Bone Mets Thread
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Smiley that is my understanding of cyberknife.
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Smiley2, yes, that pretty much explains the cyberknife treatment. It is really nothing to it. They made a mesh form to fit my back and I laid on that on a table and this big machine just goes around you. Took about an hour each time. Nothing to do to prepare for it and you get up and go on about your way. I had an infusion yesterday of Zometa, which is supposed to have been a one-time shot. I was on Zometa for almost 5 years, but had to get off of it because of jaw bone deterioration. I did find out that the calcium level in the blood was 11.5, with the highest reference range 10.6. I was expecting it to be a lot higher. But, I did find out that my tumor marker numbers have gone up, so that tells me that something is going on. I will see the oncologist on Tues. so will find out whatever is happening. My orthopedic oncologist had mentioned that I could have more cyberknife treatments. I asked the nurse yesterday how long it takes to see any changes from the one-time Zometa and she just told me that the doctor will go over everything when I see him on Tues. After reading a lot of the postings here, I am expecting to hear that there are more mets showing up somewhere else. Up to now, it has just been one place in my spine that they have been watching. I am just hoping that with all this new health care stuff, that I won't be told that I am too old to warrant more extensive treatment. LOL. I have heard rumors about the new Obamacare stuff, that poor grandma is not important enough to be treated. Hopefully, that won't be the case. I am just going to try and be patient and try not to think the worst before next Tues. Sometimes, after reading all about other's conditions, I feel guilty about feeling as good as I do.
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Joy,
You mentioned a one time shot of zometa but that is through IV. Did you mean Xgeva? You mention being on Zometa for almost 5 years and developing jaw bone deterioration. I have been on it about 3 1/2 years. What are the symptoms of jaw bone detioration or did your dentist notice it in routine exam/cleaning?
Do you have a scan scheduled to see if there are more mets? Hope your appt goes well next week! don't worry until there is something to worry about, right?
Easier said than done!0 -
Smiley, I guess I phrased it wrong, when I said a one-time shot. That was how the nurse put it. No, it was Zometa, and it was through an IV. The jaw bone deterioration showed up on a PET scan. I just happened to have a dental appt. a couple days after I was at the dr. and told the dentist and he did a full head x-ray. And, it showed up very plain there. They were going to put me on Xgeva after I went off the Zometa, but that has the same side effects of the Zometa. All of the bone strengthing drugs....Boniva, Fosamax, Reclast........ all have that same side effect. My dentist told me that most of these drugs now have been on the market about 5 years and now people are showing up with this problem. He told me he has 5 patients that he is treating for it. You know, we are all guinea pigs when it comes down to all these drugs they put in us. He probed around in my lower gum and then injected something. I go back every couple months and last time, he said it was just about cleared up. I was getting little slivers of bone that worked their way out of my gum after I had the treatment from the dentist. I had no other kinds of symptoms from it. No pain or any other signs. Even when the dentist was digging around in the gum, I didn't feel anything. It is supposed to be a very rare thing to happen. I will have to wait until I see the dr. and find out the next step.
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Joy78. I agree that we are all guinie pigs. I sometimes just want to say F*** It (excuse my language) and just stop all drugs! I don't want to go out feeling like I am truly dead even before i am really dead if that makes sense! Considering that conventional treatment fails, you would think that more oncologists and even patients would be open to alternative therapy. What is the difference really other than the alternative treatments are less toxic!
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Bump
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ONJ is rare but that doesn't diminish the seriousness if it happens to you. I'm not quite on board with the guinea pig analogy. We are eager to have the FDA approve drugs that appear to be working and often feel, if there is strong evidence of efficacy, that it should be fast tracked. However in doing so, we have little to no evidence of the longer term consequences of it's use. Alternative tx may be less toxic, in some cases, but not all. Natural or alternative doesn't mean harmless. We all have to weigh pros and cons of our tx and remember how individual our experiences can be. I am om Arimidex and Aredia and have had no problems. My mo plans to stop the Aredia after 12 months. Currently at 8 months. I exercise regularly and take supplements as well, which are great complements to my conventional tx. Caryn
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Bump
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Very grateful for this thread.
I've had mets along my spine for a while now, but just had mets to my skull diagnosed, along with a hot spot where my collarbone meets my sternum. I'm still waitiing for the doctors to decide what to do.
The thing is, the mets in my skull are lytic so they didn't show up on the bone scan, just on the CT. I had to educate my gp that lytic lesions don't show up on a bone scan to get him to talk to my onco for me. (She doesn't have any patient appointments open until October (yikes!), so he is handling the tests for this new progression in consultation with her.) The lytic lesions don't hurt, so it's pretty easy to slip into denial about the progression, but I don't think that is good for me.
