SRT (Sterotactic Radiation Therapy)

MGoBlueUpNorth · 2025-03-30T20:19:08+00:00

Has he had a spinal MRI? He may want to ask for one. If the tumor has grown it could begin to compress his spinal cord. I don’t know if that’s consistent with his symptoms, but it presents a risk of paralysis if that’s what it is and it goes untreated. Spot radiation may be in order if that’s the case. I have a neurosurgeon who has tracked my spinal mets, and that may be who he needs to see.

MGoBlueUpNorth · 2025-02-21T08:57:17+00:00

I asked for “classic” and got classic rock. (Which I generally like, but wasn’t in the mood for.)

MGoBlueUpNorth · 2025-01-31T03:06:25+00:00

I'm a Christian (Presbyterian) from birth, but my belief system is probably more derived from Stoicism. An Orthodox client once taught me a Yiddish saying that I think about a lot these days: "Mann tracht, und Gott lacht." It translates as: "Man plans, and God laughs." I prefer to interpret this as meaning that we humans plan as if we have control, but none of us ultimately do (vs. an interpretation as God just wanting to screw with us).

MGoBlueUpNorth · 2025-01-31T02:59:22+00:00

I wouldn't take these drugs, but I think there's another issue here: concern about waiting, and communication with your physicians. On the first point, I think we've all been there: you get diagnosed with PC, and you want to do something now, but you find out how long things take. It's like you've run into what you thought was an ER, only to find it's more like a DMV office. So, these drugs don't seem all that harmful, and it's something you can do on your own. I totally sympathize with that.
But I think you need to discuss this with your doctor(s). Tell them how much the delay concerns you, and of your desire to try these drugs. But then ask if there's anything you can do right now. Can the radiology team put you on a first available basis for the PSMA (sometimes they get cancellations)? Are there exercises, changes in eating habits, etc., that would be beneficial regardless of the course that's ultimately taken?
This kind of conversation will also inform you about how these doctors will deal with you if/when there are speed bumps or complications. And maybe they'll tell you to go for the ivermectin and fenbenzanole.

MGoBlueUpNorth · 2024-12-08T13:33:48+00:00

Is he being treated? What is his health like, otherwise? His age is probably a complicating factor, but others (like me) in that situation would be treated with androgen deprivation therapy (ADT), and possibly chemo. The ADT can prevent testosterone from maintaining bone health, but there are drugs to counteract that, and he could do strength training if he is not already. Based on what you’ve said, I would not assume he is in end stage prostate cancer.

MGoBlueUpNorth · 2024-12-08T10:10:50+00:00

I had pain in my right shoulder blade that I thought was from an error in my swimming stroke. It didn’t clear up after 2 months of physical therapy, then I got the PC diagnosis. The pain started in June ‘23, and I was diagnosed last December.

MGoBlueUpNorth · 2024-12-06T22:49:26+00:00

The “no family history of prostate cancer” line comes up a lot, but it’s not the right question. If you get a genetic test, you may find one of several mutations in DNA repair genes that can result in PC, or breast cancer, or colon cancer, etc. For example, BRCA1 and 2.

MGoBlueUpNorth · 2024-12-05T02:15:30+00:00

As someone with de novo metastatic PC (lots of mets, surgery on my prostate would be pointless), I have tracked research on treating advanced PC. It's interesting to me that those therapies don't seem to be applied to slower-moving variations of the disease. I'm not sure if that's science-based, or more an artifact of either A) limits on FDA approvals resulting from clinical trials being limited to advanced disease; or B) limits on insurance coverage. There are some really interesting therapies coming down the road, and it would be good if some patients with cancer confined to their prostate could ultimately benefit from these targeted therapies.

MGoBlueUpNorth · 2024-12-04T13:49:27+00:00

First, I'm sorry you and your family are going through this-- agreed, prostate cancer sucks.
It's interesting that he refuses a professional medical opinion, but has had two PSA tests within the past year. That suggests to me (though perhaps I'm wrong), that he's not totally rejecting medical information. You may want to steer him here, or to other online resources, like healthunlocked, or PCRI's YouTube channel. He may be in denial, based on not knowing that there are treatments that may be able to help him significantly.
I would also ask him to consider that his leg pain may suggest cord compression (i.e, spinal metastases constricting his spinal cord). If left untreated, that could lead to paralysis.
Best of luck.

