Bone Mets Thread
Comments
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Emac, I’m not naturally an assertive person with medical people, but I do ask a lot of questions. But now, when that next Zometa infusion comes up I’ll definitely insist on the full 30 minutes. I don’t know for a fact that the 15 min infusion time directly caused my side effects but no more agreeable Rosie, lol. I have an MO appt in a couple weeks and will hear what he has to say. I’ll make a quick decision on whether to bring up the drip time of 15 min.
I’m happy to say that I got my treatment as planned today. My temp was normal at intake and labs were fine. I’m feeling much clearer headed than I was, although I still feel a little sluggish body-wise. I sure hope the string of fever days are over
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rosie24,
I would insist on the longer infusion time. I do push for that -- I had to laugh on my last notes that it said "patient requested longer infusion time." I know it didn't mean anything, but you get I did. I also drink a lot of water and make sure that I've eaten prior to the infusion -- and I take a Claritin.
Good luck.
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Hi Anne16 - Yes, in theory the extra saline is supposed to help lower my calcium levels but I’m not sure that one bag is doing much....when I was hospitalized for a few days, they ran continuous bags of saline (about a dozen or so) over that time period and it definitely made a difference....this hypercalcemia is serious business as I just learned last week from my kidney doctor (I didn’t have a kidney doctor until this event) that my kidney function went down to 6% when the MO said I had to be hospitalized....SIX PERCENT!! Both my kidneys had failed so now the MO is watching my calcium more closely....it is still running 10.7 currently and I think 10.4 is the top normal....so I still have something going on.
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After last week's vague CT and bone scan reports, I called my MOs office and since she was out Of the office, they set me up with an appointment yesterday. By the time I got there, she had reviewed my report and already asked the radiologist for clarification AND ordered a PET scan. In preparation for my appointment, I had done a thorough review of ALL my scan results and typed up a list of specific questions. When I was dx MBC, my lifestyle was somewhat nomadic so this is my 3rd MO and my records are scattered amongst 3 facilities. Doing this analysis helped me articulate well thought out concerns while also bringing in some facts that my doctors might overlook because, let's face it, nobody is going to review ALL my scans in their entirety to really understand my complete journey. For instance, saying that I have a lesion on T11 isn't good enough for me. That poor guy has been through so much and just how much more damage can it take before collapsing? It showed up on my very first scan over 2 years ago, has been radiated with limited success, has developed a secondary lesion and my last PET showed it hotter then ever. I want answers and I don't want the details of my condition to fall between the cracks.
I left my appointment with mixed feelings. Yes, my MO was proactive in requesting better results but she also made what I feel were some lame excuses for the radiologist. She said that they don't report on every lesion because then we can get caught up in the details instead of focusing on the big picture. Ummm…I'd like all the details and then I can back up and focus on the big picture all by myself. I paid for the test. i subjected my body to the test. I expect a comprehensive report. She also said that sometimes they count the vertebrae incorrectly because it can be difficult to determine for instance L1 vs L2. Sigh. Nonetheless, the bone scan will get a better read, we are moving my PET scan to a different facility and my list of specific questions is being given to the PET scan radiologist. She requested the PET stat but June 7 was the earliest I could get. On the bright side, my liver does seem to be getting better.0 -
Rosie - I can understand that. I'm not super assertive either and I'm in medicine. LOL. I don't want to be perceived as stepping on toes or being critical but at the same time, if I know something can be done differently and it works better for me I have learned to ask. I was having a lot of pain with my faslodex shots and had to ask that they find other spots because It had gotten to a point that it hurt to wear a belt or sit down against a hard backed surface due to the little lumps left behind. I also had to ask that they inject slower and allow for the vials to warm a little. It made a world of difference.
RK2020- I'm glad you are getting the PET scan and had some of your concerns listened to. I'm glad the liver is improving and I hope the PET clarifies some things for you.
