Bone Mets Thread
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Hi, Sunshine. I took Claritin and Tylenol before and after. They didn’t help at all. How long do they do your infusions for, 15 minutes, 30 minutes, or an hour? I sure hope it doesn’t happen again. I’ll gladly take an hour if it won’t happen. She told me if it happens again, we may switch.
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Hi KBL. Sorry they still haven't figured out the issue with swallowing. With regards to the C spine mets.. I also have them. Funny that my MO said it was rare to have them there and that's why they don't typically scan the neck/head (I have skull mets as well). He usually only orders CT of chest/abdomen. But seems like a lot of us have mets on the cervical spine...
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Sadiesservant, Thank you. I'm just going to watch with the swallowing. I can still swallow, things just get stuck for a second on the way down, especially if they're dry. It's just weird.
It seems everything I'm going through is rare. Mets to my stomach is also rare. I want out of the rare club.How did you find the mets to your scull? Were you having symptoms? I don't think we would change anything at this point because my tumor markers have dropped a little more, and I really have to count on them a lot to tell me what's going on.
I'm glad I know it's throughout my whole spine, and I'm especially grateful that the pain I have is doable right now. Do you have a lot of pain with yours? I wonder if it's because I have so many all up and down and they're smaller than someone who has larger tumors and they press on things. That's just a guess on my part.
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KBL,
Part of it is that you have sneaky mets. ILC hides well and seems to favour membranes. I actually sometimes wonder if there are lobular elements to my cancer as I started out with it in my right pleura and then had early progression to the capsule of the liver. Not the liver itself but the membrane that surrounds it. My cancer seems to be slow growing which is often the case with lobular. I also seem to be in the "rare' club.
They found the mets at the base of my skull when I started having trouble last year with numbness and tingling in my right arm. It went on for weeks and they were concerned that it might have spread to my brachial plexus so ran an MRI. That came back negative but a subsequent CT showed the cancer throughout my C spine and at the base of my skull. The arm numbness subsided after a couple of months (likely due to degenerative issues in my neck which caused some inflammation) but I have period when my right jaw and side of my face are numb. It's not all the time so I am not inclined to radiate just yet given potential side effects but am keeping a watch on this as, if things progress, it can cause some significant impacts in terms of vision, etc.
I have had and continue to have pain. I've had three rounds of radiation to various spots that have given me trouble. I had some pretty significant sciatica which was treated with rads to my low back and went through a period when I was practically limping as a result of mets to my right hip. Rads helped a lot then but more recently, in the last couple of months, pain in my sacrum/lower back, hips (mostly right) and neck has become more of an issue. I have a bone scan scheduled for three weeks from now so we will see if anything is brewing but, of course, I'm also not immune to the back issues that often accompany aging. It's always tough to sort through what's what with this disease!
Glad to know you are not experiencing a lot of discomfort.
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KBL are you taking Claritan?? When I used to get Zometa I would be sure to take it for the whole week. I took Claritan D bc thats what I took before cancer. I also took Motrin to help with the bone pain. Also...are you planning on any radiation to the cervical?? I am consulting with another RO this Friday about possible rads to C7, liver and sacrum.
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Sadiesservant,
I didn't know your whole situation with the cervical mets. On Wednesday, I am having an MRI with skull base protocol bc when I had an MRI of my full spine a couple of weeks ago, they thought they might have seen something at C1. My RO wants to get a better look at it. She told me that if it is a met, then she would probably recommend radiation to that spot, or if nothing else at least close monitoring (which it sounds like you are doing). Again, I had read that this was very rare too. I'm still not convinced that it's a metastatic area bc I was rear ended about 5 years ago and my head whipped around like a lasso -- I wasn't ever treated or seen for that bc of other stuff going on in my life at the time, but since then, I have not been able to really turn my head to, for example, look for oncoming traffic or whatever. So I"m doing the MRI/skull protocol, but I'm not sure if it's actually mets there. It will be interesting to see. I don't think it will change my treatment plan, at least for now.
Your BC certainly does sound like it has lobular features bc of where it's gone and the fact that it's so slow growing.
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Sadiesservant, thank you for that information. It will help me to know what to look for if I ever have the numbness and tingling.
I do have widespread pain throughout my back and hips. it’s just been there since 2013, so I guess I’ve learned to live with it. I have the most pain in my sacrum and hips. My hips are so tight I walk every day just to make sure they’re moving. I haven’t had any radiation, although at my last visit, my doc did mention it. I don’t know enough about it and I’m too nervous to think about trying it just yet. I don’t want it to cause more problems than it helps. I can’t get it in my spine since there is too much.
Have you had a bone scan before? I’ve had a few, and although the cancer is everywhere, it doesn’t show on them either.
I’m sorry you’re having pain, and I hope they can do something more to help. I appreciate you answering my questions
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NicoleRod, I took Claritin a few days before Zometa and a few days after, just regular Claritin. I will try it again next month but take it longer. I try to stay away from Motrin now because of the cancer in my stomach and the gastritis.
