Bone Mets Thread
Comments
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Re font size, another poster suggested this:
Have you tried shift/control/+ keys all at the same time?
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threetree Martha Stewart has a very good brand of topical CBD if you Google it, you should find it
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Gailmary - Thanks for the suggestion. I'm not techy at all and don't know what is meant by the broad term "keys". The shift/control part I get. Just wish font size was the only issue with this new site. Oh well.
Gigil - Really appreciate the tip. I will look around for it. I had no idea Martha Stewart was selling anything like that. Always think of towels and sheets, and maybe food with her.
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Gigil - Just checked out the Martha Stewart stuff. Wow, looks like it is about $100 for a typical sized tube. I think the stuff the palliative care NP told me about is supposed to be more like in the $20-30 range. I'll keep looking around, but it is good to know that Martha Stewart does have some, if other things don't work out.
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three tree, yes I bought a very large tube. It lasted for three months. It really works well compared to others I have used.
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Three-tree, try double tapping the screen for larger
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gigil, can you provide more information on the topical cbd you use? I’m curious what you use it for, how you use it, how often, if it’s something you apply before bedtime, or in the morning or both. Does it have a smell? What kind of relief does it provide? I haven’t ever considered using it which is why I have so many questions. I am not sure I have bone mets pain but possibly arthritis issues. Would cbd work for that? Anything else I should know?
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Gigil - I might actually give it a try, but will try to get up to that NP recommended store for the "Dragon Balm" first. She told me that the mix/ratio of CBD and THC in that product was significant in some way. I'm also interested in hearing the same info that Divine is asking about in her post - I'm in a similar situation; never used it before. My issue is that most of my pain is in the middle of my back - that spot you can't reach by yourself. I live alone, so no dear hubby to ask to put stuff on my back. I've tried with a lidocaine patch, but it's impossible. They fold over on themselves, can't get the right spot, can't smooth out the wrinkles, etc. I was thinking a cream might be easier, and I could cover a larger area, but like Divine would have no idea how much to use, how often, and if it would really work for bone mets pain.
Gailmary - Thanks again for a second idea. I can "splay" the screen and get larger font. I can also set the google setting for font to a larger size, but again, there are way more issues with this new site than just the font size, although I can read it better if I make it bigger.
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Threetree, I hear ya about trying to get lidocaine patches on your back! You gotta practically be a contortionist to get it stuck where you want without it all flopping over and sticking to itself!
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Hi @threetree,
It depends what device you're on, but if you're on a computer, you can enlarge the text (and everything else on the webpage), but the keys you'll use will depend if you're on a Windows computer or a Mac computer.
For a Mac, hold the Command key while also tapping either the + sign or - sign to increase or decrease the font size. If you hold the + or - sign, it can zoom in or zoom out too much, which is why I recommend just tapping the key.
If on a Windows computer, then use Ctrl key and the + or - sign.
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Divine - "Contortionist" you are so right about that!
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Just my two cents on CBD. It is effective by itself but it supposedly works most effectively with THC. I would also caution that the industry, like supplements, isn't FDA regulated so the quality varies from brand to brand. I'm in Oregon and there is wide availability here. I went to a shop a friend recommended that sources locally. I didn't find topical CBD to work well by itself for neuropathy in my feet. I may try other brands and routes. I haven't tried it with a THC combo yet but as has been mentioned, it can be cost prohibitive too. In terms of ratio I've heard most consistently to start with a 1:1 CBD/THC ratio and go up as tolerated. I'm debating an oral route CBD/THC for increasing back and hip pain from mets.
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Friends, this is the one I use. I just apply it to the painful spot and rub it in. I use a liberal amount. I often use it at bedtime, but I will use it again upon awakening or maybe one more time during the day, if need be, I do have a husband to help with the hard to reach spots, but it seems he is never around or available when I need help. You can find a lotion applying sponge with a handle to help reach those areas. I found mine in a Bed, Bath and Beyond store, but I would bet a medical supply store or CVS might have them. I find about 30 minutes after I apply it, I just suddenly realize it feels less painful. I also use it in my restless legs. It just helps those pain nerve sensations to stop firing, from what I can tell.