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Hello to all. I’ve had MBC for nearly 5 years, but only Mets to one lymph node and to liver. About 8 months ago, the disease progressed to my bones (spine, ribs, hips). I’ve been on two lines of treatment since progressing to bones (Afinitor and now Gemzar/Carboplatin) which I don’t feel is working. I know I have at least three fractures in my thoracic spine and I believe more in my rib cage. Im getting a CT this week to get a better picture of what’s going on in my back. Hopefully I’ll change systemic treatments and get radiation to my spine as I’m in considerable pain which doesn’t seem to be helped with Opiates. Ugh. My question is, has anyone had fractures to their thoracic spine that has been helped with taking Kisquali or by receiving radiation? I feel very lost with bone Mets as it’s like a whole new disease I’m dealing with, compared to liver Mets. I feel like my doctors think I should know everything about bone Mets because I’ve had MBC for almost 5 years but that’s not the case. I feel like things move much more quickly with bone Mets. I can feel ok one day and the next it’s like the worst pain I’ve ever felt. Last week I was walking fine and this week. I need to use a wheelchair for my back.
I appreciate any feedback you all have to offer! I’ve learned more through this site,and from people like you, than I have from any one of my doctors or nurses. I wish you all a pain free and joyous day!
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It's odd about the nurses and the Zometa and the Faslodex. My first nurse told me people do better with a 30 minute infusion and extra fluid at the end- but, said I could technically do 15 min infusion and no fluid. Also one of the nurses said to warm the faslodex and inject super slowly - after that with new nurses - I just said I do better with 30 minutes and the fluid afterwards - and slow infusion of warmed faslodex and they went a long with it. It is hard to be proactive for yourself- I found it easier to be the proactive person for my mom's care. but, you know your body and you have the cancer- not them. sigh...
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KC54321 - You are in the right place for questions. Several of us here have had fractures to the spine and radiation. I have several throughout the spine but the only documented fracture is to T8 and I did have palliative radiation to that area. I saw a neurosurgeon because when it fractured I had some encroaching on the spinal cord but was not a surgical candidate. We just keep an eye on it. He told me that the fracture likely won't "heal" in the traditional sense because a large part of that vertebra was eaten by the bone met. I do have pain there but the spine is stable. I have to continually work on core strength and posture to keep from naturally wanting to curve forward. My back pain does sometimes make walking and long periods of sitting painful.
I have mets to the lumbar spine, sacrum, and right hip. I did radiation to the hip. I am 2.5 years on Verzenio/Faslodex and have been stable since my MBC diagnosis. My MO doesn't consider me NEAD as I still have activity on bone scans but my last PET showed no progressive disease. I'm reasonably functional. I think the radiation to my hip and femur caused the muscles to be chronically stiff. It does that. I use heating pads, baths and stretching in addition to tylenol/ibuprofen and Norco when needed. I think the hard part about bone mets is that the painful ones really limit mobility. Sorry to be so verbose. I hope it helps and that the Kisquali offers some reduction in the tumor load for you.
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Thank you so much Emac877, for sharing your information. This is all so tough, for every single person afflicted with this horrible disease. I’m so glad I have found support here.
-Kc
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Just wanting to get the word out about a new weekly Zoom meeting getting set up. You do not need to be working to attend this meeting but the intention is to have a time that will work for those of us that can't make the current Zoom meeting times that are held during the work day. Here's a link to the thread for the input on a time and day that works for you: https://community.breastcancer.org/forum/8/topics/882768?page=1#idx_3 . Thank you!
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Hi everyone,
Last week, I had 5 days of radiation to my L2 and L5/S1 vertebrae to try to knock out some back pain, and these were two active areas left after a mostly quiet PET scan. I’ve had a lot of pain in my spine and radiating down my legs, that seems to be improving. I’m also nauseous and have diarrhea. I’m on day 2 post-radiation, and still nauseous and tired and diarrhea. I thought this would be so ea because before, when I did whole breast radiation, that was 33 days and I don’t remember feeling this bad ever! Does this sounds normal ? I really feel like a cancer patient now.
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The D and nausea are par for the course for an L5/S1 area but should subside in a few days. My worst day was I think day 4 of the radiation but I remember at least a week after I had bouts here and there and definitely nausea. They are radiating near the digestive system so will get some scatter. Take immodium as needed and call in for anti-nausea pills if its really bad.
