After waiting for two months to get a CT guided bone-biopsy and the results, my MO has discussed her best treatment option as follows:
Eligard, XTANDI, Radiation - and XGEVA
Her rationale is that my metastatic "load" isn't big enough to warrant chemo since it's only in the bones, not in any other organs. She prefers to save chemo for m1C patients. She thinks chemo therapy is too risky vs the benefits (risk of infection from compromised immunity) considering radiation can get the bone mets and the prostate as well.
She had a treatment plan options list printed out from some guidelines program. Eligard, XTANDI, radiation was the first option, and Triplet Therapy was the second on the list. She doesn't want to prescribe duralutimide because it's 2x per day
I'm frustrated that she agreed to consider Triplet Therapy in my initial visit with her, even though at the time we knew the mets were only in bones.
I'm also very frustrated that she recommended radiation TWO MONTHS after my first meeting with her where she was shocked that the RO already had a treatment plan even before a bone biopsy was done: "she has a plan, before the biopsy, how is she sure it's metastatic cancer lesion?'
I could have started and been finished with radiation by now.
I guess I should have gone for second opinions while waiting all those time, but didn't. Shame on me, I thought she'd go with the triplets.
Can't decide for second opinion if I should go to City of Hope, UCLA, or Dr Scholz. My RO is at CoH near my home, and they have a couple of MOs at that facility listed down the "Prostate Cancer Care Team on CoH website. Convenience, there, but UCLA just seems to be calling to me but I hear it's a hassle location.
I might change my handle to Frustrated and Exhausted...
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"radiation can get the bone mets and the prostate as well."
I'm not even sure we know where all the mets are to be honest. My PET scan was Axumin, not the new PSMA, and my PET scan only went from groin to head, so lower bones not even scanned at all. What would a PSMA full body scan have shown?
When did you start with ADT and how many bone mets do you have?
Chemotherapy is the best for bone mets. I had early docytaxel chemotherapy with 15 bone mets.
Actually my RO recommended early Docetaxel chemotherapy while my MO didn't.
I hope you have an experienced MO?
Hormonal therapy only stops the cancer growing. Chemotherapy kills cancer. That is why early Docetaxel chemotherapy is important 2 months after starting ADT.
How old are you? Are you in good health?
Early chemotherapy is easier on you and it is the most effective. Don't wait. You can wait with radiation. I was waiting 4 years untill my PSA started to rise.
That's all in my profile. But 60 years old, pretty good health, at least before ADT, which was started in August,
5 bone mets that we know of from MRI and Axumin PET scans, but I am dubious of that since it should have been a PSMA pet scan, and it should have covered my legs as well, which the Axumin stopped at the groin.
I'm thinking the same as you...chemo kills the mets, whether we see them or not right now. ADT only slows it down and radiation only gets the mets you know about.
I have a very experienced and highly praised MO, but I feel like maybe not as much with prostate or the latest treatments for it.
Agree with this…when my second opinions suggested triplet therapy, this is exactly what they said. Early chemotherapy (I started mine about 6-7 weeks after starting Eligard) would be the easiest on me now and the most effective. They specifically said if I had these visible mets on the scans, I needed to use systemic therapies to kill what is also there but we cannot yet see on the scans. (I’m doing triplet therapy plus radiation.) “You have an aggressive cancer, you need to treat it aggressively now.”
The thing about not wanting to use darolutamide because it’s twice a day dosing seems strange to me. It’s two pills with breakfast and dinner! Is she making her recommendations based on cost?
Tanya Dorff at COH would be my top choice. Nonsense that chemo should only be used for visceral metastases - where does she get that from? Triplet was proven in men with bone metastases as well.
I looked it up. In ARASENS (which proved the value of the triplet Nubeqa+Taxotere+ADT) only 17% had visceral metastases, 79% had bone metastases. In PEACE1 (which proved the value of the triplet Zytiga+Taxotere+ADT) , only 12% had visceral metastases, 81% had bone metastases.
Appointment with Tanya Dorff (tentatively 2023/01/17). Not surprised it takes 6 weeks to get in, I think someone mentioned it. The scheduling guy said he sent a request to the doctor's office to see if they can get me in sooner since I have the diagnosis and tests already done. Not expecting that to happen, but fingers crossed.
Why the F*** didn't I just call her two months ago in the first place?
(Because it's a 45 minute drive to CoH Duarte without traffic, and there's always traffic. LOL. But a long drive to get the best in care is a small price to pay.)