I don’t think I’m a candidate for any radiation on my spine. There are numerous lesions from the top to the bottom. I still need to educate myself more on radiation. The doc just mentioned it as a possibility for my sacrum, but I’m not ready yet. My hips and sacrum are the worst, and I just try to keep moving.
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BevJen, that's quite a coincidence as I was rear ended by a hog fuel truck when I was in my early twenties so issues with my neck are not new to me. That's why I am taking a watchful approach to the skull mets. I don't want to pull the trigger on rads unless I am sure as the risk of complications is higher (and the short term side effects didn't seem like a walk in the park... sore throat for up to a month!). Having said that, this seems different than previously. We'll see.
KBL, yes, I have had bone scans before and to be honest I typically roll my eyes internally when my MO suggests them as they seem pretty useless for me (I wonder if this also points to lobular elements). They have consistently come back saying that they significantly underestimate the burden of disease. In fact, my RO commented that my bone scan could be her bone scan but my CT? Shows bone mets throughout my spine, hips, ribs, sternum, clavicles, etc. Everywhere!
I wouldn't discount radiation to your spine. The intent is not curative, it's to control pain. Sometimes there is a met which presses on something and it causes trouble. As I indicated, my first radiation treatment was due to a major case of sciatica down my right leg. It was ridiculous as I would get up in the morning and couldn’t sit. I had to lean over the pony wall by the toilet bouncing my leg up and down until I could get control and manage the pain. I told one of the GPs at the clinic that it was one time that I wished I was a guy so that I could go standing up! But one zap and I had almost instantaneous relief. It can be very helpful and, for the most part, there are few issues (although nothing is risk free).
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SS,
Yup sure sounds like lobular. My TMs started going up in May of 2018 (after 12 years of metastatic stability). Had bone scans in May, October, and following May -- ALL of the bone scans showed extensive arthritis/degenerative disease -- no identification of any metastatic lesions. That was through May 2019.
I recently had a repeat bone scan, and this time, it did ID numerous specific areas. I wonder if that was because in the interim, I had had a TON of CTs and the radiologists finally realized that hey -- there's something more here. However, in having my RO review my scans and also looking at my recent MRI of my full spine, she did say that there was a lot less metastatic disease there than she would have expected and a ton more of degenerative disease than she would have expected.
Never easy, is it?
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Wow, I’m in the rear-ended club too. That’s what started my whole crazy journey. I had the accident in 2013. Unfortunately, I saw them coming and pressed down on the brake pedal as hard as I could. My advice to anyone who sees them coming, don’t do that.
Sadiesservant, I know exactly the pain you’re talking about with sciatica. Mine was when I would push the gas pedal in my car. It hurt and burned like hell all of the time, but when I did that and would drive to work, which was 24 miles one way, I would get to my office on the 28th floor and drop to the ground sobbing. It was excruciating. That was in April. I was just about to go out on short term because I couldn’t take the pain any longer when I had that MRI in August and started my cancer scare with the thought of multiple myeloma, which we now know was breast cancer in my spine.
How strange is it that all three of us were rear ended? We have more in common than we think.
That’s a good thought to keep radiation in my back pocket if the pain I have starts to get worse.
BevJen, I’m sorry you didn’t get treatment back when you had your car accident. I don’t think any of the treatment I had worked anyway. I was in physical therapy for a long time, but here I am still having issues.
Thankfully, the sciatica has calmed down, but it still creeps up every now and then, the burning and the pain.
Please keep me posted on your bone scan. I haven’t had one since 2016.
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Hey I was reading the thread and wanted to jump in. I had 5 radiation treatments to 2 cervical vertebraes and 2 thoracic vertebraes for pain control. I have multiple bone lesions but they arent big but these caused me pain so we decided to do the treatments. I also had just failed Xeloda so I was getting a port and gonna start Abraxane. We did radiation first. Went well. Then the sore throat and the thrush and the inability to swallow. I was unable to eat food for 3 weeks due to pain. Im not talking about a sore throat Im talking about taking pain meds so I could sip water. Today i noticed that I an swallowing water better. Ive lost about 20 lbs and plan to see speech therapy to get a modified swallow cause Im choking on my saliva and cant swallow my saliva. But I will say it helped my pain issue in my spine. I will have to really be hurting to get radiation again.
Healing hugs for all.
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my serum calcium levels are checked because I have kidney disease along with my cancer diagnosis. So my kidney doctor found the high calcium.
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BevJen- MRI's this week? In your pocket.
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Sadie...I don't believe radiation is just for pain..it does also kill the cancer..or at least that is what the RO told me about it in my sacrum...it will not be active cancer once it is radiated.
Mel...in all the people that told me they had radiation to the cervical I never read about anyone having the swollowing issue...so sorry you are going through that. Did they say that is a common side effect? I don't think I can go 3 weeks without food since I am 94lbs...
. Mel what did they do SBRT(cyber knife)?I want to the get the rad so that it kills the cancer there not so much for pain..but waiting and leaving it ...well Catch 22...if ya wait and then the bone fractures you risk it fracturing into the spinal cord...if you don't wait and do the rads before that ...then you risk side effects....
