Bone Mets Thread
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Hello to everyone and thank you all for the many well wishes and kind thoughts you send my way. It truly helps lift my spirits.
The results of the lumbar puncture test show cancer cells are in the cerebral lining of the brain. It is not an unexpected result. The radiologist has ordered 10 rounds of whole brain radiation. I had the mapping for it done today and was to have my first treatment but my spine was way too tender by this afternoon to lay flat for even 15 minutes for the treatment. So I will begin tomorrow. I’m going to have to coordinate taking pain medicine with the timing of the treatment so I can lay there long enough.
I’m still waiting to hear from the oncologist about what kind of treatment on her end I will receive. The onc team was in today but I was out of the room for testing so missed them. I imagine they will be back tomorrow.So I’m in the hospital now but won’t need to stay for all the treatments. But it may be a few days before I’m home again. I’m tired but glad to be at this point with some answers and part of a plan. The hospital is such a busy place it’s hard to get much rest here!
I guess it’s called leptomeningeal carcinoma.
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@divinemrsm we are sending you tons of strength and hugs. We have a number of people in our zoom groups who have had WBR, if you need some contacts, please private message us. We're here for you 😍
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@divinemrsm That sucks but I'm glad they have a plan. As difficult as the WBR sounds, I know some women here who have had it and have gone to live full lives for many years with the cancer quiet after radiation. Stay strong. You are in my prayers whether you like it or not😘
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@divinemrsm, I am so glad that a plan is being put together for you. I am so sorry about the lepto. Hospitals are the worst when all you want is some sleep. I will be thinking of you and sending good thoughts your way.
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Hello Divine - Thanks so much for updating us on your situation; especially when you are in the middle of such tiring and stressful procedures. It does sound like positive progress that you're making and that's a real good thing. I imagine your oncologist does also have a plan to complement the brain radiation, and that you will learn about it before too long. "Ain't it the truth" about not being able to rest in a hospital! They're always in and out and wanting you to do something. I hope you get home soon, where you can have a real, true, and good rest. Thinking of you with fingers crossed and healing thoughts.
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@divinemrsm - Hope you feel better with the pain meds and are able to start the brain radiation tomorrow. Sending you lots of prayers 🙏🙏 and well wishes.
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Divine, I am so sorry to learn about this, but seriously its like the reward we get that the longer we go the more risks we are taking on for these kind of "shock-out-of-the-blue" developments. We need better treatments that actually lower the overall risks with time, not raises them, if this is to become anything like they say, a chronic disease. We are all in the same boat with you, rooting for you, bailing water, and being brave because we are just forced to be. I hope you can find peace in letting go of the parts of this that we have no control over and cannot change, so that you can sleep deeply and rest, I know exactly the kind of panic you are talking about and why does it hit at night, anyway? We focus on therapies and treatments and meditations and the knowledge and talents of our support team, because nobody can control any of the rest of it.
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Thanks, curious, and everyone, for the support. 💕 Today I found additional help with the nurses and also palliative team and it’s made a big difference. I really felt at my rope’s end thru the night so dh and my two sisters came in early. The nurses put a plan in place to address the pain so I could lie down for my first WB treatment, and I had was able to get started with that. Palliative came in and asked many questions and adjusted and added pain meds where needed. My sisters helped by giving their input which I so appreciated. When I got the higher dose of pain meds, I laid back on the bed and immediately took a nap. Woke up a bit then took another nap! I hadn’t been able to lie down in bed all last night so today’s sleep was a godsend! It goes a long way to keeping me from despair.
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Camille,
You have been on my mind and am so happy to hear that you got some pain relief and much needed sleep. 💗
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@divinemrsm So glad you are finding relief from all of this stress. I love naps. Naps are good. I might nap through the election (after I vote, of course!).
I am enjoying the relief after a stable CT scan. Still waiting on the bone scan, delayed by the shortage of IV saline, but I'm assuming that will be fine. I never have had a clear answer on how many lesions I have, since I was misdiagnosed and then switched oncologists, but I'm hoping to get some clarity when I meet my onc next week. The latest CT scan is mentioning three, but it seems the last bone scan was mentioning more. My first onc didn't think any of the spots were cancer until I had a biopsy. I don't get it. Is it such an inexact science?
