Bone Mets Thread
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KBL - thanks for the link. I am jumping on my first Zoom now.
I had bloodwork and an EKG done yesterday and have an appointment with my MO tomorrow to discuss the results.
I had a blunt pain in my right leg - below my knee. It wasn't constant - only when I turned a certain way. I didn't bring it up to my MO because it was only a few weeks. After the Zometa, about 3 days later it went away....but now occasionally - I get a throbbing pain in that area. Nothing showed up on the scan - but I am going to tell her about it.
I hope everyone has the best holiday month that you can.
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I’m sorry so many are dealing with new hip pain and other bone issues. It’s so hard for others to understand what it’s like to constantly be thinking “What the heck is that!”. And, of course, age related stuff doesn’t make it any easier. I agree, if it’s bothering you mention it, particularly if it lasts more than a couple of weeks.
Wishing everyone a symptom free holiday season!
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believe60, I’m so sorry. I know how devastating it is to see progression at any time but so much, so quickly. I don’t have sufficient words to convey my feelings but know you are in my thoughts.
Have you spoken to your MO following these results? I’m wondering if it be worth considering a switch to chemo. I know chemo typically works more quickly than hormone based treatments but you have been on your present treatment for several weeks so perhaps there is no advantage to switching. Your second opinion doc should be able to suggest the best approach.
I wish I had better advice. Sending hugs.
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believe60,
You're in my thoughts and prayers. What has your MO said to you? Hopefully you hear soon or have heard back already given all of the changes. It's good your second opinion appt is soon. Hopefully you get answers and decisions that will calm your fears. Have you had a biopsy test to look for mutations? Keep us informed. We care and want to support you. I also progressed significantly recently after two months on a new treatment. My MO didn't offer to show me the scan images and basically just said, "time for a treatment change". I accepted not looking at the images as doing so tends to compound my fears - just tell me, but don't show me. I started my first chemo - Xeloda - an oral drug about a week after stopping the previous treatment, so not a long delay. I had read on BCO about the experiences other women have had on Xeloda, so I was prepared to say "yes" when it was recommended. You haven't had that many different treatments; let that reassure you that there's still treatments that will slow or halt the progression.
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gigil and bigpeaches, a clean xray delayed the diagnosis of my metastasis for months. I had had aches and pains in my leg/hip since September 2020. October 2020 xray was clean, and so I was sent off for months of on and off PT, during which time my MO also retired. It wasn't until March 2021 when my PT said things just didn't sound right and sent me back to my primary care doc, who referred me to an orthopedist, who initially dismissed my concerns as an hypochondriac cancer survivor (he was nice about it, but that's definitely what he implied). Then he was shocked by what the MRI showed. And finally after a biopsy in May 2021, I got confirmation June 1, 2021 (9 months after I first approached doctors about that pain) that I had metastasis to my right hip and sacrum (and later, unfortunately, my right femur too).
I don't get why the xray gave the doctors such certainty. My orthopedic oncologist also uses xrays to track the progress, but I asked him last time why, given that my lesion and small fracture don't show up on the xray. They do show up on MRI, CT, PET, etc. The orthopedic oncologist actually did decide it's not worth using the xray for now for me.
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believe60, I'm so sorry. I know it's difficult now because of the shock of the news. We're here for you. I hope you can talk to your doctors soon and get a better sense of the plan.
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Thank you everyone for the encouraging responses. I see my MO tomorrow, then off to Memorial Sloan Friday. I also see my orthopedist tomorrow cause the ct said possible fracture through the acetabulum. So they asked me to give up my walks ( which keep me sane) for now. I guess time for a cane. I will let you know after MSK visit if I’m changing meds. I obviously will do more chemo if it might help, but targeted therapy was a nice break from it
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Gigil- i. had 5 zaps to my right hip a few years ago I was on Xeloda and it was the only place that lit up- I was not having pain. It killed the cancer in R hip and I stayed on Xeloda another 15 months.
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Thanks sadiesservan and nkb. How close together were those zaps? Trying to figureout if and when I can get to Florida this winter.
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Mine was just one. That was all I needed at the time. 😊.
