Started Triplet Therapy this week, new doc, new (better) treatment plan!

[Gl448]

Started triplet therapy this week with first dose of NUBEQA on Wednesday and Docetaxel yesterday afternoon at City of Hope in Duarte, CA.

"Fired" my local general oncologist whose plan was Xtandi, radiation, and Xgeva for me. She was against chemo in my case since the mets weren’t in organs. Contrast that opinion with the note from my new doc (the top prostate cancer specialist at CoH) that I've highlighted below.

New doc’s plan: Docetaxel, NUBEQA, Eligard (triplet therapy) with Reclast or Prolia for bone support preferably after a DEXA scan. 

What an amazing difference CoH was, from the parking lot to the actual doctor. Everything is efficient, well organized, and the entire staff from parking "ambassadors" to all medical people are super friendly and caring. Disappointed in myself for not going there in the first place.  I'd be done with chemo already instead of basically no treatment except for Eligard for 18 weeks. 

City of Hope had everything approved and scheduled within 2 days. Local Providence MO everything took weeks or months to happen. Get yourself to center of excellence if you can, it really makes a difference.

Doctor's notes to get treatment plan approved:

mHSPC

given the ductal pathology and low PSA with metastatic disease I believe he should absolutely receive up front docetaxel. This may be the most important part of his triplet therapy.

he is agreeable. I have placed orders for docetaxel.

We will hope to get started next week. The dosing schedule of the chemotherapy regimen was reviewed with the patient. We reviewed side effects, and he is agreeable , I prescribed dexamethasone and explained the schedule for this.

I would like to use the triplet regimen from ARASENS, so I have prescribed darolutamide. 

 We will order restaging imaging after completion of chemotherapy, unless there is some need for clarification of response earlier.

he will be due for eligard in February as he received a 6 month dose in August.

he should have genetic testing; we can do this via the biorepository protocol if he is interested, IRB 07047

he should have DEXA or just be treated with bone support (denosumab Prolia dosing or zoledronic acid Reclast dosing)

[Gl448]

I want to give out a special thanks to Tall_Allen for informing, educating, and pushing me to go with this new doc. What an asset to this group he has been.

[Tall_Allen in reply to Gl448]

Is that Tanya Dorff? I think there is none better in the LA area.

I think you should get a DEXA scan - no point in starting on bisphosphonates before you need them.

[Gl448 in reply to Tall_Allen]

Yes, Tanya Dorff.

She was absolutely amazing. Had studied my file thoroughly before arriving, had a list of questions she wanted to clarify on my history, explained everything she suggested, and answered all questions we had. Even kept encouraging us to ask more, but I’d been well educated here so really didn’t have a lot of questions.

Agreed on Dexa scan first, and I think that’s the plan assuming insurance didn’t balk. If they’re cheap I’ll go out of pocket.

My ALP (not bone specific) had shot up out of range from January to December which I’m sure was indication of the bone Mets doing damage, but it was was back in range in the labs they took before chemo. White blood cells double normal, red and platelets near bottom of range.

I’ll ask about the Dexa scan at my next appointment in 3 weeks. I love that she sees you before every chemo session after you start, rather than just hand you off to the staff.

Thanks again

[Seasid]

You can get Prolia up to 10 years according to the information from the internet.

If you have to pay yourself for the dexa scan and you have limited amount of money on disposal than just start prolia as your MO suggested. I received a same suggestion for prolia from my hospital.

If they believe that you have lot of bone mets which could turn painful.soon than having prolia would prepare you for Xofigo.

One year or 6 months?? after Xofigo you could get Pluvicto if needed.

All of these desissions are a little bit of a gamble as we are all in an uncharted territory.

Of course it would be much better to have a baseline scan, but your financial means are also very important.

[Izzygirl1]

Wishing you all the BEST with your new treatment plan!

My husband just finished his six docetaxel treatments and it went well. He put cold booties on his feet and ice on his hands to try to help prevent neuropathy and it worked for him. He also didn't use any metal cups or silverware during the time he was on chemo to prevent a metal taste which worked for him. His biggest side affect was fatigue but he tried to keep doing his exercise bike a little bit each day. He is also on Nubeqa and Lupron shots.

[Gl448 in reply to Izzygirl1]

That’s great. I’m happy to hear it for him.

I took ice mitts and booties, but they thawed by the time I needed them. Gonna have to freeze them longer next time ( I only refrigerated them which worked great on home test right out of the fridge, but 4 hours later too long).

Exercise is key, I’ve got a touch of diarrhea from the chemo I think, but gonna head out for a 4 mile walk if I can last that long. Fatigue’s been an issue just in leuprolide.

[Tall_Allen in reply to Gl448]

I thought these were good suggestions:

healthunlocked.com/advanced...

