Decision time. Input welcome

[Miccoman]

Saw my MO yesterday. I need to make a decision by next week on how to proceed. My personal life is imploding and all I see there is having to sell my house and move to... someplace -- long story, but everything I've tried has come up short. BTW, I live by myself with no close friends and only a very sick relative nearby.

Here's what my MO says:

"Today, I reviewed the result of his recent PSA from 4/1/2022, which increased to 8.16 ng/ml compared to 6.26 ng/ml on 2/1/2022. His testosterone level remained castrated at 16. Then, I reviewed his recent CT studies, which showed a new indeterminate 6 mm groundglass nodule in the right upper lobe; and interval increase in size of a sclerotic lesion within the lower aspect of the left pubic bone. His bone scan showed interval increase in radiotracer activity within the cervical spine and bilateral ribs without new sites of osseous metastatic disease. There is stable osseous metastatic disease within the manubrium, pelvis, right proximal femur, and thoracolumbar spine. Based on these clinical data, he has progressive metastatic castration resistant prostate adenocarcinoma. I recommend him to discontinue enzalutamide today. [I restarted it last August after Prevenge]

For management of progressive metastatic castration resistant prostate adenocarcinoma, I discussed with him the following treatment options.

The first option is to proceed with systemic chemotherapy with docetaxel based on the following data. In the Tax-327 clinical trial, the group who received docetaxel every 3 weeks had a median survival of 18.9 months compared to 16.5 months in the mitoxantrone groups (P=0.009). 45% of the patients in the group with docetaxel every 3 weeks had at least a 50% decreased in the serum PSA compared to 32% of the mitoxantrone group (NEJM 351;15). The main side effects of docetaxel include but not limited to increased risks of bleeding/infection, alopecia, fatigue, nausea, vomiting, tearing of the eyes, nail changes, and peripheral neuropathy. We have provided him written information of docetaxel to review at home.

The second option is to enroll in an ongoing clinical DORA clinical study that evaluates docetaxel with or without Radium-223. I have provided him a written informed consent to review at home.

The third option is to pursue a palliative care approach without initiation of new systemic treatment. The median survival for patients with metastatic castration resistant prostate adenocarcinoma is approximately 2 to 3 years."

I am so overwhelmed trying to deal with Murphy's screwing up my everyday life I just want to sell the house buy a sailboat and sail off into the sunset, but the way things are going the sailboat would sail without me!

Comments welcome

Oncologic History

9/24/14 - Underwent TURP after PSA noted to be 50.6. Biopsy showed Gleason 9 (4+5) prostate adenocarcinoma

8/19/14 - CT abd/pelv showed 4 x 3.5 cm right kidney mass, sclerotic lesions at T12 and left ischium.

9/14/14 - MRI confirmed 3.7 x 3.5 x 4.1 cm cortical mass in right kidney suspicious for RCC

10/3/14 - NM bone scan showed increased uptake C3, T3, T7, T8, T11 vertebrae, left 1st and 5th ribs and left ischium

10/14/14 - Started on lupron and bicalutamide

6/12/15 - Underwent right radical nephrectomy, found to have renal cell carcinoma, papillary type 1, clinical stage I

8/16/16 - PSA noted to rise up to 9.84 ng/ml. Enzalutamide added to Lupron.

12/3/18 - NM bone scan showed improving uptake in cervical, lower thoracic and upper lumbar spine compared to 12/5/17 study. Persistent uptake in the manubrium, T4 and L5 levels.

3/5/19 - MRI thoracic spine showed involvement of multiple thoracic and lumbar vertebral bodies with marrow involvement only, no abnormal signal in spinal cord

3/28/19 - NM bone scan shows uptake predominantly in thoracic and lumbar spine as well as uptake in sternum and shoulders.

1/15/21: CT chest, abdomen and pelvis and bone scan showed progression of osseous metastases.

2/8/21: Underwent CT guided biopsy of right ilium osseous lesion, which showed metastatic prostate adenocarcinoma.