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mine was daily for five days
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OK. Good to know. Any side effects
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gigil, I had zaps to my hip/femur and spine. I don't remember how many, but I think I may have had 10 (or five) to my hip/femur and then a few to my spine. It really helped the pain in my hip. I wasn't having pain in my spine. Also, the RO's nurse used the word "palliative" with my radiation plan and I kind of panicked. I thought palliative was like hospice, but it's not. It's meant to "treat" but not to "cure". Sorry if you already know that. Just thought I'd share my experience.
(((hugs)))
Carol
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gigil, I don’t recall much in the way of side effects beyond one thing. The beams passed through some of the sensitive tissue in my genital area and, as a result, I had some discomfort for a couple of days. It was immediate. I remember getting off the table thinking “Whoa! Not sure I can walk!” Not from the hip but the irritation in my nether bits! Not sure if others experienced that but they had warned me that it was a possibility
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I forgot to add that I don't remember and SEs. I think the RO did give me some steroid-type pill to take, but I never took any. Didn't think I needed them.
Carol
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I had 15 zaps to my hip/sacrum and then a few months later 15 to my femur.
There's tightness and a bit of flexibility loss, but I think more regular pt would help that. Generally it was not a bad experience.
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I saw my MO yesterday and got a second opinion from MSK today. I have had some progression despite two cycles of ibrance/fulvestrant. Both docs agree that I should give ibrance at least another month. There was a 6 week gap between my scans and starting treatment, so I think they hope the progression took place then. Then I guess another scan and tumor marker blood work. But my CA27/29 was 50 in September at start of all this, and 60 yesterday. So not sure those will help at all. MSK doc prefers pet scans to the scans I’ve had. Also got to ask about my concern about how fast the arimidex failed for me. She said likely because although I was Er+, I was completely Pr-. I am praying to get at least some time from the ibrance.
To those talking about hip radiation, thanks for sharing. I go to the simulation appt Monday for my right hip. Not sure how many zaps I’ll get. RO says lesion is 15 cm long.
But hope I can start walking more and limping less! A little nervous about other parts being hit by the zaps. Take care all.
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Thanks so much on theinfo regarding radiation, I have started to limp this past week. Side effects don’t seem unbearable. Believe 60 it sounds like you got some good information. Has anyone had proton beam radiation? .
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believe60, your comment about the ER+, PR- was interesting to me. My first cancer was ER+, PR+, HER2-. My second (Stage IV) is ER+, PR-, HER2-. No one has commented on the significance of that change, and I never think to ask. I've been on Ibrance/Arimidex for a couple of years (I don't remember my actual start dates of either of them) and seem to be doing OK. My last scans showed "more conspicuous areas of metastatic disease." MO didn't seem overly concerned with that.
gigil, I haven't had the proton beam radiation - at least not that I know of. I just know I got "zapped." As an aside, my OO (ortho oncologist) suggested using a cane for added stability. I use it when I'm out and about, especially by myself. I use it on the opposite side of the mets, as recommended by my PT friend who specialized in geriatric patients (who are you calling "geriatric"?)
Hoping for a SE-free day for everyone!
Carol
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sunshine99 this past week I have used one crutch on the opposite side. It has helped, but now my ribs are sore on the side where I am using the crutch! Good grief! My hip is feeling better, however.
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Hi Everyone - wanted to introduce myself to you all as I haven't posted on this board/topic before. I have been stage 4 (officially) since April 2021 with bone mets to spine, a rib, hips and now skull. I was on Ibrance, Fulvestrant, and Zometa until last month when I was switched to Xeloda and Zometa. I just finished my second cycle of Xeloda (Capecitabine). Luckily no nausea or diarrhea (knock on wood) but I swear if I put my foot on the wall I'd burn the house down. I'll be advocating for a dose reduction at my appt next week - which we all know was inevitable.
I've been reading through the last year's posts and it's been very helpful - so thank you. I can offer two anecdotes. First, when I started on Ibrance my markers increased - and my Onc said that was normal - as the first cancer cells die off it increases the amt of (something something) that the markers measure but the marker numbers will decrease after a few months - this was my experience. Second, we know that the cancer's receptors can change over time. I started out at stage ll as ER+, PR+, HER2-. At stage lV diagnoses I was PR-, and now am considered almost ER-. My Onc said over time it's common to go from + to -, but very rarely - to +.
