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.

Beth, (rnsparki)

Sep 21, 2015 10:47AM Kendrasue wrote:

Deanna, nice to see you enjoyed some antiquing and some garden planting purchases, too. Thank you for the advice regarding Levo and Arimidex. Have you received my PM? Valerie

Sep 21, 2015 01:07PM Xavo wrote:

Beth, your professional specialties (bone and pain!!!) and the research trial you are in both are very impressive! It obviously is the drug that gave you all the sensations, for our diffuse mets are rather quiet, blood work are also rather eventless. Glad you are back to the board. You will be a great assess for us. Hope you will hang in there with your research trial treatment, and hope the trial succeed in providing us a new powerful drug! As for how to address every and each one individually by names, I think we should accept that since we have so many new women, we should not feel ignored if some names are not mentioned by someone. I think we have started a new practice. That is, names are for substantial and specific concerns and questions / answers. By dropping names fro general good wishes and warm regards, this thread is felt more open and inclusive to all.

All, happy Monday!

Sep 21, 2015 01:49PM LindaE54 wrote:

Beth - a warm welcome to you. Keeping up with this thread is not easy indeed! I don't work so have the time and even then, it's not always easy. Nice to have you join us. I lurked a long time before contributing to the threads. I have bone mets in femur, pubic bone (with pathological fracture), iliac, sacrum, rib and now possibly in spine (cervical and thoracic areas). I will never understand the mystery of pain with bone mets. Sometimes, it hurts so much, especially pubic and femur (those are very large mets and rod insertion in femur in April 2014), that I was convinced there was progression. But every test showed stable there so far. I have a small met on rib, so small that I could not believe the pain it caused. Sometimes I understand, if I move the wrong way, overdo it or weather also has an imact on my mets. And sometimes, they just decide to wake up for no reason. All my mets started out as lytic, but now some are a mix of sclerotic and lytic. The new lesions I have in neck and thoracic region are lytic/blastic, they show up on CT scan but not on bone scan. I have no PET scans. My Onc once told me that the slcerotic transformation (for lack of a better word) could be bone remodeling due to tx and pamidronate infusions (currently on monthly Aredia since Dec 2013) and scarring tissue from rads. I had rads to pubic bone, femur after surgery, iliac and sacrum. I hope you can stay on that clinical trial, and it's not a question of putting on your big girl's panties! Not for me anyway! What is the name of the clinical trial you are on? Wishing you the very best. You have such good advice! Thank you.

Annie - are you still feeling better? certainly hope so.

Myra - I'll bet you can't wait to see your precious Mallory. Agree, flying is much better.

Gaia - a bone scan would be redundant if you've had PETs. Praying you have good results with your MRI.

Mommal - Still thinking of you and Dani as she begins new tx this week. Praying it stops the beast in its tracks.

Amy - praying for good results! Those damn veins...

Deanna - Woohoo, it must feel good to get back to some kind of normal. Keep well.

Ever since my messed up infusion of 2 Sept, I have new things popping up. Yesterday was a nice sort of cool day so I figured I would do some overdue cleaning on the pontoon. All of a sudden, I felt so nauseous, started shaking and had pins and needles in hands and legs. I was apparently white as a ghost. This morning, I ran one errand and got dizzy. I'm waiting for my pharmacy to give me some feedback as to whether the infusion could be the cause. They are doing some research. My nurse is supposed to call me this week, I will let her know.

Wishing you all a good week filled with little joys and less pain. Hugs all around.

Sep 21, 2015 04:35PM 50sgirl wrote:

Keetmom, I don't know what to say. I will pray for your dd, you, and your family. I understand how overwhelmed you must feel, and I wish there was something I could do to help. It all seems like too much to bear. Please remember that we are here for you when you need us.

Lynne