[Tall_Allen in reply to Tall_Allen]

If you bring a cooler, you can have two pairs of frozen mits and ice packs for under your feet. Ice chips in the mouth can prevent dysgeusia. With all the freezing, a thermal blanket is needed to keep the core warm.

[Gl448 in reply to Tall_Allen]

Yeah, his suggestions are great. You hooked us up offline and we’re in touch a lot privately. I’m following most of his advice.

[SViking in reply to Gl448]

congratulations on your upgraded healthcare. Was the Nubeqa covered by insurance?

[Gl448 in reply to SViking]

yes, my insurance covers NUBEQA, with a $250 copay, but Bayer offers a $0 copay card that I qualified for so my out-of-pocket is $0.

[Zengal79]

Great news! She is fantastic. We were so impressed. Glad you found her and have a treatment plan mapped out. My guy was too late in his journey, but rest assured, you are in good hands. Best wishes to you!

[maley2711]

Re DEXA cost........

mdsave.com/procedures/bone-....

Compared to the costs of so many other diagnostics, I question that, from what I have read, PCa Docs seem to be mostly ignoring this test as SOC for men on ADT...seems like a big mistake to me. but perhaps no sufficient studies to make it SOC?

[Gl448 in reply to maley2711]

That’s crazy cheap. Thanks for the link.

[AlvinSD]

I’m glad you were able to get in to see Dr Dorff. Sounds very similar to my experience with seeing Dr Kosty at Scripps Clinic. Everything was outstanding and he had the same advice for me about chemo and Nubeqa.

Between their advice and getting my radiation at UC San Diego, I definitely feel more confident in my treatment and absolutely see the value in going to a cancer center of excellence.

[PGDuan]

CoH, Dr Dorff and her team are fantastic. I started this triplet therapy last May and it seems to have worked really well so far. Of course we all respond differently, but I experienced the typical side effects (mainly fatigue and hair loss), but in hindsight I'm pleased with the tradeoffs. After a few more months I hope to take a treatment vacation with hopes of a long break. Best of luck.

[Gl448 in reply to PGDuan]

great news! Congratulations.

[GeorgeGlass]

How is your treatment going so far?

[Gl448 in reply to GeorgeGlass]

I had round 2 of chemo two days ago. I tolerated the first round "extremely well" according my doctor. Several of the usual side effects, but all very minimal.

I've been on Eligard since August, and NUBEQA for 29 days (started 2 days before first chemo.

Tolerating it all well, and I almost don't believe it but I think I'm seeing some major improvements in my urinating...I've got a stronger stream and can hold it several hours now, I was never more than two hours while sleeping before chemo round 1, and usually once per hour with very small volume while awake.

Also, some very bad hip pain from a bone met in my pelvis that required Hydrocodone to sleep at night has gone from a pain level of 6 or so when walking and 8 when sleeping to a 1 or 2.

Imagination or that quick a change in the cancer, not sure, but I'll take both.

My PSA has dropped to 0.18 from 0.944 just before chemo round 1. It's worth noting that my particular (rare) ductal type PCa has never generated a high PSA and a bone met biopsy showed PSA-negative (but PSMA-positive), so PSA not the best way to track my progress. Pet and Dexa scans after round 6 of chemo for restaging (unless something comes up indicating needed sooner.)

So far I'm elated to have learned about Triple Therapy from Tall_Allen and to get the best prostate cancer doctor in SoCal to treat me.

[GeorgeGlass]

That's good news GI, Have you done any ARs prior to this, or is this the first time you've started on one (Nubeqa in your case)? Have you started on the Nubeqa yet? What are your neutrophil levels now? Are they given you filgrastim or neupogen etc. to keep the neutrophils and wbc up in normal range? I'm glad that you are with a care team and facility that cares about you and is professional. One person told me that his chemo treatments were much easier to handle if he didnt eat the day before and the day of the chemo. You can talk to you doc about that, if you start to have issues with nausea etc.

[Gl448 in reply to GeorgeGlass]

I answered the neutrophil question in the take NUBEQA with food post, but here’s what I said there:

I've only been on NUBEQA for about a month, but my neutrophils actually went UP considerable from labs taken on December 6 and January 31. I started NUBEQA on January 4.December Absolute neutrophils 4670 (1500-7800) and neutrophil % = 54.3 (quest Diagnostics)January 31 Absolute neutrophils 22.9 (1.9 - 6.0) and neutrophil % = 82.1 (City of Hope in house lab)

NUBEQA is my first AR and I’m getting nothing to boost WBC yet. It’s already pretty high even after chemo round 1.

WBC two days ago was 27.9 (3.6 - 10.1 Range).