Bone Mets Thread

emac, I would definitely tell your MO about the pain. Have you had your scans recently? My initial pain, before I was diagnosed with mets was sharp, but the mets weren't found until I had a lump in my armpit biopsied. I've not had any of the signs of spinal cord involvement, but I still have mets to the spine. Anyway, I don't think you're being a hypochondriac, but I would think you would want to let you MO know about persistent pain, even if it's "just for the record". Good luck with your appointment on the 13th.

I-beat-it--- I have heard of zometa and xgeva for MBC, but not prolia. I thought prolia worked a little differently and was more for osteoporosis, not bone mets. Insurance issue? Or the MO decision? I would be asking why to your MO. Hope more will chime in. But I have not heard of prolia for us cancer patients.

thanks Candy I appreciate your support xx

I-beat-it, crazy not to talk to you about a plan!!

Emac, I agree: you need to report this to you MO right away. You're not being a hypochondriac but rather a prudent MBC patient.

Hi EMac, I personally have a three week rule in terms of reporting things. I am pretty active typically, often overdoing in the garden if not careful so there have been some self inflicted issues. If it concerning definitely let him know or just be prepared to bring it up on Tuesday. I only see my MO once every three or four months so reaching out by email is often my only option. Thankfully he is very responsive and seems to be fine with this approach.

I-beat-it - Wow. I agree with Candy-678, that was my understanding of Prolia too. I can't imagine an oncologist switching meds without discussing it with you. That's crazy!

Thank you all for your input on the back pain. I've been tracking this pain for about two weeks and it has gotten progressive so I called and talked to my MO's office yesterday afternoon and she ordered an MRI to be done as soon as possible. I am anticipating that will happen next week. I see her on Tuesday and will discuss it. One year in I thought I would be taking this stuff more in stride but new developments still amp my anxiety. I will update when I have news.

Pamela23, was that your first infusion of Zometa? My first was last month, and I was down for 2.5 days. They say the flu-like symptoms are usually only the first time. This month they made the infusion an hour, and it was much better. I was able to function and no fever. Ask to do an hour for the next one. Make sure you take Tylenol before infusion and drink lots of water the day before.

Bev, I've been on Xgeva for a couple of years and have had no problems. It is important to warm the bottle first and have the nurse inject it slowly.

Hi BevJen,

You may not need to be worried as, if I recall correctly, you don't have a lot of bone mets. I am riddled with them. My MO didn't start me on bone strengtheners (started with something oral which was a total pain... timing of taking it was critical which meant getting up very early! The he switched me to a bisphosphonate.) until almost a year into my stage IV after my bone mets progessed. I've now been off of the strengthener since I think February - we stopped when my creatinine was jumping from the Verzenio. Bisphosphonate can be hard on the kidneys. He is unconcerned that I am off as he says it stays in your system so not sure if he will want me to go back on. (I had monthly infusions for about two years.)

All to say, I'm sure your MO will add it in if needed. It can come with a kick in terms of aches and pains so wouldn't add until it's time.

I’m not sure if this question has been asked in the past, so if it has, I apologize. Knowing now that I have significant bone mets from the top to the bottom of my spine, why isn’t it mentioned on a CT scan? What modality in scans do you use to see if there is progression? The only thing that shows it for me are MRIs, so I think from now on I’m going to ask for them only. The CT scan doesn’t show any of my cancer. PET and bone scans don’t show it either.

finally- I think you need to have 20% of mets get worse, or move to an organ, for them to consider it progression. When I was at 3.5 years, I had "slight progression", in that a mound of mets on one hip was getting darker and darker with each scan ("smouldering mets") plus a new met had appeared mid-spine. My MO suggested watch and re-scan in 3 months, but said that I could consider consulting a radiologist to see if it warranted zapping. The RO said they won't zap unless its causing pain, so that pain you have might be your golden ticket to radiation, if there aren't a lot of new mets otherwise. He wrote up my insurance report indicating there was pain, and went ahead and zapped both places and so far the scans have been OK ever since. So I'm glad I did that rather than wait to see what future scans would show..

Hi All.

KBL, bone scans are my nemesis, probably fo4 the reason that EMAC has suggested. Pretty sure it is low mitotic rate that makes bone scans useless for me. Your ILC is tricky though. Many of the ladies with that diagnosis have commented on the scan challenges and the way that it spreads.

I didn’t know about 20% either. Makes sense considering my MO is planning to stay the course on my treatment now if my CT of chest/abdomen (moved up given issues) is stable. Clinically there appears to be some movement with the bones but not enough to panic. Thank goodness for rads! I’m happy to stick with my current combo.

Re Cure-ious's comment regarding 20% as a measure of progression -- if you are interested in reading more about this, I found this article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC37085...

It details how the criteria for progression have come about -- it's an interesting read -- the title is" When Progressive Disease Does Not Mean Treatment Failure...

Pertinent to C's comments, it says this:

"In the year 2000, the Response Evaluation Criteria in Solid Tumors (RECIST) group (17) then established the current criterion for progression—a 20% increase in unidimensional measurement or appearance of new lesions."

There are other measurements discussed in the article -- such as the WHO measurement criteria, etc.

That makes perfect sense. I have so many tumors in my spine and stomach, but they’re all small, under 1cm. No one has told me why it can’t be seen. I really appreciate it. Thank you, I-beat-it. I had the biopsy of one of the tumors, so we know it’s the same cancer that’s in my stomach.