As for pain down the legs, etc same thing applies although that will also resolve over time. The radiation will continue to work for weeks afterwards so everything is a bit irritated right now. Its highly targeted radiation in a high dose, unlike whole breast which is spread over a wider range of tissue.
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kkcita - I handled 33 rounds of whole breast with zero complaints. Then I had one large dose on a femur lesion. Again no problem. Then I had them zap my thoracic spine. Thats when the SE started to hit me. I had temporary pain down my legs and pelvic area, esophogitis and mild fatigue. The next time I had radiation, my fatigue was severe and lasted about a month. I don’t see myself getting any more radiation. I think my body has had enough. I hope your side effects resolve quickly.
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Kkcita, it really is a function of where you are radiated rather than the radiation itself in my experience. Certain areas are more prone to side effects than others. The early stage disease radiation can often cause fatigue but the spine rads are a different kettle of fish, depending on what's close by and within the field. I've been treated numerous times for issues that have cropped up as a result of my bone mets. Some the relief was almost immediate and I had zero side effects and others have had more of an impact.
Your experience sounds normal to me. I had radiation to my lower lumbar and made the mistake of going back to work. 😳 I got to my office and thought hmmmm I don’t feel very well. Beetled to my car with a plastic bag in my hand and was sick before I made it out of the garage. Apparently the radiation caught a bit of my stomach. I’m currently recovering from rads to the c-spine/upper thoracic area - new lesion that was causing right shoulder pain and numbness in my right arm. I have fatigue (although chemo is likely contributing to this) and have a sore throat which is getting better. Rads to the base of my skull caused me to lose my sense of taste for about six weeks. The body is an amazing thing as we never know which nerves will be impacted but thankfully, so far, the side effects have been of short duration. I’m happy to see some improvement in my right hand numbness but it’s not back to normal yet. Hopefully the nerve damage from the lesion isn’t permanent.
Hope things improve for you quickly.
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kkcita - and sadiesservant - you have no idea how much needed to see your post right now. super similar circumstances / symptoms feel like dying. i appreciate so much knowing this *is not my imagination*.
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It’s been a while since I’ve been on the bone mets thread. I see some of you in other threads.
I’m not sure if anyone will be able to answer my question, but it’s worth a shot. I have widespread diffuse mets throughout my whole spine from skull to femurs. I’ve been having some numbness and tingling in my hands that comes and goes, so my onc sent me for a cervical spine MRI. I am very stubborn and do not take meds for pain very often. If I do, it’s either Naproxen or Motrin. Here are the results. Am I in denial that I’m risking a break or is it just old age stuff going on? How concerned should I be
Results as follows:
Findings of diffuse skeletal metastasis are again noted. Diffuse congenital cervical spinal canal narrowing is again noted. There is disc space narrowing and disc bulging at the C4-5 level resulting in spinal stenosis and mild cord compression. There is also generalized bulging of the C5-6 disc resulting in spinal stenosis and cord compression. A small left subarticular to left central broad-based disc protrusion contributes to spinal stenosis at this segment.
There is a central C6-C7 level disc herniation along with disc bulging resulting in central spinal stenosis and cord compression. There is no evidence for cord signal abnormalities. There is mild bulging of the T1-T2 disc. The visualized posterior fossa structures have unremarkable appearance. There is no evidence for neural foraminal stenosis.
IMPRESSION: WIDESPREAD AND EXTENSIVE SKELETAL METASTATIC DISEASE AS PREVIOUSLY DOCUMENTED
2. DIFFUSE CONGENITAL SPINAL CANAL NARROWING COMPLICATED BY CERVICAL DISC DISEASE AT THE C4-5, C5-6 AND C6-7 LEVELS RESULTING IN ADDITIONAL ACQUIRED SPINAL STENOSIS AND CORD COMPRESSION. THERE IS NO CURRENT EVIDENCE FOR CORD SIGNAL ABNORMALITIES. THESE FINDINGS ARE SIMILAR TO AUGUST 27 2020.
