Bone Mets Thread
Comments
-
Emac877, I too diagnosed with bone Mets few months earlier you, oct 19, 2 small 1 bigger lesions in my spine. I’ve been on ibrance + letrozol + zometa (later switch to xgeva), despite medication I had Mets progression in another 4 spinal bones and those 3 growing, in 7 months! Recent mri showed spine Mets stable, compared to mri taken 2 month ago. MO thinks there are more bone progression so I have to take bone scan in a month.
KBL, I am so sorry about bone biopsy result, it was not what you and all of us here expected. Thinking of you, please update us.
0 -
Just learned that I have 4 skull mets, 2 of which are large (2cm and 2.5cm) and need radiation because the dura adjacent to those two lesions shows some thickening (probably inflammatory response) and that is causing some pressure in my head (and possibly the ocular migraines I've been having since May? MO wasn't convinced of that based on the MRI images but I have to wonder.). No brain mets, thankfully.
I've had extensive bone mets (basically every bone) for a decade so this is not terribly surprising. But I've never had radiation so this is new territory. I will see the RO very soon.
Have any of you had skull mets radiated? What can you tell me about side effects and recovery? Hair issues, fatigue, nausea, headaches...?
0 -
I-beat-it, Thank you so much. I’m sorry you’re issues as well. Please keep us posted on bone scan. Do you find anything different about Zometa and Xgeva? I’m trying to decide which one to have.
Lulabee, I’m sorry about your skull mets. Can you tell me how they found it I can’t help with any answers about radiation. Hopefully someone will come along to answer your question.
0 -
KBL and anyone else wondering about this,
Zometa is given intravenously, and it can be given every three months. Xgeva is given by injection, and most doctors will give it every month bc giving it every three months is still being studied (although I've seen folks here who have convinced their docs to go that way.) Zometa is an older drug, and cheaper. Xgeva is a more expensive drug -- so your insurance could come into play on the decision. From what I've read, Xgeva has been shown to help not only strengthen bones, but also to help with bone mets. I don't think the studies have been so definitive on Zometa (someone please correct me if I'm wrong.)
One other thing -- a potential SE of these kinds of drugs is jaw issues -- that is why some folks prefer the Zometa on an every three month schedule versus xgeva every month.
I'm still in the throes of making this decision myself -- which to use? I have had some blips with my kidney function numbers, and my MO said that Zometa affects your kidneys, but xgeva does not. Again please correct me if you know differently.
0 -
that's a great overview BevJen, I would just add that there are some articles by the BCO staff to read such as this one
https://www.breastcancer.org/research-news/20120821
And a whole thread for Xgeva if anyone wants more insights from people who have been on it.
https://community.breastcancer.org/forum/8/topics/832600?page=8#idx_218
I was on Xgeva from the beginning but have been off since January to have my dental work. My old MO did the Xgeva every three months with me after ten months but my new MO says she only gives it monthly (or every six weeks for someone like me on Herceptin ). That six week interval is done so that we don't have to make extra trips to the office just for the shot, we are already on an every-three-week schedule of visits for Herceptin.
Never really thought Xgeva gave me any side effects and I don't notice any change in side effects having been on it 2+ years and now off for eight months. But as always, mileage may vary.
I feel like the AIs cause my fatigue and creaky bones, not H&P and not Xgeva.
Also my jaw is holding up fine (But again, YMMV) and I went and did a dental implant! Finally getting the crown in this week. Everything healed up the way it was supposed to and I welcome a"drug break" of any kind. ;
0 -
I'm getting Zometa every month. I just had my 4th infusion last week. The first two were a bit rough. I had a lot of nausea the night after and ended up getting up and taking a Compazine. I also ran a fever of about 101 for a couple of days after doses one and two. I didn't really have any SEs after the third and fourth infusions. Hopefully the rest will be without any SEs.
I did have the infusion nurse and then my MO's nurse come in during the infusion to tell me that my ANC was .44 and that I was to be very careful about avoiding infections and sick people. Basically, wash my hands, don't touch my face and stay away from the pharmacy (were sick people go). They both repeated it and made sure I understood how important it was. I had my CBC done yesterday, and got a call today that my ANC is still low, but high enough to resume the Ibrance.
