Bone Mets Thread
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Thanks BigPeaches for the response to my question. I have rheumatoid arthritis also. And I am on Letrozole which can cause bone/joint/muscle pain. So which is the culprit to my pain issues. ??? But it MAY also be the bone mets- which is diagnosed in the cervical, thoracic, and lumbar spine, even though considered "stable". I just wondered if the cancer could be part of the issue.
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Thank you Big Peaches for your response. I also have rheumatoid arthritis. And I use Letrozole which can cause bone/joint/muscle pain. So I am unsure what my pain is from. ???? But it MAY also be the bone mets--cervical, thoracic, and lumbar spine-- even though considered "stable"?. I wondered about that.
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I have been offline for a while, maybe more than a week, and I don't think that I reported here the GOOD NEWS about my first Zometa infusion. Only a minor flu-like headache in the afternoon - - no tylenol required. Then some strange bone pains on days 2, 3 , and 4 , but nothing severe. Sharp pin-prick type things which came and went like a flash. If I did not know that I had the infusion, though, I may have suspected some very strange new disease was coming on !! Ha-ha. So this is a relief.
Thursday I had my GI scope and stenting procedure (replacement of plastic with metal biliary stent and a install a new mesh duodenal stent) which was successful but had the after-effect of pancreatic inflammation which kept me in hospital Until Monday. Four hours after discharge my ankles and arms swelled up, so back to ER. They determined that the hospital had over-hydrated me. So this week I am in pain and nausea and weak and tired and just like a wounded animal curled up in my little den.
This posting is my first time to peek out so that is a good sign , I think, that I am getting a little better. Hardly able to eat enough to satisfy a sparrow. Ugh! Cancelled next two weeks of appointments in order to rest and recover.
I hope this improves soon so that I can get into my chemo treatments.
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Cross Posted in Lung Mets....HELP! I'm really confused about these results! Had a CT w/no contrast for increased SOB. I am on A/A so there was a possibility of pneumontitis. The only message that I have received from my ONC is that she is lowering the dosage of Affinitor from 7.5 to 5. Mostly concerned about these lung nodules that are mentioned. Only one tiny "possible" nodule was mentioned in my CT on 4/5/19. What are your thoughts please? No appointment for another month and no scans until July....Have been bone only for 4 years. I'm particularly confused by the wording "similar to 4/5/19 PET/CT but increased/new from 1/28/19 CT. How can it be similar to a test a few weeks ago, but worse from a test 4 months ago????
Impression:
1. Ill-defined left apical paramediastinal masslike opacity stable from PET
but slightly more prominent compared to 1/28/2019 CT with new pathologic
fracture/erosion of the left anterior first rib concerning for neoplastic
process.
2. Multiple scattered solid pulmonary nodules, most notably in the left
lung, which are similar to 4/5/2019 PET/CT but increased/new from 1/28/2019
CT concerning for worsening metastatic disease.
3. Diffuse osseous metastatic disease in the axial and appendicular
skeleton, unchanged from 4/5/2019 PET/CT.
4. Unchanged small right greater than left pleural effusions.Thanks all!
MM
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Is there a lung mets thread?
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Mason - I found this thread: https://community.breastcancer.org/forum/8/topics/780588?page=68#top
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Hey OW, sounds like you should have signed up for the hospital's 'frequent flyer' plan! If you can't eat too much, get on some Ensure or Boost liquid for nutrition and calories in order to build yourself up prior to the onslaught of chemo. At least you survived the first Zometa infusion without incident - the rest of them should be just as easy.
Masons ma, I'm no radiologist and hopefully the lung mets gals can advise more confidently but could the difference in nodule observation be due to the CT performed with the PET scan having less focus on the chest?
I might also be worried about the rib because I would think a new bone lesion could be a sign that the therapy is losing effectiveness. Should there be an opportunity to biopsy something, go for it. Let us know how it turns out.
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vlnrph, Thanks. Yes, we got some Ensure. taking in small (4 oz) portions because of this nausea and pain. I guess I am going to learn the virtue of patience, whether I want to or not!
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Regarding Taxol and bone mets, my previous oncologist said that it is very difficult to treat bone mets. My current onco at MSK is giving me Taxol for liver mets and said it would keep bone mets 'stable'. She said as long as we can halt the progression, it would be the first step. So I will be continuing with Taxol till the next scan. I like my onco because she doesnot give me false hopes - she is very practical.
I have multiple lesions on cervical, thoracic and lumbar spine. The pain specialist gives me long acting Tramadol and Celebrex, which helps to some extent. I requested for a referral to intervention radiologist but he thinks there are too many lesions so the IR will not be able to help with any procedures to reduce my pain. This is really disappointing.
Mason, sorry to hear about the increased lung nodules. Hope you got some more info about this on the lung mets thread. Have you considered a second opinion?
