Bone Mets Thread
Comments
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Carla, I'm so sorry to hear you are having a tough time. I agree with GG27 about the heated blanket. We bought a heated mattress pad a few years ago, and it is one of the best purchases I've ever made. A word of caution, however. Heated blankets can get very hot and there is a risk of burns if you have sensation issues (like neuropathy) which inhibit your ability to know when something is too hot. I make sure to leave mine on low when I'm sleeping despite the temptation to crank it up as high as it will go. I hope things start looking up for you!
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If you have some power even a heating pad will help. Snuggle up to it in bed and sit on it while reading. If you don't have enough power for that do you have any family or friends you could stay with. I hate thinking about you being so cold. We lost power for several days last year and I had to pack up my birds and go elsewhere. The birds had to be kept warm.
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hello. I don't post much in this topic but I always lurk here. Bone mets dx July 2013. So just introducing myself and saying hello.
Freebies / so very sorry for your situation. I know the cold makes my bones ache even more. Hope that is not the case for you. I agree how the hell did I get here in life. Maybe a heating pad will help. It doesn't use much energy. Stay bundled up and stay warm. Wish there was more I could say to help.
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JoburYes that article is very informative. I bookmarked it future reference as I have a few "senior moments" lol. Currently snowing - I live about 80 kms north of Montreal. We are expecting 10 to 15 cms. I like the first snowfalls but end up hating them in Feb, March and April...
Annie - How are you doing today?
Linda
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Hi all of you,
Thank you for trying to answer my questions, we'll see how this all continues .... I need to find confidence in the treatment and know that I should be "happy" that the mets are/were only around my knee and not scattered around.
I empathize with all your courageous struggles and understand we all deal with pains, hopefully all mostly, due to SE.
A few months ago I wanted to quit the HT because of these pains, but also because of the periods of feeling depressed (Letrozole + zoladex): my doctor said I really have no other option!
My best wishes to all of you.
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Hi Solala
I have just recently been dx with bone only mets and wanted to connect to others with MBC. Dont know where else on this web site to introduce myself.
I quit HT in my original treatment due to pain and depression. Now my oncologist wants me to return to it. Just struggling with the decision as well. No ideas for you just empathy.
Wishing you wisdom
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Hi Solala and 3-16-11 sorry you have to be here but welcome. I too have bone mets and "lurk" around here, been reading and posting now and then for a year now. One thing I've learned is that you have to be your own advocate and not let yourself be pushed around! If you don't want to go back on the previous treatment you can say no and ask your doctor for an alternative treatment, there are many HT treatments available if you're er+. On the other hand, I deal with the depression by taking Cymbalta 60mg which is a mild anti depressant that also helps with the bone aches and pains. So you don't have to suffer in silence! Ask your doctor to prescribe something that will work for you for both quality of life and treatment for bc. Sending you positive thoughts and ((((hugs))))
aurora
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Have you tried switching AI's? I was on Arimidex for two and a half years. The joint stiffness/pain became progressively worse so I switched to Femara. So far, so good and still NED. I find that the more I move around, the less stiffness I feel and I do take Advil at night so I don't wake up feeling so stiff.
Caryn
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Hi!
Wel 3-16-2011 the thing is that I was on femara for almost 4 years as a adjuvant treatment after chemo, had to go for 5 years but I quit because I really really thought that I was taking it for nothing ... ... 1 year later the mets appeared in my bones. So the Femara did put them to "sleep" but they woke up when I stopped.(at least that's what we think). When DX with mets they put me on Nolvadex (tamoxifen), but I had skin problems and they thought I was allergic so they put me on Femara again. Thank you Auroaya for the tips, I'll ask my onc next time.
S
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Hello everyone!
Thinking of Liljohnnysmommy, wondering how you're doing since having surgery to your arm. I hope all went well and that you're healing nicely.
