Pain moving from one affected area to another

[Cubano]

First: Happy New Year to the group, wishing the best for everybody.

I have prostate cancer with metastases to the bones. Right now I am part of a clinical trial for an antibody (TTX-030-001) by Tizona. After six months in the trial my PSA went up from 6 to 41. I do not have new lesions, but an increased activity of the cancer in the already existing lesions and more pain in the affected bones. It is curious that the bone pain moves from one area to another: from a femur to the right ribs, them from the right ribs to the left ones or the lower back. Is this pain pattern common to bone cancer or is this specific to my case and the trial medicine?. The doctor said that they do not look for the PSA, but new lesions and wellbeing. I really do not know what to do, continue in the trial or no. I do not want to allow the cancer to spread to my internal organs, but on the other hand if I leave the trial I might lose an opportunity. I am open to opinions. Thanks

[AlanMeyer]

Hello Cubano,

There are some treatments for cancer in the bones. One that particularly comes to mind here is Xofigo. It's an injectible solution containing Radium-223, a radioactive isotope that is attracted to places in the body that are absorbing calcium, i.e., growing (in this case growing because of bone tumors) bone. It looks like a good treatment for you because it's systemic. Unlike external beam radiation that has to be focused on a specific spot, this will treat cancer in the bones wherever it occurs. For patients whose metastases are mostly in bones rather than soft tissue, Xofigo can extend life as well as reduce pain.

Xgeva is another treatment that may be useful - though it is my understanding that it's mainly used to reduce future damage to bones rather than to reduce the cancer burden. I wouldn't expect it to be as effective for you as Xofigo - though you'll need someone way above my level of knowledge to give you an expert opinion.

As for the clinical trial, I'm a big believer in trials. However it looks to me like the treatment has clearly failed for you. If the doctor tells you not to get Xofigo because it will interfere with the trial research goals, I think I'd drop out of the trial.

I wish you the best of luck with this.

Alan

[Cubano in reply to AlanMeyer]

Thank you. I already dropped the trial. My PSA went up considerably in three weeks. I am taking Xgeva every four weeks and you right, this is to strengthen the bones, not to reduce cancer burden.

[2dee]

I can say that in my case prior to Dx and for a month or so after I experienced the random extreme pain jumping around every few days.

I'm just on ADT Lupron and my own Alkaline Therapy since which reduced PSA from over 1300 to <3 and pain reduced and stopped jumping around.

Dx body scan showed skeleton lit up like a densely lit Xmas tree with "too many lesions to count". It seemed obvious that was the cause of the pain expressing as each site fought for resources to extend its voracious growth.

2Dee

[Tall_Allen]

It sounds like the treatment has failed - what is the failure criterion for the trial? I think you might discuss a single SBRT treatment to those 4 sites to get rid of the pain. There are possibly other medicines you haven't tried yet - Xofigo, Chemo, Advanced hormonals? Immunotherapies (except Provenge) for prostate cancer have so far been disappointing.

[Cubano in reply to Tall_Allen]

Initially I had radiation to the prostate. A year and a half after I started complaining about back pain. The bone scan showed metastasis to the bones: spine, ribs and left femur. The CT showed my prostate was clean. I got docetaxel (that did not work). I switched to Zytiga. It worked for about 14 months, when the PSA started rising from 0.4 to 6.0. This was the time I entered into the clinical trial. I also on lupron every three months.

[j-o-h-n]

Cuba Libre... Would you be kind enough to fill us in with information about yourself.

Age? Location? Treatment center(s)? Doctor's name(s)? All info is voluntary but it helps us help you and helps us too. If you do post this info please do so on a future post and not directed to me. You may want to add this info to your home page under your user ID..

Thank you...

Good Luck, Good Health and Good Humor.

J-o-h-n Tuesday 12/31/2019 6:05 PM EST