Bone pain = mets getting worse or better?

mazie73

Hi all: I know there's a bone mets thread, but it'll take me years to get through all the posts! (And I really did try.)

I was diagnosed with extensive bone and lung mets just before Christmas. I'd been experiencing some pain, but chalked it up to bad posture (I spend a lot of time hunched over a laptop, sometimes sitting on the floor).

My doctor has me on a clinical trial: Abemaciclib, an unnamed PI3K inhibitor (from Eli Lilly) and faslodex (all three started on Feb. 4) . I've also had one Zometa infusion (Feb. 4) and three Zoladex shots (started on Jan. 3).

Shortly after the first Zoladex shot, nearly all the bone pain went away, as did a small pleural effusion. A PET scan on Feb. 9 showed smaller lesions — obviously, too soon for the clinical trial drugs to have worked, so my oncologist attributed it to Zoladex. But now the pain is back. Hips, left leg, ribs (both sides), upper back. My next scan is April 3. I'm panicking. Could this mean the lesions are going away? Not sure if it's helpful, but here are the Feb. 9 PET scan results: "Mild FDG uptake in several mixed lytic / sclerotic lesions.... Absent FDG uptake in sclerotic bone lesions."

Chantal10

hi! I am not sure. I started radiation today for a spine tumor. This all just sucks. My DCIS very early stage cancer has sure proved to be a sneaky beast 5 years later. i am sick of this crap! I hope your lesions disappear! I hate the word lesion. ugh! i am full of it today! Spending you a hug and wishing an immediate improvement for you!

blainejennifer

Don't freak. Faslodex is a wonderful drug, but it can cause bone pain. I know it did for me, and I was totally convinced that the mets were running rampant. In fact, it was the exact opposite. That's when I learned that when the drugs work, it can hurt like heck too.

We metsters know pain like Inuits know snow. Here's what I have learned: if it is joint pain, it is likely caused by estrogen depletion. Bone pain, or the feeling of having a weird muscle pull (caused by a lesion where the muscle attaches) is caused by mets OR mets being vanquished. I have found that met pain sneaks up and increases daily, till you think "Oh yeah, I've had back pain for two weeks now." Unless you break a rib or something*. Dying met pain is a little more immediate, and "burny" for lack of a better word.

Are your TMs diagnostic? It is helpful if they are, otherwise you have to learn what your body is saying by correlating it with what your scans show. It'll take you a year or two to learn. Good times, huh?

Talk to your doc about appropriate pain control. We do not have to be brave, nor do I recommend it. Enjoy your days. Sitting on the sofa grimacing with pain is not a fun ride.

* Do not get whooping cough when you have rib lesions. So many broken ribs.

mazie73

Thanks ladies! I have a rib fracture just from sleeping on my right side. And, I'm wondering if a vomiting attack on Sunday caused more fractures (I'm learning the hard way what foods I can tolerate on the clinical trial meds — raw veggies are definitely out). Ugh.

TM was 827 on Feb. 15. It's the only one — my doctor doesn't really rely on them.

susan_02143

I can't answer your question since my pain has been caused by different issues. Just wanted to let you know that I am so sorry that you are in pain, and I hope that your treatments reduce the pain substantially.

All the best–

Micmel

Mazie~ I can't say I have extensive bone mets but I have several. I spoke to my doctor today and he told me my tumor markers have plummeted and that it meant that the medicine that they were giving me was working to killl the cancer, and that it could very well be attributed to tumor flare. It's the tumors response to getting its butt kicked. So I am going to believe that is your case as well. If you had a positive reaction so early to the zoladex shot, you could also be responding to the other Medicines as well. I made it a point to ask because I was extra achey this week and didn't get out to walk at all like I'm used to. Hang in there and we are sending warm loving hugs of support. ~M~