Bone Mets Thread
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Divine, I know it can be difficult to sort out what's depression and what's anxiety at times. I think if you cry at all, the dr's are quick to want to call it depression, but you can get so anxious that you cry and don't want to do normal things, want to throw in the towel, etc. too. When I took the Ativan for chemo nausea all I remember about it is that it gave me a headache. I don't know if I got more calmed down or not. I do think in my case this is more anxiety than depression. I use a "happy light" and that can cause anxiety, although it really does help with low mood and fatigue - a trade off I guess. I also take SAM-e and that too can cause some anxiety. It helps a bit with mood and the joint pain though, so another trade off. Normally the anxiety I experience from both the light and the SAM-e aren't enough to be troublesome, but with this new diagnosis on top of it all, I think I'm really maxing out with the anxiety. I might try some meditation videos or something I've done those every once in awhile and do find that they calm and relax, but I've never gone in for it big time. Maybe I'll give it another shot. They seem to take a long time though, and I get agitated and want to move - I need more patience for them. They say if you meditate regularly you really do eventually develop a kind of "natural calm" that is there most of the time.
About projecting yourself and your thoughts into a future that you can't predict: I heard a term once called "anticipatory anxiety" and I think that that is what a lot of this is; just projecting and thinking about what might or could happen with no real evidence that it will happen. You get all freaked out about what might happen when it would be much better to just focus on enjoying the here and now. You are so right that anything can happen, even good things!
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tid2017 and threetree, I will be thinking of you with your upcoming scans. I wish I had the perfect words, but don't know what to say. I WON'T say, "Don't worry, you'll be fine. It's no big deal." I had that said to me. NOT HELPFUL! (Not by anyone here, of course!)
(((hugs))) Kleenex and chocolate - whatever gets you through.
Carol
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threetree,
I had another second opinion video appt with my Mayo MO today. I like her much better than my local MO. We've talked about managing anxiety and she recommends deep breathing with HUMMING. The routine she gave me is: 4 counts Inhale, 6 counts Hold, 7 counts Exhale and HUM on the exhale. She says it's the vibration of the humming that alters and calms the nervous system. A Goggle search will bring up more information. Today when I saw her she added "put your hand over your heart" when you do the breathing and humming. I have not established a daily routine for this, which would probably be best, but when I'm feeling overly anxious it is one easy intervention.
Wendy
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Tid2017 and threetree
I will be "in your pockets" for your scans as well!
Anxiety is a terrible thing that causes us mental, physical and emotional pain. I was diagnosed MBC eight months ago with bone mets and I still deal sometimes with fear so overwhelming it freezes you where you stand. The dizziness, lightheaded feeling and nausea had me convinced there was something else going on in addition to cancer, but it was only anxiety. I do have a Xanax prescription for .5 mg to take as needed. I took it several times a week in the beginning, but now only take it occasionally and cut the pills in half. I have no side effects other than a mild sleepiness, but like threetree, I am very sensitive to that type of medication. think just knowing I have that option helps lower my anxiety level. I think we each need to figure out the sweet spot between overmedicating and needlessly suffering.
I also do slow breathing and thanks to weninwi will now add humming to the exhale!
I find that getting outside has a calming effect for me and go for walks as often as I can. If the weather is miserable and my anxiety is high, I open the garage door and stand just inside, taking deep breaths.
I am just a little ahead of you on this road and I'm happy to reach back with a helping hand, just as so many of the wonderful women here have already done for me.
You are not alone.
Eleanora
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In pockets for tomorrow. I would ask for a 2nd opinion if the results seem dire. Don't let one pessimist scare you to death. Good luck to you both. DH used the breathing technique at bedtime and was usually snoring by the 3rd round.
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WeninWI - Thanks for the info about the 2nd opinion. I've offered wondered how a person goes about doing that and if it would help at all. I suppose you could hear worse, just as well as better. Either way it is sometimes nice just to hear more than one person say essentially the same thing. Makes it more solid. I think I did see where you can have places like Johns Hopkins request your records and then they give a second opinion. It might be out of pocket costs though. The breathing exercise you mention sounds a lot like the 4-7-8 breathing method that I am familiar with. With that one, you inhale through your nose for 4 counts, hold for 7, and then exhale via mouth, but make a blowing or whooshing sound when you let the breath out. I'll giving the humming one a try.