3. DISC PROTRUSIONS ARE ALSO NOTED AT THE C5-6 AND C6-C7 LEVEL CONTRIBUTING TO SPINAL STENOSIS AT THE SEGMENTS.
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Hi kbl,
I'm not sure that I can answer your question, but I would think the numbness and tingling is caused from the stenosis and cord compression. I have a fracture at L2 with canal and foraminal stenosis and the top of my right thigh is numb from hip to knee. I think if you were at risk of a break, it would say so on the report; my initial one said that L2 would be prone to pathologic fracture (and then it did, during radiation). If you want to compare an MRI with fracture, here's mine:
FINDINGS:
THORACIC SPINE:
Alignment of the thoracic spine is within normal limits.
Vertebral body height is maintained.
Mild multilevel disc space height loss is present.
Multiple enhancing metastases throughout the thoracic vertebral
levels. No consequent pathologic fracture or canal compromise.
Thoracic cord is normal in signal intensity.
No acute findings within the paraspinal soft tissues.
LUMBAR SPINE:
5 nonrib-bearing lumbar-type vertebral bodies are present.
Alignment of the lumbar spine is within normal limits.
Multiple enhancing metastases throughout the lumbar vertebral levels.
These involve nearly the entire L2 and S2 vertebral levels.
There is consequent pathologic fracture of L2 with retropulsion and
anterior epidural disease, with consequent moderate canal stenosis
and moderate bilateral foraminal stenosis at L2-L3 with crowding of
the exiting L2 nerve roots.
Multilevel disc space height loss is present.
Conus terminates at L1.
Cauda equina demonstrates normal appearance.
No acute findings in the paraspinal soft tissues.
IMPRESSION:
Multiple enhancing metastases throughout the thoracic vertebral
levels. No consequent pathologic fracture or canal compromise.
Multiple enhancing metastases throughout the lumbar vertebral levels.
These involve nearly the entire L2 and S2 vertebral levels.
There is consequent pathologic fracture of L2 with retropulsion and
anterior epidural disease. Consequent moderate canal stenosis and
moderate bilateral foraminal stenosis at L2-L3 with crowding of the
exiting L2 nerve roots.0 -
li77 - thanks for including your report. Since I’ve been told that I have mets on almost every vertebrae, I often wonder how strong my spine is any longer. It was good to see how much detail the radiologist can see in an MRI.
KBL - Can’t really help you but you do seem to have a lot of degenerative disease. As far as your tingling goes, since January 1, 2022 I feel an electrical type zing in my abdomen when I bend my cervical spine forward. It is not painful but obviously something is not quite right. Last fall I had rads on my lower cervical spine and my Jan 10 scan indicated a new met on C1. Since this sensation started, none of my scans (PET, CT, bone and MRI) have shown any reason for this sensation. The C1 met is now resolved but the zing continues. My point is, the spine and it’s nerves is complex and sometimes we have damage going on that even scans can’t explain.
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Thank you, li77 and rk2020.
Li77, so sorry you have a fracture. I am a bit concerned about fracture because I keep picking up my 33-pound grandson. Lol. Have you had any physical therapy, and if so, has it helped? I’m thinking about it.
Rk2020, I’m glad the zing isn’t painful. I appreciate you letting me know what you’re going through as well.
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Kbl, I have not had any physical therapy although I'm not ruling it out once this fracture heals more. I had two epidural steroid injections (one to L2 and one to S2), which helped tremendously, and I'm on Celebrex and Gabapentin. I feel much older than I am; getting up from the couch is a challenge now. Lol. My 20-ish pound dog recently had surgery (to remove a cancerous mass from her intestine), so I've been picking her up and carrying her up and down the stairs. I can't imagine 33 pounds, but a kid is much easier to carry (not my 10 year old though!).
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kbl—- this is what my first spine X-ray results were prior to my MBC diagnosis. I had “hurt” my back and after a couple of weeks could barely walk so to the PCP I went. He took an X-ray and called me that afternoon telling the cancer had spread. I had rads and had a bone doctor review scans to make sure I wasn’t about to break my spine.
This is what the X-ray report stated:
COMPARISON: 2/6/2019.
