Pain and Xgeva

[SUPERHEAT12]

On Xgeva for bone mets since February. Have constant low grade pain in trunk area and random pain in other areas. At times, pain spikes enough to wake me up at night. Seems like muscle pain. Quit lifting weights and golf for a while to see if that was the problem and it actually got worse.

PSA undetectable. Gleason 9 (5&4). Long term remission with Doc Myers. Now bone mets throughout skeleton.

Does this sound normal? Anyone try Life extension HMB for muscle mass. I thought that might help.

Superheat 12

[leach234]

I have same pain although mine doesn't spike at night. Prostate removed in April. PSA 0.02 as if last test in July. No bone mets and clean CAT scan before surgery. Feels like pulled back muscle, sore lower back, and random low grade trunk pain that comes and goes. I have noticed that the position I sleep in affects the pain. Try sleeping on your back or fully on your side. No in between. Try not to toss and turn at night. See if that helps.

[leswell]

Hello on Wednesday, SUPERHEAT12. As former LEF members, we will take a look at HMB. Let us all know what you decide about that. My husband’s third bone scan a week ago revealed much progression of bone mets. His GS was also 9, but he’s a “fur piece” from undetectable. We take your warning about Xgeva seriously as we must make a decision about beginning it immediately. Yesterday, we discussed with our MO whether or not to have a first injection at our urologist/PC specialist’s office day after tomorrow. We had pretty much reluctantly decided to reject it, not only because of the significant risk of ONJ, as described above by Patrick, but also due to concern about the quality of the remaining days of Leswell’s life. He is still feeling well and has no pain other than when bending. We do fear skeletal related events that may occur without Xgeva. Catch 22.

This is one example of a warning we read on our APC site which I brought to our MO:

“Had an Xgeva injection for Hypercalcemia of Malignancy I have Lung cancer w/ mets to bone. Two hours after the injection, I experienced the worst pain ever in my life! I walked into the infusion area without any body pain, just a very slight back ache which advil was helping, and 2 hours later I was crippled. It's 2 weeks now & I'm either in a wheelchair or walking around the house with a cane. Horrible, horrible medication. I now take oxycontine every 12 hours and oxycodone every 3 hours. Refuse this drug if you are smart. Even my oncologist is "surprised" by the side effects I have. I refuse to have a second injection of Xgeva.” (Sorry to somebody not to have the attribution.)

And now here is an Xgeva rave review from dlb823:

August 1, 2016 “I’m another one who really dragged my heels on starting Xgeva, which had been recommended for me for more than a year while I underwent some dental stuff--a couple of extractions,and then trying to save a slightly loose tooth. My UCLA onc finally sent me to an Xgeva expert @ UCLA. She did a pretty extensive work up including a jaw CT, extracted the questionable tooth, and eventually cleared me for Xgeva, which greatly eased my mind re. the risk of ONJ. So I’ve been on it for 5 mos. now (about to get #6), and I absolutely love it. No issues, except greatly reduced bone pain and I can stand up much straighter than I’d been able to for many months. My UCLA onc recently recommended doing only 6 monthly injections before going to every 3 mos. (because of a possible increased risk of ONJ for those of us on Ibrance, which tends to lower counts), and I was actually disappointed! Clearly, I’m a huge fan now. I consider it one of my miracle drugs, along with Ibrance. My only advice is to get any teeth issues well checked out prior to starting it.”

You can see why we are on-the-fence about Friday!

This is what I think Leswell will do, teeth having been cleared. He will roll-the-dice and have one shot of Xgeva as planned and also his first six-month Eligard injection since his year of Vantas concluded yesterday. Even though mCRPC, he will take “Lupron” continuously until the end. Concurrently, he will take six more days of Zytiga since we paid for it (that is my decision) after which he begins Xtandi. We know that costly drug (except for those not on Medicare for whom it is currently free of charge) is unlikely to work following failed Zytiga but will place our puny hopes in it nonetheless. Btw, our MO starts with 7 days of 2 tablets per day, followed by 7 days of 3, and finally 7 days of 4, after which that dose will continue until drug failure or death, whichever comes first. He said he Xtandi could get him another year; I think that is optimistic, but his saying so certainly raised my spirits. As my spirits rise, so do my husband’s. He’s raking leaves. I’m going to get the house in shape for the plumber. Go well all. Thanks SUPERHEAT12! Mrs. S