Bone Mets Thread
Comments
-
Nkb - I totally agree about medicine being both art and science. Unfortunately, I think medical people these days are focusing much, much, more on the science, and forgetting about the art. They seem to just want data and numbers; scan and blood draw numbers. Some of the "old days" stuff that was more "art" is still very relevant, however.
Yes, I think when using ice, one has to be "creative". I have yet to try it with this though, because I actually seem to be getting a little better. It doesn't hurt so bad that I cry anymore - thank goodness! I even managed to get in the shower - something I haven't been able to do for awhile now (I won't say how long!). Problem is that I don't know if it's "just" the pain meds or if this stuff is actually starting to heal. I guess I'll never know until I stop the drugs. I've also come to realize how much slouching and hunching over this laptop contributes to the problem.
This morning when I got out of bed, I could feel it of course, but it didn't just kill me. Now I'm just hoping that this is real healing and not "masking" by the meds.
0 -
One way to ice might be to wet a towel and put it in the freezer. Take it out and wrap around your chest.
0 -
Wrenn44 - Hey, the frozen towel idea sounds like a real good possibility. I'd never thought about that. I have taken those lunch box sort of ice packs and wrapped them in a dish towel to place on a small area before, and that worked OK, but I was just never sure how much the ice really helped overall.
0 -
Nkb and Wren44 - Want to thank you both again for the ice idea. I've been sitting here this morning while I have my morning coffee and web surf, with a flat, square "lunch box" type ice/gel thing wrapped in a dish towel and have been putting it on both sides for 10 minutes on, ten minutes off. It does seem to help a bit; at least in the moment. I've read that if you keep doing this regularly it can ultimately help speed the healing. Unfortunately, I am so determined to find that this muscle strain incident is independent of the spine and rib mets, that I have actually "on purpose" done some short, brief "reaching" as I did much more extremely with the package to "re-create" the situation (just a little bit) and sure enough, it is those same muscles that all get activated, and while it does help me think that this is a separate "non cancer" issue, it does make things sore all over again. At least it's not as bad as it was initially though, and I think I have convinced myself enough that it is more than likely not a cancer thing (always, think again though), that I will stop "re-creating" the injury to confirm it - oh stupid me!.
0 -
Hi everyone,
I'm very sad to join you all here, but here I am newly DXed with bone Mets. I am starting with radiation to the hip bones. Finished biopsy and waiting to go in for MRIs. T2 spot thought to be degeneration but now think Mets. T2 causing daily back pains which got me in for the scans. So luckily, the mets are pretty small at the moment. T2 they are causing my fingers to be numb, and my hand has gotten very weak where I can't even cut my nails with that hand. Combine that with lymphedema it is misery with that arm. Amazing what the spine controls. I think I am still in shock, but will slowly comes back to reality. I can't believe the Mets got me so soon after the first go around.Thank you all for reading this.
0 -
Mamacure, I am so very sorry about your latest diagnosis. I am new to this group as well, so I don't know as much as others here do but I still wanted you to know that I am thinking of you and I hope that your news gets better as time goes on. My heart is with you.
0 -
Mamacure - I too am very sorry to see that you've had to join our group. Like Tld2017, I am also new to this stage 4 and bone mets issue. There are many here who can be a big help with a lot of your questions, so feel free to fire away! I also have a T2 spot that the dr's were worried about possibly threatening my spinal cord. That's probably why you are having the numbness, etc. They are going to keep an eye on mine.
Tld2017 - Good luck on Friday! I will send out good vibes to you especially, then.
0 -
mamacure - So sorry to hear about your pain and diagnosis, but you’ve found a great group to help you through. Ask us questions. We have so much experience to share. Lean on us. We are here for you. I hope you find relief soon. Gentle hugs
It is crazy what the spine can impact. For about a year and a half, my cervical spine mets would send an electrical zing to my stomach area when I dropped my head forward. And it stopped happening as suddenly as it started. So strange.
