When I ran a business, I always prepared an agenda. I find that taking the time to write things down and review them sets the agenda and keeps meetings moving in a positive direction while avoiding the possibility that something important gets lost.
The week before last, I exercised moderately a few times, stopped the Dexamethasone, and then tried to cut down the Oxycontin ER last Thursday with the intention to stop. I experienced a good deal of pain in my back last Thursday night, and it took a few days to get it back under control. I am now taking the extended-release pain meds at 6:30 AM and 5-5:30 PM. The last steroid dose I took was 2 mg on Sunday, August 29.
I worked out on the elliptical Sunday night, and it felt very good.
It has been nice taking a holiday from any treatment for the disease and enjoying the feeling of looking forward to tomorrow. I have been feeling better each day and that hasn't happened for a looooooong time.
The following agenda is for Thursday, September 9th meeting with my Medical Oncologist. I am leaning towards Chemotherapy. To date, my MO knows that I belong to a religion called The ABC religion. "Anything But Chemo." .That may be why he doesn't push me in that direction. I am trying to get past my prejudices. Perhaps, Hmmm, do I need to find a way to emotionally support my MO? Every decision needs to be evaluated in the context of the alternatives. I will try to make it into a math problem that we can both solve in the same terms, knowing there is not perfect answer that will provide a cure.
1.Is Cabazitaxel preferable to Docetaxel?
2.Will chemo be combined with any other treatment if that is the choice?
3.Do I need bone density protection for Osteoporosis?
4.I seem to remember that Radium 223 was not considered a good option for me in previous discussions with both you and the Radiation Oncologist.
a.Am I mistaken?
b.Will Radium 223 exclude me from immunotherapy or treatment options in the future?
c.What therapeutic value will it have for me? Will it shrink tumors? Slow them down? It is unclear to me.
d.Is there a probability it will be a superior result to chemo? It is my understanding it doesn't affect PSA.
5.Immunotherapy questions for Cell Centric targeting P300, Lu77 PSMA 617, and PSMA-targeted Alpha Therapy.
a.Reading material on all three indicates that not having chemotherapy excludes me from the programs. Will they waive that?
b.If the 2 programs at Cornell-Weill are viable options, can we start working on a consultation now? Assuming I am not excluded because of no chemo? Follow up question is, how long will it take to get qualified? clinicaltrials.gov/ct2/show...
c.Did you tell me the LU77 PSMA 617 is about to be approved? My reading of the program at Cornell Weill is that it is a phase 3 study. Might I get a placebo?
d.I have heard about tough side effects with the PSMA-targeted Alpha Therapy. That is concerning but not a decision-maker,..... YET
6.Testing going forward.
a.I don’t understand the differences between the Nuclear Bone Scan and PET/CT scans using newly approved isotopes. I hope the Doctor can explain them to me. There are a lot of MO's that won't look at the more sophisticated PET scans. My MO has been steering me away from them since I started with him in mid-2019.
b.For clarity, what tests will put me in the best position to evaluate the skeleton issues I have in the future? So far, there is no evidence that the extensive bone mets haven't affected tissue or organs. What tests will help to monitor progress.
Pylarify PET?
PSMA Ga68 PET?
Auximen?
Alternatives?
Bone Scans and CT scans?
MRI?
7.What treatment has the highest probability of slowing down the progress of the extensive metastatic disease as I have? Let’s leave side effects out of the discussion for now. I don’t want to get stuck in my “Anything But Chemo” mindset. Help to clear my mind to evaluate treatment options properly.
I am leaning in the direction of chemo.
I took a PSA test at Quest last week. My PSA is down to 71.3. It was 121.7 when I stopped immunotherapy. My PSA bounces around. 6-24-21 was the last AMG 509 treatment.
6/29/2021121.7Jefferson
7/16/202192.4Jefferson
7/23/2021113.1Jefferson
8/19/202195.8Jefferson
8/31/202171.7Quest
I wonder if there is any information of value in PSA for me.
FYI I spoke to someone last night that has had 20 Docetaxel treatments. He is tolerating them exceptionally well and believes it is because he keeps fit and active.
I apologize for the long post.
Thanks for your past support. Feedback is welcome. I will report back over the weekend after my discussion with the Doctor.
All my Best
Philly
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Philly13
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It is dangerous to go cold turkey on steroid use. Does your MO know you are doing this? You have to slowly wean yourself down. The positive initial feeling may be due to your blood pressure rising.
