Opinion on radiation to bone mets.

[Jscjac]

My husband, Jeff, is Stage 4 metastatic, G9 with 11 bone mets. History : RP 9/13/17 (PSA was 52), pathology showed "involvement" in two of the four lymph nodes that were removed. First ADT injection was 9-27-17 (Eligard). This was all that could/should be done according to the urologist/surgeon. We asked about radiation and Zytiga. "Not at this point" is what he told us. We sought at a team approach (closest to home) and that is Vanderbilt. We saw an MO (Pca is one of three cancers he specializes in) on Jan. 4 and he ordered PSA reading, which was .9. (This was the first reading since the RP.) Three weeks later, second injection (Vandy uses Lupron) and PSA reading was .7. We had an Axumin scan last week that showed NO nodal involvement, but did show 11 bone mets. MO says they did not "light up" but we have to assume they are metastases because of the .7 PSA. Makes sense. We met with Radiation oncologist here at Vandy yesterday and he says no reason to treat bone mets because Jeff is having NO pain or discomfort. (Mets are on ribs and vertebrae.). ONE met, however seems to be wrapping around the spinal column, again, not showing activity, but very concerning because of its location. RO said he would treat it IF it showed any signs of life. Jeff is having the MRI as I am typing this. I guess my main question is : should we try to find someone who WILL treat the mets ??? The consensus of the Tumor Board here at Vandy is to add Zytiga immediately, which we are doing. But they always refer to "standard of care at Vandy" and it seems quite conservative to us, based on research/reading we have done. We've asked about genetic testing/molecular sequencing, adding Metformin and Avodart, etc. Unfortunately, they have no clinical trials, at the moment that would make sense for Jeff. From DAY ONE, we have expressed a desire to be as AGGRESSIVE as possible in the treatment protocol, as Jeff is a very fit and otherwise healthy 61 year old. I would be interested in any thoughts/insights you folks might be willing to share. Thanks !

[JamesAtlanta]

If you can, I would go to a hospital that has specialists in PCa and offers clinical trials. I have a local oncologist (who we love and has treated me, cured my wife of breast cancer and cured my mother-in -law of ovarian cancer), but we augment his work with an oncologist at MD Anderson in Houston. MD Anderson recently recommended a more aggressive approach that my local oncologist said is “the reason you go to MD Anderson.” It is not the ‘protocol’, but is tailored to my specific condition. These are the men and women who actually ‘write the book’.

There are a number of hospitals to consider - MD Anderson, Sloane Kettering, Cleveland Clinic, Johns Hopkins. I bet Dr. Who will send you a link to all of them to consider.

But given your circumstance, I’d recommend a second opinion.

Good luck on the journey. We are all here to help!

James

[Jscjac in reply to JamesAtlanta]

James ! You are almost always the first one to answer my questions. I cannot adequately express my gratitude. Would you happen to know if MD Anderson has fairly easily acquired lodging, etc. We would fly in from Knoxville and just wonder if we would need to plan to rent a car and where the most convenient lodging might be located. Thanks again !

[JamesAtlanta in reply to Jscjac]

You can stay at Rotary House. It is a hotel managed by Marriott that is located in the hospital. You literally walk out of your room to your appointments. The hotel has a nice a restaurant and bar so you don’t need transportation while you are there unless you want to get out and explore Houston. You can even have your labs drawn in the hotel. The hotel website has tips on transportation.

Good luck on your visit!

James

[Jscjac in reply to JamesAtlanta]

Wow. That is amazing. Thank you for this info and your encouraging words.

Julie

[Chiquis]

It is great that you are doing your research. It can be very stressful. I agree 100% with James, get a second opinion. In my husband's case, his Radio Oncologist wanted him to wait until the PSA reached to 10 to start only with Lupron. PSA was 8.7 in July. Axium pet scans showed metastasis and 2 lymph nodes. The Medical Oncologist had an opposite opinion. He said, "I will throw the whole kitchen at you," and with that we did ADT, Zytiga and Prednisone, plus Chemotherapy and he mentioned he wants to do radiation when Chemo is done. 🤔 Every Dr. has a different approach, but ultimately it's my husband's decision of course.I wish the best to you both. Keep strong, there's hope.

Sincerely,

Erika.

[Jscjac in reply to Chiquis]

Erika, that is honestly how I feel. But as you said, and as I have said to Jeff, it really is his decision. I have done much more research, although he IS catching up ! I DO believe that the MO at Vandy would agree to chemo IF we really pushed for it. We also believe the team at Vandy is excellent. My opinion is that while Jeff is so young and strong (physically fit) and has "low/light burden of disease", (I think that's how the MO described it), why not try EVERYTHING and ANYTHING within reason ??? What am I missing ? I very much appreciate your input. Thank you.

Julie

[BigRich]

What did Vandy say about adding Advodart?

Rich

[Jscjac]

NO to Avodart, as it redundant with Lupron. I had not seen that in anything I had read. MO said NO to Metformin because it has not shown benefits for men in Jeff's situation (i.e. with his diagnosis). I understand that rationale to a certain extent. But, could it do any harm ???? I mean, it's cheap and minimal side effects...it's just so frustrating because we aren't doctors, so we only know what we have read. And we have read and researched our eyes out. We are fortunate enough to be able to travel for treatment elsewhere. I am leaning to Sloan-Kettering, although Johns Hopkins would be a bit closer for us. Thank you for your time and thoughts.

Julie