0 -
mamacure -- I too am sorry you find yourself here. We understand the shock that comes with this diagnosis. The early months can be so difficult and I hope that you are finding ways to find peace and hope amidst all the chaos. I have extensive bone mets (from skull to legs) and in the early days, I also had intermittent numbness to my left hand (my primary was on left breast). But eventually that went away after a few months.
With regards to earlier discussion about pain, one of my earlier reports noted that I had a rib fracture at diagnosis but I never even knew it. The worst pain I had was on my sacrum but that got better over the first few months. When it started flaring up again, the Integrative Oncologist at the center I go to prescribed a pain patch that does wonders although temporarily. It's called TibetTree pain relieving plaster (it's basically camphor oil and other herbs). Of course, I let the team know when a consistent pain shows up (I make a note of SEs and keep track of how many days it lasts). And my MO and Radiation Onc keep track of my scans. One of the things I really appreciate with my Rad Onc is that she'll ask me if I want to see the images of my bone scan. I didn't think I would want to (my first bone scan was so traumatic). But it was actually helpful to see how "far away" the activity is from my spinal cord or how contained the spot is on my sacrum, etc. (at diagnosis, I had such horrible pain in my sacrum that I could barely walk). It helps me freak out less when pain comes up. I recently had horrible shoulder pain that I was certain was mets related. But it turned out it was muscle related from doing the usual weight exercises I've been doing for the last two and a half years. Very strange. Wishing the best to everyone here.
0 -
Smallmoments - Is this the pain relief plaster you are talking about? They also advertise this as TibetTree. Perhaps Cheezheng means Tibet Tree in Mandarin? Anyway, I was interested in learning more about this, but to be honest if this is the same that you are talking about, the Amazon reviews at least, are far from stellar. Many seem to think it is ineffective, expensive, and maybe out there from "fake" sellers with fake products. Could you elaborate more on where you get it from, what kind of pain you use it for, etc.? There are some reviews that are very positive, but it's not the majority by any means. I'd love to hear more about your first hand experience, if you have time to share. Thanks!
0 -
Hi threetree. That does not look like the one I use. I took a photo of the package and the box. I've gotten two boxes total but only by prescription through the integrative oncologist I see at my center (msk). It's filled by the hospital's pharmacy. I've used it for bone aches and what I think is muscle soreness (it's hard to differentiate sometimes). Here's the info from back of box: It's manufactured in Tibet (cheezheng.com.cn) and distributed by Ultimate International in San Francisco. It's basically a camphor patch (strong camphor smell and it feels just a little warm when applied). The relief is temporary but I've found it useful.
0 -
Threetree - you asked about my T8 pain and I've been off the thread for a few days. When I do something that aggravates any of my bone mets the pain is a deep dull ache. If I can't get rid of it with a heating pad I will sometimes take a Norco and by the next day it's gone typically. At it's worst I have a hard time moving. Most of the time though I don't really notice the met at T8 until I've done too much and my whole back is flared up. Hope that helps.
0 -
Smallmoments - Thanks so much for taking the time to answer my questions and to even take and post a photo. Interesting, the border on the package that you get and the one I saw on Amazon, are the same, and it does look like they are from the same company - just sold through different channels. It's interesting that you get a prescription for yours, but that something very similar can be bought over the counter as on Amazon. It sounds like the same thing. I am going to keep this one in mind, as I am always looking for some sort of "non lab/big pharma" type drug to help. I'm wary of the lab created stuff and would prefer some good old fashioned "home remedies" that work. I have used some lidocaine patches from time to time and they do help a bit, depending. These Tibet Tree ones look like they might work similarly to a lidocaine patch, but again, not have all the lab generated drugs in them. (I'm not saying that herbs, etc. can't have their problems and are always safe or anything, I'd just rather give some of the traditional stuff a shot before I move on to the big pharma stuff.) I really appreciate all the info from your post, and I've noted the website you listed. I'm assuming it is in China, since it ends with ".com.cn". Pretty sure the cn would be for China.
