Fill Out Your Profile to share more about you. Learn more...

Bone Mets Thread

Options
1923924926928929947

Comments

  • gigil
    gigil Member Posts: 909
    edited April 2023
    Options

    threetree I would bet it feels good to your friend to do something to help you. You seem to have a pretty good support group. I am glad for you that you have a friend like that. I have one who keeps offering to help. This makes me think I just should let her. I Promise the injections won’t be so bad. I also stressed so much beforehand. In the end I just surrendered to it, and it wasnt bad at all..

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Star2017 - Thank you so much for your comments. Glad to hear that you at least got the Faslodex right away. I was really wondering why they didn't give me something to at least "tide me over" until they got things sorted out a little better. The oncologist seemed to want the scans and biopsy done before giving me anything, and it has taken a long time to get all that done - so much so that they will now have to repeat the scans before I start the Verzenio - and those are murder on my back full of cancer. Boy do I know what you mean about PTSD and the infusion center! At my facility all appointments are done at the infusion center, before and after any treatment. Every time I set foot in there, I start to cry, yet when they greet me, they say the pat happy, "Well, how are you doing today?" and I want to scream. Very appreciative for you letting me know that you didn't have too much trouble with the Faslodex. I'm encouraged by your experience. I am worried about the Verzenio dose, but the oncologist seems to think the higher recommended doses are the way to go. Nkb, who also posts here, suggested that I look into starting at the lowest effective dose and then titrating up, so I asked the oncologist about that. She did say she would be open to it, but did not really believe in it and that it would not be as effective, so I'm still weighing all of that. She says that the "effective dose" is the one they recommend, period. It looks like many here who started with the 150 mg eventually wound up with 100 for one reason or another. You are not the first person here who has said that the stomach issues were maybe worse than the diarrhea. I sure hope that you are getting some kind of treatment now that is helping, since you stopped the Verzenio and Faslodex.

    Gigil - I always feel so much better after reading what you have to say! Yes, I am so grateful for my old friends, and since I don't really have any family to speak of, they have just been wonderful for me. The friend that has been going to appointments with me lost another old childhood friend (one I hadn't known very well, as she moved away when we were all in jr high) that she had remained in touch with forever. That friend of hers was in another state and in a very bad way (big alcohol related problems and death, unfortunately), and she was not able to be nearly as much help to her as she would have liked. I think my friend in some ways is trying to do for me a lot of what she was sadly not able to do for her other friend. I think she has felt "guilty" over the other friend in a certain way, not that she should have at all. The circumstances were essentially "impossible". Interesting that you concluded that I have a good support group around me. The social workers in the ER strongly encouraged me to contact the social worker at my cancer facility - something I was hesitant to do. I finally decided to get in touch with that social worker after all, and when I did she asked me all sorts of questions about did I have family, a pet, etc. and then strongly pronounced that I did not have much of a support system at all and that my old childhood friends and a sister-in-law hardly amounted to much in the way of a support system. There was more, and I did not have a very good experience with her and never continued the contacts. I like what you've had to say much better!


  • eleanora
    eleanora Member Posts: 297
    edited April 2023
    Options

    threetree

    That social worker sounds awful. I hope you never speak to her again. Your support network sounds wonderful to me. Someone doesn't have to be married to you or related by blood to be "family". Remember that, in addition to your own close group, you have all of us here.

    I was started on fulvestrant as soon as I was diagnosed as Stage IV and have been on it for almost a year. Not aware of any side effects other than pain at the injection site for a day or two. Ask the nurse to inject slowly, and even stop pushing the medication for a few seconds if the pain starts to increase. Take the weight off the leg being injected by lifting that foot, and try to take a walk afterward to help the medicine disperse.

    I could not start Kisqali until 10 weeks after fulvestrant, as one of the mets was on a bone in my skull, and that was treated with 5 rounds of SBRT. Once the side effects of the radiation subsided, I started Kisqali. I was initially on the maximum dose of 600 mg, but the GI issues were so severe that it was stopped after a week and I was told to take a week's break before I restarted at 400 mg. I asked my MO if the lower dose would be less effective and she said that many people in the clinical trials needed a dose reduction and that she was not concerned.

