New poster here with a recent Dx. A quick review of my Bio should bring everyone up to date. I'm going back to Mayo Clinic later this week (they don't do video consults with international patients I guess...) for a second consult with MO after having my first consult with Canadian MO last week.
Mayo recommended PSMA PET scan to determine any additional mets and would advise chemo if so. Cdn MO said PSMA was a waste of time and money at this point, but still recommended initiating triplet over doublet therapy. Additional PSMA activity in pubic bone, iliac bone, T3 pedicle, and L3 vertebral body. Cdn RO says he is going to modify planning already completed for prostate radiation to catch pubic and iliac bone areas. Also going to look into referral to the main cancer clinic in my province for SBRT for the two in my spine, but thinks T3 may be too close to the spinal cord to attempt Tx and I probably wouldn't be accepted anyways.
Cdn MO says there is no evidence radiating asymptomatic lesions helps. But he says in the States, they will recommend getting all lesions SBRT'd for $$$ even though there is no evidence it will change long term outcome.
So I may get some conflicting recommendations between Mayo MO and Cdn MO within a week's time. And I may have to be prepared to make some decisions while at Mayo Clinic, whether that involves Tx in Canada or the US. So I'd appreciate any information others can share, whether personal experience or questions I should be asking. It's hard to think of everything when you're sitting in the consult room, and these trips are very expensive and I want to get the most out of them.
God Bless and good health to everyone here...patients and family.
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QuickStudy
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Wife here. Did you get your somatic and germline results back? If yes, can you share.
I disagree with your MO in Canada. A PMSA will show where your cancer is and then how effective chemo is after you complete. The germline and somatic will also tell them how aggressive it is. Some mutations respond particularly well to drugs. Also they may open you up to trials.
Hoping you get some more help from the intelligent minds here. Also, why Mayo in AZ? Why not MN?
I won't have the results of the genetic testing back for a month or so...likely right before I am to start chemo. I have four weeks of prostate radiation hopefully starting on January 27th, a two week washout, and then on to triplet therapy. At least that's the plan from the Cdn MO.
The decision to go to AZ over MN basically comes down to the availability of flights. There are few flights with long layovers to Minneapolis or Rochester, whereas I can get down to Az easily and relatively cheaply daily. I find Scottsdale to be good for my spirits to get out of the dead of winter for a break as well. Interested to hear if anyone thinks Rochester is that much better. Cheers.
I don't agree that RO's want to radiate purely for money. I think they get so many requests from patients who want to do something that they want to accommodate them if safe to do so. Also, no evidence of benefit is not the same as evidence of no benefit. We know that there is little survival benefit, if any, but we do not yet know if there is no benefit at all. There are some randomized clinical trials in the works that will tell us in a few years.
2. As far as "triplet therapy" goes, we now have evidence that it is beneficial for all men newly diagnosed with metastases.
What you wrote in your profile may reflect a mistaken belief that you can do docetaxel after doublet and get the same effect.
It would also misinterpret the data to think that low volume of metastases do not respond. The data for that subgroup is not yet mature. In any case, your low PSA subtype is in a category of its own and immediate triplet therapy is important.
3. Unfortunately, you have a "low PSA subtype." Because PSMA PET scans are so PSA-dependent, it may be the case that metastases won't show up on PSMA PET scans. If not, they might show up on FDG PET scans. Low PSA subtypes may respond best to triplet therapy.
1. I don't mind my Cdn MO...he seems very knowledgable and current with all the research. But he didn't have anything good to say about MD Anderson or Mayo, and doesn't seem open to anything that isn't completely mainstream. I worry I may be leaving something on the table up here. Public health care has its pros and cons. I also prefer to verify my treatment by consulting with a second MO because it's absolutely not good for my mental health right now to be researching a lot on the subject. Nonetheless, I read the papers you referenced and I'm glad I did.