I find this forum very informative. Any new information regarding Taxol for bone mets would be helpful!
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S3K5 Thank you for the info regarding Taxol. Unfortuately, for me, taxol is doing nothing for my bone meds. 2 or 3 mets are stable. The other three are increasing and I have more since I started taxol.
My next ONC is Mon. so I need to discuss this with her. I appreciate your info which corresponds to what others have said. "little will stop them".. whoa, I did not know that.
I do know that "nanahope" had 15 sessions for her bone marrow mets and it cleared them up. She has posted on one of these threads.
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Snooky, please update us about your discussion with your doctor. Hopefully the next treatment would work for you.
Have you had any genetic mutation test done? I had read somewhere that most people who fail CDK inhibitors have PIK3CA mutation. I just got the results from IMPACT testing done at MSK and yes, I do have that mutation (47%). I will discuss about this with my doctor at my next appointment.
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I’ve been rereading some of the posts here. After a few good reports today I found out I have l have new mets in a lot of places spine.hip.sacrum pelvis, The last Pet in Dec showed stable. Good news an MRI says no mets in the brain.
More good news the one in my hip is large enough to do a biopsy to see if it’s still triple positive. I have an appointment with a radiologist on Fri. I have had more pain in the past 3 months which I kept hoping was Letrozole arthritis etc
My mo says radiation is important for the hip ASAP.
Needless to say It’s a bit of a shock even though I knew this was a strong probability. I dread starting chemo again and a new radiologist. Life has been pretty good these past two years with Stage IV. What I hate is telling my husband and family AGAIN even though this is not the worst I guess.
I have no idea what treatment is next. Right now I’m just confused even though it’s not so awful. 14 years is a good run
A million questions running thru my brain but I can’t formulate even one.
Hi Jaylea and Joyner and Lita and all you lovely people.
Maire.0 -
Wait! What? Little will stop the bone mets? I was led to believe that xgeva did a good job of slowing them down at least. Something about making some cells too slippery for the cancer to take root in the bone. Not just help keep them strong. Hmmm.
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My wife had extensive bone mets after Xeloda stopped working and her ER/PR+ turned triple negative. Prior to this she had lifetime A/C, no taxol as she was violently allergic to it. My wife was then put on Halaven. In no time at all all of her bone mets were eradicated. She even got two NED PET scans. Her MO gave her 3 months off, no chemo. He had told us the cancer would return as it hides deep in the bone. Well it went to her brain, the brain lining, the dura. They gave her 4 months or less to live,that is if she had only WBR radiation, no chemo.
She just finished the WBR and will soon restart Halaven. I read several scientific research articles that said the WBR disrupts the Blood Brain Barrier (and stays messed up sometimes up to 2 years) and allows Halaven to enter past the BBB. I guess her MO read the same stuff.
Here's my real point: I read somewhere that some lab was working on a chemical to force the cancer out of the bone where it hides. This is great if you've got a good chemo to kill it off, otherwise you've just released active cancer to float all around looking for a new home.
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Mike, it is such a great point. With HIV, they have the same idea, ie find a drug that reactivates the virus, so it will come out of its latent reservoirs and then kill it with the existing drugs, allowing the patients to get off these awful drugs instead of taking them for life. They still haven't found a way to coax every last infected cell out in the open, and in the case of cancer, even if we could do it, we don't even have the cure to blast them with. Cancer cells exist in multiple states, at any given time some will be replicating, some will be senescent, some will have reverted to a stem cell state and always, always there will be a population of stress resistant cells that will survive the chemo bomb. Cells were made to be this way by design, to try to ensure that some cells will always survive no matter what tragedy or starvation comes along. You can never get every last one. But fortunately the immune system can, or at least can outnumber them. It works 24/7, loves to snack on misfit cells. We just have to figure out how to expose the cells from the immunosuppressive shields they are hiding behind..
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SK51 My latest apt with the N prac. said that Taxol does work on bone mets but it takes longer. There is no plan to stop the taxol as long as it works on my breast and lymph nodes.
I have had to temporally interrupt the fusions so that I could have radiation done on my T10
Gailmary I was on Xgeva at the time. The onc said apparently it's not working for me. He put me on the other bone med. (can't remember name of it, it's a 30 min. infusion)
I don't know how long I'll be able to stay on Taxol though since the neuropathy in my left leg is getting worse.
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mike3121 - I wonder if you're referring to 15D11 antibody? This research looks promising, not only would it help Stage IV folks but could also prevent bone Mets in earlier stage cases. I am setting google alerts for this....I hope they will start human trials on this soon.
Also mike, so sorry for yours and your wife’s struggles with this rotten disease. You seem like wonderful support for her, bless you.
Snooky, sorry for what you’re going through with Taxol. Hope any neuropathy will be temporary.
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yes snooky i am aware we do progress on xgeva. Maybe just not as soon. Have you tried accupuncture for the neuropathy?
