Bone Mets Thread
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I eat it -I am on xgeva and do take a calcium supplement With D3 and extra Vitamin D3
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Candy & Sadiesservant: I hurt in many places as well. Not the “stop me in my tracks” kind of pain I had before surgery and treatments, but pain nonetheless. More like twinges of pain. And the pain started after a period of not having pain, albeit that was a short period without pain. Afterall, I just started treatments last March. And my pain most definitely is worse when I’m in bed. My CA27.29 is ticking down so I’m just going to resolve myself to live with the pain.
To everyone struggling right now...BIG virtual hug! I wish I could make your worries disappear. At least we’ve got each other. ❤️
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Hey ladies, COVID related question.
How are folks feeling about not seeing their MO in person? My last appointment in May was a phone call. I thought that my appointment next week was in person but just had a call from the Cancer Agency to advise they were making changes and it was up to me if I wanted to see my MO in person or make it a call. In my mind that puts me in a very awkward position. I don't know if any of my symptoms justify an in person visit but would have thought that an exam would be important at some point (last physical exam would have been about 8 months ago).
My TMs although not very predictive are remaining stable and low. Last scans in May were also stable but I am not sure that they necessarily tell the whole story, particularly since they were CT of chest abdomen and don't include my skull base mets or the hip areas, both of which have been giving me grief. I do have a number of issues but suspect they are all related to aging (i.e. degenerative changes mentioned above) or side effects from the Verzenio (fatigue and gut issues).
Given the limited time to think it through, I decided that it could be a phone call and then, if he thinks there is justification, he can make the call on an exam. However, I have to admit that I am uncomfortable with this situation. It may be just optics but I like seeing my MO in person and the comfort that comes from him checking me over. I also feel in some ways that if not now, when? Where I am in Canada the numbers are spiking again now that they have opened things up a bit. I anticipate a bigger wave in the fall at which point face to face meetings will be riskier.
I know others have indicated they were happy not to go to the hospital so wondering if I am just being a head case...
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Sadiesservant - I have been seeing my MO “mask to mask” every month. I think she needs to see me and put her hands on me. I just feel better about that. They are super careful of COVID-19 guidelines. I also don’t live in a super densely populated area. I also have to go in for faslodex and xgeva shots, so......
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Thanks HG.
While overall we have a pretty good system here, it is definitely fragmented. My GP administers the Faslodex shots, not the Agency as it is not covered as part of the public plan. And here, the Cancer Agency is part of a distinct health authority, separate from our local health authority. So when I was getting bisphosphonate infusions (we hit pause due to concerns re: kidney function) I went to the hospital, not the Agency.
I do worry sometimes about falling through the cracks as my GP doesn't want to touch things that he thinks is related to my cancer but my MO doesn't really manage pain - that's my GP's job. You see the problem...
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Sadie, I'm in VA and so far, I see my MO face to face every 3 months after my PET scan. I'm glad.
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Safiesservant - understand the dilemma! It’s unfortunate. For me it’s a one stop, so easier and safer
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Sadiesservant,
It's funny you raise this today. I just went through this in setting up my September appointments. Since February, I think it was, we've been doing the Telehealth thing. Honestly, I haven't minded it because I can sit in my own house, see my MO and talk to her, and don't have to drive. But in September, we've set up a face to face. Like others have said, I feel like I need an actual exam. Also don't our doctors truly need to see us? We might look great on the computer screen, but heck -- we might be jaundiced or something else that doesn't show through. My center is very careful with people coming in -- NO visitors are allowed into the building that I go to for my faslodex shots, my blood work, my oncologist, etc. So I'm happy that we're doing it this one time after so many months of not doing it.
I completely understand what you are saying, and yes, I think we are all going to have a rougher time in the fall.
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And just how much can a physician get from a voice on the phone? I just feel this puts an unacceptable amount of onus on the patient. In the absence of scans, if you don’t say the right thing.... I’m pretty vocal but I think of what my mom would be like. We’d be rushing her to the ER before she would ever tell a doctor that she was anything but fine!
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I can relate -- my knee jerk reaction when any doctor says to me -- how are you? -- my response is usually "I'm fine." Stupid, I know, but I think that if you are really in their face, in person, they should be able to sense more about you.
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Anyone out there who has mets to their cervical spine -- specifically to C1 or C2? I just got off the phone a little while ago with my radiation oncologist (yes, she called me on a Friday night) who had been reviewing all of my scans for me, and who had ordered an MRI of my full spine to see if we could get some more info about my bone mets. The call was about the spine MRI. Turns out that she doesn't think I have that much metastatic disease in my spine, but I have a whole heckuva lot of degenerative disease. But the big finding is that the report says that I have a met on C1, which is the top of the cervical spine. She said that that was NOT good if it bears out, and that it might need some radiation because of what/where it is. So now she wants me to have an MRI of my cervical spine -- it's called the MRI Skull Base Protocol -- to look at C1 more directly. Now I'm nervous. I dug around a bit, and found two articles that said that mets to C1 is very rare (lucky me) and occurs in only .5% of all spinal metastasis.