I have my next set of scans - nuclear med whole body bone scan and CT - scheduled for September 30. Fingers crossed that I'll be "Stable Mable". (My husband loves that expression.)
0 -
Thank you, BevJen, Olma, and Sunshine. I will talk to my MO tomorrow to see what she can find out with insurance. I just went to dentist yesand had a cleaning, so I should be good to go. I don’t think I’ll get the meds until my next appointment on the 24th, so she can see which one my insurance will cover. Much appreciated.
0 -
xgeva-- I was on it for over a year, they give you a shot in the belly monthly. It stings but not for long. After a year as bone mets continued to appear my Once took me off of it and put me on Zomata, monthly half hour drip. I had no side effects from either if them. Onc said he hated to change it because xgeva was the better drug but it wasn't working for me,
0 -
As do I, lauawill and KBL!
0 -
Jumping around in order of reading. Lulubee and I - beat-it, sending hugs to you both.
On Xgevs, I get the shot in my upper arm. As with Faslodex, it should be warmed and given slowly. I have received it monthly now for a couple of years. No SE for me. Got it every 3 months until I developed hypercalcemia and then changed to monthly.
0 -
Thank you, Snooky and Joyner.
0 -
KBL - sending prayers and lights of hope.
0 -
Thank you, HopeandGratitide.
I just got back from the doc. I have to say this practice really cares. My docs are calm and soothing and really give you hope when you feel despair. They don’t know how long I have. Who does? She said she understands my frustration at my circumstances, but she still thinks the meds I’m on are working and that we’ll stay the course. I will be starting Zometa on the 24th. I have had my bout of anger about my circumstances. Now I will move forward and continue to enjoy my life for as long as I can.
I refuse to let this disease rob me of what time I have left to feel nothing but sadness. If anything, if I feel sad at any time, I will push through whatever way I need to. It may eventually take my life, but it won’t take my now.
Hugs to all!!!
0 -
KBL - I'm so glad to hear your team was able to provide the emotional as well as medical support that you needed. ❤️
I’m compelled to comment that I’m a bit disappointed in my two PET scans. My first was at Moffitt in Tampa. My second was in a rural facility in Wisconsin. My Wisconsin MO showed me both CT scans side by side. Why am I disappointed? My Moffitt report says nothing about T11 yet the tumor was there clear as day in both scans. Why wouldn’t you report on EVERY spot? What else is going to get missed down the road? I really don’t need one more thing to worry me. I think my plate is full. I wish my Wisconsin facility would post the radiologist report online but I guess that is a small gripe in the grand scheme of things. I also think I need to learn more about SUV numbers and how exact they are. If anyone has any good reading to recommend, please post links.
On the bright side, I’ve been moved to 75 mg Ibrance and I feel like I have my life back. I was able to control the bad side effects from Zometa at my last infusion. Fulvestrant gives me crazy hot flashes but I can tough that out. So all in all, I’m ready to get out of the house and party as soon as Covid is under control.
0 -
Thank you, RK2020.
My cancer was missed at Moffitt. It’s not that they did anything wrong, it’s just that once the bone marrow biopsy was negative, they didn’t dig further to see why I had so many bone lesions. And when I asked why they didn’t say anything to me about four tumor markers being high, the doc basically said they thought since all four of them were high, it was probably not right. My tumor markers are one of the only things that is right at this point. I’ve not had anything show up in a PET scan either.
I don’t know what SUV numbers are. Can you explain.
0 -
KBL - I'm no expert but my understanding is that the SUV number is what they use to measure lesions on PET scans. For instance, my report says “bone metastasis involving the right sacrum with maximum SUV 4.2 compared to 6.9 on the prior study". Several other metastasis also reported lesser SUV numbers. My MO was happy. But yet the comment about T11 was “decreased in size and unchanged in metabolic activity". So I'm not sure if SUV measures size or metabolic activity. I guess I need to start googling. I don't think of these questions until after I leave the doctor's office.
0 -
KBL— SUV on a PET scan represents the standardized uptake values. Not all glowing spots on a PET scan represents cancer. They can read the uptake value. The higher the number the more active the cancer.
It’s been a while since I researched SUV. I was thinking SUV has to be at least 3.0 to think the spot is cancer.
My most active spot back in January had SUV of 8.