Mike3121 I agree. She's lucky to have you.
BEST OF LUCK TO ALL.
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Re xgeva and other bone drugs. Just wondering if drs keep you on it if were off the aromatase inhibitors. Like if your on Taxol? I havent heard if theres a time limit to take that.
Gailmary
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Gailmary, I have Osteoporosis, with three compression fractures, and arthritis in my bones. So I imagine that, in my case, I'll be on a bone strengthener for a long time. Acupuncture??? Never even thought of it. I know nothing about it. lol. I'm old school, older generation but, with an open mind. Think I'll read up on it. Thank You for mentioning it.
Snooky
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Maire, I have no answers but wanted you to know you're in my prayers as you embark on a new treatment plan. As always, the in-between state is a recipe for stress. It sounds like you have a plan in place with radiation to the hip to control the pain. I went on Taxol/Gemzar for liver, lung, and bone progression. It worked on everything but bone, so I just started Halaven. Let us know what treatment you settle on. Sending massive waves of support to you.
Mike, I hope your wife recovers well from WBR and responds well to Halaven when she gets back on it. I often feel this disease is harder on the caregivers than the patient. Sending prayers to you both.
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gailmary - re Xgeva/Taxol - I was on Xgeva from day one, so that means I was on it during Taxol, Herceptin, Perjeta and now I am on it with aromatase inhibitor, Herceptin, Perjeta. And, from what I understand, will be on it indefinitely. I don't think any chemo drug conflicts with the Xgeva the only thing I do know is not to do the invasive dental work because of the risk of osteonecrosis of the jaw.
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thanks Olma. I was wondering if there was a need for it w the chemo drugs cause i know the AI's are hard on the bones. Not crazy about taking xgeva for 20 yrs cause its hard on bones in its own way. Guess I gotta hope better drugs come along for us.
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Hi,
I've been on Xgeva for about 1 year, sc. injection every 4th week; my MO mentioned switching to Zometa iv. infusion every 12th week soon.
From the literature there is data showing that Zometa every 12th week is comparable to every 4th week (Zometa and Xgeva) after the first year of treatment.
Apparently there isn't data yet on Xgeva given every 12th week (compared to every 4th week)??
Just wondering if any of you are on Xgeva every 12th week ? And what your oncologists are recommending after the first year of treatment ?
Best wishes,
Meja
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Meja,
I am on Xgeva every 4 wks. But MO plans to switch me to every 12 weeks after the first year.
Half-life Xgeva is much shorter than Zometa. Dental management is therefore easier to accomplish with Xgeva when compared to Zometa. If someone needs invasive dental treatment (such as an extraction), a treatment holiday from Xgeva can be effective. Treatment holidays from Zometa are not very effective because the half-life is many many years.
Gumdoctor
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Thank you Gumdoctor,
Yes Xgeva has a shorter half-life (approximately 4 weeks). Are you aware of data demonstrating that treatment with Xgeva every 12 weeks is (as) effective ?
Meja
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my dr plans to change me next month from 4 weeks to 12 weeks. This is after 2 yrs. I was aware of study but didnt know results weren't in yet. Thank you gumdoctor. Thought half life of xgeva was like zometa's. Good to know.
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Meja,
I looked but have not found the literature on your question re Xgeva every 12 wks. Perhaps someone in our group knows of it.
Gumdoctor
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Here's my story about Zometa. Diagnosed bone mets beginning of 2011.
Over the next 10 months, I had chemo, lumpectomy and rads. During this time, I also had monthly zometa iv's.
In November 2011, I started Arimidex. I also continued with monthly zometa for at least two, maybe three years, I forget exactly how long, and then went to zometa every three months.
I was having a good run on the Arimidex/zometa. By March of 2018, I was worried about long term zometa effects and asked onc if I could get zometa every six months instead of three. She was hesitant but agreed. I also asked for scans once a year instead of twice a year. Again, the onc hesitated but agreed to it.
Well, low and behold, I went just one year without getting scanned, rather than getting them twice in a year, and the scan this March showed progression to a spot on the spine and small area of the ribs. I have a hard time believing it was because I spaced one zometa iv to six months instead of three, especially due to its shelf life unless I’m understanding that term incorrectly, . I had a good long run on the Arimidex, extremely grateful for that, and am thinking it was the Arimidex that finally ran its course.
So now I'm on the Aromasin/ Ibrance treatment. And back to zometa every three months.
I've read numerous times on this forum of stage iv women who've had stable bone mets for years who stop zometa and/or who don't get scanned unless there are physical symptoms or a change in bloodwork. I had no physical issues and bloodwork was fine. But yet there was progression. Just wanted to share my experience.
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here is a study that says quarterly Zometa was just as effective as monthly Zometa. Haven’t found a study like this for Xgeva yet.
https://jamanetwork.com/journals/jama/article-abstract/2595526
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