    The highest doses of each of these medications is the maximum tolerable dose as determined by the drug manufacturer in the clinical trials. I believe that the FDA has now required that clinical trials be run on the maximum tolerable dose and a dose one level lower, as so many patients have had problems with the maximum.

    I was nervous during the loading dose phase of the injections, but now it's just one more thing to check off my list. I promise that it will get easier.

    Please keep us posted.

    Eleanora

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Eleanora - Hi, and thanks so much for all you've said. I understand there's a new social worker there now, but I haven't connected as of yet - got scared off by the first one. One of the reasons I did contact the one who left was because I wanted to ask her just what they could do for me that my friends, albeit little family, and the people on this site couldn't, because I didn't really see where anything they might do would be different or better. Yes, I agree with you that this board can be a very strong component of a support system.

    Glad to hear that you haven't had any major problems with the fulvestrant. I'm actually going to see this morning if they can't put it in my thigh or even arm, instead of my hind end. I like to use lidocaine cream ahead of time, as it really does help with the pain of all these needles, but it would be hard to get it on my backside like that on my own, plus I've heard that the soreness afterward can cause difficulty sitting for some. The doctor said I could work with the nurse about that, because there are other sites they can use for the injection. I've read that some automatically do it slowly and have you wiggle your leg or something, but that some have no technique at all. There used to be a nurse there who gave wonderful shots (can't believe I said that), but I don't know if she works there still or if so, when.

    I've heard that the SBRT that you had can have some pretty rough side effects too. Interesting also that you had to have a lower dose of Kisqali. My oncologist has essentially said that there really is no effective dose other than the high recommended dose of these drugs, yet I read on here where so many have had to have dose reductions, and they still seem to be getting a good amount of time on some of these CDK4//6 inhibitors and more. My oncologist just has a real by the book, standard of care only, whatever the FDA says, and that's final sort of approach to everything. To her credit though, she did say she'd be open to starting the Verzenio at a lower dose (but added that she did not think it was wise or effective). Good for your oncologist for seeming to recognize individual needs and differences.

    Interesting how some of these scary things like loading doses, can just become routine at some point. I've almost gotten that way now with blood draws and IV's. Before cancer, I would have just turned at run away at the mere thought of those. Makes me feel like a "surrendered" lab rat or guinea pig in some ways though.

    Well, not looking forward to this shot this morning at all, but I'll get through it one way or another. I've got an appointment to talk with the palliative care nurse practitioner first about pain and anxiety management, then I let the numbing cream go to work on whatever site they choose for the shot, then go back an hour later for the actual shot. Still can't help but see palliative care as the stop before hospice. I know it's not the same, and even in my social services line of work where I know the difference, I can't help but seeing it all as a continuum in most cases. Well, off to get ready - thanks so much, Eleanora, for your thoughts and encouraging comments.

  • weninwi
    weninwi Member Posts: 748
    edited April 2023
    Options

    threetree,

    At my cancer center they only use the ventrogluteal location (i.e. above the hip trochanter) for Fulvestrant....not the dorsogluteal location (i.e. upper outer quadrant of the gluteus). It's actually two injections - one on each side. From the internet: "The ventrogluteal injection site is an area on the most prominent part of the hip that's considered the preferred site for intramuscular injections. Experts say it's one of the safest areas for such injections because of the thick thigh muscles in the area. There are also fewer blood vessels and nerves in that area." The ventrogluteal location is easy to reach to apply some topical lidocaine. The tips I was given: 1.) Stand leaning on a table or counter - 2.) Take weight off leg getting the injection - 3.) Ask the nurse to warm the vial for a few minutes by holding it or rolling it between her hands - 4.) Ask the nurse to give it slowly over 5 minutes (I insisted on this and timed the nurses) - 5.) Sing, talk, recite a poem or prayer while you're getting the injection to distract your mind 5.) Walk around, take the stairs, etc afterwards to get the material to disperse - 6.) use a heating pad that first day/night as needed. I developed a lump only once when the injection was given too quickly.