4/7/21: Underwent TURP (for BPH) and bilateral orchiectomy.

4/21/21: Discontinue enzalutamide.

4/22/21 to 5/2021: Completed 3 cycles of provenge.

[Shooter1]

I've already had the docetaxal chemo, xtandi combo. worked for me for 3 1/2 years then BCR. Radiation and Provenge with PSA dropping and pain less for 6-7 months. New scans when pain returned showed rib and ischial tuberosity . More radiation still on xtandi. PSA continues to rise. Started xofigo (ra-223) . PSA still rising..90%/ month. If I were back in your pre chemo stage, I would go for the docetaxal with or without xtandi. With full dose (160 mg) of xtandi and chemo I was a complete invalid after 9 cycle. Now on 1/2 dose (80 mg). MO says I am in End Stage Prostate Cancer acct he has not much left to offer. RO says he can get me another 15 mo or so to median survival curve. I will beat that, but I don't know by how much... Last week I had my 72nd birthday and if lucky will get to see my 74th without too much pain.... Best of luck to you. You have made it 8 years to my 5 so I think something must have been working in your favor and you have treatments left to try.

[Miccoman in reply to Shooter1]

Thanks Shooter1 for sharing your experience. How was the chemo experience? I am living alone and can't get my head around feeling awful for 7 months for what seems to be 2 more months at the end. I have little pain from extensive mets, although neck is acting up at moment.

[Shooter1 in reply to Miccoman]

My bone mets and lymph node mets all disappeared with the chemo and xtandi. 3 1/2 years before BCR for me. With chemo, I drove myself to all treatments, felt good and worked for a round trip (2 days) and then 3-4 days of blahh,. Cumulative side effects, so by #6 I needed 4-5 days off. By #9, I could hardly get around for a week and a half. Xtandi after chemo ended is what made me a complete invalid.. 160 mg was just more than my body could handle.6 cycle on 3 week schedule and you would be done in 4-5 mo. and if lucky like me, get a couple of years. It was worth it for me...

[Miccoman in reply to Shooter1]

Thanks, your experience is reassuring. Tall Allen has also told me that my impression of chemo is way off. Of course my only exposure is having seen people getting infusions at my former MO's clinic. They all looked terrible and seemed very sick. In retrospect, that was in Florida where there are a lot of very sick seniors, and unhealthy ones, too

[CAMPSOUPS in reply to Miccoman]

My apologies as I already gave this reply in another thread you were in. Also I could be making an erroneous assumption but I think you looked at the Tax-327 trial as chemo only adding 2 months but what it showed was Dox chemo giving additional 2 months of PFS compared to Mito chemo.

I was going to say the Dox chemo plus RA-223 would be where I would go but decided not to sound opinionated but since Tango65 gave the same suggestion I offer it now lol. I think the treatment can buy you a lot of time. But as usual have to add no guarantees.

Today seems like the second time I've seen the Tax-127 trial info.Did you realize that it resulted in:

compared to no Dox chemo, Dox chemo added 18.9 months PFS.

Compared to no Mito chemo, Mito chemo added 16.5 months PFS.

So it looks like many can get at least 19 months out of Docetaxel.

And it might "re-sensitize" ones cells so that Xtandi, or Zytiga works again.

[Miccoman in reply to CAMPSOUPS]

Thanks, Campsoups. You are right, of course. I misread the information. That's why I posted it here, to get feedback from more experienced folks who are not in the middle of a crisis.

[CAMPSOUPS in reply to Miccoman]

No worries I wasnt sure and just on a whim threw that out there. Whatever you do is your decision and certainly let your Dr(s) be your guide but I didnt want you to confuse some info. to base a decision off of.I know about the crises or at least I felt that way when I was diagnosed.

I am lucky for now to be responding to Zytiga and I am sure when it stops working I will get a little panicky again. To say the least lol.

