Sep 21, 2015 05:08AM rnsparki wrote:
Thank you so much for sharing your experiences with bone mets. I'm sorry you are here, but it is comforting to know I'm not the only METAvivor with such diffuse disease. I should explain that I am in a clinical research trial (will be 1 year soon). I visit my Clinical Research Center monthly and have blood drawn, see my ONC, and receive treatment with Xgeva if my blood work is "ok". I take daily exemestane 25 mg orally (Arimidex), weekly study drug (entinostat 5mg mg orally or placebo), and monthly subcutaneous injections of denosumab 120 mg ( Xgeva). I am scanned every third month with CT of chest, abdomen, pelvis with oral and IV contrast to assess for visceral organ spread and a bone scan (nuclear med) to asses for bone met progression. I have the same radiologist/nuc med docs review my scans every month for consistency. They do not believe my bone mets are spreading, its just so darn hard to tell because of the shear number of them. I have viewed the scans and the lesions are all over and very hard to measure accurately - must compare bone scan with CT scan and it is really hard and tedious to do. If I have disease spread in bones, or to other organs I am out of the study. With that out of the way. Side effects: I did absolutely great for about 9 months no real s/e but some easily controlled bone pain, then WHAM! Bizarre stuff which led me and everyone else to believe I sure was getting the study drug but (who knows, really, the study is double-blinded).
I experience, pancytopenia low CBC: white & red cells low, hemoglobin as low as 8.5, HCT low and Platelets all over the place from 65 to 106 never normal range! Had a hospital admission 8 wks ago for what turned out to be "status migrainosus" w/o a headache - all three drugs I take can cause migraines and I was a migraineur when I used to menstruate (I'm 63 and my period is a distant memory). I had intermittent bone pain that was bearable and treated with heat until recently.
However, now I am experiencing bouts of intense pain in lumbosacral thru to coccyx, iliac creasts and SI joints, sometimes around to groin and hips with intense fatigue (can be from the anemia and cancer combined, who knows?). Had MRI's and no nerve impingement yet. Next is repeat xrays. For pain: Opioids, at very low dose (5mg percocet cut in half) make me insanely nauseous, give me weird H/A, and insomnia but help moderately with the bone pain. I take zofran for the nausea. I was offered rads to the area but concerned because of the proximity to the rectal vault (radiation proctitis is a pain in the butt to treat - pun intended). So, rock and hard place because this treatment protocol has rendered NO new disease. Don't want to opt out for another protocol because of this pain that may or may not continue. I really want to continue working but I see patients and can't just keep rescheduling them if I'm in pain and require pain meds. I won't write prescriptions if I'm taking opioid pain meds.
Being a nurse practitioner has been a blessing and curse at the same time. My specialty now is osteoporosis. But at one time or another I was certified in wound, ostomy, continence and pain management! So somedays I know whats going on and others I know just enough to make me scared, and other days I have a million questions.
For those getting Xgeva injections (which is the same drug as Prolia but in double the dose I use for osteoporosis patients) a very slow injection into any subcutaneous tissue should help with the pain/discomfort. Taking tylenol or ibuprofen after the injection should help with the bone pain. My s/e from Xgeva stopped after the third month. I prefer the injection in the fatty part of the back of my arm (there's a large area of fat on my arm to choose from!). Just be sure your nurse uses fatty tissue and not muscle.
Again, thank you all for the welcome back, and the info. I'm feeling much less alone. This is a strange journey, but I hope it's a long journey.
Prayers, peace, love to all. BTW, how do you keep up with everyone? I think I'll just jot down notes as I read then I can comment on posts. Again, each and everyone of you has been a blessing to me. Your courage & strength is contagious and your knowledge and sharing eases my fears. Please forgive this rambling post.