Symptoms of beginning met to bones

[yope4]

Please share your experiences if you started out with detectable PSA after treatment with no bone met. And thereafter sometime, you have bone mets. Did you notice pain on the bone intermittently at first and was it continuous? And to what degree? I have no bone lesions on my last scans but now beginning to feel intermittent pain. I don't want to associate it to PCa but I'm also trying to be sensitive to my body so as to alert my onc early enough. I pray the pain is from something else.

[George79]

Was diagnosed with bone mets about a month ago, Put on zytiga. No bone pain at all so far.

[Hidden in reply to George79]

After 14 years since diagnosis, my PSA is detectable at a range between 12 and 17. But body scans show no sign of bone mets. Having recently passed the point of androgen independence and am now classified as non-mestastatic CRPC, I am taking ketoconzazole 400 mg 3 tid. Some have suggested that maybe I have oligometastases and the only way to find out is to get the most advanced imaging technique. I have mixed feelings about that. One part of me says I don't want to know if I am metastatic, oligo or not. Having read the horror stories on Xrtandi and Zytiga, I am not even sure I want to take that step and might just let nature take its course when the inevitable time comes. But I am fortunate that I have no bone pain, will be 78 in January and enjoying good quality and active life. I attribute my good fortune to my choice of primary treatment in 2002 which at that time people, including most doctors, knew nothing about. Fortunately for those who came after me, the treatment protocol has become the new rage and it is now available everywhere.

[Hidden in reply to Hidden]

What was the treatment in 2002?

[Hidden in reply to Hidden]

Proton beam at Loma Linda Medical Center, California.

[chascri]

My first met was detected on my left 10th rib by ct scan in 2006 seven years after my radical prostatectomy. By 2008 it spread to my 10th thoracic vertebrae. My first pain was a mild dull aching intermittently in the area. It gradually increased in frequency and level over 4 years. When it bothered me I took naproxen sodium (aleve) to relieve the pain. This worked well until 2012 when I experienced my first serious cancer pain episode lasting about a week and requiring Hydromorphone for relief. Since then my mets have spread to my 7th to 11th thoracic vertebrae, multiple ribs, my left femur and my sternum. The pain is pretty much continuous now , kept tolerable (2 or 3 on a scale of 10) most of the time by naproxen sodium and requiring Hydromorphone for serious cancer pain (above 7 on a scale of 10) episodes of which have become more frequent gradually since 2012. I hope this is helpful. Details of my progress and treatments since diagnosis 17 years ago are in my profile. Good luck and may the force be with you.

[Hidden in reply to chascri]

Thanks for your description o bone pain intensity and progression. I have small pains, discomforts really, and also have bone mets, but don't know if the two are related, so I just worry, low level.

[BigRich in reply to chascri]

What ADT or chemo drugs are you taking?

[chascri in reply to BigRich]

PROSTATE CANCER TREATMENTS:

1999 PSA 2.7, Radical Prostatectomy, staged, T2a N0M0, Gleason 8 (4+4), Age 55

2006 PSA .4, 7 weeks external beam radiation of the prostate bed plus Casodex and Lupron

2008 PSA 1.0, to 2011 Intermittent (9 months on, 9 Months off) Lupron Androgen Deprivation Therapy

2011 PSA 3.5, to date Continuous (injections every 6 months) Eligard Androgen Deprivation Therapy

2012 PSA 1.7, -2013 PSA 1.8, Two Xgeva injections, then stopped Xgeva

2013 PSA 3.2, 10 days Palliative Radiation of Mets T7 thru T10 Vertebrae and left 10th rib, PSA .2

2014 PSA 1.29, 3 Provenge (Sipuleucel-T) infusions, PSA 1.8

2016 PSA 9.1, 15 days External Beam Palliative Radiation Tumor on left femoral head, PSA 1.0

2016 PSA 1.1, Xofigo (Radium 223) infusions, PSA .71

2016 PSA 1.15 Resumed Xgeva injections

[BigRich in reply to chascri]

What ADT or chemo drugs are you taking?

Rich

[Hidden]

Hi

I also have my complete cancer history and treatments in my profile on this site.

I did notice intermittent pain in some areas prior to mets showing on scans. This went on for a couple of years. You may want to see if a Na F-18 bone scan is available to you. I never had one but my understanding is that it is more sensitive so a smaller met my show up.

I was able to keep the pain manageable with Aleve at first but went to a more powerful version later.