Linda I am doing well today, a little sore from standing in line at Walmart for 35 minutes. Sometimes I wish I could announce my back is about to give out, can someone let me in or can we get another cashier here! A few flurries here today, very pretty. How are you doing?
Freebird53, I hope today is a better day for you. I wished there was something I could do to help you but sending hugs and wishes for better days ahead.
Just wondering if anyone here has had radiation to the sternum? That is the one area that makes me nervous, is it close to the esophagus? Can anyone let me know what there side effects were after rads? Thank you!
Hugs, Annie
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Hi Annie,I'm doing very well today - painless day! Funny how it differs from one day to the next. I can't answer your question re rads to sternum, but you are probably aware that rads may or may not cause a flare up of pain (it happened to me OUCH!) for a few days. But the pain relief afterwards was worth it! Although a good day today, I have a lot of anxiety as I'm seeing my Onc tomorrow for results of lungs and vital organs - keeping my fingers crossed. Good luck with your rads.
Linda
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LindaE,Hope you can find something you like to do to keep you busy tonight. At least that is what helped me last time while waiting for my scan results. Be nice to yourself in some little way at least. What kind of scan did you have? I will cross my fingers too that all your lungs and organs are pristine!
Hope the snow doesn't make getting to your appointment tomorrow more difficult. Winter is coming down hard and early here this year. High for the week is 20F/-6C. Brrrrrr
Jo
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I grew up in the east (NYC) but have lived in Northern CA for more than 25 years and in Texas for 8 years before that. I can't say I miss the winter but when it gets to be in the 50's here, people think it's freezing! Kind of makes me chuckle
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Jobur,I had an xray for lungs and an ultrasound for organs. I questioned my Onc why an ultrasound instead of a scan like usual and she told me that images are just as good and wants to avoid too much radiation. I'm not sure I feel comfortable with that but we'll see in 3 months. I have brand new winter tires - can't wait to test them tomorrow. I'm watching the hockey game with my boyfried and a glass of wine for my anxiety.
Linda
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Freebird53,
Hope the power is back on today and things are looking a little better. I was thinking about you while I did my 2am flip flopping last night. Please be careful with those space heaters! They are the cause of so many fires in the winter. Please post again and let us know how you are doing when you feel like it. In spite of how upbeat this forum tends to be, we all know things really suck sometimes.
Jo
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Linda, so glad to hear this has been a pain free day for you
. It's nice to have days like that which allow us to feel a sense of normalcy. Here's hoping for many more pain free days! I feel your anxiety about tomorrow but saying extra prayers tonight that all your results come back clear. Get some rest and sleep well, we'll be thinking of you. Sending positive thoughts your way. And about the rads yes they warned me of a pain flare, hoping it doesn't happen to all 4 areas at the same time. It's good to know it has helped you.Hey Jo, I would have to agree, winter is coming on quickly. I'm not ready for it. The cold makes me more achy. I want to escape to a warm place.
Hugs, Annie
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Linda,I'm not sure I would feel comfortable with that either instead of a CT or PET, but I see you just switched AIs a little over a month ago, so maybe this is kind of an interim scan. My last scan was a PET, and my mo says we will repeat it in 3 mos. When I questioned the amount of radiation, she sort of said that being as how I already have mets, the reward was worth the risk. Not sure I was comfortable with that either.
Wine and hockey there, beer (not for us, but throughout most of Wisco) and football here.
You know you live in the great white north when you get excited about your new tires!
Hoping you get good news tomorrow!
Jo
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Hi Caryn,Are you anywhere near Yosemite? I don't know why, but with all this snow talk I keep visualizing the sequoias in winter. Years ago, DH and I visited them in summer but were told you could snowshoe in to some of the groves in winter. Ha! I wasn't up for it then and I surely am not up to it now, but standing among those giants in the silent falling snow is something I picture in my mind.
I know what you mean about people bundling up in their winter coats when it hits 50F. Funny.
Hope your cold is better.
