What do we know about post-mets function?

seagan · August 2017

I'm dying to find (ack, no pun intended) info on what happens to our bodies - especially our musculosketal system -- after extensive bone mets have healed over, or at least diminished. I've talked to local cancer rehab folks, and they've explained in very general terms that the bones where mets have been can be more fragile, etc., but I'd like to understand it more fully. (Learning about something affecting me is key to how I cope with it!)

In my case, I had very extensive mets and while I'm not NED, they've really gone down. And yet I still feel stiff and achy so often, and wish I could distinguish better what's a met and what's just post-met weirdness (I joke someone needs to invent a Met-o-Meter we could run over our bodies to discern what we should be worried about!).

I'd love to hear if you've seen anything that talks about it - both what goes on in the body, and how we can work with it for maximum quality of life. There might not be much out there; one PT I've worked with said this is kind of new territory, in that it's only been fairly recently that people with such extensive mets have lived so long, so they don't know as much about it as they'd like. They did give me some general core-strengthening exercises and encouraged me to walk/run as much as a I can, but I'm hoping there are researchers or others out there who might have more specifics or background. I've spent a lot of time digging with Dr. Google, but keep coming up short.

Thanks in advance!

Heidihill · August 2017

Just popping by to say this is a great subject. I have had no evidence of disease for many years now and have somehow managed to regenerate bone. My bone is denser now than before treatment. Will be back later to explain.

Midwest_Laura · August 2017

Interesting topic, Seagan. I wonder how long the whole fragile --> strength process takes. My MO has forbidden me from seeing my chiropractor since I have extensive mets to the spine and ribs. But I desperately miss getting my back cracked. I've wondered how long I have to stay away. I also wonder about the impact that supporting drugs like Zometa have on the healing process.

Heidihill · August 2017

Sorry for the short break.

I should say I had only one spinal lesion so mine may be a completely different story. But I was on letrozole for almost 5 years and understand the achiness and stiffness part. I am now on Tamoxifen which is a lot more tolerable particularly at half dose. Tamoxifen actually can strengthen bone for postmenopausal women. While on letrozole though I also had to have Zometa to counteract the bone thinning. In addition I did weight training religiously in order to try to build new bone. Paradoxically, because Zometa inhibits bone turnover, over time the bone structure could actually change for the worse as old bone is not replaced, causing fractures.

I started with very low resistance training using therabands. That was about how much I was able to do. I gradually progressed to free weights and then to the machines, kettlebells and bodyweight exercises over the span of years. I hired a personal trainer at the start combined with a physical therapist and had my MOs approval. In addition I go hiking, mountain biking, running and dancing to challenge my bones and muscles. I also take Vitamin D, calcium and magnesium for bone health. I was osteopenic before diagnosis probably from being too sedentary, and now my bone density is better than it was 20 years ago.

With extensive bone mets, no one really knows what to do do, but I would say if you can, are not in pain, and your doctor approves, some light weights or resistance bands could activate healthy bone growth. Walking is also pretty good medicine. Yesterday I did a 30 minute walk with Leslie Sansone using free weights. So I got both my aerobic and weight training in.

Midwest_Laura · August 2017

Thanks, Heidihill. Your response was really helpful. You are of course right about the strength training. I've got to get on top of that. Thanks for the motivation.