I hope your pain is from something else also.

Good Luck

Bill Manning

[Hidden in reply to Hidden]

So you had an intermittent pain, and later a met showed up there on an image. Good to know.

[charmander]

yoepe4, great question!! I have 4 mets in my hip and pelvic areas and 1 on my lower spine. I too am wondering about what the pain will be like. Each ache and pain that I experience I am sure is the met pain starting. Mostly its just my 58yo body responding to my activities.

I am now at a stage where I do not worry about the impending future, or at least not as much. It will come when it comes and I am working hard to enjoy each day and make my time count!! Yet the responses to your question have helped me to understand the unknown a bit better.

[Charlean]

Harley didn't really have pain when his mets were first discovered. After doing brachytherapy at UCSF, they did a Pet scan...Na F-18 scan because the Dr said it would show mets before an xray would. Several mets were discovered in the spine, rib, hip and sacrum..but we were surprised. Pain didn't occur for awhile after the scan. But the Dr did tell us sometimes pain occurs early and sometimes it doesn't. The real way to find out is to have some kind of test but we were always very concerned about how many test, scans, xrays were ordered because they pose their own threats of cancer.

Charlean

[MrJack]

I have been fighting PC for five going on six years, I had metastasis to my lymph nodes, doctor kept asking me every visit, do you feel pain, no I don't, then one day all of a sudden my chest hurts, I thought I pulled a muscle or strained a ligament , but now it turns out that that pain is bone mets on my spine and ribs it is constant pain and gets severe when I move

so it came on suddenly, and now I have to take pain meds every day,

I start chemo this week , I am hoping chemo will shrink tumors, but I don't know.

thanks,

good luck

jack

[pjoshea13]

I never had pain, or any indication of a bone met at L5. It would probably have fractured before I became aware of it.

On the other hand, I get all sorts of intermittent pains in various places. If something shows on my next scan, I'll be disappointed, but meanwhile, I don't worry about it.

-Patrick

[BigRich in reply to pjoshea13]

It is difficult to compartmentalize life, but you have to do it to enjoy life.

Rich

[afab]

Two bone mets, left and right femurs, in 3/2014. No pain. Undetectable PSA since 12/2015. On Lupron and Xtandi. Mets shrunk by 40%.

[George71 in reply to afab]

I see where Dr. Kwon said to radiate the mets while you have them beat done and possibly cure you. look for his view on youtube

[yope4]

Thank you for your responses. They helped me understand more what this disease is. My last scans were 2 years ago and have not felt these pains until now. I'm cognizant of the change but hoping is due to something else. When I started Lupron 15 months ago, my PSA dropped to .02 after 3 months and to undetectable thereafter, where it has stayed since my last exam in July. I'm so hoping my October visit will be good. But because of my pain, I'll alert my onc if I need to see him earlier. I'll mention the F-18 scan. In the meantime, I will your advice to not worry about it and just continue to stay active and enjoy each glorious day. Thanks so much.

[kikepana]

I have positive biopsy for prostate cancer on april 2013 (age 61), PSA 4.6 with Gleason score 8 (4+4) involving right and left lobes.

Bone imaging whole body with contrast and pet scan for cancer negative results. Radical prostatectomy august 2013, PSA 11.0.

Right after the surgery start severe pain on the coccyx. Another PET/CT TUMOR Study on JAN 23, 2014, findings foci of mild to moderate

increased tracer concentration, localize on the right side of the sacrococcyx. The rest of the body scintigram is unremarkable.

PSA start increasing from 0.6 to 2.4,on March 11, 2014 start Radiotherapy Treatment ( Prostatic Bed, Seminal Vesicles,Suspicious Coxyx lesion,

and Pelvic LN ) total 43 (after the Rad. treatment no more pain on the Coccyx). PSA still increase 6.5. Another Bone imaging whole body with contrast on JUL 29, 2014, Report: Skeletal scintigram performed in the anterior and posterior projections with SPECT views of the pelvis demonstrates foci of severe increased tracer concentration involving the posterior aspect of the right iliac wing, the mid sacroiliac joint, the lower sacrum, the upper left sacral wing and left ischium. Impression: Osteoblastic bone lesions as described above compatible with metastatic disease. Since then on hormone therapy injections (ADT) (eligard 7.5 mg). Up to now doing good.