I guess that makes sense for some. Never really a priority for me; I’m going to have to start the deductible filling again anyways. It’s not like they’re aren’t a lot of medical expenses coming next year.
You should start with the early Docetaxel chemotherapy treatment as soon as possible and not to wait for Tanya Dorff until next year.
I got my early Docetaxel chemotherapy treatment because my RO discussed it during the meeting with the board of urologists at my local hospital and they recommend it to my MO because I had 15 bone mets in my spine and neck.
Without that recommendation I probably would not get the early Docetaxel chemotherapy treatment.
Maybe you should also discuss this in your hospital. The best is if you have a team caring for you.
My “team” isn’t really a team. Uro and MO are at Providence and they’re only connection was the Uro handed me off to MO. RO is at City of Hope location sponsored by Providence (basically Providence contracts CoH for radiation oncology and gives them a satellite building at the Providence hospital).
So as much as I’d like to have started Triplet Therapy months ago, there’s no one who’s going to give it to me without a fight or a second opinion doc’s weighing in.
At this point, it will be at least a month before radiation would even start, so what’s another couple of weeks waiting for a top doc to evaluate my case? And I’ll have the advantage of an actual “team” at CoH with both the MO and RO there.
I’m sure things work differently in Australia than here in the US. Some institutions here are like you describe, many aren’t. I’m moving to one that is.
How short a window do you think I have? 6 more weeks is going to mean chemo won’t work?
I have no idea, but the chemo is only effective for a rapidly dividing cancer cells. Ones they are in hibernation from the hormone therapy they are not dividing and you can't use the chemo option.
Can you read the link?
Can you talk to someone who is a doctor in your hospital about this?
It is not a good idea to save the chemo for later.
Your doctor should be flexible enough to take your thoughts/needs into consideration. Keith's doctor came up with a different plan and we presented research and he changed it to accommodate Keith's wishes. If you want to stay with this doctor, let her know that you appreciate her recommendations but would rather go with the triplet therapy. You're the patient after all.
I’ve decided it’s not worth the effort to stay with current doctor and try to educate her. Advance prostate cancer doesn’t seem to be her expertise.
When she initially agreed to triplet therapy two months ago I was so impressed that she had actually pulled the Arasan trial before our next appointment and had notes from it in hand and agreed it was an option. In wish she had said it was an option she’d only consider if my organs were riddled with cancer.
Communication with doctors are always like that. I am not changing doctors but you just email her what you believe is supporting your request and give her time to think about and to make a decision.
Maybe she has some other concerns or maybe she knows some other information about your cancer what we don't yet know.
You said that she is experienced.
My first MO was a real professor of oncology and he wanted me only on Lupron and that I have it only intermittently. He had lot of knowledge and experience.
Some lucky people can live on ADT alone for 10 years. Then I said to him with the help of other professor of radiation oncology that I want early chemotherapy and only 6 cycles and not 8 cycles, and that I don't want intermittent ADT. (Maybe intermittent ADT was a good idea but I was too scared even to think about it.)
Can you think about the best way how to communicate with your oncologist and know that it is not easy for you. I can't believe that you can't just simply find someone else to get a second opinion? Quickly.
I just turn up at my cancer center and turn and ask the first oncologist in the corridor in one minute for his opinion.
Triplet therapy is the science. At COH Tanya Dorff would be my choice as well. Follow the science brother not one MO’s misguided opinions. Best to you.
Agree that Tanya, as well as Scholz would be excellent choices. Been treated by both over the past too many years. I also live near COH and that is the reason that I switched from Prostate Oncology to COH..
My problem with Dr. Dorff is that she is too darn busy lately. I've been disappointed in that she often comes to appointments unprepared and doesn't return calls or emails
Yes, as above! Get back in there to Tanya and get that triplet therapy going. Darolutamide is much preferred. Proven in triplet therapy and much better for SEs.
Sounds like your mets are extensive enough that triple therapy ADT with Docetaxel plus Zytiga is the best option. The whole idea is to hit the cancer hard at the beginning and keep the numbers down as much as possible. Less of the little buggers to reproduce and get you down the road. I would not wait if it were me. This treatment combination has already been proven in PEACE 1 clinical trial.
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On Triplicate Therapy, Docetaxel, MO has made no suggestion to do PSMA Scan, CT Scan or MRI to see if treatment is working.
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