Got a MRI report back from my new MO...several spine mets which just confirmed my Psma pet. Everything else is structurally good. Not good at comprehending these reports. Not a medical kind of guy...If I couldn't stop the bleeding or couldn't drain the hose that was about the only time I went to a Doctor... Upon reflection bad move, got me into the club nobody wants to be in..I miss read my last Psma pet report about mutations.I hesitate to make sense out of my latest MRI. I'm doing my Docetaxil infusions now what can I expect as far as those current spine mets? Do they go away.. just go dormant? Or no effect on them at all ? Appreciate your time
Spinal mets. : Got a MRI report back... - Advanced Prostate...
Spinal mets.
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APK3
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If it works, docetaxel will shrink your spine metastases and prevent pain. It is not a cure, however.
Tall Allen, can radiation kill those bone lesions?
It can shrink them.
Apparently there is evidence that SBRT, as opposed to systemic therapy, may not just shrink a detected tumor that it is directed at, but may actually destroy all cancer in it, at least when the patient has limited metastatic disease with few small detectable tumors.
From Long-term outcomes of SBRT for PSMA PET detected oligometastatic prostate cancer ro-journal.biomedcentral.co...
"There were no significant risk factors for Biochemical Failure (nadir + 0.2 ng/L definition) or ADT relapse at 5 years (Table 1) on univariate analysis.
Post SBRT PSMA PET scans were available for 95 of the patients (92% of the cohort). Of these, 76 (80%) had a complete response in the treated lesions and the remaining showed partial or near complete response. There was no radiological evidence of any in-SBRT-field failure in this cohort."
"Conclusion
PSMA-PET guided SBRT for oligo-metachronous PCa recurrence in appropriately triaged patients results in excellent local control, low toxicity and over 50% ADT free at 5 years"
‐-------
From Radiotherapy of oligometastatic prostate cancer: a systematic review, 9 March, 2021
"2--year LC (local control) rates of 76 -100 %" (pooled results).
And "The 2-year local control reported by Triggiani et al. was 92.8% and 90.2% for HSPC and CRPC, respectively, so that it can be concluded that SBRT was able to achieve an excellent LC rate in both CRPC and HSPC oligometastatic patients [18]. This is not surprising given the fact that most studies of RT palliation for bone metastases have reported high response rates"
Yes, local control of bone mets is good for 5 years, and in some cases, a second treatment of SBRT can be used.
The controversy is about when to irradiate them for best pain control. As far as we know, there is no survival benefit. If there is a survival benefit, it is probably small.
prostatecancer.news/2022/12...
Overall survival was the same (22 months) in both groups.,..... Ouch.. Thought I'd have a tad more than that. Thanks for the post.
That was just that group of patients.
Thank you TA. MO confirmed once the horse left the barn no chance for a curative end game . He did say as you have said with triplet he thought he could get me a few good years based on my current response to therapy.
Bravo APK - you are on the gold standard of care, Triplet Therapy!
As for spinal or vertebral mets, I got 'em too. Diagnosed two years ago. Doing fine so far. In fact "back pain" was how I was diagnosed originally. By then it was lots of pain because of invasion of the epidural space. The beginnings of gait problem. Three seriously compromised vertebrae.
Now I'm still on therapy and will be forever. I have a few other mets in my pelvis, but fortunately no organ involvement yet.
So in answer to your question, Tall_Allen says met masses will shrink. For me no pain at all and I am working on exercise. What I have learned is that any destruction that has already occurred cannot really be reversed.
Here's what is hard to learn about, which is biomechanical skeletal risk. This is a big concern that overlaps different domains. Basically I've been told "don't twist". Which means don't swing kettlebells. Don't do deadlifts. If you have to move be very careful about lifting boxes or furniture. As in just don't do it.
Apparently developing lesions in long bones may ache as they get weaker. This is a warning sign. See a doctor cutie a maybe get radiation. I have not experienced this yet. But a vertebral fracture could happen at any time. I have had almost no information from my doctors on this.