Eleanora - Love the "in your pockets" idea. I hadn't heard that one before. I'll be glad to have you. I've got a couple of little good luck charms that I've been keeping in my pocket, but I'm pretty sure they'll make me take them out for the scan. I'm really sorry that you too have had to deal with all this anxiety. It is truly debilitating at times - too many times! I love to walk too, and I've taken some good walks every day so far this past week. Probably not today though, as we are supposed to get a bit of rain, and I need to get some stuff done, before I go for those scans tomorrow. I've noticed though, that since this MBC diagnosis, the walks are different, and I get real stiff, tense muscles, and don't always take in the things that usually bring me so much joy on a walk - the changing seasons, the birds, the "baby walkers", etc. I just don't really "see" all that so much now, I just pound the pavement. Interesting that you are about 8 months ahead in all of this, so you have some good perspective to share, and I sure appreciate you taking the time to offer it.
Wrenn44 - Hey, with you, Eleanora, and my good luck charms "in my pockets" for tomorrow, what could go wrong, huh? Thanks so much for the good wishes, and I think I will try some more breathing techniques, and consider second opinions of things don't look so good. I really appreciate your comments.
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Threetree, I will 100% be thinking of you and praying that your day goes well tomorrow. Please update us when you are comfortable doing so. We CAN do this! We are going to get our scans done, we are going to get the results in a few days, we are going to deal with those results as best we can, and we are going to move forward trusting in our team to help us! I wish I could hug you through the screen!! Thank you, Carol, for your kind words. I did indeed just treat myself to a chocolate cupcake! Wendy, I'll be trying some deep breathing with humming for sure! Eleanora, I too find great peace outside. My back has been hurting too much to walk lately but I have a hammock that is surrounded by trees and I love laying there watching the beautiful sky change and listening to the birds singing. It is honestly my happy place to be, even if bundled up in many blankets. Wren, I've been thinking about 2nd opinions, I did not get one for my first cancer diagnosis and treatment, but I'm thinking it might be a good idea this time depending on how the scans go. Thanks for the reminder that I can ask for that!
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weninwi, I love the idea of adding humming to breathing exercises. I hadn't heard of that before but will google it as you suggest. One thing that helped me get more out of deep breathing was to do exercises for increasing lung capacity instead of ones targeted for relaxation, if that makes sense! I started them after getting over Covid and noticed they helped calm me better.
Eleanora, I also find walks to be wonderful and agree that getting out in nature is calming.
I like the idea of quieting the mind and have practiced meditating. I'm not sure how effective it is for me and I'm kind of impatient with it.
Even though I began doing breathing exercises, meditation and walked, I still needed the help of medicine for the anxiety.
I can remember finding bco.org when I was still getting tests done and the support I got from women in other sections while I waited on and worried about results. Then the the stage iv diagnosis reared its ugly head. It was awful. I could not bring myself to click on the “stage iv" section for a long time. I was terrified. It took me quite awhile to be brave enough to do it. It meant admitting I was stage iv, the reality of it. And what would I find? Lots of hopelessly depressed women always in tears, moaning and gnashing their teeth? I'm not kidding. I was so fearful. I thought it was going to be nothing but deep, depressing posts of women dying. Instead, when I finally took the plunge, I immediately felt hope. And connection. I remember one member called herself Chainsawz and I thought, wow, what a kick-ass woman she must be to call herself that. Just her name gave me strength. What a lifeline I found.
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I wonder if the humming is equivalent to cat purring. They purr when they're happy but also to soothe themselves if they're in pain or stressed.
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I recently attended a breathwork summit through the Shift Network online, and many of the presenters promoted humming as well. Apparently it produces around 15% more nitric oxide than standard breathing through the nose. Nitric oxide helps fight free radicals/pathogens. Pretty cool! I've been humming a lot more and exercising while chanting "om".
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Divine. I heartily agree. I thought I was well adjusted to the MBC. Dx. But I see now illness to continue to adjust as it progress4s. I was told 6 months ago that it got to the lungs. I got over it qu8ckly as we didn't change meds and I didn't see scans. Last month MO showed most recent scans of lungs and it hit me pretty hard. Oh shit.
Also it's been suggested that I find a therapist but I have much to cope with and highly doubt I could find someone suitable.
I eventually gave in and got a script for anxiety. It was affecting my health negatively. It's been a long time without estrogen and I'm a mess.
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oooooh. Walking in my woodland is my happy place. It's a pretty steep Woodlore. I imagine when I can't hike uphill due to my health that DH will take me up on ATV..
I've done a good bit of meditating and deep breathing g. . I stopped because of the constant thought of lung mets. But I will look into the lung exercises and hummi g too. Maybe I've adjusted enough now to meditate again.
I'll be watching for all those scan results.
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Wenn - Im going to try that humming technique when they next stuff me in the MRI. I usually don't have a problem with the claustrophobia or anything, but its so loud it seems like a good place to try it !:) Looks similar to square breathing but with the added humming twist.