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Nicole,
My comment was in the context of our discussion with folks with extensive bone mets. There is no facility in trying to radiate every spot when it is all over the place. That is entirely different than a situation were there are only one or two discreet mets. And yes, it does kill that tumor which is why you typically get the pain relief.
With regards to Mel's difficulty swallowing, that was one of the issues that my MO raised when we were discussing possibly treating my skull base mets. It's a sensitive area, particularly the further up the C spine you go, and there can be some unpleasant side effects. Having said that, if my skull base mets progress it can lead to vision problems and other nasty impacts so I am watching closely.
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Sadie...ref multiple spine mets..gotcha
Yea mine is Sacrum...and C7.... I am very torn.
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KBL - I do the Zometa over 30 minutes and then get the rest of the bag of fluids afterwards. I no longer take the Tylenol, but I take Zyrtec daily for allergies anyway and now nausea is my main side effect. I eat ginger chews during the infusion as needed. Nausea is much worse if I wait til afterwards to take the ginger.
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Nicole, yes radiation will kill the mets but I have many bone mets. They prefer a systemic treatment such as chemo for multiple lesions. They will radiate for pain or if there is only a few lesions. They cant radiate all of the lesions at the same time. I honestly dont know what kind of radiation I got which is embarrassing to say. I was in so much pain that I didnt care. I will see if I can find out. Healing hugs to all of us
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Thank you, Nkb. I didn’t have any nausea, thank goodness. They gave me Tylenol right before I started, but I had taken some the few days before too. I had some ginger candy one time, and my taste buds are extremely sensitive. That bugger burned my mouth. I didn’t like it at all. Ended up throwing the bag away. Pepper is too spicy for me. Lol
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hi saddie, i have a lesion in my skull. I first realized it when in mid July one day to another i got double vision, and it never went away. That’s when my MO sent me for scans n told me I have a lesion in my mekals cave near my nasal cavity. I just had surgery last week to remove most of the lesion. I still have the double vision but dr said it can take time for the nerve to go back in tact. They plan to radiate whatever was left. So yes. The lesion in skull will cause vision issues , it caused me to have left nerve palsy .
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Hopfull2, hoping for a full recovery for you with full restoration of your sight. Hugs.
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Sorry to hear that Hopefull2. Also sending positive thoughts for a quick recovery of your vision. Sure seems that skull mets are more common than the literature would indicate!
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I'm sorry to hear that Hopefull2. I am also sending positive thoughts for a quick return of normal vision.
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Hello, bone metsters --
in the category of the more they look at us, the more they find, some of you might remember that I had an MRI of my skeleton a few weeks ago, suggested by my RO. The report suggested that I might have mets in the area of C1 and the space to the right of that (whatever that's called). As a result, my RO said we needed to get a better look at the area bc it is a BAD place to have mets and we needed to get on top of it.
I wasn't home 15 minutes when she called me and said good news! Nothing there. I am VERY relieved about this news, but then again, this doesn't inspire confidence in imaging, does it? Or maybe it doesn't inspire confidence in the radiologists who read all of our scans?
Nevertheless, I am thrilled that this particular area of potential metastasis is off my plate.
Hopefull2, I do hope that your vision gets better, and that your procedure has cleared out what was going on. Good luck to you, and thinking good thoughts for you.
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Well, overall good news BevJen. In all fairness, I think the radiologists err on the side of caution and report anything that can be suspicious. When it comes to the head and neck they would rather find it was nothing after further investigation that miss something that can cause some irreversible damage.
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BevJen- I posted congrats to you on another Thread, but it deserves another WOOHOO.
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BevJen - YES! 🤛🏻
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SS,
I don't disagree with you on principle -- I don't think that radiologists go out there to make someone's life miserable.And I do think that they err on the side of caution, as you've said.
But it is so scary to those of us receiving reports (all of us) when things are perhaps overstated, causing more testing, or worse -- it doesn't inspire confidence in the medical profession. The other thing I find very irritating with respect to radiologists, at least in the US, is that they live in an impenetrable world -- at least the ones that I've tried to contact about scans. In my cancer journey, I've been able to track down so many different docs, including well known practitioners, pathologists, and the like. But I've never been able to talk to a "reading" radiologist personally. Their contact info isn't listed and so you really can't discuss things with them. Even my MO is a bit intimidated when I ask her to ask them things.
Perhaps I am just being cynical here -- and don't misunderstand. I am THRILLED beyond belief that there was nothing found today.
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Trust me, I hear you BevJen. It’s the same here - some faceless radiologist makes their decree and I have been on both sides where, at times I am also riddled with doubt wondering if they looked carefully enough. And, while I love my MO to bits, he has put me in a tailspin a few times, ordering scans instantly when I give him a rundown of symptoms. I have been tied up in knots feeling like maybe I shouldn’t be quite so honest! The scanxiety and... well you know. So much emotional baggage.
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