On Bone Metastases and Thriving Metsters…
Living Beyond Breast Cancer Conference – Metastatic Breast Cancer, Thriving Together
Philadelphia, April 20-30, 2017
What I enjoyed most about attending the Living Beyond Breast Cancer Conference in Philadelphia in late April was being surrounded by the most amazing women. The focus was on Metastatic Breast Cancer and was called “Thriving Together”. When we are first diagnosed with stage 4, we are given very little hope from the medical establishment. All we want to know is that there are cases of women who live for more than the couple of years (in my case months) we are given and are able to have a good quality of life. Most of us are not told that being in a room full of metastatic thrivers is possible. All I need to know is that it is possible, and then I will ‘make it so.’ So, I thank the Metastatic Breast Cancer Network and Living Beyond Breast Cancer for giving us the opportunities to inspire each other and to hope.
The most interesting session I attended was on Bone Metastases. It was held by Dr. Adam Brufsky, from the University of Pittsburgh and the medical director of the Women’s Cancer Center at Magee- Womens Hospital of UPMC and the University of Pittsburgh Cancer Institute. He was an excellent presenter, was very knowledgable, and most importantly, cared deeply about answering everyone’s questions. I had bone metastases and tumors covering my spine and pelvis like leopard skin, crushing five vertebrae (I’m four inches shorter now!) and splitting my sacroiliac joint so that I lost the use of both legs and one arm. Bone broth and exercise were my way of making liars out of them and I now ski and hike and scuba dive. I am currently NAD but continue to take Zometa to keep the bone mets asleep so I think you can imagine how interested I was in his talk. I went on to research on the internet further, so I provide some links I hope you will find helpful.
I have a love/hate relationship with Zometa, a bisphosphonate infusion recommended as a bone strengthener for osteoporosis and bone metastases. Bisphosphonates are used in the prevention and treatment of bone metastases because they have been found to prevent inhibit and decerase bone hypercalcimia, resorption and metastasis. Aredia is another bisphosphonate that is administered by intravenous infusion. Xgeva is an antibody administered by subcutaneous injection for the same purpose. All three of these medications have serious potential side effects, the scariest of which are osteonecrosis and kidney failure. Bisphosphonates have a higher incidence of renal failure than Xgeva, but Xgeva has a higher incidence of osteonecrosis. Because of the danger of osteonecrosis, patients on these drugs are advised to wait 1-3 months before AND after taking them before having serious (invasive) dental work done.
As I recounted in an earlier post, my tooth broke in half and I’ve been reluctant to have the rest removed because I’ve had a total of 20 bisphosphonate infusions and I was told my bones are likely saturated for life. I asked Dr. Brufsky when it might be safe for me to have it removed and he said that I should be fine after 3 months because, although my bones are saturated, the danger of osteonecrosis comes from the level present in the blood. That level goes down over time. You are most susceptible to osteonecrosis when you have peak levels after a recent infusion.
Because I had heard that bisphosphonates are bad for your system, I had pleaded with my doctors to give it to me every 6 months instead of every 6 weeks. A recent study compared dosing patients every 4 weeks vs. every 12 weeks and found no change in benefit but that fewer adverse side effects happened with the 12-week group. He pointed out to me that a study had not been done for 6 months, that I was taking a chance, and that I was my own study. I asked him if, after 20 infusions, my being saturated meant that I didn’t really need it anymore, and could stop altogether, he asked, “Why would you want to do that?” He is very clearly in the “better living through chemistry”camp and the fact that politicians seem determined to take away my health insurance (leaving me no choice) and that I wish to restrict the number of unnecessary chemicals taxing my poor healing body didn’t occur to him.
But he did tell me to have an NTx (N-Terminal Telopeptide) test (via blood or urine) and that if my levels were low, I likely didn’t need to keep taking bisphosphonates. If my levels are high, that would mean that a high level of bone resorption or turnover, is taking place and I should keep taking Zometa. Since cancer increases bone resorption and the goal of bisphosphonate therapy is to suppress bone resorption and NTx is a marker for bone resorption, it makes sense. I don’t see my oncologist for another month and I haven’t spoken to her about it. But I wanted to get this information to you right away so you could talk to your doctor about it if you are taking any of these drugs for bone metastases. I’ll keep you updated and you do the same if anything significant comes of this.
As always, bless you all on the path you choose…
Useful relevant references…
• Bisphosphonates in the Prevention and Treatment of Bone Metastases
• Test ID: NTXPR NTX-Telopeptide, Urine
• Markers of Bone Metastases in Breast and Lung Cancers
Disclaimer: Nothing contained on this website should be construed as medical advice. I am not a doctor. I am a Stage IV breast cancer thriver who is currently NED/NAD and simply sharing what I did, and do, and why. Please research anything I share to determine if it is a good path for you. Bless you all on the path you choose.
All original content contained on this web site, What I did and do and why, is copyrighted, 2015,2016,2017 Kaiulani Facciani.