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emac, I appreciate your insights on cbd!
gigil, thank you for providing additional information on your cbd cream usage and the visual of the Martha Stewart product. Very helpful!
I was aware that this is not regulated by the FDA, so I will do some additional research and check out reviews should I decide to try it, and the information you both give is a great starting point and reference. I would say the Martha Stewart name does have an association of quality to it, so it does peak my interest.
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Emac - Your two cents are much appreciated. I'm new to all of this, so all info helps. The palliative care NP that I saw said something about the ideal has some certain balance of CBD and THC, and that this "Dragon Balm" she was recommending has that ratio. I still haven't gotten to the store she suggested to check it out - too much else going on right now, but I will get there and let everyone know what I discover.
Gigil - Yes, like Divine said, thank you for the extra info re the Martha Stewart product, and all your comments re application, frequency, etc. I also agree with Divine that Martha Stewart does have a "name" value, so this would definitely be worth checking out more thoroughly.
Divine - Just want to say "ditto" to all you said, and thanks.
(I've got an all day continuing ed Zoom training coming up in an hour, so I'm kind of giving this short shrift, but I don't mean to. Thanks so much to all of you for this info! Getting in little BCO while I have my morning coffee, but would like to spend more time here that I can't right now.)
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So the Martha Stewart cream doesn't have THC, yes? Id like to pick some up when next in the US- I can't bring anything into the UK with THC though we can get similar CBD stuff here. I have something that sometimes works sometimes doesnt, but ill give it a try on this restless leg thing I have going on here - never thought about that.
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Emac - Do you ever wonder if the stiffness you've said you get is from the spine mets, rather than the meds? I seem to remember that like me, you too have a T-8 problem. Sometimes when I get stiff and tingly I can't tell if it's the meds or the spine met and get really anxious and start worrying about things like paralysis. The med side effects lists include things like back and chest pain, weakness, muscle cramps/spasms, and more. So many overlap, including problems you can have from the mets. So far, your situation seems closer to mine than many, e.g. the T-8 issue, the reaction to Verzenio with no diarrhea, but then feeling low energy and stiff, etc. Thanks.
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Sondraf I don’t believe the Martha Stewart brand has THC. It works so well on my restless legs!
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Threetree - I do and I know that is a component. You're right in that there are a lot of overlapping issues. I have a compression fracture at T8 from a met. I also have a lot of stiffness in my right leg due to the major source of my mets in the right hip and leg where I have a rod through the femoral neck and femur. That area was radiated and I have resulting radiation induced fibrosis in the quads and hip flexors. It is impossible to say how much of my pain and joint issues are from meds and radiation therapy vs the bones themselves. I don't have a lot of bone pain in my hip, but I do at T8 where the fracture is which is why I'm revisiting the neurosurgeon and my MO is considering radiation to that area again.
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Emac877 - Thanks so much. Wow, I had no idea you could get fibrosis in those other muscles. I had only ever thought of it as a lung thing. Yes, my T-8 fracture can hurt pretty badly too. When I first got diagnosed with these mets in late January, I asked the oncologist if they do any sort of surgical things for the spine fractures, and she said no. I had heard about radiation and vertebroplasty, but she did not mention any of those options. She seemed to focus on drugs to start. I suppose that makes some sense, but when I see her at the end of the month, I think I will ask again about things they can do to help with the fracture pains. So you see a neurosurgeon for the spine fracture. I will look into that idea a little more too. Ideally the drugs will help and the pain will lessen, but that' only "ideally" and not what necessarily happens. I won't even know if I'm having a response to these drugs for some time yet. You do sure have a lot going on. I sure hope you find some relief real soon!
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Looking for some advice …
A recent MRI showed a mass at my L3. I have spoken with my MO and have an appointment scheduled with a neurosurgeon (NS) in two days (May 24). While it’s possible that the mass is benign (which is scary enough), I am preparing myself for the possibility that it will be more cancer.
