Metastatic Disease Has Finally Arrived

[Pmann]

Well folks,

I wanted to update my progress, trying to get approved for PSMA PET scan and had to get a CT before that. It showed enhancement on two pelvic lymph nodes and that will get me qualified for some additional treatments. Still trying to get PSMA PET approved.

My oncologist is starting me on Orgovyx and getting me set up to try Provenge.

Current PSA 2.2 and rising pretty quick. Had prostate removed in 1/22. First diagnosis in 2000.

Can anyone share their experiences with either drug?

Once again appreciate all the information and sharing.

[spinosa]

Wait - it was 22 years before you had your prostate removed? Am I understanding correctly?

[Pmann in reply to spinosa]

Yes, that is correct. Started clinical in 2001 with radiation followed by ADT, then chemo in 2006, more ADT and have kept it at bay until last year when the urologist said they could remove an irradiated prostate to lower the tumor burden. I said take it out. I have also been through Erleada and Zytiga in addition to most of the ADT drugs, zoladex, lupron, eliguard.I am a blessed individual to have survived this long.

[spinosa in reply to Pmann]

yes, you are! That's an unusual story. I was diagnosed in 2002 - had a radical, with casodex preceding the surgery. Stage 3 after sugery. Clear for 12 years...then, PSA went up and down, .8, 1.2, 1.6, etc. After 3 years, hit .2 - had 40 radiation treatments. That was four years ago, so...fingers crossed - for both and or all of us. Good luck to you.

[addicted2cycling in reply to Pmann]

Pmann wrote --- " ... trying to get approved for PSMA PET scan ... "

Color me confused???????????????

Your 66, PSA 2.2, been treated ???? PSMA PYLARIFY PET IS MEDICARE APPROVED and paid for

[Pmann in reply to addicted2cycling]

Well I am still working and still on company insurance (BCBS of Alabama)which is not too good. I change over to medicare supplements in January.

[addicted2cycling in reply to Pmann]

Understand, GOOD LUCK 👍👍

[Tall_Allen]

You can get salvage radiation to the entire pelvic LN area with a boost dose to the two nodes that have been identified. That would be a great thing to do with Provenge, since there is a synergy.

[Pmann in reply to Tall_Allen]

Thanks TA, urologist said before prostate was removed that another round of radiation was not an option for me since I had it in 2001.

[Tall_Allen in reply to Pmann]

Don't take radiation advice from a urologist - he probably has no idea, but that doesn't keep him from expressing an opinion. Talk to a radiation oncologist.

(1) You probably did not have your pelvic lymph nodes treated in 2000, so it is not overlapping.

(2) You probably had the low level level of radiation they were giving then.

(3) Also, tissues recover over time.

[TJGuy in reply to Tall_Allen]

Tall_Allen. That is the first time I've read anything about tissues recovering over time from radiation.

Dr's have described to me that radiation turns tissue I to a something along the lines of deformed melted tissue.

Of course the cancer cells are not supposed to be able to repair the DNA breaks radiation causes while regular cells are suppose to be able to repair damage to them.

Do you have any idea how long it takes for tissue to recover. For must of us that might have been Pelvic bed alone or possibly with pelvic lymph nodes, so either just pelvic bed or whole pelvic. With today's levels of probably at 66 gy for pelvic bed and 50 or 55 gy? for lymph nodes. While given in fractions of around 2 gy.

Can this recovery of tissues be determined by any means?

[Tall_Allen in reply to TJGuy]

Longer is better. It's individual - no formulas.

[dhccpa in reply to Pmann]

Why are you still having a urologist direct your treatment at this late date? Instead of an oncologist?

[Pmann in reply to dhccpa]

The urologist provided the service of prostate removal. I have a very capable oncologist.

[dhccpa in reply to Pmann]

Ok great. I hadn't picked up on that.

[Pmann]

Thanks and I will bring that up with the oncologist.

[thudson1965 in reply to Pmann]

@pmann Please update your profile. Please state that it was 22 years. Your story offers so much hope and insight for us that may follow your path.

Thank you - Terry

[Seasid]

Could you please fill out your profile?

[dhccpa]

How did you qualify for Provenge?

[Pmann in reply to dhccpa]

I thought the reason was evidence of metastatic disease, will have the PSMA PET before any other treatment.

[dhccpa in reply to Pmann]

For whatever reason, I thought Provenge required mutations. Maybe I'm wrong on that point.

[oldworldhomes]

Consider proton to those 2 areas.

[MateoBeach in reply to oldworldhomes]

Protons are not actually the best in the pelvis like they are in other areas.