I am flowing and interested in all the new research findings about “HER2 low" as I'm at 2+. When I brought it up with my new Onc, she said I wasn't eligible for the new drug regimen as I hadn't yet been on a chemo drug after a stage IV diagnosis. ut now it's in the arsenal since I'm on Xeloda and it's a chemo drug.
Best wishes to all
Lanne
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Im 100% PR+ (or was, at diagnosis) and Ibrance didn't really last long for me (about 18-20 months, so just below the median). Didn't do much either other than hold things sort of stable, so the PR level of positivity may be a red herring.
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I wasn't on ibrance, but on Verzenio. I showed progression within 4 months. When I shared my disappointment, the doctor said that BRCA2 mutation carriers often don't respond well to it. I wonder if Ibrance has similar issues, depending on your mutation.
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lanne2389,
I also recently started Xeloda (1st cycle), my first chemo, and am interested in your experiences with the drug. There's a thread "All About Xeloda" if you're interested. What schedule are you on....14 days on/ 7 days off... or...7 days on/ 7 days off?
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I was diagnosed metastatic in May, 2022. I have previously posted a summary of my radiation treatment, but want to repeat it here for Believe60 and everyone who has posted regarding hip radiation, as I know how difficult it can sometimes be to find things on this labyrinth of a site. I hope it will help.
My mets were to my right pelvic bone (near the hip) and the clivus bone in my skull. I had 5 doses of Cyberknife (high intensity SBRT) to both areas at the end of June. The skull radiation caused significant side effects which took months to resolve, but the pelvic bone radiation was very easy. I had a minor (not even worth taking Tylenol) ache near the groin which felt like a muscle strain.
The only TM my MO measured was CEA and it rose slightly on my first set of post radiation blood work in August. I was panicking and she never explained that the rise could be caused by post treatment inflammation, but I did lots of reading, including on this site, and discovered that for myself. The inflammation resolved slowly over a period of months. My CEA was 13.1 at my most recent blood work , down from a high of 34+ right after radiation, and I'm hoping that it will continue to go down.
I started taking Kisqali and Fulvestrant at the end of July and needed an immediate dose reduction of Kisqali from 600 mg to 400mg because of severe GI issues which also caused inflammation. The inflammation is still there, although tolerable, but I suspect that it may still affect my TM readings.
Sorry for the long ramble. My goal was to reassure everyone facing radiation to a bone met that it is a miraculous treatment. If it is recommended for me in the future I would agree without hesitation.
Best of luck to everyone about to have radiation. Please come back and let us know how you are doing.
Eleanora
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I only lasted 2 months on Xeloda. I was so dizzy I could barely stand up. Evidently 2% get that reaction. I'm currently on Ibrance which is treating me well.
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Comple randon question but does anyone know what is the longest someone has lived with breast cancer bone metastases?
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weninwi - I'm on 14/7. I felt “blech" on the first cycle - not nauseous just alway stuffed and prone to heartburn (which I was already). Much less stomach-y issues on round 2. But what's weird is that my worst days so far are the two days after I finish a taking the pills - like yesterday and today my feet and fingertips are ready to burst! I'll pop into the other thread!
Lann
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Eleanora, thank you for sharing what your hip rads were like. My lesion is across the acetabulum and into the iliac crest. One scan mentioned a possible fracture on the acetabulum too. I recently had my shoulder joint radiated and still doing PT to get better strength and range of motion. But there are 2 small fractures in there too. My cancer seems to like my joints. It’s been bad enough to get the MBC diagnosis; I get really mad about how difficult staying as active as I used to be has been. (I was no athlete, but loved walking and yard work and exercise classes.). There’s stuff in my spine too so I have been told to be careful about bending and lifting. I have small grandchildren! I hope the rads help and don’t hit other organs. Even though my ovaries are not active, I would not like them to be radiated! I sure hope my third round of ibrance/fulvestrant makes a difference. One doc says Zeloda would be next. Take care everyone.
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I hope everyone is doing well, it is amazing the different approaches by oncologists my oncologist is a professor of oncology so very up-to-date with things, I have been for a consult with a radiation oncologist but haven't had radiation as my oncologist thinks as the pain is on and off and is being controlled by over the counter medication its best to wait. I have had various skin rashers from ribociclib so my oncologist is sending me to see a dermatologist.
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