I stumbled across the online second opinion option through Dana Farber. Basically for $2500 they will review your case and report back to you. They are unable to bill insurance for this review (out of state licensing issues) Currently debating whether to spend the money. Anyone have experience with Dana Farbers online second opinion process? Any additional hidden costs?
Not sure that they’d have anything new to tell us, but I’m thinking the more eyes the better at this point especially since all standard of care options have been exhausted and low blood counts make trials out of the question right now. This would not be our first “second opinion.”
Thanks for any insight. My guy is just not ready to quit pursuing treatment and I’m trying to be the best support person I can be. I am thankful for this forum, very helpful indeed.
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Zengal79
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Yes, he was my guys original doc. He’s fantastic, and still bounce things off of him as well. Only reason he left Mayo was to get in the managed access lu177 program at UofC. That treatment failed and he’s left w low platelets and hemoglobin requiring blood transfusion every three weeks. Body has been through a lot, but he generally is still doing pretty well.
If all standard of care options have been exhausted and trials are out of the question, I have to wonder what the special benefit might be of a DFCI second opinion for a man with PC.
As a DFCI patient, I discovered rather early on that my ONLY options there would be SOC, outside of clinical trials (one of which I am now participating in). For example, I expressed interest in pursuing some form of BAT, and was informed by my MO that BAT would be out of the question for me at DFCI unless it was within a trial setting. (The chances of a BAT trial there seem remote, since there is no money in it for the institution.)
That said, I have no firsthand (or other!) knowledge of their online second opinion option. All I can say is that as a DFCI patient involved in a DFCI-sponsored clinical trial, I am actively seeking a second opinion NOT from one of their docs or programs, to : 1) get an unbiased opinion on my progress during this trial, and 2) explore non-SOC options for the future.
I have my doubts about the potential success of many non-SOC options, which might include special diets or use of supplements and/or off-label and repurposed drugs (like disulfiram, phenelzine, etc.). But I have no doubt that high-T treatment can work for SOME men to stall PC progression, and is likely to improve QoL for many of the men whose PC is not inhibited by it.
So to me, pursuit of a particular last-ditch effort makes a bit more sense if it actually might help QoL rather than diminish it even further. Thus if I was to spend a lot of money on a second opinion, remote from where I live and get treatment, I would try to get one from a BAT guy like Demeade or Sartor or Schweizer.
Thanks for your insight. He’s considered BAT but was told the same thing as you were. Not outside of trial, so he’d have to go it alone it seems. It was suggested to get scans carefully looked at beforehand and make sure cancer isn’t too close to spinal cord before doing BAT due to potential flare causing potential paralysis.
If really considering BAT, then one of the guys I mentioned might be good to consult. I believe Denmeade has said most of the T flare and associated bone pain they see appears to be inflammatory and quite temporary in nature, and not a sudden progression of mets.
That said, they typically will not accept guys as patients who already experience painful bone mets or are at high risk for cord compression. (That's one reason I want to try sooner rather than later, as all my many bone mets still cause me no pain whatsoever. A progression to bone pain may rule BAT out as an option, for the few docs who might actually consider it.)
Some docs will do high-T outside of a trial. I think the key is, they will want to "officially" prescribe it to treat the man's low T (since that application is SOC) rather than to treat his PC (since that application is not SOC). How many docs are willing to do this? Not many. If you find some, please let us know!
I am intrigued with the BAT protocol and the possibility of an improved quality of life. Not everyone responds and for how long. I shall be giving it serious consideration as time goes on I feel.
"As a DFCI patient, I discovered rather early on that my ONLY options there would be SOC..."
I'm an Dana Farber Cancer Institute (DFCI) patient with Stage 4 Prostate Cancer. three years ago - diagnosed with PSA 1000+ with severe pain in groin area, was started with Lupron, Zytiga and Taxotere (Chemo), which at the time, this "triple set" therapy was not standard of care (SOC).
