, but they are cumulative and the side effects of treatment are often as debilitating as doing nothing. Studies aren't designed to follow patients long term, so until they show up you think you made the right decision.

[cesanon]

Maybe evaluate chemo or lu177 treatment.

[Flydoggy in reply to cesanon]

My doc says it is too soon for Lu177.

[cesanon in reply to Flydoggy]

Hmmm why would it be to early?

You might want him to explain the reasoning. Is that insurance company reasoning,

is it medical reasoning, or is it

"we don't do that here" reasoning.

[Hidden in reply to cesanon]

Maybe it's the "you are pretty healthy and active at this point so let's wait and see how you progress and not use you as a Guinea pig" reasoning.

[cesanon in reply to Hidden]

Yes, that could be a variation of medical reasoning or it's own 4th category.

[Flydoggy]

Forgive my ignorance, but are Zytiga and Xtandi chemotherapy drugs? Im in Canada, and don't believe that is usual protocol here.

[Hidden in reply to Flydoggy]

They are adt drugs..

[JoelT in reply to Hidden]

Zytiga and Xtandi are second line hormone therapy drugs. They are not chemotherapy. The FDA has approved two different chemotherapy agents for prostate cancer, they are Taxotere (docetaxel) and Jevtana (cabaziltaxel).

Joel

[Flydoggy in reply to JoelT]

Thanks for the info, so much to learn. Can get pretty overwhelming!

[Hidden in reply to Flydoggy]

Youll figure it out with your doctors . You dont have to be a rocket scientist now. Sometimes its like the “ Mad Hatters “ ride Flydoggy just try to hold on.. What a ride.. take good care of yourself now and youll benifit. Stress is the enemy, fear and confusion will pass then you plug at it to the end. A new way of life. But life none the less. You’re not alone in your thinking. We’ve all been there. It will get better with alot of acceptance. Stay happy , life isnt over for us yet. Make the most of your relations and the people and things that you love.. Remember things CAN get better. But they could also get worse. Thats why today is important like every day not to get bogged down in fear. Whatever comes ! Youll face it, we cant roll over and play dead. Someday we will , but not today friend. A year from now youll know more about APC and then you can help other new guys . Takes time for this major life adjustment to settle down into ... 3yrs in and im only now accepting the changes most of the time .. ive had much anger and depression being casterated after being pretty testosterone driven since a kid. I had a good run with T. Now it sems it will kill me. Feminized you will get you in touch with our feminine sides. keep soaring Flydoggy!🤙🏼

[Hidden in reply to JoelT]

Thanks JoelT.. good day to you!

[David20451]

I had SBRT - focused radiation on a 4cm x 4cm iliac chain lymph node. Two years later had it down again. Obviously didn't get it all. Four years later following Provenge started Xtandi. Four years later PSA still <.01.

[cesanon]

I heartily recommend Joel's group

[JoelT in reply to cesanon]

Thanks for the recommendation

Joel

[Hidden]

<.01 oh yah!