So taking a shot here -- anyone every experienced this or heard of it?
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Sadiesserva, I'm also in Vancouver and treated at the bcca, when I started to have more pain my mo referred me to the pain management/palliative team (also at bcca) to deal with pain meds. They called me immediately and had some appointments with their doctors while I needed it. When pain was in check they told me to call anytime I need them.
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Interesting Vilma. I’m on the island and that hasn’t been my experience but then, for the most part, I have been managing. As I said, it’s complicated as much is non cancer related but I am sometimes frustrated that we are not treated as whole beings...
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Bev, I haven't had any experience with C-1 issues, but your RO is impressive. Thank goodness you have her in your court. Keep us posted.
On other pain, you "older" ladies have struck on something that has been frustrating to me personally. When I had a bone scan in 1991 at first BC diagnosis, the tech said, "You have a lot of osteoarthritis in your skeletal system". I was 44 and had no pain at all, so I filed the information away for future consideration. Now, at 74 with 3 1/2 years of stage IV MBC behind me, I am creaky and stiff and never know what might just be age-related/osteoarthritis and what might be cancer-related. I have found that when I mention general stiffness and aches to my MO, she smiles sympathetically but moves on with other questions. I finally have a fabulous primary care person, and I find that she is interested and trying to find some help (we are trying turmeric capsules, as I don't want to take any more pills than I have to).
It's virtually impossible to know which pains are just to be endured as part of aging and which should be sounding an alert. A difficult issue for sure.
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Joyner- I am 57 and have had OA in my knees for years but nothing else anywhere. I was active - yoga teacher, practitioner, hiker, cyclist etc. After my diagnosis of MBC 1.5 years ago, I started to develop degenerative disc disease in my thoracic spine (MRIs) and with it, pain. My MO, who is new (I moved away from my first and now switched from another for better care) first commented "age-related", but then added that multiple scans have also been called into b question. I am not really on board with "age-related", so it has me wondering. The first MRIs I had 1.5 years ago never picked it up or it wasn't reported, but a year later its this bad?? Time for more questions to my MO. I do understand we are throwing alot of toxic stuff at our poor bodies, but its a big QoL question.
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HopeandGratitude,
You raise a good point with the scans. My original BC diagnosis was in 2003. My MO at that time wasn't that much of a fan of scans, but I still had a fair number with early BC. After my first metastatic diagnosis in 2006, again, I had a series of scans from 2006-2008. To my recollection, that's when the mention of degenerative disease started showing up on reports. But then I didn't scan again until 2018 when my tumor markers started going up. Have had a ton since then.
I actually was wondering not if it was the scans, but if it was the drugs -- I was on tamoxifen from 2004-2006, and then letrozole from 2006-2019. I see that you've had a long journey, too. Could that be messing with the spine? But again -- what's the alternative to either? And which tests or drugs are responsible? MRIs don't use radiation, but they use gadolinium.
It's a difficult question.
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Interesting questions. I’m 58 and have also had a long journey with BC having originally been diagnosed in 2001. As I mentioned, I know the chemo did a number on my hip. I was then on Tamoxifen followed by several years on an AI. Hmmm...
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Good discussion.
Concerning pain issues- Yes it is hard to determine the cause of pain. I have untreated RA, the AI use, and the bone mets. Hard to point to one area of pain and say "that is the cancer", another area and say "that is the RA". I did post on here a page back that I have spine and left hip/butt bone pain (I think posterior pubic bone, pelvis). It is worse at night-- horrid night before last. Last night I slept sitting up with pillows propping me up. I did not have as much pain. So.... I think it is something mechanical. Either the arthritis or the bone mets have compromised the bone. Positioning/pressure makes it feel worse. Yet again, not much to do I guess. I am going to talk with new MO and get her suggestions, but sounds like pillows and poor sleep is all I can do. (Tylenol doesn't touch it).