I did reduce over time. I started at 6 mg twice per day, then 4 twice per day, then 4 once a day, then 2 in the morning for a couple of days. I apologize for not making that clear. The last day was 2 mg and then nothing. for 4 days. Then I took 2 mg for a couple of days over the weekend. I felt fine by Monday with just pain meds.
I used to be in the same religion when it comes to chemotherapy. The first Oncologist I had kept trying to get me to do chemo at diagnosis, but I was opposed. Eventually I came around after talking with people and doing research. Really glad I did it now.
As far as which chemo is better, both Cabazitaxel and Docetaxel were compared head to head in the first-line setting in the FIRSTANA trial ascopost.com/News/57923
Cabazitaxel did not perform better in the first-line setting. It has demonstrated effectiveness when Docetaxel becomes ineffective so it is used as second-line chemotherapy.
The thing to remember about chemotherapy is that you are only committing to one cycle. You can always evaluate everything after that and decide not to continue if you can't deal with side effects or if it's not effective. When it comes to chemo, people generally focus on the side effects and not the fact that it does kill cancer. It also can help reduce pain too, so you might get some relief there as well. It definitely reduced my pain. Most tolerate the chemotherapies for PCa quite well.
One thing I would recommend if you haven't already is to get a biopsy and have genetic sequencing done and also look at the IHC. The results might help you to adjust your treatments or provide new options for treatment.
I did Foundation One genetic testing in early 2019. One of the clinical trials is specific to a mutation that showed up. At that time there were no known therapies for the P300 mutation. We went back and looked as I flunked out of the AMG 509 trial. My oncologist is intimately involved with that trial. I also did the Guardian blood biopsy last fall. Nothing showed up then.
I believe cabazitaxel has a lower incidence of neuropathy. Cabazitaxel is effective and treatments could be repeated to try to control the cancer.
Chemo could be combined with other drugs.
You could request a liquid biopsy to study. circulating tumor cells and cell free DNA to do IHC and genetic studies. If there are mutations the cancer may be susceptible to treament with olaparib, Rucaparib and or keytruda. If there were components of NEPC cisplatin or similar could be added to chemo.
That is very interesting and will probably be helpful. I remember skimming through it without paying much attention and then forgot about it. I read it just now and will read it again.
With your PSA the PSMA PET/CTs or the Axumin scan could be effective scans to follow the evolution of the cancer. The PSMA PET/CTs may have less false positives than the Axumin scan. These scans have a much higher detection rate than the regular bone scan and CT scan and are specific for prostate cancer lesions when the bone scan and the ct scan are not specific since other pathological situation may cause similar changes.
You could get a DEXA scan to determine you bone density but if the cancer is castration resistant with bone metastases discuss to be treated with Xgeva (denosumab) since it may reduce the incidence of skeletal events.
If you never had Provenge you could discuss it, Provenge have shown to have a survival advantage. Xofigo is other option and it could be done with Provenge.
The first thing I can say about your posting is that I don't have nearly enough knowledge to answer your highly specific and well thought out questions. The second thing is that, if you don't suppress your cancer, it won't be because you didn't think out, research, and work hard to figure out all of the alternatives available to you. You've written a hell of a posting. Now, in spite of my general ignorance, I'm going to produce a few thoughts about a few of those questions you've asked.
My first thought is about the ABC, All But Chemotherapy issue.
I haven't had chemo myself but, after reading accounts by perhaps hundreds of people who have gone through docetaxel therapy I've come to the following conclusions about success and adverse effects.
Does chemo work?
Chemo works. A very well conducted study ending in 2015, reported that median survival of men given ADT + chemo was 57.6 months compared to 44.0 months for ADT alone. Here's the study summary: cancer.gov/types/prostate/r... and here's the original study report: nejm.org/doi/full/10.1056/N... Since that study was done more has been learned about chemo and who benefits from it. Some men do much better with it than others, but most benefit and some benefit a lot.
How bad are the side effects?
Some men have terrible side effects, some have very tolerable side effects. My inexpert impression is that difficulty with side effects depends on the following factors:
1. Age and physical condition. Younger men in better health do better than older men, fat out of shape men, and men crippled with advanced cancer.
2. Care taken by the medical staff. Do they provide ice baths for hands, feet, mouth and head? Do they administer the drugs slowly and carefully or shove them in quickly? Do they provide drugs to suppress side effects like nausea and vomiting and secondary infections, and do they adjust dosages of those drugs to fit patient needs?