Jo
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Jobur,At the onset of my Stage 4 dx, I was given Femara. I was switched to Tamoxifen because there was a bit of a panic in April/May when they discovered a met on my femur on a PET scan which did not show up on 2 previous bone scans (another mystery for me). We have only 2 PET scan machines in Montreal and the surrounding areas in our public health system. So PET scans are few and far between. There are private clinics but it costs roughly $2,000 which I can't really afford - but if push comes to shove - I will have one done. After this little panic and further scans which showed I was stable, and because I had severe side effects with the Tamoxifen, my Onc put me back on Femara. What really gets me mad is that if had I not had that PET scan my femur would have fractured. Now that was a real panic because as soon as the ortho saw me, he operated on me the next day (rod inserted in femur). Our health system does not have a good reputation. My Onc is excellent and I guess I have to trust her, although I do question her a lot.
Linda
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jobue,
Thanks. I thought the cold would never end, but all I have now is annoying post nasal drip. I have become good friends with my neti pot:) I live in San Jose, the heart of Silicon Valley. Yosemite is beautiful in the winter, but there are some road closures at the higher passes (such as Tioga). However parts of the park are still accessible. I posted that comment while I was working in my classroom (conference time, so I needed today to just prep my materials for the week and make sure report cards were in order). I turned on the radio and they said, with great seriousness, that some Bay Area spots might get down in to the 40's tonight. I had to laugh because I know that my students will come to school bundled up as if we lived in Siberia!
Caryn
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Hi. I'm having a rough night tonight. I finally did some exercise, and I'm having a lot of pain. I'm not sure there is a cause and effect thing there or not, but my ribs are hurting a lot. I know there are mets there. It has been my most painful area. For some reason my left arm hurts. I'm not sure which bone it is but it is one of the bones below the elbow. Do mets go that distal? Anyway, I'm just writing this down while I wait for my xanax to kick in. I started giving myself an anxiety attack. It's midnight. I should be asleep. Work comes early tomorrow. Thank you for being here to let me vent.
Mom and I went shopping today, and I got 2 nice tops for our Spring trip. LOL. I just had an idea of a kind of a sheer cover for over a shell that I would like for evenings on the ship. My trip to Goodwill the other day was a let down, so we hit a sale at Jcpenney. That was nice. So was the Mass we went to before that. It was a folk mass, and the hymns were great
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Good.morning. I just wanted to let you all know that I am ok this morning. I have no pain in my arm, and my ribs don't hurt so badly. It's allgood in the neighborhood.
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Annie- I had 15 rads to my sternum area and did experience some minor esophageal irritation at the very end of the treatment. Be sure to let them know as soon as it happens. They gave me some numbing stuff to use before eating that helped. Unfortunately it was made worse for a short time by the acid reflux when I stared chemo, but within a few weeks both problems were under control (with Prilosec and the numbing stuff). I did lose a few pounds during that time, though. Looking back I feel it was worth it. My vertebrae mets hardly bother me at all now.
Dunesleeper - Glad you are feeling better. New pains sure are scary in our situation! I had something similar happen recently...pulled a muscle in my rib cage when turning off the bedside light and could hardly raise my arm the next day. I feel I've aged 20 years since my dx 3months ago!
Freebird- Please check in and let us know how you are doing. I've been thinking about you.
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Dunesleeper, glad to hear you're feeling better this morning. I hope you continue to have an awesome and pain free day!
Shutterbug7, thank you so much for your reply. I'm just so nervous with having radiation to all 4 areas within the same week and for 2 weeks. It will end up being 5 treatments to each area using Stereotactic Body Radiation Therapy, very similar to Cyber knife radiation. Just thinking I'm going to have pain in my arm, back, rib and sternum along with esophageal irritation. I pray it won't be that bad and that I feel relief in those areas shortly after. This is all so scary! Thanks again for all the info!
Hugs, Annie
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All~
About the same time as I was learning I had bc and bone mets, I went from walking 2 miles a day to not being able to walk 1/2 block. My left leg has gone gimpy. I do have a bad knee on that side (bone on bone due to numerous dislocations), but it never stopped me from walking before. Had acute sciatic pain on left side last winter, but that has mostly resolved.