Anyone else here have lytic lesions or skull mets? How are you feeling with that? It's freaking me out!
Also, does anyone know if it's really true that lytic lesions don't show up on bone scan? A friend who's an MD in a different field told me that, and it makes sense, but after talking to my gp, I'm curious.
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Claire,
I have both sclerotic & lytic all over my spine. Originally had MRI, bone & Pet scans to compare notes. Now I just have Pet scans done. I'm 3 years out on Zometa & Femara. I have joint pains at times and arthritis in my L knee, not sure if it's from the zometa or Femara.
Terri
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Claire I have had a skull met diagnosed in Feb '11. I had a big dose of targeted radiotherapy at the end of Feb '11 & it's not grown or shrunk since then. This met causes me no problems that I'm aware of. Best wishes for a speedy Onc appointment & results you want to hear. Hugs
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Bump
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What is the difference between sclerotic and lytic? Are they treated any differently? I have 4 mets and onc said one was a subtle lytic. Thanks. I also sort of wanted to revive the thread as I think it would be helpful to compare notes about bone mets. I've seen a few people on this site that I notice are living long and some NED and wonder about the different treatments. I'm on letrozole but don't know yet if its working or not. (Appt on 9-19). If it doesn't I wonder what will be next and what seems to be working best for others. Of course we are all different in our response but having the info all in one place would be great. If you lovely bone met girlies are inclined to participate, just post with a brief summary of your history of treatments. Or a long summary if you wish! Thank you all for your wonderful friendliness and support!
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hi all
i am a newbie; after 10 and half years stage IIIc, i ended up with a single bone met to T4. just found out august 30. i had no symptons; except my CA27.29 started to elevate last january and by august they had double rp 62 and a week later was 82. doc ordered a PET for restaging and there it was; one little spot. 1.5 cm.
plan is to biopsy it to check on HER2 status and other aspects and then radiation.
my main question is ; how do they biopsy this? is it a needle biopsy or open biopsy> any infor would be helpful. thankyou all*
diana 50
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Hi diana,
I would assume the safest is to do a ct-guided needle biopsy. It would be less invasive, although it depends what kind of bone lesion you have -- mushy or hard in layman's terms -- and the skill of the interventional radiologist doing it.
It took me a very long time to find someone who was skilled enough to do my hip and in the meantime, the cancer spread....
If you are in the new york area, there is a talented radiologist at hospital for special surgery, interventional radiology department.
Good luck!0 -
Hi Diana,
The bone biopsy to my femur was CT guided needle biopsy. After starting an IV with Versed and a pain med, I was in a lovely twilight sleep. I felt nothing during or after the procedure.
Caryn0 -
thank you whildchild and caryn. i like twilight sleep* lol
trying to learn what i can about bone mets*
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I was dx in March with a single met to my right iliac crest. It never hurt, well, until the bone biopsy. I have had a bone island in my left hip for about 7 years. That always hurts. I had the right side radiated and the cancer is gone. Never paid rent anyway, the bum. Then I had a bone scan and there was this big disagreement between my RO, MO, and the mean dude that did my bone biopsy on left side. Basically, no one could agree if I had cancer or not. Bone scan showed something, MRI showed something, nothing on CT, so the biopsy was pointless. That was in April. Believe it or not, my MO did nothing about whether or not there was cancer after that. Now the pain is about 1/2 way down my thigh and I decided enough was enough and changed oncologists. My new RO ordered both a Bone Scan and MRI and said there was clearly cancer there. UGH. So I am hoping Femara kept it localized to this femur and it hasn't run around to squat in another one of my bones. I find out next week. At least this time, it know it's there and it's going to get treated. He also said he would arrange for a MRI guided Biopsy, which I was told by the mean dude that wasn't possible. HA. Jerk. He let me, a diabetic, sit the entire day, until 4, before allowing me to eat anything. I have his name and I won't let him touch me again. Ever. Hoping for good news!
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Hi mz,
Good for you that you had the chutzpah to change docs and the luck to find a good one!
No one wanted to go to ny with me for the bone biopsy, so we had to find a doc willing to do it while i was awake.
They gave me ativan and local injections to numb me & drilled into my hip. Twice.
Was fine until local begsn wearing off in recovery, then was in screaming pain.
Because i was alone, they refused to give me script for pain meds. When i went back, after my stash ran out, they expressed concern about being addicted to pain killers-- can't win, eh?