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Well, I am home after 4.5 hours at the hospital for the bone scan and ct scan. Unfortunately, the first available appointment to discuss the results with my oncologist is not until the 23rd. Of course, mychart will have the results by tomorrow morning. I just can't bear to look at it though, when I know I won't be able to decipher things and then will undoubtedly try to google it and then start hyperventilating, hahaha! So, now I need to wait and be patient until the 23rd, and I have the patience of a gnat...
Threetree, thinking of you and hoping your scan went well yesterday!!
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tld, I'm glad you're back home. I hope you hear before the 23rd about your results. Sometimes, my MO's nurse will call me to say everything looks good/stable. Of course, when she doesn't call, I worry that something is wrong.
(((hugs))) while you're waiting.,
Carol
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td2017 - So glad you are back home now at least. I sure know how hard it is to have to wait for the results, meeting with doc, etc. The soonest available with my dr was March 1, so that's when I'll see her.
The CT results came in yesterday evening. I went ahead and ventured the look, and they just pretty much confirmed what they had found in the ER a couple of weeks ago - all those mets to my spine, sternum, and ribs. They did see a spot on my liver that they are concerned about, but couldn't say what it was. They implied though, that because of the other mets, they have to suspect that this is a met until further info says otherwise. I've had spots on my liver ever since I was diagnosed 4.5 years agp, but they've all been considered benign, cysts, hemangioma, etc. All supposedly very common in the general population. I've got my fingers crossed that this new liver spot is just another one of those benign conditions of course. Can't believe I'm saying this, but I am really hoping for "bone only". (It's come to this.)
Bone scan results are still not in, so I'm still hanging around here terrified of what those might show.
I felt really lucky that an old friend insisted on driving and going with me, so a lot of my anxiety while waiting was diffused by sitting there with her, chatting all about our other old childhood friends, families, etc. I was done around noon, so my friend and I talked about going to get lunch and when I told her my sister in law would be so jealous to hear about us going to the place we discussed, my friend who was driving said, "Call her and see if she wants to come too!" I was surprised, because they barely know each other, and my sister in law is in a real bad health way too, so we were going to have to go out of our way to pick her up, as she can't drive these days. My friend was more than happy to go get my sister in law too, and she was just jumpin' to go, so the three of us all had a lovely lunch time that took up a bit of the afternoon. I got home late afternoon, and was just fried, though. Mentally and physically.
The time I spent on the bone scan table (about an hour) was really hard on my back and I woke up real sore this morning, and it hurt really bad to type. I just got back from a good long walk though, and I think it helped my back issues. I almost didn't type this long email out, but so far so good. Just hope I don't regret it, when I get up from the computer. Those tables have super hard surfaces, and I don't know how well I'll be handling them in the future with these spine and chest bone mets. Killer!
Please let us know too, when you get your results back. I'm really hoping for nothing but good things for you! Take it easy for the rest of the day and get a real good night's sleep. It helped me a lot. Thanks so much for thinking of me.
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The nuclear bone scan table was the only one I had trouble with. I dont know if it was because it was sort of like a sling and I had to wiggle my way out or it was hard, I just remember it being extremely uncomfortable to get out of it. Never had another bone scan again!
Actually, that reminds me, a lot of you ladies are getting bone scans on a fairly regular basis on top of the CTs with contrast. Are your doctors worried about the radiation amounts in your bodies?
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Told and threetree, so glad that first step is over for both of you. Hoping that your MOs have a good plan for each of you. If you will be scheduled for routine follow up scans, your MO should be able to schedule an appointment a few days after the scan date. That's what mine does.
Eleanora
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I meant tld. Sorry for spell check
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Thanks so much, Eleanora.
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Threetree, I am so sorry that the CT scan did indeed confirm what you had thought. I pray that the bone scan results are good. I know this is nerve-racking. It sounds like the rest of your day was good though and I am so glad you had a nice lunch with your friend and sister-in-law! I too thought the bone scan table was very uncomfortable. Fortunately, the tech put some pillows under my knees which did help a little bit.
Sondraf, I have had a lot of CT scans in the past, in 2014 and 2015, and the doctors did express concern then about the sheer number of them that I needed, but they said at the time the benefit outweighed the risk. Maybe that is how they feel about it for us going through bone mets? I am not sure - just a thought.
Eleanora, I am glad too that this first step is over. Now the next hard part is waiting to find out the results!