Today, my PSA < 0.02, is undetectable, but - of course, I'm an experiment of one...
Since all the elements within the triplet therapy are approved SOC elements, I would not characterize variations in the sequencing or combining of these elements as "outside the standard of care" in the sense that I meant... namely, having already exhausted the SOC arsenal (which includes those three) moving to treatments that are in no way FDA-approved for advanced PC.
My treatment at DFCI has included something even more outside the SOC box than what you got, which was tE2 as a form of ADT. The only reason this was recognized by my DFCI doc as now "acceptable" is because of the Lancet article detailing the success of the PATCH trial in 2021. So when I say "outside SOC" I mean something that a clinical trial has not shown to be safe and effective even in its individual components, not just in a particular combination, duration, or sequencing of those components.
Since estrogen therapy was the original SOC therapy for PC, along with castration, the transdermal version simply amounted to another version of ADT that needed to be proven to be safer than the oral version. So even if tE2 remains outside the SOC box for most docs, the fact remains that high-dose estrogen WAS a mainstay SOC for decades. As such, I consider it as a de facto SOC treatment (ie, a form of ADT) even if the medical establishment still does not.
BAT unfortunately involves a high-dose T element that was NEVER part of any SOC for PC, even though its early experimental use in the 1950s showed it worked for SOME men. Until it can be discerned WHICH men will be helped, it will be further outside of the SOC box than triplet therapy or tE2 ever were.
If you are down to clinical trials at this time.... $2500 just for them to tell you if you qualify for one of their trials????? Hmmm?? Personally like the bAT suggestion with a BAT expert Doc....or BAT expert working with your local Doc?
Would really hesitate if option is randomized clinical trial????
I simply asked my GP for a referral to see a different Oncologist. When I made the appointment with the new Oncologist, I made it clear I was looking for a second opinion and was asked to send through all my scans and reports. When I had the consultation, he provided me with his take on my diagnosis and prognosis. He concluded saying he would pretty much follow the same SOC that I was currently undergoing. This all cost me a trip to the see my Doctor and a standard Oncologist consultation fee (around $400 total). Money well spent for piece of mind. DD 😎
I've been with DFCI for 7 years, after researching and visiting 3 other top cancer centers in the U.S. They are top notch scientists and researchers, but what keeps me with them is the personal attention I get every time I'm there. They are responsive, compassionate and professional, from the schedulers to the receptionists to the nurses to the docs. When I contact them via the portal or a phone call, I always get a response with 24 hours, usually the same day. I travel there regularly from Colorado because of their science based approach to treatment options and because they are wonderful professionals top to bottom.
I agree with your findings as well. The difference is very apparent. Dr. Beltran is a colleague of Denmeade. I plan to explore BAT via this route in the future.
Just an update. We have decided to attempt to find a doctor that will have a real discussion about BAT. Called Sartor at Tulane and he is not accepting patients and stated that no one there is doing BAT on new patients. I will try the other suggestions and report back. Really appreciate all these well thought out responses.
I had a high PSMA expression 95%, after my second infusion PSA dropped from 8.1 to 0.19. To date scans have come back stable. Waiting for next scans in a week or so.
Thanks for you reply. This board has been so helpful for me. PARP inhibitors are contraindicated right now due to the blood counts. Hemoglobin holding around 6 and platelets down to 12,000. Transfusion day tomorrow.
Way to be proactive in your care. Sounds like a good plan.
You’re correct. There just don’t seem to be a lot of options available once blood numbers are tanked. Keytruda has been suggested as an option due to it not having a toxic effect on blood numbers: TMB over 10 but not 20.
It’s frustrating, especially with someone so robust with such a lust for life still. We make the best of it. Best wishes on your journey.
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Dr. Van Allen @ Dana Farber Cancer Center
2nd Opinion. 
Looking for an advanced prostate cancer doctor recommendation at Dana Farber, Boston. 
Can I trust a second opinion?
Have to make a decision next week 