[tango65]

Since the cancer has extended to many places in the bones, I will go for the clinical trial and do Ra 223 plus the chemo which may have an enhanced antitumor actividad when compared with docetaxel alone.

pubmed.ncbi.nlm.nih.gov/310...

I would also request a direct biopsy or a liquid biopsy (blood sample) to study the genome of the cancer and also do immunohistochemically studies to determine if there are mutations making the cancer susceptible to treatment with drugs such as olaparib, rucaparib, keytruda or neuroendocrine markers indicating that chemo with platinum compounds could help.

[Miccoman in reply to tango65]

Thanks, Tango. Good input. I have already had the blood test and biopsy (CT-guided bone biopsy, which I remained awake for -- my choice--what a trip that was! Not painful but bizarre experience.)

These were the results: "We have previously reviewed the result of the Foundation One Medicine test (dated 2/22/21). This testing showed stable microsatellite status, 0 Muts/Mb tumor mutational burden, MYC amplification, and STAT3 Y640F mutation. There are no reportable alterations with companion diagnostic claims. Unfortunately, his previous blood sample obtained before did not yield sufficient cell-free DNA for Oncotype AR-V7 test."

So nothing to specifically target.

[George71]

What about this?

onclive.com/view/progress-i...

"In late March, the FDA approved a new therapy for advanced prostate cancer that is metastasizing, or spreading, in the body. Called Pluvicto (and also lutetium-177-PSMA-617), and delivered by intravenous infusion, the treatment can seek out and destroy tumors that are still too small to see with conventional types of medical imaging."

[Miccoman in reply to George71]

Thanks, Geroge71. Good suggestion and if I weren't overwhelmed by a personal crisis I might pursue alternate treatments but right now I do not possess the bandwidth to deal with more than my MO offers.

[leebeth]

My husband and I were very nervous to start chemo. Last year he had 6 cycles of docetaxel and his only side effect was hair loss. He felt fabulous. Only missed work the few hours needed for the infusions. Drove himself. All the aches and pains he attributed to old age went away. (He was 67.) He teased the doctor that he forgot to put the med in his infusion. This year he is on a more aggressive cocktail and still feels fabulous except for a brief stint with fever due to low white blood cell count which quickly resolved.

Don’t be afraid of chemo. It’s not an irrevocable decision. Each treatment you decide upon the next. The trial sounds good to me, but I thought the Radium 223 would be off the table if that lung opacity is actually mets? I believe it can only be used if bone only.

I could be mistaken but that was my understanding when my brother was recently on it.

[Miccoman in reply to leebeth]

Thank you so much LeeBeth! It is very reassuring that I will be able to tolerate chemo well. As I stated in a previous reply, above, my only exposure was to very sick and feeble people getting infusions in my MO's clinic when I lived in Florida.

[Hidden in reply to Miccoman]

From what I've heard about chemo there are steps you can take to mitigate side effects like hair loss and neuropathy. Get a short haircut. Put an ice bag or cap on your head and put your feet and hands in ice during infusions. Not experienced with this myself. Did I get this right?

[leebeth in reply to Hidden]

Icing hands, feet and mouth helps a lot. Ice caps shouldn’t be used if there is skull mets. There are gloves and socks on Amazon with gel inserts and we ordered extra so he could swap them mid treatment.

[Miccoman in reply to leebeth]

Thanks for your insight LeeBeth. Since I am commonly cold I will go slow on this advice. And by cold, I mean that I keep my house at 84 in the summer and even then pull a blanket over me when watching TV. Winter is just a ton more layers, plus hat, plus blanket.

[leebeth in reply to Miccoman]

Exactly why I could never do the ice cap! The chairs are heated in the infusion room, and my husband cranks up the heat and asks for heated blankets. This balances the ice. The neuropathy can be permanent, and the ability to walk, and have the use of one’s hands, is important to most. Best of luck!

[Miccoman in reply to Hidden]

Thanks, WSOPeddie! However, after 8 years on ADT there isn't much hair left to loose. LOL I'll look into icing, but I tend to be very cold and making myself colder is not very attractive.