3. Dosage - the usual dose for PCa is 75 mg/m2 IV over 1 hour every 3 weeks; prednisone 5 mg orally 2 times a day is administered continuously ( drugs.com/dosage/docetaxel.... ). That's the usual dose, but some oncologists give the same drug amounts with a different schedule. 50 mg/m2 every two weeks or 25 mg/m2 every week. The total drug dose is the same over the same time period but the number of infusions is greater and the dose per infusion is less. I have seen at least one study that claimed that effectiveness was the same with the 50 mg/m2 as the 75 mg dose, but with reduced side effects. One guy I know got the 25 mg dose every week and he claimed he had hardly any side effects but got a complete response - PSA down from 50 to near zero.
Don't take what I've said as truth, but do ask your medical oncologist about the ideas.
And some thoughts on clinical trials
You asked about getting into a trial that requires chemo first. Will the docs admit you to it without chemo?
My understanding is that it is considered unethical to treat patients with an experimental drug without first trying the standard of care, already proven treatments. I have known of exceptions made when the trial was unable to recruit all of the patients it needed (I was in an NCI trial many years ago and allowed to take ADT with my radiation because I wanted it and they couldn't recruit enough people.) You can ask the MSK docs about their trial.
I will thank you but feel like I don't have knowledge as much as I have a lot of questions. I do know how to prepare for and moderate meetings for efficient use of time. I started to think about how I used to prepare for meetings and decided it might be helpful to approach it in a way that has worked for me in the past. This is the first time I will take an agenda to a meeting. Should be interesting.
I think it is difficult to pay attention to every word a Doctor says while discussing life and death issues pertaining to me. In real-time, I often zone out processing while the discussion continues. I have started recording meetings, with permission, on an Ipad. Word has a program that can transcribe the recording effortlessly, and I can check things I don't remember. It has been helpful. The transcriptions are far from perfect but close enough to trigger my memory.
I knew the risks and discussed the issues of trying a clinical trial before chemo with a couple of oncologists at different institutions, including high-profile programs.
Feedback like this is very valuable. Most of the time this sort of dialogue is between the left side of my brain and the right side. Talking out loud and writing is extremely helpful by itself. Hearing so many others' ideas and experiences is even better.
You said: I think it is difficult to pay attention to every word a Doctor says while discussing life and death issues pertaining to me. In real-time, I often zone out processing while the discussion continues.
Is there someone who could go along with you to the appointment? It's very valuable if you can, for the reasons you just described. When you are the patient, it can be hard to listen and understand things because you are so connected to the situation. Having soemone else who has a little more "distance" can really be helpful. And two people get so much more than one.
That's good. I think one of the biggest mistakes I made was going alone to the appointment where I got "The News". Stage 0 to 4 in a less than a minute.
I found myself wandering around the hospital like a zombie, pretty much in shock. Only go alone when everything is going well and when my doctor says: "Treatments are working, nothing to talk about this time."
I would add that a second person is imperative. Some insurance companies will pay for an Advocate to sit in on the meeting. If not a partner is good but they too might lock up at some point. If the MO has a good NP or PA get them to sit in and take notes.All my doctors write up their notes and put them in an after exam/visit format that I can read online. If I need clarification I email them and ask. Many medical organizations use MyChart or MyCare. Use this for your betterment. If they don´t have an online system ask why.
It is very important that we patients understand what the doctors tell us and if we question get a clear explanation.
I would do chemo, I had 6 infusions in 2018, worked part time with very little side effects, I did drink alot of water, avoided fried foods, got alot if protein as was suggested by the dietician . Would I do it again, hell yes if it meant a longer life. Just follow the diet and some use ice packs, check past posts. Good luck in whatever you decide.
My husband just finished 6 rounds of chemo. His only side effect was hair loss. If that is a concern to you, and you don’t have skull mets, you can try an ice cap. We bought ice gel gloves and socks, with an extra set of gel inserts and changed half way through his sessions, starting 15 minutes before infusion commenced and continuing 15 minutes after finished. I accompanied him and spoon fed him ice chips continually.
He drank tons of water, worked out daily, and worked full time. He left work for the few hours needed for the infusion. We usually went out for a nice celebratory lunch post treatment.
He had excellent results.
He teased the doctor that he must have forgotten to add the chemo to the IV because he felt so good.
I realize this isn’t everyone’s experience, and we are so grateful that this was his. We did not expect it to go so smoothly and didn’t even know that it was possible.
I don't care about hair loss. I do have a full head of hair, but aesthetics won't factor in my choice. I haven't consciously made a final decision yet but I have bought ice caps, mittens, and feet chillers. Perhaps my subconscious made a decision. Haha. I only care about deterioration of quality of life.