0 -
Emac877 - Thanks so much. That is all very helpful. I've had a deep dull ache at times in my chest after a lot of activity and I think that is likely from the fractured ribs they tell me I have. They also say the cancer is in my sternum. That deep dull ache has been a fairly new development for me, so I think it does coincide with this recent stage 4 diagnosis. I can get real back back pain flare ups too (not a deep dull ache, but very sore muscle feeling), and I've always been told that it was due to poor posture, hunching and slouching over my laptop all day, but am now wondering if it's a T8 thing. Everything I read says that these back and rib pains I've had fit intercostal muscle strain and "computer neck/back" to a T (no pun intended), but now I'm wondering how much is muscle and how much might be the T8 spot. The pain flares with activity and is absolutely the worst when I get on the laptop, but it can be real hard to tell. I'm not familiar with Norco, so I will look it up. I'm real sorry to hear that you have these problems too, and am glad that you can at least get some general relief for the most part.
0 -
Tld2017 - Wishing you all the Luck o' the Irish today and more! Hope all goes well with your procedure!!
0 -
Threetree, thank you so much for remembering and thinking of me - that was very kind of you! I am leaving here shortly for the pelvic MRI. Trying hard to not be afraid but know full well that I'll be praying for the entire procedure. I don't get the results until the 23rd and I know that the waiting will be hard! Happy St. Patrick's Day to all here!
0 -
Thank you so much everyone for your warm words I really appreciate it. I got my MRIs done yesterday. It took three nurses to get the IV started again….Starting radiation to my hip in the next week and waiting to see what will happen to T2. My sacrum will get radiated too. I can’t wrap my head around how fast Mets happened, read that it’s not good that it happens so fast after the initial treatment, some people go 12 years, which means slower progression. Yikes. I also can’t believe treatment for the rest of my life scared about the side effects. One day at a time isall I can take right now. Thank you so much for being here with me. Nobody else will understand what we’re going through.
0 -
tld2017 - Good luck today! Or as many of us say “in your pocket”. I had a CT scan yesterday and although the results are typically posted within 24 hours, I’m in a clinical trial and it takes longer. I will get my results in the 23rd at the latest. But if nothing is posted by Monday afternoon, I’m going to call.
0 -
Mamacure, yes, just take it one day at a time. Keep posting here whenever you need to talk or rant. We will all be here for you (and probably rant as well!).
Thanks, RK2020 for the well wishes - it went well other than the fact that the tech had to tell me to calm my breathing - I was nervous and had to wear a mask in the machine so I know I was breathing really deeply! She had to run a sequence twice because of my breathing movement, eeek. My results will show up in mychart by Monday but I am a big chicken and already know I will not look at the results so I will have to wait until the 23rd. I am really really hoping that you get good results from your CT scan!!
0 -
Threetree I started having deep dull aches in my chest too recently. I will ask my doc next time if I shud get an echogram or something.
Also anyone have experience on spine degeneration vs Mets. My docs are looking again including MRI because they are not 100% sure. I almost want to radiate it (T2) because of daily pain. Thanks.
0 -
I had/have lumbar-only degeneration - I had a hot mess in my lower spine with a blown out disk at L5/SI and others threatening at L4 and L3. My spine mets are/were at those three vertebrae and all have been radiated successfully and don't cause pain (although I try to take good care of the spine). L3 actually fractured at one point apparently and I didn't even notice. Care team went with full spine MRIs every other scan session (so every six months I would get a spine MRI alongside the lung/abdomen CT scan) to keep on top of spinal issues, then switched me to 4 monthly full body MRIs for various reasons (I no longer do CT scans at all).
If its causing you daily pain and nerve issues, I would suspect mets over degeneration. A herniated disk was some insane pain, but it subsided eventually while the mets just got worse and worse including my ability to lift the leg, and it got worse quite quickly.
You will be getting bone injections too I take it?
0 -
I got the results of the pelvic MRI this morning and there is no convincing masslike quality in my sacrum. No convincing pathologic enhancement identified in the visualized pelvis to suggest metastatic disease. I still have a lot of pain and numbness so something is wrong and my oncologist faxed over the info to my ortho dr. to see what else can be done for me, BUT this 20+ mm "tumor" is not showing up at all now! Since it was first found six weeks ago, I have also had a CT scan and a whole body bone mri with and w/o contrast done and those two tests also did not see it. The oncologist said no more tests for now! I am pretty stunned and in shock.