However I have read a good quality scientific article references biomechanical analysis in the case of bone cancer - but the point being made is that this field is almost in its infancy and no one is doing it. Maybe a radiologist can say that "T4 is 40% lucent" - but they have no real engineering idea of what that means. It could mean 80% reduction in strength. Who knows?
My sense is my mets are asleep. And could be awoken or reseeded by new travelling cells. It's fascinating to learn that bones are a living structure and constantly being rebuilt. Sadly though the bone structure that is rebuilt after prostate cancer infected bone has died is never anywhere near the strength of the original.
Along with everything else, we have to be careful. A fracture is catastrophic. Although I have read that people have been repaired even in such circumstances!
Exercise with microshocks may signal bone strengthening. You're probably going to be on calcium with vitamin D - it's easy to get the wrong calibration with bad side effects. You'll get maybe an annual scan for bone density and see how your ADT-driven bone thinning is coming along. They will eventually suggest scary bone-strengthening drugs. Few people are talking about Estradiol even though that may be relevant.
I'm on those "Scary Bone Strengthening Drugs" you mentioned. And STILL suffered a vertebral fracture at T 11 . Asked MO about Estradiol, and he is dead-set against any "Estrogen" as he is stuck in the past of Oral Estrogen Cardiovascular complications. Got a second opinion from Fox Chase, he believes there was a substantial tumor that responded well to the ADT, leaving a void which facilitated the "Collapse". Certain movements cause a lot of pain. Otherwise, I perform normal activities, just with more caution,( which is difficult to "think first")
I had my vertebral fracture repaired and strengthened with a Kyphoplasty procedure. They also did a biopsy of the vertebra to check for PC.
Original response to the fracture was Osteopenia, I asked "Why have I been on XGEVA, Calcium, and D3 to prevent this, yet it didn't prevent this". I've read the benefits of estradiol patch, and it seems as though the "Medical World" hates that it's a Super Effective, Inexpensive alternative to the current way of treating this metastatic Mess. The "P A T C H" trial has been going on for over a decade, with very promising outcomes, yet American doctors run away from it, saying it's a cardio nightmare. Then I read the side effects of ADT + Zytiga+ Prednisone and throw in XGEVA and patients are walking time bombs, leading me (and others) to believe it's all about the Benjamin's. Hell, they MANDATED an experimental "Vax" with NO TRIALS , but won't get behind the estrogen patch........just doesn't pass the smell test, as we all know that low T is the cause of so many of our side-effects, and the estradiol patch would correct that.......some have even suggested the PATCH be used to replace the current standard of care, ie ADT + Abiraterone
Bravo bringing up Estradiol, Tommy.
By the way for any readers that may be unfamiliar it's important to distinguish between (1) new transdermal low-dose Estradiol for estrogen add-back versus (2) old oral high-dose Estradiol as an ADT replacement. They are very different.
The medical community's prejudice against estradiol is probably entirely associated with the issues around the use of Estradiol as ADT replacement. This ongoing prejudice is unjustified. We are solving a different problem, which are the serious side-effects of male low estrogen resulting from ADT therapy. And everything has changed with the delivery to the market of transdermal Estradiol, which completely eliminates the cardiovascular risk previously associated with oral Estradiol.
Still trying to get a doctor to prescribe this for me.
Anyone who's interested, here are previous posts and comments related to the "Estradiol for estrogen add-back" question (I'm linking to both posts and comments - one should scroll up and down for the full discussion).
healthunlocked.com/advanced...
The Kyphoplasty procedure will permanently fix your vertebra!
Thank you John. Your post was very helpful. When you talk about scary bone strengthing drugs are you talking Exgeva? Are you on Exgeva or anything similar. Also do you have trouble with your calcium ..vit d intake? As you talk about bad calibration???
Hi APK. Glad you liked my post! I just looked up Exgeva, and it is Denusomab. Denusomab apparently is similar to bisphosphonates. Yes, these were the drugs I was referring to. I am not on them yet because among my many blessings I still have good bone density. Several times medical oncologists have suggested to me that I shouldn't worry about bone fracture risks future because they'll just put me on a drug for that. And I said "you mean like Denusomab?" They said yes. It's all so casual!