2. I wasn't aware (or I missed it when it was explained to me) that doing one of intensification or chemo will make the cancer more resistant to the other. I've never really been told to think of my low PSA subtype as its own category either, which makes sense. All of this is to say I understand now why chemo then radiation is more important than the other way around. I'm going to see if I can somehow get ahold of my MO's nurse tomorrow to see if I can change my treatments. They said I need to do a chemo education course before I could start anyways, and I think I had to be on the intensification drug (will have to be switched from Xtandi to Zytiga or Nubeqa for triplet from what I was told) for a period of time before adding Docetaxel. So I think that leaves me time to go for my consult at Mayo this week regardless.
3. I'll look for a place to get the FDG PET scan in the future. PSMA scans just recently became available in the public pay system up here, and you have to be hormone resistant and post-chemo to even qualify. And again, MO thought it was a complete waste of time and money and just muddied treatment at this point. I'm not unhappy I had it done.
Thanks again Tall_Allen. Your post was really helpful.
1. I think Mayo got much better when they hired Oliver Sartor as an oncologist. I'm told by patients I trust that Elisabeth Heath is good as well. I never heard bad spoken of MDAnderson oncology.
2."(will have to be switched from Xtandi to Zytiga or Nubeqa for triplet from what I was told) for a period of time before adding Docetaxel. " Unfortunately, that's problematic. Xtandi induces senescence in cancer cells, so docetaxel will not work if you have been taking it for some time. If you have been using Xtandi for several months, you missed the window of opportunity.
I've only been on Xtandi since Friday...today was my fifth dose. Sounds like I need to make this change ASAP if that's the best direction to go for my case. Thanks Tall_Allen.
TA I read with interest you comments in you note 3. My treatment is doublet therapy for a lesion on my left iliac bone with 2 ribs indecernable at this stage. PSMA PET scans seem to struggle to show until psa is fairly high. Your comment suggests triplet therapy may work better. How is it shown you have a low PSA subtype?Thank you.
Low PSA is pretty simple to discern...it's your PSA score. Not everyone rockets into the 100s with metastatic PC. My score has never exceeded 4.5, which I think is why it was missed even though I was getting tested regularly while on TRT.
I think Tall_Allen preemptively answered the important questions. I think with any treatments that have significant side effects I would try to remember to ask about any things you can do to mitigate side effects that are not detrimental to the treatment itself. I'd also ask about Clinical Trials for new treatments but that may be something you may also want to do your own research to make sure you have left no stone unturned.
One of the reasons I wanted to postpone triplet therapy as long as possible is because I am a dentist. The risk of peripheral neuropathy, nailbed issues, and "chemo fog" on Docetaxel may force me out of practice, and I'm not really prepared for that yet. But the cancer is far more important and I'll do what is best for that and deal with the rest as it arises.
How does one check into clinical trails? I'll certainly ask at Mayo and up here next time. I've heard of people checking a U.S. government site as well. One thought I had regarding trials is that you could wind up in a placebo group and effectively get no treatment when you could be doing something else tried and tested. TBH, I kinda thought the trials were more for when you start coming to the end of the line and nothing else works. I think I'm looking at it wrong though. Thanks again for responding.
There's all kinds of trials. I think mainly people at the end are more open to Phase I and II trials of new drugs/therapies. A lot of time the trial is just comparing new combinations or new sequencing of drugs already proven to be effective so one group gets the more traditional strategy and the other gets a more novel strategy. But neither get nothing at all.
Hi, QS - just want to throw in here that many problems with neuropathy, nailbeds, and mouth/tongue issues can be mitigated by icing hands and feet, and sucking on ice chips, during and shorty after docetaxel infusions. It's a pain to do, frankly, but my husband had NO issues with any of the above. Lots of info online (and probably here as well) about how to do it. We didn't bother with trying to ice his scalp - read it's hard to do well and can result in patchy results - hair grows back (and it did!). Get on that triplet therapy quickly. Best of luck to you.
