Bone Mets

[taylor123]

How long have you had bone mets? And how have you treated / resolved them?

[Magnus1964]

My bone met was treated with salvage radiation. See my person chat message to you.

[Fairwind]

How many bone mets ? Just a few, maybe SBRT. (Cyberknife) More than a few, R-223. Your insurance company my have something to say about it..At the beginning, ADT works pretty good..

[Hidden]

Had Mets to T3 and L2 In May 2004, and immediately took an injection of Luoron and six weeks later, underwent six months of chemotherapy. All Mets resolved with new bone growth.

GD

[taylor123 in reply to Hidden]

Pretty amazing.

Have you ever met anybody else who has approached their PCa the same as you and achieved the same remarkable outcome?

Or are you a complete outlier? Ha.

[Hidden in reply to taylor123]

Taylor, there were nine in the trial with complete responses. There answer is yes, however, there are others that I know that only had partial responses. One is in this group and he is still undergoing treatment. As near as I can tell, those who did well all had something in common ..... all followed the protocol with no shortcuts and treated very early when Mets were diagnosed. For example, after my primary treatment, I had monthly blood draws and quarterly scans and know precisely when Mets appeared. Or, I truly have an Angel on my shoulder caring for me as my job on this Earth is not done. Admittedly, my treatment, although with FDA drugs, is not standard...... but that is why it was in a clinical trial.

Yesterday’s PSA was undetectable and hsT, 198.

Some say that it is antidotal. Yet, my cousin diagnosed with metastatic breast cancer underwent a trial where she was given the same two infusion drugs after surgery. Radiation is next for her. Interesting is that she is also in a clinical trial with a researcher at the same medical school which I started with in 2004. Someone still believes that the Red Devil and Taxol combination holds a key......

GD

[Schwah]

3 bone mets. Hit it hard.

1. Lupron

2. Zytega

3. SBRT to all three mets

4. Four rounds of Chemo

5. Zometa and Celebrex

6. Metformin.

Just started a vacation after 21 months and over a year at .02 or less

[mcp1941 in reply to Schwah]

5. Zometa and celebrex? Did you suggest adding Celebrex or your MO. I will be starting Zometa soon for treatment of Multiple Myeloma. No mention was made of adding celebrex. I will bring it up at next meeting. I am also on Eligard now with the likely addition of Zytiga in the near future. In my 23 years fighting PCa I have been on HT 3 times for a total of about 4 years.

[Schwah in reply to mcp1941]

The combination of Celebrex and Zometa (tho neither alone) was shown in clinical trials to reduce PC deaths in advanced PC patients 22%

[mcp1941 in reply to Schwah]

Thank you for your reply. Just one question: Did your MO order the celebrex on his own or did you suggest it?

[Schwah in reply to mcp1941]

Good question. I showed him the study mdedge.com/oncologypractice...

He said he had not seen it and would start that with a number of his patients. A good MO will not have the ego to prevent him from learning something new

[mcp1941 in reply to Schwah]

Unfortunately my MO is strictly SOC.

[2dee]

At Dx my body scan showed mets as "too many to count", apparently I lit up like a heavily decorated Xmas tree.

Extreme pain for 3 mos and lost 55 lbs.

Started Alkaline Therapy cycles immediately aftere Dx and dropped PSA from 1300+ down to 362 in 12 days. Started Bicalumide and then Lupron ADT. I have to believe that all three treatments had some effect on the mets, reduced pain after a couple of months indicates that the mets are healing, my Alkaline Phosphotase numbers down indicating mets not growing and likely in some remission, and PSA down below 2 since Sep 2018.

Mostly good right now. If pain and PSA ramps up again then another bone scan to judge what next?

2Dee

[Mohopes in reply to 2dee]

Could you PM me and explain what alkaline therapy is? Thanks.

[RJ-MN]

I have had sacral & rib bone mets since 2010; NaFl PET Scans indicate skull & sinuses also, but they are discounted. Since I had undergone IMRT Salvage Radiation to the pelvic floor in 2009 (radical retropubic prostatectomy 10/06), the first treatment was beginning a combined ADT (bicalutamide + Lupron) in 2010. Towards the end of 2010 I stopped bicalutamide and had an almost two-year "bicalutamide withdrawal response" (!) which was then followed by Sipuleucel-T immunotherapy in 2013. In May 2014 I began a clinical trial at the NIH that provided me with both Enzalutamide and ProstVac-Tricom immunotherapy; I am still on this trial although there has been significant progression and I will soon be off. I have also had 4 different series of denosumab injections throughout this timeframe. I assume abiraterone + prednisone will be next as that is Mayo's automatic Standard of Care.