Hopefully the NS will be able to make a diagnosis after reviewing the MRI. I assume that we will then discuss treatment options. Is there anything else that I should ask about at this first appointment? I have had constant pain in this area for several months so I also plan to discuss pain management with him but I don’t know what other information I should be seeking at this time. I’m still stunned by all of this and I’m not sure I’m thinking clearly yet. Any advice would be appreciated. Thanks in advance.
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Hi jkl2017, I'm afraid I'm new to Stage 4 with mets to my bones (and lungs, too). I don't have any type of information that I've gleaned just yet but wanted to offer support for another night owl.
Hopefully someone with expertise will come along soon to address your questions.
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hi everyone
Just was told not responding to kisquali/ ribociclib and flucersant been trying it over year now
They said my cancer not estrogen fueled now spreading a lot recently lots of pain
I have widespread Mets skulll ribs hips pelvis femur spine
They are putting me on oral chemo in next few weeks just wondering if anyone ever try’s previous treatments again or I just on chemo her on in
And has chemo helped control or shrink anybody’s cancer
I thought chemo was for when it moves past bones doctor has not told me I spread there yet
Maybe she thinks I have with all the profression
Feeling new pains and feel like it’s taking everything out of me just to get up and around last few days hoping this passes
Sad I am possibly past one treatment already but thanking my lucky stars there may be more
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jkl2017 - when initially dx with MBC, it was found in my femur, iliac, sacrum and T12. Since then almost every vertebrae has a lesion but so far, nothing big enough as to need surgical intervention. My radiology oncologist has treat a few areas which relieved my pain. I hope you find relief soon.
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Jkl2017 I had vertebrectomy and fusion for a tumor that was causing cord compression. There was cancer on the top of some of the other vertebrae that was removed too. That was two years ago and I haven't had any issues with the hardware. I have been able to walk. I had radiation afterward. I had another lesion that fractured a rib and that has been stable. I didn't have progression seen until the last scan where it is Mets in my shoulder blade. I have pet ct this week. My guess is more radiation. I do have pain but My back is pretty numb still over the surgery site. I have muscle spasms and numbness, issues walking but that was because of the cord compression. If you feel any shocks down your legs, numb toes or cramping like a belt across your diaphragm go to ER. It's hard to deal with it all mentally and physically, so I relate and hope you have quick answers, a good plan and have relief from the nonstop ache soon. I try to keep moving. I had to learn to move differently because of the fusion. I can't hunch over anything very long or it hurts.
Hi rk2020 :)
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Beth1965 - When your doctor said your cancer is no longer estrogen fueled, does that mean you’ve flipped to triple negative? Or does she mean you’re no longer responding to hormone therapy? What testing have you undergone to determine this change?
If you are now considered TNMBC, page 56 of this guide may help you better understand treatment options of triple negative.
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Beth, I second RK2020's comments, simply getting progression on first-line endocrine therapy does not mean the cancer is estrogen-independent. And most MOs recommend staying away from chemo as long as possible, to keep the cancer from mutating in ways that make it more aggressive. Changing CDK4,6 inhibitors or moving to a different targeted drug, or changing anti-estrogen backbone is most common next step, or joining a clinical trial to test a SERD or PROTAC in some combination trial, Moreover, one common route to resistance is developing an ESR1 mutation, and the SERDs are very effective in combating that mutation. Sounds like a second opinion could be very important here…
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rk2020 last appointment was such a whirlwind of confusion so many things going on I’m not even sure which she meant at this moment
I go back next week new tests to be done and tests to get chemo
Had no idea you could even flip to triple negative but she did say the estrogen treatment have not really done much to help at all this past year maybe that is why
Thanks so much for the information
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cure-ious thank you I am going to talk to doctor about what you said these are things I know nothing about
I am thinking a second opinion might be an idea
I didn’t know the chemo could turn this more aggressive that’s scary to hear
I am so hoping there is something for me before the chemo
Thank you for your comment
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Thanks to everyone who responded. I meet with a neurosurgeon this afternoon and will hopefully get some answers. Your support has been really helpful during the waiting period.
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