I don't want to influence you, but I am just curious isn't Boston and Dana Farber cancer institute closer to Canada? I agree that Sartor is probably the best oncologist but I am not an expert.
I just wish to say my situation.
I didn't have a low PSA producing cancer like yourself which puts you in a totally different league than myself.
Yes genetic testing would be great for you.
More less you have to start a clinical trial inside 45 days after starting your ADT drug like myself degarelix ADT injections otherwise you are eligible.
I believe that starting triple treatment would be great but it looks that you missed it if I understand well TA information.
I am not a doctor only a de Novo polymetastatic prostate cancer patient with distant bone metastasis in my neck and spine diagnosed in 2018.
I received early docetaxel chemotherapy six circles 75mg/me. Plus started degarelix because I had a sciatica bone pain. As a result of this I was diagnosed by my GP with the nuclear medicine bone scan.
My first MO said that some people live long on ADT alone but I was lucky enough to get my first appointment with the radiation oncologist professor Michael Izard and he and a board of urologists of my hospital in Sydney Darlinghurst recommended the early upfront chemotherapy.
I had 4 psma pet CT scans at the start of my treatment every 2 weeks. After that I started docetaxel chemotherapy 6 cycles and after that I had a nuclear medicine bone scan.
For 4 full years I didn't have any scans because nadir of my PSA was 0.12 .
Only at PSA 1.25 I had a new psma pet CT scan which didn't find any visible bone metastasis only cancer in 95 % of my prostate with psma SUV max value of 14.
I SBRT my prostate with the Elekta Unity MRI linac Swedish machine and my PSA dropped from 1.4 to 0.25 six months after the SBRT radiation. The SBRT radiation hapend 2 years ago.
A year ago at PSA 2 I started bicalutamide and now my latest PSA was 2.73.
I'm closer to the west coast. If I was going to go to Boston, I'd likely go to MD Anderson or Sloan Kettering instead. I'm sure flights/access are much better up and down the east coast.
I'm fine to get whatever scans I need done and pay for them myself if necessary. PSMAs seem to be becoming SOC, but they just don't seem to be used up here...at least at my stage of treatment.
I do both. My wife doesn't have a lot of medical training so I brought my daughter as well to my first Mayo appointment. I try to write down questions as well. But I find this early in, with an aversion to reading too much online because of my newfound anxiety, I don't always go in knowing what to ask. This thread has certainly provided some. Many Thanks.
First, I would suggest having a family member or friend go with you to appointments with your written questions. They can either tell your oncologist what the questions are or remind you. You should be focused on listening and discussing your current diagnosis and treatment options. Your companion should keep notes of what was discussed. Options should be considered and not decided in the appointment if possible. This gives you time to research.
Don't know how much research you have done but this is also really important. You can get good information here but doing your own research helps you ask the right questions. If you haven't read it, I would suggest reading "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer" at URL: amazon.com/dp/B07CZ19FVQ as a primer.
In your bio, you mention your Gleason being "down graded" from 4+4 to 4+5/5+5. This is a higher risk category, not lower. Also, you underwent testosterone replacement therapy before other treatment. I did the same before my diagnosis. I believe this feeds the PCa to make it more advanced by the time it is discovered. Testosterone is a known promote the progression of the disease. It is being tested in a clinical trial as a bi-polar treatment but no conclusions have been published.
Generally, SBRT can be effective on limited bone lesions to kill them and relieve pain. It is not used a curative treatment for widespread disease. Others may know of more advanced treatments for your situation but educating yourself from trusted sources and posing the options to your mO may be one way of reaching a treatment that you feel will be effective.
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The shadows of my spine...
Visit to MD Anderson, Houston, if you want to consider a second opinion.
Age 52. T3bN2M1b with two bone mets. PSA only 5.45. Confused, scared, father of two, need some support and encouragement.
Questions to ask regarding an additional docetaxel infusion
Quest for Lu 177 therapy 3.0