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    WeninWi - This is great information and I'm so glad I was able to see it before I left. My friend just texted me that she's on her way to get me. Singing and reciting, etc., makes it sound like it is indeed quite a nasty shot though. I will do my best. Thank you so very much!

  • weninwi
    weninwi Member Posts: 748
    edited April 2023
    Options

    threetree,

    I recited one decade of the rosary out loud - the nurses didn't mind. Just talk to your friend...you'll do fine.

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    WeninWi - I totally took your advice to heart and I talked with my friend and the nurse, and we all listened to 60's Motown, that the nurse was able to pull up from YouTube on the computer screen in the room. It all really helped!

    So many thanks again to all of you who shared your fulvestrant stories and tips with me. They were a huge help! I wound up with a much better day than I had anticipated. First, I got a couple of your messages right before I left for my appointment and they were full of good suggestions and ideas. Second, and what totally blew me away, was that I got my favorite nurse of all time, who gives the best shots (if there is such a thing) as my nurse today. I could not believe it. I was sitting in the lobby with my friend, waiting to be called, and I was telling her about this nurse that I'd had back in early 2019 for my original AC-T, and how she gave such good shots and how I wished so badly that I could have her today. I went on to tell my friend that I doubted that that nurse even worked there anymore after Covid and the passage of several years. She has a couple of young children, and had only been working part-time and I figured it was likely that she just stayed home for awhile with Covid or something. Well lo and behold, about 2 minutes later, a nurse comes out and calls my name to take me back and it was my very favorite nurse! She was real happy to see me too, and said that when she saw my name on her caseload for the day, she was thrilled and looking forward to seeing me when I came in. We had hit it off back in 2019, but of course my treatments ended, so I didn't see her anymore. We shared a great big hug and "caught up a little" and then went back with my friend to do the shot. The nurse showed me where she would give the shot (thank you again, Wendy, as it was where you said and an easily accessible spot for me to lidocaine myself in the future), and she put the lidocaine cream on, and then left while it took effect. Then the palliative care nurse came in and we talked for awhile - that was the plan, i.e. that I would talk to the palliative care nurse for an hour or so, while the lidocaine took effect and then the regular nurse would come back and inject me.

    I told the nurse all about the many things you all had said about warming up the solution; lifting, moving, or shaking the leg on the injection side; slowing down the delivery time, leaning on a counter, and distracting myself with singing or recitation sorts of things. She was open to and aware of just about all of that, so we didn't have any issues there. The lidocaine cream helped big time and I really didn't even feel those initial needle sticks. The first shot I didn't really feel at all, and it has not been sore since. The second one I felt ever so slightly as it flowed in and it is very slightly sore now; no big deal at all. She did do them both in what appears to be the standard 2 minutes, even though we had talked about 5, as Wendy had suggested, but it all worked out just fine. I was so relieved to one, just have that great nurse, and two, to have that first dose that I was so scared of over with essentially no trouble at all.

    The sad thing for me is that this particular nurse has indeed left the clinic for another branch of the same organization in another city. She said it was a total fluke that she was there that day, because my clinic was so short staffed today, that they called her and essentially begged her to come in and help cover. This was fate or fortune or something, but getting her as my nurse today was one of the happiest surprises I have had in ages. Now I just have to hope that nurses who give me the subsequent shots are as good about it all as my "favorite" nurse was today. I'm truly sorry that she's left my clinic, but it sounds like where she is now is much better for her and her young family, so that's good too.

    Thanks again, to all of you who took the time to read my rants and worries and stressing about all of this, and took the time to share your stories, tips, suggestions, and comments that allayed a lot of my fear. Going forward now, I shouldn't be nearly as freaked out and have some idea at least of what to expect with the subsequent shots. Now on to the Verzenio ...

  • divinemrsm
    divinemrsm Member Posts: 6,033
    edited April 2023
    Options

    Wow, threetree, what a bit of kismet today for you getting your favorite nurse! What a crazy story! I love it. I am so happy your experience was positive. I’m also glad your treatment has officially started! Sending lots of positive vibes your way!