My walking problem doesn't seem to be due to pain, my left leg just doesn't want to move correctly. My mo has had a couple of radiologists look at my MRIs, but they don't see anywhere that my mets are pushing on my spinal cord.
Not being able to walk very far or very well is such a huge hit to my quality of life, I am trying to figure out what I can do about it. I tried chiropractic and physical therapy before my mets dx and neither seemed to help much, so now I am thinking of seeing either an orthopedic or neurosurgeon, but I don't know which would be more appropriate.
Any thoughts/experiences would be much appreciated!
Jo
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Dune, glad to hear that you're feeling better this morning.
Jo, I have no real advice for you, but wondered if maybe a cane might help with walking. My friend just had a hip replacement but before that, she said that the cane she used made all the difference in getting out for a walk without excruciating pain. Dee
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So weird... could have sworn I'd posted this a.m., but don't see it now. Hmmm...
Anyway, Hi to all, and welcome solala and 3-16-2011, although I wish neither of you had reason to be here. 3-16, I also quit Femara after just a couple of weeks due to an intolerable SE. But this time around, Anastrazole and I are so far (going on 11 mos) getting along great. (As an aside, I have recently experimented with taking it at different times, and for anyone interested, I have gone back to P.M. due to noticeably less joint pain.) Hopefully, you'll also have a much more positive experience this time.
Solala, I also struggled with severe leg pain when I was first re-dx'd, to the point of hobbling around on a cane. My local onc just chalked it off to extensive bone mets (no testing offered), and my UCLA onc ordered an MRI, thinking it might be due mets in a disc. But a week before that test was scheduled I ended up in the ER when the pain became excruciating, and it turned out I had fractures in both my femur and my pelvis. Based on that experience, if I were you, I would insist on additional imaging, because it sounds like the x-rays could have missed whatever is causing your pain, as they twice missed mets to my ribs, which eventually imaged on a CT. It's also my understanding that ILC hides in the breast because of the way it forms. But I don't think that applies to bone lesions, which should image with the correct modality. I think lytic lesions may image more readily than sclerotic lesions (not 100% sure, but that's my impression), so that's where choosing the right type of MRI or scan comes in. And Jo, I would suggest the same for you. It sounds like something's being missed.
Annie, so glad that extra rad onc appt turned out to be what it was. I remember that Hindsfeet had A LOT of RT all at once, and it took her quite awhile to recover, including extreme difficulty swallowing. You may want to ask her specifically about what she had, and question your rad onc again if anything sounds similar to your tx plan. And jobur, glad the biopsy proved granuloma annulare. Let us know how those shots work. Looks like it's some kind of steroid?
Carla, I'm so sorry for everything you're going through. I see you took down one of your recent posts. I hope that means things are looking brighter in the daylight. Is there anything we can do to help you??? Seriously. You never know what we might have around if you need something. I also can't help but think there must be additional support services or grass roots non-profits out there to help you. Can I possibly help research them for you? PM me if it's easier to talk about this privately.
We were out of town the past four days, so still catching up on reading here and will address anything missed later. Hi to everyone not specifically mentioned. I hope everyone has a really good week. Deanna
PS ~ Caryn, we moved here to the California desert from Vail, after also living many years in Aspen, Steamboat and Park City, but I'm now one of those people who bundle up at anything less than 70, when I use to think that was shorts weather. In fact, that's how you can tell the locals from the snowbirds here – by what they're wearing.
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I'm back in bed already. It's amazing how exhausting it can be to sit on your toosh all day. I was going to do all sorts of other things, but they can wait. Things will settle down. For the next 3 hours I'm in nap mode. Smile.
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Good on you, dunesleeper!
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Carla, I hope you are ok too. I have no wisdom to offer but look forward to checking back in later to learn what others have to say.
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