[taylor123 in reply to RJ-MN]

Hey there,

Did they treat the bone mets with external radiation? Or were there too many for this?

Have you considered Lu177 also?

So the Mayo do allow the use of Abiraterone after Enzalutamide?

[RJ-MN in reply to taylor123]

Hi, Taylor. No external radiation offered to mets (yet) ... possibly because I had a "lifetime's" amount to prostate bed in 2009 and have had little pain (so far), so palliative radiation has not come into effect. I am interested in Lu177, but I've not yet had docetaxel and available clinical trials seem to require this. My local onc has told me abiraterone would be Mayo's next step on their Protocol; I'll know in Sept. if I am dropped from my NIH clinical trial in late August.

[leo2634]

17 months multiple Mets throughout my whole body..ADT,Zytiga, Xgeva seems to be working for now. My last MRI and bone scans show significant improvement and pain is all but gone.

[Cheerr in reply to leo2634]

Did the MO choose Zytiga over Chemo? And how soon did you start Zytiga after ADT?

[leo2634 in reply to Cheerr]

Been on ADT and Zytiga since first month only other treatment has been Provenge . I did three infusions last month but that was just an added precautionary measure by my Doctor. Never had chemo or radiation.

[larry_dammit]

35 months and counting, last scan was 1 July. Mets not getting any bigger but not shrinking either. I was disappointed but the doctor was happy. Will continue my monthly blood work and shots . 🙏🙏🙏🙏

[JimVanHorn]

I have metastases on my hip bones and it has been 7 years. I was on Lupron for 6 1/2 years and my T count was 11. My oncologist believes that the single cells leave the prostate and attach to the bone. They attach and sit there for a while. Then for some reason they sink into the bone. As long as there are very few androgens (from ADT) they can not multiply. So they are stuck there, where they eventually die off. A normal cell dies every 6 years or so. They weaken the bone so I had Xgeva injections (osteoporosis drug). It has been a year now since I have had Lupron and my T is 24, my PSA is 0.06 . I also have had 72 radiations in the last eleven years. There are no guarantees with this disease so I wish you well and success! Above everything else remember to just keep truckin'.

[taylor123 in reply to JimVanHorn]

Hi Jim, really happy things going well for you.

So did you have external radiation despite having multiple mets?

[JimVanHorn in reply to taylor123]

I had 30 radiations when they found bone mets on my hip bones. That was in 2011. So I may still have cancer cells inside my bones, but they can not multiply with my low T count. I will not take medicine to increase my testosterone, I will let it come back on it's own over many years. I have a PSA every 6 months, so if that goes up again I will start some type of therapy again.

[JimVanHorn in reply to JimVanHorn]

Did you know that PCa patients have maybe a thousand single cancer cells leave the prostate gland every day? Almost all of these cells die when they enter the blood stream. These cells are not healthy and are not ready for circulation (they are mutations). Sometimes T-cells will kill them, if they are seen as not from your body. Sometimes they just fall apart. These cells have an affinity for bone tissue and lymph nodes. When you have a "tumor" you have a mass of thousands of cells that have sub-divided over a long period of time. Radiation can help reduce tumors. Many of these cells are not able to sub-divide, because they are mutant. So staying healthy and keeping a good immune system is very helpful in killing off these circulating cells. I hope this helps you feel better about "metastatic prostate cancer" and not think of it as something to live in fear and worry about. Understanding PCa takes away the fear, yet it still is a horrible disease. Thanks for your reply.