0 -
Does anyone mind if I post a bit of humor (at least in my opinion) here? I was entering my upcoming appointments on my phone calendar. i have a Nuclear Med injection, followed by a CT scan, and then the Nuclear Med scan. I looked back at what I had written, and "scan" auto-corrected to "scam". Hmmmm. Made me laugh.
0 -
Sunshine,
Ha ha ha. That's funny.
0 -
Sunshine, we could surely use some humor!
0 -
KBL - good luck with the Zometa and I compliment you on your attitude. I completely agree, I will not let this disease rob me of joy in the present moment. NOW is all we have, I feel the real tragedy would be to fill my days up with moodiness or incapacitate myself with grief. Especially when I have been so fortunate to feel well for these three years.
It’s normal to go through emotions, anger, sadness, grief but I will not let them rule me. Cancer sucks but the life I have left doesn’t have to.
Love and light to all the beautiful women here. X
0 -
Thank you, RK2020 and DodgersGirl. I hadn’t heard of that before because the cancer never showed up on a PET scan for me.
Sunshine, humor is a great thing. Love it.
Olma, thank you. You are exactly right. I’m glad I’ve gotten the anger out of the way and finally have the answer to what I’ve been dealing with since 2013. Now forward is the only way to go.
0 -
Olma, beautifully written. Sending best hugs to you both!
0 -
@KBL Mine were found in pelvis via bone scan that led to mri which showed all throughout my spine. Hope that helps answer your question. I have my second scan on Monday and I’m so so so scared. Many new aches and that scares me so much. I was told blood markers going down slightly. I pray that’s a good sign.
0 -
Hugs to you KBL, lauawill and all the other wonderful women here going through tough times right now. I know a virtual hug doesn't help much but hopefully it let's you know that we are all here for each other.
0 -
I know I have asked this before, but I am just trying to figure out the pain I am having. My bone mets are to spinal bones--- C2, T11, L1, L2-- and pelvis. This is documented on baseline PET and my routine CT's. They say "sclerotic" on the CT's. My 2nd PET (last fall) said no uptake. I am on Ibrance/Letrozole/ Lupron and Xgeva. If the mets is inactive/controlled, why do I hurt so much???? I have pain to my spine-- bra closure area, and lower back, and to my left hip/butt bone (the bone you sit on--- I am skinny enough that I can feel where the bone is). I feel worse at night when lying in bed. My old MO (just switched) and my PCP just say "take Tylenol". I will ask new MO at next visit. I just do not understand if the cancer is controlled, why do I hurt in the areas of documented cancer. Do any of you hurt even if you are told the cancer is stable?
0 -
I am Stage IV de novo. Had no idea anything was wrong until I woke up in mid-June with sternum/rib pain that was initially diagnosed as costochondritis -- over the phone, thanks to COVID, and without an X-ray. A month later when it didn't go away, I finally got the X-ray to rule out fractured bones, and there was a very obvious mass. So no, I wasn't on anything, and had no freaking clue why I was in so much pain. I missed one mammogram. One. Now this.
0 -
Hi Candy,
I'm in the same boat in that my scans remain stable but I hurt EVERYWHERE and over the last few months the pain in my hip, lower back and neck have increased (all areas of known mets). I think the problem is twofold. For one thing, the hormone blockers are known to cause aches and pains. I'm on Faslodex and I think it contributes a great deal to my pain which is also worse at night. (It's amazing when I lie in bed and feel like even the bones in my feet, my ankles and wrists hurt!)
The other issue is age related. I'm 58 and scans have shown degenerative changes in my spine and hips which, unfortunately, we are not immune to. I do think that prior treatments have contributed to this degeneration. When I was on CEF after my original diagnosis I started experience significant hip pain - it hurt to sit. It was explained that the chemo impacts the cartilage as it is also an area of active cell division. As a result, some of the cushioning we normal have in our joints is lost. I've had some trouble with my right hip ever since and now, with the treatments, it really hums.
Hope you get a good explanation from you MO. While I know from experience how much this gets into your head when you don't know the cause, I'm hoping it's not the cancer. Sending hugs!
0 -
a question for those being on zometa, do you use calcium as supplement?
0 -
hi I-Beat-It, I am not on zometa but my MO had me taking calcium with Vitamin D3 since I started treatment
I think it's recommended for all with bone Mets
0