Moral: you need someone to go with you, but if you do not, there are ways to do it without someone, so it won't be delayed.
Now, we confirmed bone mets, supposed to have healed, tore big tendon somehow, had two weeks of radiation to hip for pain relief and other to c1 disc to stop migraines or tumor progression to avoid paralysis because of spinal cord compression, but....
Why in the 2nd week did my hip start hurting again and continues, so i am nearly back to square 1, trying to walk without pain?
Radiation oncologist suggested edema, but no one wants to order an mri to check out what is really going on there....
The cancer filled my entire right hip socket..... we do know it has gone down one of my shin bones, but that was not radiated....
I wanted to do something better this weekend, than sitting inside doing little because it hurts too much to walk far. The drugs kind of cloud my head & and i still feel the pain....
I have flitted around to try and find a good onc, but for now, i am where i am....
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i had first diagnosis of breast cancer in 2004, mastectomy and oophrectomy only treatment, declared stage 1b, ned.
grew a lump on sternum in february 2012, biopsied, diagnosed as regional recurrence of breast cancer. bone scan, and MRI showed nothing else. but, PET scan showed it throughout spine, ribs, and sacrum.
radiation caused lump to disappear over a few months.
taking lexatrole and clonasten, my followup PET shows 'significant improvement and healing', hope this continues!
best of luck to you!
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I don't think I had bone mets biopsy. I was diagnosed ibc stage IV with spinal bone mets. I had biopsy of breast lump an ibc and bone scan, MRI & Pet scan that all confirmed spinal bone mets. Been on Zometa for 3 years and now doing Zometa every 3 months along with daily Femara.
Terri
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IBC - you would totally know if you had a bone mets biopsy, since they take a core sample of your bone, under conscious, or as I had, unconscious, sedation. Sometimes your ER/PR status can change - I went from being PR+ to PR- and my HER2 status was undetermined, which bugs me a bit. So glad you are doing well on Femara and Zometa!
Niki - what is the clonasten? I have never heard of that drug before. And welcome.
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I have never had a PET yet. Kind of scary. I don't want them to find any more.
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clonasten is the drug they give me for bones.... maybe only in canada?
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sorry, that's clasteon!
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it is for high blood calcium in cancer. i haven't had any chemo drugs.
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I'm glad you had significant improvement and healing! I get the XGEVA shot for bones and they said I have to take calcium because the shot takes all the calcium out of the blood and puts it in the bones. I have heard bone mets will cause high blood calcium.
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Hiya Fellow Bone Metsters!
Welcome to the newbies and hi to those I have known for awhile. I share my little story in hopes that some of you can get past some of your fears...
Bone mets is my primary metastatic spread. It will be 3 years since the spinal bone biopsy on Sept 11th. While there was no pain, the pressure was killer as I was only 3 days out of breast surgery. Like many of you, I had no bone pain until after the biopsy - however, I did have significant back pain from degenerative disc disease. It was particularly difficult for me as I was cancer-free for 10 1/2 years. I was hormonally positive so I was treated with Arimidex - side effects being significant joint pain which may be where the lower limbs of some of you are getting the knee and shin pain. My bone mets is in my 'core' - spine, pelvis a bit, ribs, sternum, shoulders and collarbones. I started with Aredia and went to Xgeva for strenghtening the bones. I too had a Vit D3 defiency and now take 2000 units a day - no more, no less. I added the calcium supplement with magnesium and zinc. After almost 3 years, without my bones using all the calcium, calcifications started to form and it was more in my blood. In June, I stopped the calcium supplements and opted for eating calcium-rich non-dairy foods such as brocolli - much easier for the body to absorb properly. I added horsetail for its bone healing properties and the next scans showed less calcifications and a marked uptake in calcium directly to the bone. I do take magnesium and zinc supplements. There are some reports concerning some issues with horsetail but I haven't experienced any.
I did have a very uncommon recurrence in my abdominal wall August a year ago which changed me to a triple negative and did 2 rounds of chemo in the form of Abraxane coupled with Avastin and continued with Xgeva. After only 2 rounds with no success, I am now on Xeloda and the condition improved and the bone mets remained stable. There is a very long story to this but no need here. I was removed from the pain medication given to me during that time and presently managing with Effexsor, Xanax and Percecets and have little pain from the bone mets. Presently, Xeloda at 4000mgs a day for 7 days on, 7 days off, Avastin infusion every 2 weeks and Xgeva shot once a month. Tumor markers dropped and I am considered to be stable.