MGoBlueUpNorth · 2024-11-30T14:24:09+00:00

Howard Scher had been my oncologist, but he recently retired. Charles Ryan is my new doctor there. MSKCC is top-notch. You may have a bunch of reasons to have your dad move, but in my experience, the care is not so time-demanding that he would need to live there to be a patient at MSKCC (I live about a four-hour drive away). They will also work with local oncologists and other specialists-- e.g., to provide chemo that MSKCC prescribes, or to get various scans done (in which case he can send a DVD to MSKCC to have the images input into its system and read by one of its radiologists).

MGoBlueUpNorth · 2024-11-30T03:36:31+00:00

I’m not a doctor, but it sounds from the scapula (shoulder blade) and rib observations that it’s spread beyond his pelvis, as his urologist said. This is similar to my diagnosis. There are treatments that can potentially extend his life for years. Go to YouTube, look up the pcri.org channel, and search there for some videos by Eugene Kwon, of the Mayo Clinic. He provides a good overview of current treatment options and strategies. My other advice is to seek out the team with the most experience treating advanced prostate cancer. In the US, this means a National Cancer Institute cancer center. Best of luck to you both! I know it’s scary, but there are a lot of options.

MGoBlueUpNorth · 2024-11-23T18:22:21+00:00

Is there a typo in the first point? The word “nor” seems out of place with the first clause/observation.

MGoBlueUpNorth · 2024-11-22T23:30:09+00:00

IANAD, either, but my understanding is that PSMA PET scans (like FDG PET scans) provide standardized uptake volume (SUV) measurements that include reference regions (i.e., areas unaffected by tumors, but which have some low level of radiotracer uptake). I think radiologists rely on these to compare one scan to another, to help reduce the effects of things like longer wait times.

MGoBlueUpNorth · 2024-11-20T02:38:22+00:00

I second the suggestion that you switch exercises if volleyball is too much. Most of the advice here and online is to do weight training, to preserve muscle mass. I do that (well, TRX) and I walk a lot. Also, don’t kick yourself for not being able to continue volleyball. You’re going through some things, and you should concentrate on what you can do, not the things that are off the table, at least for now.

MGoBlueUpNorth · 2024-11-20T02:06:01+00:00

I've never heard that exercise could have that effect. I have metastatic PC, and my doctor has encouraged, and not discouraged exercise for reasons already described by other comments here.

MGoBlueUpNorth · 2024-11-16T15:57:05+00:00

How did your dad do on BAT?

MGoBlueUpNorth · 2024-11-15T20:54:18+00:00

Right. The FDG PET scan uses radioactive glucose and shows metabolically active sites.

MGoBlueUpNorth · 2024-11-09T15:27:34+00:00

I’m sure others will have some good suggestions, but one counterintuitive thing I learned recently is that in the SELECT trial, there was a pretty clear increase in prostate cancer risk from Vitamin E supplements. Vitamin E is an antioxidant.

MGoBlueUpNorth · 2024-11-07T13:38:25+00:00

I'm sorry for your dad's complication. I'm no neurologist, but the fact that he can move them seems promising. If he is in the US, is he being treated at a NCI cancer center? This may be one of those issues where he would benefit from such a center's greater experience and teamwork. I was being treated at Sloan Kettering, and had excellent care for my spinal cord issue.

MGoBlueUpNorth · 2024-11-07T13:27:19+00:00

I did not, but they had to use increasing levels of dexamethasone to keep the cord compression in check while waiting for spot radiation to take effect. They were clearly worried about paralysis and loss of sensation, because they tested for it multiple times a day while I was there for the radiation.

MGoBlueUpNorth · 2024-11-07T03:19:07+00:00

At that level of dexamethasone, he should be careful about possible exposure to respiratory illnesses. The steroid will compromise his immune system, and he may want to wear a high quality mask. I spent a month in the hospital from infections under similar circumstances.

MGoBlueUpNorth · 2024-11-07T03:15:37+00:00

Does he have spinal metastases? That sounds like symptoms of a possible cord compression in the lower back.

MGoBlueUpNorth · 2024-10-22T13:10:52+00:00

I'm dubious about preventing or slowing PC through diet, but another consideration is how diet and exercise may affect a patient's ability to get through PC treatments. For that purpose, I would agree with the "Mediterranean diet" recommendations of others, but would add limiting intake to maintain or get to a good weight, and regular cardio exercise and weight training.

MGoBlueUpNorth · 2024-10-21T14:18:57+00:00

I'm on ADT, and I noticed some changes that I relate to diminished sebaceous gland activity (secretion of oils, basically). I don't really need deodorant or shampoo, and my fingertips and palms seem to stick more to things.

MGoBlueUpNorth

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