[Starstation]

I have been on Orgovyx for about six months. I have tolerated it very well and it has been extremely effective--after just the first month my PSA went from 11.9 to 0.39....I get labs every three months and have been undetectable after the first PSA reading above.The only side effect I have had is some hot flushes..some during the day and some when I sleep. Important to get regular exercise daily. Good luck.

[Pmann in reply to Starstation]

Thank you so much for the feedback

[Boonster]

My experience with Orgovyx parallels that of Starstation. I've been on Orgovyx for 12 months. It has been very effective, and I have tolerated the drug well. The most significant side effect has been hot flushes. But they are manageable.

[TJGuy in reply to Boonster]

Does Orgovyx sap your strength and stamina like Lupron and Eligard?

[Boonster in reply to TJGuy]

My ADT experience is only with Orgovyx, not Lupron or Eligard. Orgovyx has not sapped my strength or stamina. I have been able to continue exercising without interruption or alteration. In fact, a couple of months ago, I shifted my home-based weight work outs to a near-by fitness center staffed with physical trainers. That has enabled me to increase my strength training. As far as I can tell, Orgovyx has not interfered with the switch.

[JPnSD in reply to TJGuy]

The effects you describe are not due to the drug....but the low testosterone from the treatment we call ADT. If ADT is effective (regardless the drug) you will see the effects of low testosterone.

[TJGuy in reply to JPnSD]

Thanks for your response. My assumption was that strenght and stamina were impacted as well. But we're all different.

We have a few in this group using Estrogens patches or creams which if I've remembered correctly you lose the Testosterone driven strenght but derive some estrogen driven strength so a loss in strength but only partially what you'd lose on Lupron, Eligard etc.

That is a attraction to me when I'll need to go back on something to lower testosterone.

[JPnSD in reply to TJGuy]

My understanding of Estrogen patches is they can create a reduction in some effects (anecdotal?) like hot flashes. They are not ADT or T lowering mechanism. T appears to come back much quicker with daily pill ADT than the 3 or 6 month injections (again anecdotal). Makes sense given the method of administration.

[Seasid in reply to TJGuy]

I believe your bone density would suffer less. I am not a doctor but I asked my medical oncologist why the mail to female transgenders don't have that problem with the bone density like us on ADT, and he said it is because of the estrogen.

Menopausal females have problems with the osteoporosis as the estrogen production drops.

They could supplement the estrogen but I believe that that estrogen supplemetaison would code other unwanted side effects. (I am not a doctor, but I believe you should clerify all of this with your doctor).

I believe that estrogen could cause maybe blood coagulation. I am really not sure in all of this, but good starting point to talk to your doctor.)

Maybe estrogen could also cause depression and stroke.

[Pmann in reply to Boonster]

Thanks for your feedback.

[TEBozo]

Had RP; pelvic lymph nodes removed and 3 of 11 positive. PSMA SCAN showed remaining cancer in prostate bed and Lupron, Zytiga started and continued forn 18 months/12 months, respectively. 38 radiation sessions and 1 year later 0.47 PSA then follow up PSA showed 1 small lymph nodes involved. 5 radiation sessions and PSA moved down slightly from 0.55 to 0.51. Went to specialized clinic in Mexico for Dendritic Cell Therapy and have one more (of three)session next week. Understand my treatment similar to Provenge in the US.

[CarlosBrasil in reply to TEBozo]

My history is quite similar to yours, and I am trying to get some treatment like Provenge that I can affford to. Can you share some more information about the Clinic and cost, please ?

[MateoBeach]

Time to get busy isn’t it?! Get the Provenge if and when you can. Get the PSMA scan approved to see if you have other sites outside of the pelvic nodes. And also to see if you are appropriate for Pluvicto treatments.

In the meantime, get in with an excellent radiation oncologist to evaluate all of the scans including prior radiation fields treated, to plan for whole pelvic LN radiation treatments. IMRT with boost doses to the identified nodes. Especially if there is no evidence of disease outside the pelvis.

Best last chance for a cure, so don’t let it get by you. (my opinion based on limited info) Am hopeful for you.

[slpdvmmd]

I agree with those who feel PSMA scan is critical. When I have spoken to people in Germany and Australia my impression was that you should get pelvic radiation and radioligand therapy (i.e. Lu177 and or Ac225) if PSMA positive. Radioligand therapy looks to me like it has more efficacy for lymph node diseases. I went to Germany for radioligand therapy and got external beam at home for lymph node oligometastatic disease. One year out in Sept and and PSA has stayed low. Due for scans and labs in September this year. Good luck pushing your insurance company.