I get x-rays, PET scans, CAT scans and MRI's periodically - sometimes a combination. X-rays can be deceiving as you can only see shadows and generally followed with another form of scan that will show the mets - the PET scan being the primary one I have every 3 months. Yearly, I have a full body bone scan. MRI's are done when I have an issue with pain or weakness and it will show nerve impingement that can happen with the bony mets - I have the balistic form which 'builds' bone and can put pressure on the nerves and/or tendons causing numbness and tingling in my arms. Xeloda causes hand/foot syndrome with neuropathy and thicking in the foot pads and hands pads. After almost a year on the Xeloda, this SE has definately reduced quite a bit.
I do add acupuncture to assist with managing the pain and numbness and have been doing so since 6 months after my diagnosis - it is nothing short of amazing - there is needle placement to aide with dry mouth, the constant running nose, the pain, and the numbness. I will continue this additional treatment along side my traditional treatment.
My quality of life is fairly good. I do have fatigue always and do so much and then rest. I think this is present in just about all of us at stage iv. Olive leaf helps some. There are limitations - I got a handicapped parking permit as we never know how we will do at the store; got taller toilets; have all sorts of gadgets that help with opening jars, pop cans and stuff; and laundry baskets on wheels. As we find a limitation, it is pretty easy to find a solution.
Keep you heads up and be active in your care and treatment, don't be afraid to ask for help at home, if it doesn't sound right, get a second opinion, always ask the onc when you want to try something new, remember that we do experience issues that have nothing to do with cancer (imagine that), any stress that you can control - eliminate it (amazing what a little calmness can do), instead of dredding scans- look forward to them (easier said than done), hope for the best, ask questions, cry when you need to, rant here - you won't hurt feelings like you might if ranting to your support group/friends/family (we all get it here), and finally - believe and trust that bone mets is not the fatal disease it once was - as long as it stays in the bone, treatment can prolong life for a very, very long time - personally, I will be treating forever but I will be alive and living life as well as it is physcially, emotionally, and mentally possible!
It has taken time to reach this point for me - I was scared, depressed, cried all the time, got snippy and frustrated, scaniety was a regular occurance, and I worried about every little thing as if it was going to be life-ending. I found this site about a month after my dx and after looking for answers on the med web sites (with horrid results) - once here, things started to change and the advice, comfort, information sharing, and the fact that I was communicating with people who totally knew what I was going through made all the difference. I have beaten the statistics. I feel like I will continue to do so - there may be setbacks but I am strong and have the willingness to try anything that might offer relief...some work, some don't...but I will give it a whirly-girl in case it does offer a better quality of life or an extension of my life or helps with the pain. I am filled with hope in the midst of horror and the light is shining bright as it can be.
Hope that this little story assists some of you...it was the kind of 'talk' I got when I arrived as a newbie and just passing the torch, so to speak - wishing everyone the best and big hugs!
LowRider
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Thanks for the clarification, Niki! I looked it up and it had something to do with a fungus and I thought, super, another fun side effect LOL But clasteon makes much more sense!
Low, thanks for your story. Sometimes, being on the boards, it's hard to piece together everyone's stories.
I'm still a little sick at heart about Marybe.
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Hi hlb and IBc and others,
Some gals wondered about the difference between lytic and sclerotic lesions, and perhaps, which imaging tests were the most useful.
I ended up having a crash course on bone tumor mets when all my scans started lighting up like xmas trees. It took a full year to determine why i was ill, but it did not seem to show up, or they could not figure out whether it was cancer or not, or how to get an easy biopsy.
So, one radiologist who specializes in pet scans befriended me, and explained what went wrong last year when the doctors just ordered a pet scan and declared me "cured!"
1. I was told that while pet scans are thought to be definitive by many doctors, they really are not very good at picking up on all the different type of bone lesions. They are okay with lytic, but not necessarily, sclerotic.
2. There is a newer contrast agent for a better, more detailed bone scan, called sodium fluoride. I had that done twice this year. Pet scan places are doing them, but not all doctors understand what they are or are afraid of the cost. This type of bone scan gave us the best answers as to what is going on and can pick up on micro-mets, etc.
3. The american cancer society has a 24/7 hotline. A request can be submitted thru a cancer info specialist to get a call back from an oncology specialist who can research and explain about bone mets.
4. As i recall, there are two kinds: lytic and sclerotic. The former is soft and mushy and can cause stability problems, but is easier to biopsy. The other is hard
And sort of like a callous, because the bone is trying to heal itself, etc...
Mine were sclerotic, that is why i had such a tough time getting a biopsy.
However, i would like to put the disclaimer that i am not giving definitive medical recommendations and gals need to double-check the above if you have further questions, ok?
Hope that helps!0