0 -
Tld2017 - Thanks for letting us know how things went. Sounds like some mixed results, but congratulations on the sacrum issue! That must be wonderful to hear. I hope they find the source of your pain and numbness though, and that it is not serious. Sometimes even things like anxiety and low electrolytes, etc. can do that. Best of luck for sure.
0 -
tld, one would think that that was good news, but it just sounds confusing. I'm so sorry. I hope you can get some REAL answers very soon. You are in a very strange place right now, and I feel for you!
0 -
Thanks, Threetree and Sunshine, I am feeling pretty good about it even though I do still have so many symptoms. Disc degeneration and arthritis showed up in these MRIs, so maybe that is causing the pain and numbness, I am not sure. I have an appointment that I need to make with a pain management office and hopefully they can help me. I am hoping the ortho doc can offer some more suggestions as well!
0 -
threetree this is a bit late, but I have had such similar situations to you regarding the ribs. One side and then another. It feels like muscle pain, but you are never sure. I use two extra strength Tylenol and two Advils when it gets bad. My dentist put me onto that regimen. It works. It takes about a month to begin to feel better. At some point I start gentle stretches in bed forward and back, up and down. It eventually improves and then goes away. Heat helps as well. I hope by now you are doing a bit better. The getting out of bed in the morning sounds very familiar. It is so painful! Gentle stretching helps once things begin to heal
0 -
Gigi - Thank you so very much for the comments and info. Very helpful. It's just so hard to know what's what, and I don't want to have to keep running to the urgent care or ER or something. They've been telling me for years that I have osteoarthritis and "age related spinal degeneration" but as far as I know that's all been fairly stable and hasn't really caused me any trouble. Then, over the last few years, I've been told that I have real bad posture problems, that I hunch and slouch way too much and too long over my laptop (I do!) and that that can cause all these back and rib aches, and now just recently they told me about all the cancer that is now in my spine, ribs, and sternum. This recent pain I had these last couple of weeks has been the worst ever, and I'm pretty sure it was triggered by my trying way too hard to reach high way too many times and in too many ways, to reach a package that was stored far too high in a locker. Just what that package retrieval stunt actually triggered though, I have no idea. Did I just pull more of the same muscles that the computer posture problems cause? Did I aggravate the osteoarthritis and spine degeneration and cause a pinched nerve or compression fracture or something? Or is this all the new cancer spread? Interesting too because when I saw the oncologist on March 1, to go over the scan results about the new spread, she asked if I was having any pain and I said no, which was the truth, except for some ongoing minor things I'd related to the posture problem. She said I was "lucky" to have no pain and that some do and some don't with this situation. Well, on March 8, I experienced the first horrible pain that I thought was triggered by the difficult package retrieval experience. I also wonder about the psychological effect that might be at play, after she suggested that I was "real lucky" to not be having pain from the cancer spread. The urgent care doctors I've seen since are just calling it " likely musculoskeletal but can't rule out mass in spine".
Re the Tylenol and Advil - thanks very much for the recommendation. How often and how long do you take this combo? How often to you get this sort of pain and how often does it last? I was only recently reading online that you can take Advil and Tylenol at the same time - I had no idea until a couple of weeks ago. At this point though, I'd be scared about the potential stomach, kidney, and liver damage, etc. I'm one of those people who would normally maybe take one regular Tylenol a year and all this heavy med stuff is real new and scary to me. The NP at the urgent care I saw gave me something called meloxicam that she said was a stronger ibuprofen (NSAID) than Advil, but it made me feel really bad, and didn't seem to help much more than 2 Advil, so I went back to that. I found that two regular Tylenol helped a little and that 2 Advil helped a little more, but I tried to alternate them on different days and only take a dose once or twice a day - I'm just scared to death of overdoing it. Yesterday was the first day since this all started that I went the whole day with no painkillers at all. It still hurt but was tolerable and less than it had been. Not quite as good again this morning, but I'm going to give it a try with no painkillers at all again today as long as I can. Interesting that a dentist told you about the Tylenol/Advil combo. It sounds like it could be really good for a few days of a bad toothache while you wait to get in to see the dentist. I just worry about the long term thing. Everything I'm reading says not to take any of this Advil or Tylenol for more than about 7-10 days "unless told to by a doctor". The NP at the urgent care gave me a 30 day prescription for the meloxicam, but again, that all made me feel awful and I switched back to Advil, even though it doesn't do the best job. I'm really drug sensitive and both Tylenol and Advil (and aspirin and meloxicam) can all make me feel like a zombie too - like I'm not really here, and emotionally down. There are some real trade off's to consider with these drugs.