And then I read about their risks and the direct side effects and the actual effectiveness of the drugs and even systemic interactions. That's where I formed my opinion about these drugs. And decided not to be casual.
In the meantime, I'm trying to do exercises that include "microshocks", which some people refer to as "vibration", and which is supposed to signal for the good kind of bone growth. Specialized exercises, you know, like "walking" 😂. For a while I was also including short sprints in my walks.
So I have not yet been forced to actually confront the decision for bone strengthening drugs. And my lay person's opinion is just that, not a recommendation for or against.
As for "calibration" of vitamin D and calcium, this is a really important question. I do get my calcium blood levels checked about every 6 weeks or so as part of my blood panels. (It just crossed my mind now that I don't get my vitamin D levels checked!)
My understanding is that, as you suggest, skeleton-related supplements do need to be calibrated. I have made some changes myself (at one point I was probably taking too much vitamin D!)
And then there's the whole arterial calcification risk problem. So you want calcium for your bones but not for your blood vessels! So I also take oral vitamin K2 and I also eat two slices of aged Jarlsberg cheese everyday (apparently it has the highest level of nice K2 of almost any cheese). The research on this is not very controversial and there doesn't seem to be concerning side effects related to normal supplementation.
I have not had any help from doctors on "calibrating" all this, unfortunately, except for checking the crudest markers on my semi-regular blood panels. At this point the usual suggestion is "holistic", but I haven't really started looking for one yet. I believe it will be difficult to find a good holistic doctor, who's not at least a little bit of a quack. By the time I figure all this out, well I don't even want to think about it.
My first Uro/Oncologist wanted to start me on Exgeva right away without a bone scan. But I had an old root canal that was suspect which turned out to just needing a new crown but delayed the shot. TA answered a question on this forum when I ask about the shot by telling me to get a Dexa scan first as it's not indicated until you know your scan results. My new MO says ehhh no shot yet confirming what TA said.. Get a scan and we will discuss. So that's where I am with Exgeva or whatever biosimulars there are .
Wow that's kind of shocking that a urologist, who is of course not a medical oncologist (although that shouldn't make a difference) would just prescribe Denusomab/Prolia/Exgeva without a bone scan! You're supposed to get a baseline scan so that you can compare every year to the rate of bone depletion. TA is the best. (Also apparently there's a very small risk with these drugs related to the jaw; the risk is aggravated with invasive dental work - another item on the checklist.)
Good overview, JohnInTheMiddle.As for microshocks, I was jumping from a 43 cm high bench landing on one foot at a time, in different directions. For a long time.
It's supposed to be about the best there is for bone-stregthening, I reluctantly gave it up after realizing it just may be bad for the knees, in the long run, although I find no data on the risk.
OMG Purple-Bike I think you're serious! Fantastic! I get micro shocks by walking and sometimes by sprinting. Or walking up and down a flight of stairs carrying 20 lb of dumbbells. All these things are good but you set the standard! And 100% for bone strengthening! I ask why give it up? 43 cm okay, but how about 10 cm? 🎉
Do you have any idea whether even a small number of tiny tumors detected on PSMA PET/CT scans, as has been the case for me, implies an increased risk of biomechanical skeletal failure? Asking since all-out deadlifts, squats and kettlebell raises are key to my physical well-being....
I'm not a doctor or a biomechanical specialist or an engineer 😂. But I completely appreciate the importance of deadlifts, Purple-Bike! In the year before I was diagnosed I was working to perfect my technique! But I can no longer do them because I have three seriously rotted vertebrae.
Whether a small lesion on the surface of the bone will impair the structural strength of the bone is the question I can't answer. Speaking though as a lay person, my sense is that what seems like your high level of commitment and dedication to serious resistance training can only help strengthen the skeleton!