Concerning seeing MO in person- I do not remember the last time I was actually examined by my MO. What I mean is, a hands on exam. I did Telemedicine with my old MO in March and April due to Covid. I saw her in June in person, but no exam. I do not think we did exam at Jan visit. Yes, she saw my face (no jaundice), but she didn't seem to do hands on much--listen to heart/lungs, feel lymph nodes, do breast exam, feel belly. I will see how new MO does things at her visits---they say I will see her every 3 months with scans, unless something comes up. I am doing my shots and labs locaily, so my new MO will monitor my lab results remotely each month. But should she "see" me more than every 3 months???? When you guys say your MO's do exam, what all does that include? I do like the ease of Telemedicine with Covid, but I do think our docs need to see us in person the majority of the time. We do have a serious disease, not a hangnail.
BevJen- On my baseline PET, when we first found the Stage 4, it said "osseous lesion on C2". I have only had 1 other PET-- Sept 2019--and it said lesion not seen- no uptake. My routine CT's do not go up that high. My MO never seemed concerned about the C2 met.
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Candy, mine is pretty simple and basic: the typical stethoscope listening front and back and palpating. I'm not sure that there's much more, since all the vitals have been taken earlier during check-in.
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Mine typically checks lymph nodes in neck, armpits. He listens to my chest, checks for painful spots on my spine and checks my abdomen for any sign of hardness or tenderness in the liver.
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Yep....lymph nodes, too. Forgot that part.
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Hi everyone, I had my biopsy yesterday, they biopsied near me left hip/pelvic bone area. I thought it would hurt more, but wasn’t too bad. I think that’s the last of my test , for now. I met with radiation oncologist and meet with a neurosurgeon Monday, to see if they can debulk the lesión in my skull near my nasal Cavity, but regular MO said he needs results of biopsy too see what type of tumor it is so he knows what type of chemo treatment to give me. I was ER+PR+,HER2- before. So we will see, I do feeel my anxiety has gotten a bit better. He did say that because I’m younger (41) that sometimes the cancer is more aggressive, so that makes me nervous. I too have lots joint pain, I walk slow, hopefully it gets bette.
What supplements are you girls taking ?just to get ideas
Thanks. hugs ladies.0 -
Hi, everyone. I had my sweet grandbaby for the night and wasn’t able to come to the forum. I missed a lot. I wanted to thank anyone who said they were thinking of me and those who answered any of my questions. I read all the posts.
I started taking a vitamin D3 and calcium supplement because I’m going to be starting Zometa on the 24th. I know someone asked that question.
Please forgive me that I couldn’t answer directly. You miss a lot being gone one day.
Another question was asked about the regular exam. The doc listens to my lungs to make sure they’re clear and feels my neck, under my arms, and maybe something in my ankle area
BevJen, good luck finding out about C1. I hope it’s not a met, but it’s best to find out so they can do something about it.
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My exams are the same as what KBL said.
MRI with skull protocol (whatever the heck that is) scheduled for Sept. 2. That was the soonest day I could get that worked for me. Loads of fun, bc I have my every three month MRI of my abdomen/liver on Sept. 4th. I'll be on a gadolinium high.
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My MO does a hybrid now of telemedicine in her office and live exam. The nurse is live with me to take vitals and ask questions, then she leaves, I take her seat at the computer where my MO then appears to go over scans and talk to me. MO then arrives in room live to listen to my lungs, palpates lymph nodes, remaining breast, chest, belly, back and checks my calves and ankles for swelling. She answers any further questions I have. It is clearer to talk with her on her computer vs mine at home. I do like seeing her in person better.
On supplements, I take calcium + vitamin D and extra vitamin D. I'm on Xgeva now, but I also took these when I was doing Zometa infusions.
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Bliss,
Wow, that's an interesting set up for MO visits. Seems like a lot of shuffling around but if it works, I guess it works.
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Bliss- That is interesting. If your MO is in room anyway for exam why not discuss results and talk while she is in there? If it works ok, then that is good. Just strange because you are exposed to germs, etc when she is in there with you doing the exam.
It will be interesting to see how my new MO handles things--- exams, telemedicine during next few months with cold/flu and Covid season. I have appt with MO Sept 28 for scans and office visit. Then next scan would be end of year or probably after the Holidays-- beginning of the new year.
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Yeah, I thought the set up was strange the first time, but I guess the thought is the less exposure time she has to each patient the better.
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Wow- It's interesting that so many of you are still having telemedicine visits. I just assumed that when stay at home orders were lifted, the telemedicine visits would be reduced, if not eliminated. Maybe where you are located and the number of cases in your area plays a role. I had some telemedicine visits back in late March and April. My last appointment in Florida was May 13 and it was face to face. I already had to be at the facility for bloodwork, Fulvestrant and Zometa so that likely was the reason to not choose telemedicine for that particular visit Now that I'm back in Wisconsin, I've had 4 face to face (really mask to mask) visits with my MO. I’ve never felt at risk
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ya, I’m in Southern California, where covid is high, but I do have mask to mask visits.
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