  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Divine - Kismet indeed! I'm still trying to wrap my head around that happening, even this morning. Yes, I am so glad too that now I can say I've officially started some sort of treatment for this - at long last. Now I'm just hoping that it really does something for quite awhile. Thanks so much for the nice comment and positive vibes. I'm sending some positive vibes your way as well.

  • sunshine99
    sunshine99 Member Posts: 2,609
    edited April 2023
    Options

    threetree, I actually got tears in my eyes reading your post. What an amazing story and experience you had with your "favorite nurse." I think the first of any treatment is always the hardest because we don't know what to expect. Your angel-nurse got you through it. I hope the next treatments go as well and that your SEs are minimal.

    As I was reading your comment about the palliative care team, I felt happy that you have a good support system. Another poster (pnw is her forum name) had a horrible experience when she called palliative care. I wish she had your team!

    Did you all get the email about the site being down for 24-48 hours starting next Monday, the 24th? Yikes! How will I survive without being here with you lovely ladies???

    Carol


  • rk2020
    rk2020 Member Posts: 696
    edited April 2023
    Options

    sunshine - I’m bummed about the upcoming downtime but if this resolves our current forum issues, hallelujah! It can’t get worse, right?🤞🏻

  • gigil
    gigil Member Posts: 909
    edited April 2023
    Options

    threetree it does seem like your social worker didn't listen carefully and realize you really do have friends who care for you. It is even wonderful just getting together with friends. In the one time you mentioned, they were all expressing concern and coordinating in regard to who would go with you. I have a few friends who care, a daughter and two sisters. At times, I am still very much alone with all of this - we all are. However we treasure the times we have with others who genuinely care and long-time friends are just the best.

    As for your dosage, I started out with a higher dose and had to drop down to a lower dose. From the research I have done, a lower dose doesn't work any less well. I think the jury is still out on that, however. These meds are still fairly new. I like that your doctor seems awesome - being willing to consider other dosing protocols. Hopefully you will be more at ease as soon as you get a plan.

  • gigil
    gigil Member Posts: 909
    edited April 2023
    Options

    threetree I am so glad you have gotten the first injections out of the way. Your favorite nurse! How wonderful! I have gotten some really great and caring nurses for my injections. They are all so kind and caring. Nurses who work with cancer patients are special kinds of angels. The worst part of all of this has been the anticipation of it. Now it will get to be routine

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Sunshine - Oh my gosh, I can't believe my story brought you tears! I should have been the one in tears, but interesting, I felt more like someone on one of those talk shows 20 years ago, where they'd interview you and you mention some long lost friend or something and then they'd say, "Well, we found your old friend and brought them here today - come on out so and so!" And then the featured person just gets so happy, the old friends hug, and the audience cheers, etc. Kind of like winning a game show. I have mixed feelings about the palliative care nurse and her approach, but she was helpful and it's OK for now. I've wondered if "pnw" isn't for Pacific Northwest and if that poster isn't in my general area here somewhere. If so, she might go to the same facility, but there are different branches. That's really too bad that she had such an awful experience with palliative care - I wasn't thrilled with the social worker at my facility, the one time I spoke with her, but she's gone now. I agree with you and RK2020 that it will be hard having the site down, but hopefully it will be better.

    Gigil - Interesting that the social worker didn't think I had much of a support group to speak of, yet the palliative care nurse I spoke with yesterday thought I had a real good support system in my old childhood friends. She agreed with me that the friends you make in childhood are unlike any others. We go on through life and make friends as adults, but it is just never the same as those childhood friends. I think it has to do with having been kids together, and essentially growing up together and knowing all of each others' families (and the whole neighborhood, teachers, etc.) collectively. I was about 11 when I met this group and they ranged in age from about 9-13 at the time. I totally agree with you though, that in spite of our support systems (looks like you have a good one too), we are actually very much alone in all of this a good deal of the time. Dosing has become an interesting topic to me after reading so many people's experiences here. My oncologist is real hard and fast about how the FDA recommended/approved dose is the only way to go, yet I know there are studies out there that suggest that in many cases some of these lower doses are plenty effective. I hope they study this issue a lot more in the very near future. I know the FDA is requiring new things in that regard for new studies, but I don't know that they will go back and review all the older drugs. There is an organization I believe called TheRightDose.com and I am hoping to learn more about them and what they do. Only heard about them recently.