FINDINGS: There is mild superior endplate compression deformity of T12 which may be new compared to February. Correlate with physical exam findings. Cross-sectional imaging, preferably MRI may be considered for further evaluation.
There is moderate thoracic and lumbar disc degeneration and accompanying facet arthropathy. No aggressive bone destruction.
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Kbl - I have Mets to my spine, sacrum, hips, ribs and skull. I’ve been in pain for about 6 months with three fractures in different locations of my spine and fractures in both rib cages. I think, in the beginning of my bone Mets diagnosis, I was pushing really hard to stay active and that’s how I ended up with fractures. Too many rides on Space Mountain at Disneyland I guess. While my systemic treatment failed, i had palliative radiation to most of my spine, including 1-7 of my C-spine, to my tailbone area and hip. The radiation helped a lot on those areas. I do not like taking Opioids and try to just take Alleve. I now have a back brace, that is bulky, but does provide support. It’s my understanding that spinal cord compression can lead to paralysis so I would suggest letting your MO know about the numbness/tingling. I’m sure they’ll want to monitor that.
Please take care- K
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I had existing spinal stenosis/canal narrowing at L5/S1 prior to dx due to a sizeable disk prolapse and its still there - MO just closely monitors with a full spine MRI every 6-9 months or so as I also had a largish met in that area which they radiated. The stenosis has always given me a numb/prickly large left toe and now some of the top of my left foot. It doesn't bother enough to take drugs, but I know its there. I also apparently had an L3 fracture at some point in the last 8 months that I never felt!
Look up a dermatome chart online - that will show what areas of the body are impacted by stenosis/degenerative changes in which parts of the vertebrae.
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Thank you all for helping me to understand. I will ask about a whole spine MRI periodically. I don't know if Medicare would cover that.
I have been offered radiation to my hips, but I haven't felt the need yet. I will try not to pick up my grandson. So hard. I can't imagine picking up a dog. They can't help. Li77, I’m sorry your pup had cancer. Ugh
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Has anyone had cyberknife to the ribs near the spine? I finished 5 hits of radiation to T8 and T9 on Mar 30, 2022. The pain was lessening and lately has gotten worse again. Plus, now a section on the right hurts now. I just had an MRI and bone scan few days ago and says nothing is spreading. The MRI noted edema in the radiated section or near. I'll be emailing the radiation folks on Monday but I'm very confused.
Would there be a situation where radiation could cause side effects that make pain bad again. I was so hoping radiation would cut this pain and I feel very despondent. I appreciate anything anyone can talk about.
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Kbl,
Did your onc. Give you any suggestions on treatment for your Mets? I’ve had injections many years ago pre-cancer, for bulging and herniated discs and it helped a ton. Of course this is much different and I’m not sure what you’re options are given the situation. I’m hoping your onc. Has a plan in place to help you. Keep me posted. I’m no help whatsoever, But I do hope you find the right treatment.
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DDIL, I see my onc on the 28th. I may see if physical therapy could help. My hips have been killing me for the last few days. I fell with my grandson again the other day and not sure if that is why. I was low to the ground. That’s the third time I’ve fallen with him since they moved in. I guess I really need to be more careful. I also am trying not to pick him up. So hard.
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KBL. I've been doing Qigong to help with balance. So easy and gentle. I do videos on YouTube. Maybe ask the pt folks. Sorry to hear about the pain.
Susan
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kbl, I'm sorry about your recent falls. It must be hard to not pick up your grandson.
gonegirl, I'll have to look up that program for balance. Thanks for the suggestion.
Carol
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Gonegirl and Sunshine, thank you. I am going to look at the Silver Sneakers program. It's free through Medicare, and it's worth a shot. I used to exercise a lot until my cancer was actually diagnosed. I'm afraid my pain will get worse, so I need not be so sedentary. I do walk every day, but it's not enough. I can do on demand things too. I've tried yoga a few times, and I know that's just not my thing. I will try something different. I haven't fallen because of losing my balance. My grandson starts to trip over me or I start to trip over him, and instead of landing on him, I go over the top or he grabs on to me and I've gone down. Oy! My bursitis in my hips has flared, and I imagine it's from the spill I took the other day.
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