[George71 in reply to kikepana]

Hi Kikepana,

I have a similar history. Gleason 4+4 PSA 8.1 Radical Pros. 4/16 rising PSA 0.6 going for F-18 scan pain on outer side of right femur - not sure if cancer or not. have you considered adding Zitega to ADT after seeing the Stampede trial. Also radiation to the mets is proving to be curative -- there are several articles just published on that. And SM - 88 it is showing great results.

[kikepana in reply to George71]

Hi George71

Yes considering add Zytiga combination with prednisone. Due to my PSA in the last six months have been raising from 0.05 to 1.76. Have app. With the oncology on November. Let see oncology opinion.

[Don1157]

6 years following radiation and ADT, PSA was low, then increased to 8. Then then bone scan revealed a met in a rib. Felt nothing, until I started thinking about it. So the only clear indication was the rising PSA level. Started back on ADT and PSA went down to .09 in two months. Now going to see how long this lasts. Will be getting another bone scan soon to see if it has changed at all.

[Hidden]

They found mets on my hip and spine last Nov., funny that no one told me about them. Absolutely true, I found out reading my records. That said, I've had no pain whatsoever. Had some cervical pain which was arthritis. For reference, I'm about seven years on Lupron, now with Zytiga added. Were all different, but so far, I've been real lucky with excess pain. CBD helps too. Joe

[TommyTV]

It was the Mets that led to my diagnosis. No bladder issues, just a PSA over 600. Sciatic pain from nerve compression on pelvic met. Aching legs, from femur mets, sore scalp from skull met, slight rib pain from rib mets, aching shoulder from shoulder met.

All this was 5 years ago. PSA dropped to less than 0.1 within 4 weeks, it's stayed there ever since.

I'm on the Stampede trial in the UK. Zoladex plus Abiraterone plus prednisone.

Suffer controllable pain scale of 1 - 2, usually later in the day. Occasional pain of 5 if I sit too long on a hard surface on the pelvic met. Rib pain of 4 - 5 if I do something repetitive leaning over. Legs a nuisance at night so strong pain killer last thing to help sleep.

Disabled now in my legs due to progressive muscle wastage from medication and no testosterone to build muscle, but so what. I'm alive, still work a little and enjoy life. Considering they thought I wouldn't live past 6 months I'm a very lucky man.

All this treatment is free in the UK, out NHS is a wonderful thing.

Good luck all!

Cheers

Martin

[RonL]

After I became castrate resistant 6 months ago a scan revealed bone mets, to this day I've been symptom free.

[Shepard]

Bone mets in rib (5 cm) and pelvis were detected in early 2018 going into year eight of cancer. Rib pain was severe when coughing and reaching upward with arms. Xofigo was recommended for pain relief, but after several consults I was left with confusion about the benefits for a tumor as large as mine. Also the Doctor was unclear as to my financial responsibility. Left with a feeling that probably this doctor would benefit more than I. Meanwhile, my lead Doctor prescribed Xtandi which I began 1 July 2018. Now 4 October 2018, the pain in my ribs is negligible and not present with a cough. I never felt any pain in the pelvic area. Pleasing to me is that PSA has fallen from 165 down to 34. I work every day on my ranch. I feel like the calendar has been turned back several years. I have lost 20 pounds, but on the down side I deal with some swelling in my feet. I take Xtandi one hour before dinner in the evening and from that time until the next morning I would not trust myself to any serious decision making. By 10 am, I am good to go. I am looking forward to meeting with my lead Doctor October 15 to gain better understanding of where I am now. Expect there will be a bone scan coming and another plea for Xofigo consideration. I hope you find relief from that pain. Peace.

[Shepard]

Bone mets were detected by scan in Fall of 2017. I had mild pain in ribs at that time, but none in the pelvis. Completed Provenge treatment in November 2017. PSA rose to 166 not long after. Replaced Bicalutamide with Xtandi with added monthly Xgeva shots July 2018. By September rib pain was pretty much gone. Prior to that time coughing and laughing were very painful. No pain meds except for an occasional Alleve, mostly kept busy and "toughed it out." Now, 123018 and just had 80th birthday, I have very little pain. Bone density measures are better and I have good energy. Mets on lymph nodes have shrunk some so I am now candidate for Xofigo. May do that this Spring. PSA in December 2018 was 28. Don't know which was driver to turn me around, but I am very pleased to be able to put in a full day on the ranch again. Hope you have a healing path.