  • gigil
    gigil Member Posts: 909
    edited April 2023
    Options

    threetree that intrigues me. the Right Dose.com. Let me know I’d there is anything new there. I will be researching that. I think it is so important to be sure we are getting the right doses to suit our own metabolism and body chemistry. Old friends are definitely the best friends. My best friend is someone who I was in every year of school with, looked across the aisle to in church and she has also experienced breast cancer. Her support has been amazing. To top it off she is a fun person. I feel very lucky also

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Gigl - Here's a link to the website:

    https://www.therightdose.org/about-us

    I'm just getting interested in this notion myself, so haven't looked around the really at all. I seem to remember that I read about it on the Foodforbreastcancer site. She has a "resource" section there that I had never looked at before, and when I did, I saw the reference to this "right dose" group.

    Wow, your best friend sounds fantastic, and like just the sort of old friend/person I've been talking about. Nothing like it!

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Question re fulvestrant: Have any of you who've been on this had tingling limbs (all 4) following the injection? If so, was it just a passing thing, that went away after awhile or did it stay, get worse, or whatever? Feels like peripheral neuropathy from Taxol which I have a limited amount of already, but this seems much "enhanced" compared to what I regularly experience.

    Same thing re muscle cramps. Any others of you have this following the injection? Just a passing thing? Long term? Just never sure what to ignore and what to get concerned about. Thanks.

  • emac877
    emac877 Member Posts: 679
    edited April 2023
    Options

    Threetree - I have never noticed tingling limbs aside from the neuropathy in my feet I've had since my first diagnosis. I do however get muscle cramps and overall pain and stiffness in my joints with Fulvestrant. I have told my doctor it feels like it physically aged me 20 years. I also have had a hard time with the injections, I think mainly due to technique and rushing on behalf of the staff but also because by that afternoon I feel like I have the flu. It's usually gone in the next day but I get through my days with Tylenol and ibuprofen or some days I wouldn't move at all. I make myself go to the gym and stay active and that is hard but I also feel it helps.

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Emac877 - Thanks so much, it is really helpful. The tingling seems to be calming down, but I am experiencing the other things you mentioned - muscle aches and stiffness. Lots of low energy and yes, feeling something like the flu. Since this was my first shot, I'm just "feeling things out" so to speak; getting to know what I might expect in the future. I'm sorry that you've had so much difficulty with the shots. Since I got my old "favorite nurse" for this first one, the injection itself went very well. I am not looking forward to the future shots though, when I will have a random nurse with who knows what kind of technique, patience, etc.

  • threetree
    threetree Member Posts: 1,306
    edited April 2023
    Options

    Emac877 - Just wanted to add another quick thanks for your comment about "making yourself" go to the gym when you don't feel like it. Since my fulvestrant shot 2 days ago, I haven't felt like doing anything. I'm not a gym person, but I do love to walk and I've been missing my walking. I just got back from "making myself" walk. I got in 30 minutes. Less than I would have liked, but more than I had hoped for, so I think that forcing oneself to just power through some of this is a real good thing. I too feel better after the exercise - it's just so hard to get up and go do it.

  • emac877
    emac877 Member Posts: 679
    edited April 2023
    Options

    Threetree - I would agree, sometimes getting in the door, or out the door, is often the hardest part. Walking is great. There's all kinds of positive benefits from it.

  • gigil
    gigil Member Posts: 909
    edited April 2023
    Options

    threetree thanks for the link. I have experienced muscle cramps in my back - mid to upper. It is usually a random spot that becomes very naggy for a few days to a week. I also experience fatigue - but thst has gotten better each time. It really hasn’t been that bad. it seems to become less with each injection

  • pupfoster1
    pupfoster1 Member Posts: 176
    Options

    Hello all,

    I was recently diagnosed with Mets to the bones after 12 years NED. I was a very active part of BCO back in my early days, but as time went by my visits weren't as frequent, so I'm still struggling to figure out this new format (to me).