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Tougholdcrow - I can't remember getting a bone scan where I needed IV fluids, but there could be more to them than I know (maybe they like to keep some on hand in case?), because I just get an injection of the tracer. I think the scans are in inexact science. I know if you have bone mets, the scars from them always remain and are noted in the bone scan reports, even if they've "healed" from the drugs, etc. Maybe that is what you are seeing?
Do you get a CT with contrast at the same appointment you get your bone scan? That would explain the need for fluids then. Just a thought.
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@divinemrsm, I am so glad you got sleep and some relief. In your pockets during treatment with virtual very gentle and warm hugs.
@threetree, I get the CT and Bone scans done at the same appointment - saline availability is a big problem in Australia.
@tougholdcrow, I get your frustration. After been told that I would know exactly how many lesions I had, the story changed to innumerable. All stable - the very dark side of me is beginning to suspect I have something else going on as well as the bc. I think onc might have the same suspicions, given the questions she asks. They decided not to do bone biopsy at initial dx cos there were so many sclerotic lesions - so "consistent with osteoblastic metastases" was the diagnosis. I am guessing that after mammogram and ultrasound onc will ask for biopsies and may even push for a bone one. That won't be fun. If there is something else going on she will have a fun case study paper to write if she so desires - lol.
Take care everybody - in your pockets with hugs.
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Maleemiss - I get the CT and bone scan at the same time too. Next ones are to be scheduled in early December. It will be interesting to see how that goes with the fluid shortage. It seems to have affected many, if not all parts of the world. I really hope you get your situation sorted out and that that "something else" you suspect might be going on, isn't.
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@malleemiss251 I didn't find the bone biopsy so bad, but I had a lesion in the iliac crest, which I think is easy for them to reach. I can say that I greatly enjoyed the fentanyl they gave me and can see why people get addicted to it! Keep us posted.
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@malleemiss251 Has your doctor considered a 'liquid biopsy'? That is, one done from the blood? My MO said that bone biopsies can be difficult, as they can't always get the right spot. However, that could just be in my case.
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@rstogether, I am thinking of suggesting it. But things are different in rural Australia. I have sclerotic lesions all through my pelvis area, so they can probably use those. Liquid biopsy would be way less invasive. If she wants biopsies of the breast tumours that will be at least 7 samples taken. So much fun when they are done on the same day - not.
@tougholdcrow, I have never had fentanyl, so that could be interesting. We could see if it works for me, as so many codeine-type painkillers don't work for me. The only opioid painkiller that I know for sure that works for me is morphine and aspirin is pretty much the only over the counter painkiller that works. We have found through trial and error that my pain receptors are a bit "different" - sigh. I am getting a little tired of being "different". Whine over - I hope everybody has a good day.🌼
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Malleemmiss - I had a bone biopsy of my T2 vertebrae and I was really worried, but it didn't go too badly. It was CT guided and they had me lay on my belly and gave me some cocktail of several drugs. Which ones, I just can't remember, but I think it's in my notes. It was very strange with the drugs; they had me in the machine while they did all kinds of things to me, but the drugs made me never mind all the stuff they were doing. The only thing bad about that wound up being that the vertebrae fractured about 2 weeks later and I was told that the biopsy procedure probably was the reason. I was very nervous though ahead of time, and did discover that it wasn't as bad as I anticipated. I don't have any idea how it goes if they use other locations like pelvic bones. I was just told that the interventional radiologists who do the procedure just use whichever location they thing they can get the best sample from. I hope that whatever they do, things go very well for you!
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Dear divinemrsm
I hope you are resting comfortably tonight and that you will have an easy time with the WBR.
I think of you many times each day and send you positive energy and healing thoughts.