As I mentioned on one of my earlier posts today I myself have searched for an answer to your question. I wanted to know about my own movement-related fracture risk. Is there a domain of knowledge or a type of specialist who could exactly answer this question? I think there are a lot of people who would like to better understand their own fracture risk in circumstances of bone metastases.
I don't have the academic reference to hand, but unfortunately what I learned is that nobody is actually doing systematic scientific research on biomechanical analysis of a fracture risk in the PCa disease-, PCa therapy- and PCa radiation-driven situations that you and I are talking about. I imagine there are knowledgeable physiologists who could help on an experiential basis. It was also recently suggested to me by a friend that osteoporosis service groups in fact might be a source of knowledge in this area - I haven't checked them out yet. In my case the only advice I've had so far is "don't twist". (The term "biomechanical analysis" was an actual term in a paper I read on the topic of fracture risk in the circumstances of bone metastases; this was the paper that said that no one is doing this on a scientific basis, despite the importance of the topic.)
By the way, just plain exercise, in the context of prostate cancer and ADT therapy especially, has been hard to figure out. I have even participated in a couple of programs specifically for people with metastatic prostate cancer. They were helpful except I was surprised when I learned that my coach had no idea that I had zero testosterone. I thought that might be relevant in the circumstances. Relevant as in the challenge of maintaining muscle mass in circumstances of zero testosterone and zero estrogen and in the fight against sarcopenia.
I have now learned to balance aerobic and resistance exercise. I have learned that I need to eat more protein. And I have learned (the hard way) about the importance of not overtraining and about recovery. And I have also learned about the astonishing importance of Zone 2 exercise and even Zone 1 exercise and metabolic fitness as the foundation for all kinds of fitness and even general health.
Of course "learn about" is not the same thing as putting into practice. I have been pursuing exercise very vigorously because of what I learned about the anti-cancer properties of myokines. Myokines are substances produced by the body as beneficial byproducts of exercise. The amount of myokines produced are dependent on exercise volume and intensity. (Fortunately the topic of myokines and other exercise byproducts on cancer is now the subject of a lot of good research.)
Now I have a problem though - long-term fitness starts with Zone 2 and not killing yourself by over-exercising. But it's hard to square this approach with a program of intense anti-cancer exercise!
There's a whole world here to figure out which is "the best exercise for men with metastatic prostate cancer who can still exercise". I can boil the problem down to the contradiction between the hazards of overtraining and the need for exercise volume and intensity for anti-cancer effect. This could be a huge opportunity, a real opportunity, for some entrepreneur, business or voluntary association.
Your question was very inspiring today. I hope these notes in response are helpful for someone. Or maybe triggers new interesting discussions.
Stimulated by your effort in responding, I found one reference to an SBRT-caused fracture:"One patient sustained a pathological rib fracture at the site of SBRT (24 Gy in 2 fractions)".
That was a single and the only fracture in 42 oligometastatic patients with SBRT followed over a median of five years. Based on that and my passion for resistance training, I will continue with my deadlifts until failure. I reason that if I keep fit the risk of fracture may be less than 1 in 42, although I will keep a check on the SUVs in my coming results from scans.
ro-journal.biomedcentral.co...
Long-term outcomes of SBRT for PSMA PET detected oligometastatic prostate cancer
Fantastic comment Purple-Bike! Oddly I have had no surgery or radiation - because it was too late to do any good! 😂 But your point about fracture risk and radiation is very important.
So I just added radiation to the list of causes of fracture risk in my original comment above (which overall has been substantially re-edited):
"fracture risk in PCa disease-, PCa therapy- and PCa radiation-driven situations"
Thanks!
Only my 2nd time posting - I had Cyberknife radiation Dec 2021 on t-10 spine and over last few months had increased pain in my thoracic area - had CT- MRI and discovered I did have a fractured vertebrae due to combo of radiation and tumor weakening that area I just had a vertebroplasty procedure a week ago in Boston , they inject cement and stabilize that vertebrae - it all went smooth now I have muscle soreness hoping that will go away in next few weeks So you need to be very careful with lifting etc.