[Racybud in reply to JimVanHorn]

That s a great way to explain things. Thanks so much

[jfoesq]

I was diagnosed 7 yrs ago with PSA in the 40s and rising quickly, Gleason 9 and 3-4 bone mets. I started treatment at MSKCC with Degaralix, which caused a reaction (liver?), so I switched to. Lupron. I had my prostate removed, along with 34 lymph nodes, 5 months after diagnosis, which was a radical idea at the time, but is being done by some other docs now. I was then treated on an INTERMITTENT basis with both Lupron and Zytiga (along with Prednisone). I went on and off these meds for approximately 5 yrs and then was placed on ONLY Lupron and on a CONTINUOUS basis. I also had radiation of the largest tumor, which was in my pelvis area 2-3 yrs after treatment began. Thankfully, I have always responded well to the treatments I have received. I still have mets, but I believe the scans I have had over the yrs. have indicated a bit of "healing" sometimes and now growth. The mets have never caused me pain-although I do have some tightness where the verterbre have mets, and mild pain when I bend down in an effort to stretch out my back and touch my toes, but this could be do too a bad back which resulted in back surgery 2 yrs ago- not sure.

[taylor123 in reply to jfoesq]

Hey there, thanks for the post.

So are you on anything now?

Did you become resistant to Zytiga?

[jfoesq in reply to taylor123]

I take Lupron now on a continuous basis. I did NOT become resistant to Zytiga. My doctor thinks the evidence isn't clear on whether I should be taking Zytiga now, since the study(s) involving its use along with ADT, involved patients with 4 or more mets

(she counts me as having 3) AND the study didn't involve a comparison group of patients who received Zytiga AFTER ADT failed. So- while I believe the study established patients with 4 or more mets lasted longer before the meds failed compared to those receiving ONLY ADT, it failed to see what happened to the latter group if AFTER ADT failed, they were placed on Zytiga. That's my understanding. In addition, all of these meds have various side effects and potential side effects, so she (and, her colleague, who was my previous doc) thinks it better to stay off the Zytiga for now. Having said all of that, she would be willing to put me back on Zytiga if I chose to do so without a strong objection. So- the science doesn't seem to be clear on this issue as it pertains to ME, and I will follow her (and my previous docs) recommendation. My previous doc at MSKCC in NYC was not only a leader in the field, but I believe heavily involved in the original studies of the use of Zytiga and my present doc is also at MSKCC doing research in the field.

[Break60]

See my profile

[Garbonzeaux]

Had 4 bone mets at Dx 25 months ago. Lupron continuously, 6 rounds of

taxotere ending about 1.5 yrs ago. Bone scans every 6 months have shown

continued improvement. Had one yesterday and will talk to MO about it today, but to me the image looked clean.

[Patrick-Turner]

I had 4 x Lu177 infusions after 5 x Docetaxel infusions failed. I had more mets in soft tissues and bones than could be counted.

But after the Lu177, Psa dropped from 25 to 1.6, and last PsMa Ga68 PET/CT scan showed no soft tissue mets and showed bone mets trying to heal up. So far so good.

Nobody said I had mets that appeared in CT scan that were not in PET part of scan, so I'm lucky that I may not have too much mutation of my cancer type.

It may come back, but docs think that if Psa still keeps going down I am OK

Response to first 2 Lu177 was mainly in soft tissues, not bones, but then after last two the effect of Lu177 in bones began seems to have been good.

All my bone pains from Pca have gone, and stayed gone.

I might be one of the lucky ones.

I'm 72, and I live in Canberra, Australia, and I got my Lu177 in Sydney from Theranostics Australia, for about usd $27,000.

I had to have PsMa scan before I began and one after second Lu177 shots, and another after fourth shot, usd$1,500 total.

Lots of research and Pca trials going on in Oz at PeterMac in Melbourne, St Vincent's in Sydney, Alexandra in Brisbane.

During my Lu177 treatment I met men who had flown over from US to get the Lu177 in Sydney.

Patrick Turner.

[taylor123 in reply to Patrick-Turner]

Thanks Patrick.

When did you have Lu177 treatment ?

[Patrick-Turner in reply to taylor123]

First shot was 4 Nov 2018, then 8 weeks between shots so last one was May this year.

Time will tell how good it all worked, and I'll have another PsMa Ga68 scan to see if there are any areas with high uptake of the Ga68. But if the areas are all very much lower than last scan it means not much use getting more Lu177, or Ac225, which the doc said could be used, and it would mean Pca has continued to die off because it is not able to re-generate.

I could not see much else that was likely to do any good after Docetaxel failed.

Patrick Turner.

[GoBucks]

After RALP in July 2017 a scan in October found multiple bone mets. Started Lupron in November, Zytiga in December and have been <0.01 ever since. G9.