It is a relief to me to come here to this group and talk freely about this. I do talk to my husband about it but we also have a daughter who is very sick with a chronic illness. I try to not talk about it too much because we already have this heavy and constant daily worry in our lives with our precious eldest girl. Just grateful for all of you.
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Threetree- also hoping the liver is benign. I remember in 2017 when my labs were off in many categories and my MO wanted a bone marrow biopsy- she told me the possible things we would find- the best case being metastatic breast cancer- I remember feeling relieved that that was the diagnosis. - strange
Also, with every PET I am always relieved it is still bone only- I get scared every time I open the results in my portal- I still do it long before I see my MO.
fingers crossed for you!
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Nkb - Thanks for that! I don't know that we could ever become "unafraid" of what scan results might say.
td2017 - I had pillows under my knees too, and they had me in some sort of neck rest, but it all just killed my back!
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Sondra,
yes Drs are concerned about too much radiation causing another cancer. And the longer we live the more we get. Since I have a slow growing cancer Grade 1, the plan is every 6 months unles
s I have new pains and/or tumor markers go up.Hang in there everyone.
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td2017 and all you others who have been so helpful and kind about this (you know who you are): I got the bone scan results back last night, and like the CT I had on the 14th too, it pretty much just confirms what the CT in the ER two weeks ago showed. A couple of new spots lit up on the bone scan, but they are still in bones in the spine, rib, and sternum area. One new one appears to be on my right shoulder. Aside from the still indeterminate new spot that CT showed on my liver, this does looks like "bone only". Really hoping with all my heart that that liver spot is yet another benign condition, as I have other benign spots there. Thank goodness they didn't find any additional spread unless that liver spot turns out to be bad. I was so worried they might find it in bones in my lower body too.
Now I guess I just wait for the dr to decide what she wants to have biopsied and then what kind of chemo she wants to give me. I'll see her for follow-up on March 1. Not at all looking forward to the rest of my life being nothing but drugs and horrible side effects, but so many on here seem to be doing OK with it, that I guess I've got to give it my best shot.
(Still super sore from that bone scan table - real hard on the mets areas of my spine and chest, making it real difficult to type. Assuming it will improve within a couple/few days.)
td2017 - Any word yet on your scan results?
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Threetree
Fingers crossed for bone only. That's my current status and my MO has me on Kisqali and Fulvestrant. I also get XGeva for bone strengthening.
I had severe GI issues with Kisqali at the initial dose of 600 mg and was lowered to 400 mg after only 10 days. Still had GI issues, just less severe. My MO offered to lower it again or switch to Ibrance, but I chose to stick with it, and after about 3 months the side effects became minimal and occasional. Not all side effects are horrible, and even the ones that are can be treated. Just something to think about as you enter this new treatment phase .
Hang in there!
Hugs,
Eleanora
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Eleanora - Thank you so much for the info re your chemo experience. I certainly didn't like chemo the first time around, and the AI side effects, while bearable, have not been pleasant in the least. I'm just super worried about how well any of the drugs they give can be tolerated.
Thanks too for the hugs, and you get some right back!
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Threetree- have you tried any drugs yet? could you fill out your profile and make it public or write something to let us know?
I have been bone only for 6 years- did Ibrance and fulvestrant (shots) for 18 months- when progressed did Afinitor and aromasin (hard treatment for some- but, I did well) for 10 months and then Xeloda for 2.5 years and now on Enhertu for her2 low. for 4 months. they all worked for awhile- some people are super responders and some people a drug just doesn't work. there are now 3 CDK4/6 inhibitors to choose from and other drugs if you have certain mutations that could work also. I have also had a few zaps to some bones when there was a small area that didn't respond and then rest of the bones were quiet.
Let us know what you decide.
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Divinemrsm I wholeheartedly agree with you. I take a small dose of an anti anxiety med to keep myself from making every symptom or pain or sensation bigger than it is. It also takes the edge off dealing with not so great news when it comes. It is still not so great, but I can at least look it in the eye without shaking in my boots! I don’t like the feeling of being dulled down or tired. I think a light dose does that for me. I have been discouraged by loved ones to take meds. My answer is - come and say that to me when you are facing a disease that is not curable. For however long I have left, and I am hopeful it is years, I don’t want to be miserable and worried every moment. We deserve as much peace of mind as we can find, without completely escaping.
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Taking in all that everyone is posting about. Trying to take deep breaths. My CT and bone scans results are both in my mychart, waiting for me to look at them, but I refuse. I can't. Too afraid. Unless my doctor's office calls me beforehand, I won't know the results until my appointment on the 23rd.
Threetree, I am glad the bone scan did not show much more than you were expecting! What do they do to find out more about the spot on your liver?
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