[leebeth in reply to Miccoman]

My 81 year old brother is going to start chemo after seeing my husband’s response! He also did Radium 223 with good results but did have two bouts of diarrhea. First and 6th treatment. Very manageable!

[Concerned-wife]

The notes from your physician are very detailed and will assist the members here to help you. It is very hard to make difficult decisions on short notice but thankfully your physician appears to be taking time to help you.

[Hidden]

I don't know if any of these trials are applicable.

clinicaltrials.gov/ct2/resu...

Some related background:

TRANSFORMER: A Randomized Phase II Study Comparing Bipolar Androgen Therapy Versus Enzalutamide in Asymptomatic Men with Castration-Resistant Metastatic Prostate Cancer – PubMed

pubmed.ncbi.nlm.nih.gov/336...

References in High-Dose Testosterone and Radium-223 Response in Metastatic Castration-Resistant Prostate Cancer - Clinical Genitourinary Cancer

clinical-genitourinary-canc...

Rapid Hormonal Cycling as Treatment for Patients with Prostate Cancer: The Men’s Cycle - Study Results - ClinicalTrials.gov

clinicaltrials.gov/ct2/show...

Sequential Testosterone and Enzalutamide Prevents Unfavorable Progression

clinicaltrials.gov/ct2/show...

Immunotherapy following BAT

oncology.medicinematters.co...

STEP-UP RCT. BAT, Enzalutamide, BAT, Enzalutamide, repeat.. Sequential Testosterone and Enzalutamide Prevents Unfavorable Progression - Full Text View - ClinicalTrials.gov

clinicaltrials.gov/ct2/show...

RE-sensitizing With Supraphysiologic Testosterone to Overcome REsistance (The RESTORE Study) - Full Text View - ClinicalTrials.gov

clinicaltrials.gov/ct2/show...

[Miccoman in reply to Hidden]

Wow, RSH1, you have gone above and beyond looking up all these studies. If I were not in the middle of a personal crisis I would research each and every one and then make a list to discuss with my MO. In my life right now I just cannot spare the time lest I end up "un-domiciled" to put a pretty face on it.

[Hidden in reply to Miccoman]

Hang in there.

I would ask my MO what they think of doing a clinical trial.

Personally, I would be interested in bipolar androgen therapy. But I would be interested in looking into any one that my MO thought might be good for me.

[Miccoman in reply to Hidden]

Good idea RSH1. The clinical trial with radium is being run by my MO so there's that. If I were not drowning in a personal crisis I definitely would look into all the clinical trials out there but I just don't have the bandwidth to deal with more that what is directly in front of me.

[Hidden in reply to Miccoman]

I understand. Sometimes it takes all we can do just to deal with the stuff at hand.

Maybe your MO can suggest a trial?

[Shams_Vjean]

If I was in your position/history I think I’d be leaning towards docetaxal, which I’ve had 6 rounds of with so so side effects. Everyone reacts differently, and I you find it too rough you could talk with your MO about cabitaxal instead, which some tolerate better.

Since you don’t have help at home it would be worthwhile to consider stocking up on some easy to prepare or ready to eat foods and/or delivery service options. Check with the dietitian in your MOs office if there’s one or find a cancer support organization that could help you strategize how to manage your nutrition during chemotherapy. Very Important. And remember that ANY exercise, however mild, is a big plus for your overall well-being and bounce-back after chemotherapy.

Best of luck, Miccoman

[Miccoman in reply to Shams_Vjean]

Thanks Shams_Vjean. Good advice.

I do exercise for ~30 - 40 minutes every day and work up a good sweat on a combo elliptical and recumbent bike. I will try to force time into dealing with personal issues to go join the local cancer club (previously a Gilda's).

I'll also see if my MO has a dietitian to consult with. I'll be cooking for myself as I can't afford delivered food, but there are a couple of soups and such I've been making that each last several days and my typical other meal is a broiled protein plus steamed vegies and a couple of apples, so fixing that is not very taxing.