My husband’s QOL improved greatly. No more pain. Seriously, it’s the most effective tool in the toolbox, or at least one of them. You can always stop. His treatments were on Wednesdays. The day before, treatment day, and the day after, he had a healthy dose of Decadron added to his daily prednisone. He had so much energy! I clocked one run on sentence at 4.5 minutes. 🤣 We didn’t make plans for the weekend following treatment, expecting fatigue that never happened. By Friday he was saying “what do you mean, we have no plans? Let’s call friends and do something!” He worked his usual 50-60 hour weeks. And he looks mighty nice bald, surprisingly so.
It would probably surprise many people to read that chemotherapy improved your husband's QOL, but it shouldn't. I experienced the same thing. Sure the first week was always rough, but the 2 weeks after infusion got progressively better for me after each cycle. I had more energy, less pain. And I did quite a lot of activities during that time. At the end of it we hosted a "No-Mo-Chemo" party and invited a lot of people. I'll do it again if it will help.
The most difficult decision we will make is which treatment option to pursue that will potentially give us the best chance at a durable benefit with tolerable/minimal side effects.
It is so frustrating not knowing what is the right path, especially when a treatment may work for some but not for others. There are also numerous clinical trials offering hopeful new treatments. Nothing is guaranteed.
The best we can do is exactly what you are doing. Research all possible options, put together a list of questions before seeing your doctor, consider clinical trials, and get second opinions that will help to narrow down and validate your choices.
Hi Philly, your post is actually very useful and I agree that laying out the issues and possible actions pro’s and con’s is very usefulThanks for sharing, Ricardo
I see a risk that you may overwhelm your limited time and head-space with your MO if you follow what you wrote as your agenda. I suggest you distill it to clear questions about treatment choices. Go with a list of those in priority sequenced. Such as1. Should chemo with docetaxel be my next treatment at this time? ( probably a big yes )
2. If so can I have an appointment with a chemo educator/nurse to learn what I should know about it?
3. What is the most appropriate scan type and frequency to monitor response in mets? (You may not need a PSMA PET scan to adequately do this. That may be down the road to see if Lu-PSMA treatment could be an option for further progression after chemo.)
4. Which bone protecting regimen should I be on to help prevent “skeletal related events”? Zometa or Prolia (or Xometa)?
5. When should I get Provenge?
Those are the ones that come to mind by way of ideas for focused prioritized questions. Good luck. 👍🏼
The menu has plenty of variety. A different patient might say directly it is too big. I will do my best to get the doctor to narrow it down. That is my goal.
I met with the oncologist and ran through my agenda efficiently. He was patient and spent a reasonable amount of time answering questions. As time went on, he suggested that the top 2 options, for the moment, were chemotherapy and radium 223. The oncologist said there isn’t a rush to begin, with no evidence of cancer moving forward.
He said I should think about it and get back to him in the next couple of weeks. My response was that I didn’t need more time. Chemotherapy is the right strategy. We talked about Docetaxel and Cabazitaxel. He said he would lobby for cabazitaxel.
PSA readings have always been volatile, but the last three months have been confusing.
6/2/2021 81.6 Jefferson
6/15/2021 93.7 labcorp
6/29/2021 121.7 Jefferson
7/16/2021 92.4 Jefferson
7/23/2021 113.1 Jefferson
8/19/2021 95.8 Jefferson
8/31/2021 71.7 Quest
9/9/2021 119.1 Jefferson
ALP 25-120 LDH 125-240
6/3/2021 178 H 214
6/10/2021 185 H 298H
6/17/2021 191 H 235
6/24/2021 185 H 351H
6/30/2021 210 H 278H
7/8/2021 252 H 703H
7/15/2021 233 H 237
7/23/2021 290 H 249H
8/19/2021 229 H
9/9/2021 268 H
The last immunotherapy infusion was on 6/24/21. ALP and LDH are too high and could be indications of cancerous activity.
All other labs are consistently in the normal range. RBC, Hgb, Hct are 10-15% or so below the low end of normal. Other than that, there is an occasional outlier. WBC, liver, and kidney functions are well within normal ranges all the time.
I am puzzled by large % swings in PSA in short periods of time. Up and Down. Take out the non-hospital labs and it is still a roller coaster ride.
I don't think I share my oncologist's lack of urgency to begin chemotherapy. The first week of October seems like the right target.
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Treatment after Lu /Pluvicto? 
After 16 years, Chemo last line of treatment.
Is HT Treatment necessary after Orchiectomey?
Saw my Oncologist today, not good news.