    Just checking if this is an active forum as I'm not seeing a lot of current posting going on, or if there's one with more activity. I've just had round 2 of chemo (1st combo of Gemzar and Paraplatin), only Gemzar this time, with a week off tx. They said I might not feel as bad as the first week with the combo, but in some ways it seems worse. I'm taking OcyContin ER for longer pain relief and Oxycodone for break through pain. It's not helping a tremendous amount and I;m wondering what regime has worked for you. I'd hate to jump to higher pain meds this early on (I have a very high tolerance to opiods) in case, God forbid I need them later and they won't work.

    Just needing a bit of guidance on this new journey. My "new" dx is so much different than my original, and of course over time treatments change and terminology. I'm now triple negative, whereas before I was ER/PR+ Her2- Unfortunately I am NOT a candidate for Keytruda.

    Peace and comfort to you all.

  • emac877
    emac877 Member Posts: 679
    Options

    @pupfoster1 Welcome, I'm sorry you find yourself here but this is still a fairly active thread. I have not seen as many posts since the new format rolled out at the end of April. It is a little bit trickier to navigate and I think some of us have dropped off regular posting here and I have noticed postings seem down right now in most threads I follow. I'm hoping people will come back soon.

    I am not familiar with the treatment you are on. My mets are ER/PR+ HER2-. In terms of bone pain I have some success with Norco 5/325 when things get bad. Most days though I combine Tylenol and Ibuprofen and use heating pads. I think a lot depends on where your mets are. I have a compression fracture at T8 due to a met and heat works best for that one.

    In terms of other active threads try "My Husband, My life…., My Cancer." It's usually in the top active threads. We affectionately refer to it as Mel's living room. It's not specific to a type or region of metastasis, we all just post about daily life etc. and I have found it a welcoming place.

  • rk2020
    rk2020 Member Posts: 696
    Options

    Pupfoster1 - Unfortunately, I can’t offer advice because I don’t have any personal experience that relates to your concerns. I hope someone else will reply. This is usually an active thread. Shortly after the upgrade, I stopped receiving email alerts of a new post. Life got busy and I finally signed on today. It’s very very sad how few posts I’ve missed. This forum means so much to me. I’d be list without it. We lost members after the last failed upgrade. Now this. 😭

  • divinemrsm
    divinemrsm Member Posts: 6,033
    edited May 2023
    Options

    pupfoster, hang in there. It’s possible you feel crappier as a side affect to the second round of chemo and not necessarily the bone mets. Where are your bone mets? What is your activity level? Are you able to go about the regular routine of your day, or are you unable to because of pain? If it’s affecting your quality of life then maybe contact your doctor.

    As for the new format, I’ve occasionally been using the emojis at the bottom of a post. It’s something new, so I have to remind myself that they are there.

  • weninwi
    weninwi Member Posts: 748
    edited May 2023
    Options

    pupfoster,

    I can't comment on your treatment, but I have bone mets since diagnosed Stage 4 in 2019. I have lesions in my sternum, ribs, vertebrae, both trochanters, pelvic bone, and sacrum. I occasionally have rib pain, which is positional, and have just started having pain at the left sacroiliac (SI) joint with prolonged sitting. My last scans mention that I have lesions at the SI joint on both sides. Thankfully, I haven't needed pain meds except for an occasional Tylenol. I've been getting Zometa (Zoledonic acid) infusions, a bisphosphate, since the MBC diagnosis. The nurses call it "bone glue". I started out on every three months, but after 3 years duration my MO reduces the frequency to every 6 months, due to potential serious side effects associated with long term use. My MO told me Zometa helps to control or reduce bone pain, but she did not explain how it does this. Maybe by strengthening the bone to reduce fractures. There are several commenters on BCO who have had radiation treatment for their bone mets, and if I remember correctly, with good results. I asked my MO about this and she said she'd consider it only if I was having pain.