I'm so new to all this stage 4 stuff, but I'm beginning to wonder what is going to send me to my grave sooner: the actual cancer spread or all the constantly loaded up with drugs thing. Our liver and kidneys can only take so much!
Thanks so much again, Gigi, and anyone else here who might have taken the time to read my rant. Ugh!!!
0 -
I’m very scared of the bone strengthening injections. Since Mets were small doc said I didn’t have to start right away but now new MRI showed it’s bigger ugh & T2 spine area has to be radiated too. Ihope it gets rid of back pain & numb fingers. Got 2 days of rads & have a touch of mild nausea & dull ache in hips. Rant away we get it.
0 -
threetree my husband is an MD and he tells me that combination can be taken together because the Tylenol is metabolized in the liver and the Advil is metabolized in the kidneys. Before I was diagnosed Stage IV, I was putting a heavy desk together and I decided I could flip it over on my own, since I was home alone for several days. In a few days I had a pain in a couple of my right ribs and it continued on for weeks. My husband suggested I come out to the clinic for a CT scan. That was when the interpretation came back saying widespread bone mets and a healing fracture of the ribs. At first it seemed like one side or the other could be so easily injured and sore. I, like you, had hardly taken aTylenol. I felt weird when I did. I learned that when you are in pain these over the counter remedies help and don’t make me feel weird anymore. I go a lot of the time without pain, and then some area gets irritated - ribs, shoulder blades or a hip. It has always improved with some gentle care and. Some rubbed in CBD cream. I have seen others on here who have had radiation for trouble spots. So far I have been able to improve without that. I fear falling or stressing things or lifting too much, however, I have to remind myself to take it easy. I also do meditation to help when I do have pain. That helps. Mostly though I feel good. I am grateful for that. Every new pain is a worry thoug, I will admit
.
0 -
Mamacure - Thanks for not making me feel so bad about my long rant. Also, I too am terrified of those bone strengthening drugs. I turned them down initially, when I was given the Letrozole and the Dexa showed osteoporosis. To date I have remained stable (new Dexa coming early next month) at least without them, and that was fine with me. I'm pretty sure that once my spine biopsy (having it on Thursday) results get to the onc, she will suggest them again as part of my new stage 4 treatment plan. I don't know what to do - a real rock and a hard place.
Gigi - That's interesting from your husband about the liver and kidney metabolization of those drugs. Makes more sense why you can take both at the same time. I totally get what you mean about thinking you can do things like flip a desk over, but then again, maybe not. I'm in that same mode, but now I wonder and feel like I have to be super careful about just how much and how often I do anything like lifting and carrying. Interesting too, that that was the sign of your stage 4 mets. I started having some trouble carrying heavier things (caused back pain) last November, but was again told it was probably muscles, even after a CT (no contrast). Then I had a weird rapid breathing episode in late January and went to the ER. That's when they did the scans and found my mets. I think it was probably there last November, but they missed it. Interesting too to hear you say that after taking a lot of these painkillers for some time, they didn't make you feel weird anymore. I will keep that in mind too. Well, I've been going a few days here with no painkillers at all, maybe like you said, whatever does happen, it seems to get better with some "gentle care". I've done a little meditation over the years, but I'm thinking I should get more involved with that now too. I'm so glad to hear that you "mostly" feel good - that's real nice to hear. Thanks again, so very much for taking some time to read and address my issues. It's a real big help!
0