Eleanora
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I have such bad bone pain these days😔
So I went for my CT and Nuclear Medicine Bone Scan on Tuesday. I feel pretty miserable with so much bone pain in my hips ribs spine and seatbones. It’s been really bad the last couple of weeks. I dreaded the long Day and the two hour ride up & home. I also have had what I think is arthritis in my ankles and wrists which adds to all the discomfort I’ve been feeling . I’m so discouraged. I know I shouldn’t be because the results read unchanged, no progression, normal. Still a lot of scattered numerous mets. But I don’t. Even know what that means any more. I used to know where, the size and which bone they were, but my scans are just so vague now. I. Don’ know why all this pain all the time. Do any of you ladies go thru this?
Thanks. For. Listening.🩵
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I’m sorry for not acknowledging some of you ladies who I know. Just didn’t reall read through but sayin hito you all anyway after my depressing post.
@threetree I know you and I relate a lot with our cancer struggles.🩵
@divinemrsm Hey there. I may have met you on Mel’s thread. I’m sorry you are going through what is going on with your bone mets. Praying you get som peaceful pain free rest tonight.
@malleemiss251 Yes🥰I totally agree with you about the Fentanyl. My neurosurgeon gives it to me every 4-6 mths for my neck injections pain block for Cervical neck stenosis..
@tougholdcrow I’ve only had fentanyl in the IV before my neurologist starts the procedure. I never had it for pain management in pill form.
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@shanagirl I'm so sorry to hear about this pain. I am wondering if some gentle strengthening exercises might help over time? I guess the theory is that stronger muscles around the bones help. You might want to speak to your oncologist about physical therapy in any event. I have pain if I do this or that, but I'm never sure how much is bone mets, medications, or just plain old age. My DH takes prednisone for a certain kind of arthritis and it has helped enormously.
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Shanagirl - A big congratulations on stable scans, but likewise sorry to hear that you continue to be in so much pain. Yes, we do relate with this, and I think it has something to do with our similar drugs. As you suggested, I think some of it can be arthritis. The pains in the ankles, wrists, feet, etc., I think are arthritis. Some of it is from bad posture too (with pain made worse by the drugs), as I have learned after hunching over a laptop for years, and then switching to a regular monitor, etc., so that I can sit better. This was after some drs and PTs suggested that some of my pain problems were muscular from too much computer strain, not sitting up properly, etc.
Like Tougholdcrow suggested above, you might give PT a thought. I've never been too crazy about, or sold on, the idea of PT, but I did start going and I think it is helping. I am less sore, and a little more limber. It's one of those things though, where you might have to find the right person. The first PT I saw was sort of freaked out over the stage 4 situation and didn't think there was much I could do. I got a referral to another place and the guy I see there is much more comfortable working with me and thinks there is a lot I can do and improve, but that the key is to go very slowly and gently. I'd been feeling better after the last few weeks of working with him, but then I got my Zometa infusion (you get the Xgeva, but very similar from what I understand), and I was wiped out for a few days, so couldn't keep up with doing the PT strengthening exercises, so when I went to see him again yesterday, I felt like I was starting back all over again, and everything is hurting! He thinks we can continue anyway and just work with/around the drugs. I do still hurt and continue to ache from the Zometa, along with the Faslodex and Verzenio too of course, but I am finding that I do feel better, even if not good, when I do the physical stuff, rather than when I don't. Just some thoughts.
Again, I am really glad to learn that your results showed "stable". With all these aches and pains it is so hard not to think that it could be the cancer progressing. Well you should at least be able to rest easy for awhile and look forward to the holidays with nothing "big" going on healthwise. Hugs.
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@threetree thank you for your words. I had briefly thought about PT and et throughout my life and past surgeries I have done soooo much PT and was always very committed to getting my strength and mobility back and I always did because it always worked because i would push through the pain. I was always a. Runner and excersizer, and equestrian jumper so it was always a motivation for me to be committed to PT. Funny even though I had my hemorrhagic stroke in my. Brain, thogh I did come out with no deficits, the Dr. had me in PT for 7 weeks in the hospital and told me I could never get on my horse again, yet I was back in the saddle and cantering her around the indoor arena after being home for 3 more weeks ……But I was 54 and younger. During those days. My muscles had muscle memory. They still do to a certain extent, but am just not willing to keep starting over every time I go through these bone pain cycles with this cancer pain combine with severe arthritis.