  • gailmary
    gailmary Member Posts: 428
    Options

    Pupfoster. I can't speak to your treatments but I did have major pain from my one bone met in humerus (shoulder). I remember doctor said it was practically paralyzing me. I had radiation and it resolved pain 95%. Don't know how they might handle multiple spots. Just those that hurt the most perhaps?

    Hopefully the chemo will help and shrink mets soon.

  • threetree
    threetree Member Posts: 1,306
    Options

    Pupfoster - Re pain, I had little when they first diagnosed me as stage 4 back in January. Since then, I have had more fractures and more pain (spine, ribs, sternum). I have tried not to take anything, but have had to resort more recently to things like Advil (ugh!) and Tylenol. I have found that sometimes ice and heat also help. I tried heat for the lesions on my spine, but I pretty much have to sit up in bed with the heating pad to do that, and I just don't like sitting there essentially doing nothing but playing around on my phone - especially for the limited benefit that I get. It works sometimes, but not others and I don't know why the difference. I also find ice helpful when I sit at the computer, because I can put an ice pack between my back and a pillow behind me. It doesn't really interfere with using the computer.

    When I know I will have to drive or go out and be with other people for awhile, I have sadly resorted to a combination of Tylenol and Advil, as emacc877 mentioned that she does. Actually, the lovely Gigil, who also posts here sometimes, told me about that combination. I would have thought you couldn't do it, but it's fine. I take one regular Advil and one regular Tylenol together and that seems to work better than 2 of either of them alone, plus it distributes the side effect burden. Sadly, the Tylenol on it's own does very little. I get more benefit from Advil, but am terrified of all the side effects (heart attack, stroke, bleeding, etc.). I use it very sparingly. I still try to just put up with a lot, especially when I'm just home by myself. I've also had some luck with lidocaine patches, but my biggest problem is a T8 lesion/fracture on my spine, and I can't reach the spot to get a patch on there. I live alone, so no one to ask to put it on for me. I'm also concerned about putting a lidocaine patch on my sternum fracture, even though I can reach it, because that is an area where the surgery left me with nothing but literally skin and bone. It was then radiated with protons and it is where I got the radiation boosts too. It is just an overall worn out and broken down area on my chest that I hate to bother in any way. The patches can cause some irritation, although I have used them off and on in that area with some success.

    I saw the palliative care nurse at my facility and she was promoting things like meditation and music, along with PRN Tylenol only. I told her I really hated to be using the Advil and she said, "Oh, stay away from that stuff!" I still use it sometimes anyway. She also suggested ice and heat. On top of all that she said that she would really recommend that I look into topical CBD; specifically a product called "Dragon Balm", not to be confused with the old standard "Tiger Balm". I told her I knew nothing about and was wary of CBD products, but she said the topical is OK. She told me to stay away from the "edibles" and more, but to give the topical a shot. I then asked her if I'd have to go to a pot store to buy it and how all of those stores in my area are pretty much on one highway along with the cheap motels, prostitutes, and frequent robberies, etc. She did recommend a store that she said sells medical CBD and is reputable. It is indeed on that same highway, but definitely in a bit nicer area than most of those stores. I've been planning to go check all that out, but have yet to do it, largely because of all my increasing pain and recent appointments, beginning Faslodex and Verzenio, etc., but I will get to it.

    An ER doctor gave me a prescription for hydrocodone when I went there a couple of weeks ago for some real sharp chest pain that turned out to be the sternum fracture. I did fill the prescription, but have so far not taken any, as I don't want to feel "doped up" in any way. Holding off on that as long as possible.

    Like others have noted, I too have ceased coming here as often as I used to. The luster has really gone from this site. It was such a huge help to me when I first found it in 2019, but it has done nothing but deteriorate over the last year or so, and it's not the other wonderful people who post here. Now with this super tiny and faint gray font on a stark white background, my eyes just can't take it very long or very often. I'd much rather have readability than emojis and like buttons, etc. Navigation is also not easy. There were many pleas for readability after the last "upgrade", but those seem to have fallen on deaf ears. I can really understand why there are so many fewer participating and posting these days. It is unfortunate indeed, especially for people like you, Pupfoster, who are very much in need of support, advice, and tips right now. Good luck to you!