Did they tell you "don't twist"? 😃 Thanks for sharing Plankman. It's posts like this that help me worry less about what might happen if in fact I fracture one of my vertebrae.
By the way I presume you're into exercise and that you are an advocate of planks? Go planks!
Thanks for sharing Plankman. Not really sure how to proceed exercise wise as I'm in good shape for now at 64 yrs old. The MRI set me back a bit mentally as 6 spine Mets was a lil overwhelming to come to grips with as I fear being stuck in a wheelchair or bedridden..I haven't really got any direction from my Physicians as far as what to do or not to do to protect my back.I guess my 15 minute office visit isn't enough time to go into any detail. Thx again
I have had reoccurring spinal mets and have Osteopenia. Haven't changed my workout in any way. Doctor is not concerned at this time saying benefits outweigh the possible negatives at this time. Everyone is different
Thank you Mr. Scruffy for your reply.. If not too much trouble could you elaborate on your work out routine?
Workout 6 days a week. 4days lifting heavy and 2 days cardio. My trainer has me doing 3 to 4 sets to not put so much strain on my body. I do what is called a "bro workout" which equates to one day of all arms, all back, all legs etc. Never had any kind of injury. I was lucky to have trainer familiar with my condition as most dont have experience with this
Would you be kind enough to tell us your age?
Good Luck, Good Health and Good Humor.
j-o-h-n
I'm 64 J-o-h-n if that was directed to me.
It was, Thank you for your response..... You may wish to add that to your bio.....Well You'll make it to 94......and be just as tired as us old folks....
Good Luck, Good Health and Good Humor.
j-o-h-n
FYI- Hope for the best. Everyone's response to treatment is different. I think most respond to treatment- some not well- some well- and some very well. I believe I have been fortunate and am one of those who responded well/very well. I only had about 4-5 Mets when diagnosed 11+ yrs ago but 2 were in my vertebrae. Those 2 Mets have not gotten worse and haven’t yet caused me either pain or impairment, beyond perhaps, some limitations on flexibility. I play Pickleball, tennis, golf and ski without my vertebrae bothering me. Wishing you a good response to treatment. And- since triplet therapy was not known to be the way to go when I began treatment, hopefully your response will be better than mine. It does appear as though my ADT treatment (Lupron and Zytiga) is becoming less effective and I will have to add something or change treatment in 3-6 months, I hope the next treatment will afford me some additional “good” yrs of life without pain in my vertebrae.
Good luck.
I see your just getting started here. I have been through quite a bit of treatment already, also recurrence. On recurrence PSMA Pet found 5 spots of uptake (no SUV given) on C!, C2, T5 and T6 and my Ro thought he found a LN as well. He was going to radiate but decided against it. MY RO said one was too close to the esophagus to give it the right gy. I guess it was a all or nothing deal. So I went back on ADT. Recent CT/bone scan about 1 year after my PET showed some conflicting info on by T6. My MO says it would appear to be a healed lesion. My RO seems more adept at reading scans so I will see him tomorrow and get his opinion. MY PSA is undetectable . I have continued to exercise the same way since my dx in 2019. I will continue as long as I am able, risk or no risk. My preference is biking and that includes road, gravel and mtn biking. I am planning a long trip with rides in different parts of the western mtn states in May, post retirement. I am a bit younger than you and will be 61 at the time. That is of course if all goes as planned. I have asked my MO and RO about what I can and can't do physically and have always been given the same answer. "do whatever you would if you didn't have cancer. These mets are not something to change your activity level."
So I can't tell you what you should do and my opinion is not worth much but this is where I am at, hope it helps.
Does the bike riding affect your PSA at all? My Husband has to have blood work every month for his PSA and in the past we were told bike riding will effect his PSA blood work. Just wondering how others deal with this? Is it only a few days before the blood is drawn? Thanks
I have read that as well as most of the other things that are supposed to effect it. It has not been my experience that it has effected my PSA and that includes up to a 50 mile ride the day before my blood draw.
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