However, I did make up my mind to motivate myself to do a lot of stretching and keeping up with my. Anti inflammatory medications. So today I felt little better and didn’t get out of bed so stiff and painfully. I had coffee, read a little bit then washed and got dressed, put a little skincare, and lipstick 💄 on, went downstairs, gave the pugs their breakfast, took them for a walk upt the block to the bay, 2 houses away. By th short time it took me to walk up there, I told DH my hips were so painful and I was so out of breath. I needed to sit down for a few minutes. The dogs looked at me like I was crazy for stopping the walk already.😅. So we sat. There for five minutes and then started up the next block. That little stop was enough to take the pain out of my Hips so we kept going up the block and then I said to DH, I’ll never make it around the corner .So we cut through. Our neighbor’s back yard .he and his wife who is in hospice waved hi to us and I said to them I had to cut through their yard because I’ couldn’t make it any further. He totally gets it. We are close to them……..Well I committted to do this Today and now I’ll try again later or tomorrow. We are going later to vote, so this is all I really feel up. To pushing myself today. My body has finally turned against me and I am listening🙄☺️
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@shanagirl, such good news about the stable scans. Not such good news about the pain you are feeling. I hope you have success with the gentle exercise with the pugs. Pets can be great motivators. My 17 year old rescue kitty is an excellent motivator for me to get out of bed to give her breakfast. If I don't move she jumps around on top of me till I do as she wants. The other kitty is smart enough to know she doesn't have to do a thing and just leaves it to the old lady and she will get breakfast - lol.
In everybody's pockets with gentle virtual hugs.
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Shanagirl - I'd forgotten that I had read before about you having been an equestrian rider. Gotta hand it to you for sure - I'm one of those who got up on a horse once or twice as a young teenager, slid off terrified, and never got back on. I truly admire people who can seriously manage a horse. That does explain your past interest in doing PT, etc., but I can also really understand how you wouldn't want to anymore with that "having to start all over again" feeling after the bouts of aches and pains. That is turning out to be one of the hardest things for me too - I thought once I got started and my muscles got used to the exercise, things would be smoother and I would keep getting better, even if very gradually. Not the case with the arthritis and drug side effects - and now the weather too! You think you're good and then you get knocked back to square one every few weeks, due to something related to this treatment. It's awful!
I think walking your dogs to the water, even if you have to take a break along the way, is a wonderful way to at least keep moving and have a good experience without having to deal with a lot of the problems that can come by trying to do other things. That sounds like a lovely little outing, even if it was short. It doesn't take much fresh air to really lift your spirits.
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shanagirl,
I've been hurting much more lately also. It makes me worry also.
I'm so glad that your scans were stable. Stable is good. I have scans in 3 1/2 weeks.
Shirley
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I have a couple of equestrians in the family, and I am always amazed at how they recover from falls with all kinds of injuries. I now understand why we have the saying, "Get back on the horse." I can also completely understand why, to use another cliche, you'd want to throw in the towel. It is also my experience that you have to really shop for a good physical therapist. But anyway, at this point, I say enjoy life in whatever way you can, like a good cup of coffee and a cute dog and, as threetree says, a bit of fresh air and sunshine.
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Hi girls. Thank you all for. The encouraging insights. i want to comment to each one of you now because my heart is inspired towards each one of you. So I will check in later today when I get home. I’m with DH right now driving up to North Jersey for my chemo follow up appt with my Oncologist of 15 years to discuss last weeks scans, and today’s labs, and then go to th chemo lounge for my Fasoldex & Xgeva injections. It’s going to be a long. Day🙄
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Quick question. I know everyone is different but I wanted to ask how bone mets feel.
When you have bone mets on your spine and causes pain, is the pain constant or does it let up for a few hours, a day, a few days, a week? I'm just trying to determine what is met pain and what is herniated disk pain.
Likewise, do all bone mets hurt constantly or does it stop once in a while? Or does it start only hurting once in a while then progresses to all the time?
I will appreciate your experiences.
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My bone mets did not hurt that much. I started getting some minor back pain which was unusual for me and then learned I had extensive mets! It was not a constant pain. If you have any suspicions, get scanned. By the time I went they scared me saying I might soon be paralyzed!
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