Bone Mets Thread
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Thanks for all of your suggestions. Still having a rough go with the back issues here. What I've figured out I cannot do is go to sleep in my bed. Very difficult to get up from the bed. I'm much better off in my recliner. Using heat and Advil and Tylenol Arthitis.
Will see the NP at my cancer center next Tuesday. I have asked her for a referral to a doctor who could look at this in greater depth and who also understands immunotherapy. Being on keytruda, and with bone mets, I don't really feel that I can just waltz into my primary's office or to the closest urgent care. So -- to be continued.
Bev
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BevJen, that seems a long time to wait. I know all immunotherapies can cause arthralgia and myalgia but this sounds worse. Could your MO call in a rx for a muscle relaxant for the weekend? I'm worried about you this weekend in pain
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Hello, I have had MBC for 4 years now, treated with IBrance and letrozole. However, the cancer has now progressed to my ribs and I wonder what the recommended second line treatments are and your experiences. I am really nervous. Thank you.
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Polemonium, I am still on my first line of Ibrance and Letrozole. My doctor said second line will either be Xeloda or Afinitor. I haven’t researched them yet. I am also ER+, PR+, HER2-
Can I ask how they diagnosed it in your ribs. I was just curious because nothing sees my cancer except for MRIs, and they’ve never mentioned my ribs.
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BevJen, I had back spasms once and a massage therapist worked it out. There is both a massage therapist and acupuncturist at my cancer clinic. Love them both.
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BevJen, I’m sorry to hear that you are suffering with such backpain. What moth said is certainly true that -algias are a known immunotherapy side effect. I do get a fair number of aches, pains, cramps and creaks but nothing that sounds as bad as what you are experiencing. Hope that the heat pad, Advil and rest this weekend help and that your doc can help with the pain soon. Let us know what the doc says.
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Again, thanks to all of you who have posted about my back issues.
My daughter, the athlete (3 time triathlon finisher & a marathoner) suggested that I get some Tiger Balm and try that. So off to CVS my DH trekked. We tried it last night and wow -- what a difference. Much better response than the ibuprofen or the Tylenol arthritis or those stick on heating patches. I still slept in the recliner last night, but the Tiger Balm provided such relief -- the only problem is that my poor husband has to put it on and rub it in because I can't reach all parts of my back very well. So, for future reference, I pass this information along. I didn't even take any OTC meds last night and woke up this morning still stiff, but not in pain.
I'm now thinking that this could be degenerative disease in my back (of which I have a LOT, consistently mentioned on my scan reports, especially the bone scans) perhaps exacerbated by the keytruda and also I may have done something to cause it (even though I don't remember). I have not been exercising for months, between winter, the pandemic, and not always feeling great, but I guess that I need to get back to that, too.
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I felt soreness in my ribs. I had my scheduled CT Scan, which showed nothing new. But my ribs still hurt. Only the bone scan showed the problem. Glad I pushed back.
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Polemonium, I agree that Xeloda is a likely candidate for your next treatment. You’re similar to my situation with a long period between original diagnosis and stage IV.
Interesting how much scans differ for us. Bone scans are useless for me. We track with CT. Not surprised that you need MRI KBL. ILC is sneaky
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BevJen - I'm glad that the TigerBalm helped. I will get some for the future. I also used a foam lumber support in my recliner that was recommended by my physical therapist. I hope that you are pain-free soon!
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Theresa,
OOOH. I'll bet that would work great. I'll look into it.
I think that I need to go back to PT to learn some core-strengthening exercises. I have weak core muscles anyway since I had a bilateral mastectomy and they pushed a lot of muscle up for that.
Thanks.
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Haven't been on this thread in a while, but will chime in a little.
Moth, I had rads to T11 5 yrs ago, 10 sessions back then. The little bugger has been inactive since. I never had pain and still don't. I didn't have any SEs either though I see mention of some lung tissue scarring in CT reports they relate to radiation therapy.
BevJen, so glad the Tiger Balm worked for your pain! I have degenerative disease all through my body, but especially joints. AIs definitely exacerbated it for me and Keytruda may be doing it for you.
Sunshine, I have been using a cane for 5 yrs now after Anastrazole and Letrozole exacerbated my joint pain and made it difficult for me to walk. I never worried how it made me look old, but it helped me feel more steady and confident walking; I'm 62. It's amazing how quick people are to open doors and help me in the grocery store when they see me coming. Lol. I also have the Hurrycane and MO filled out paperwork for me to get a handicap placard. I can walk much more quickly with the cane than without. A friend suggested walking sticks and DH bought them, but I haven't actually tried them out yet.
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BevJen - I've been told that the yoga plan move is one of the best core strengthening exercises and I find it much easier on my back than sit ups. Now I just need to take my own advice and do some planks. I have strong legs, but a weak core.
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Polemonium, thank you for letting me know. Like Sadiesservant, bone scans do nothing for me either. I was full of the cancer in my spine, and it showed nothing. I guess I won’t ever know if it’s in my ribs.
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BevJen, I get lower back muscle spasms every few months. I have spine and hip mets, but they are currently looking inactive on PET scans. It starts out with a few days of a "tight" back, then invariably something happens that causes a really hard, long spasm that has me lying on the floor for half an hour unable to get up or move. The previous time it was bending across the coffee table to pass an ipad to my daughter. The last time it was setting a small box of markers on the floor.
The pain is REALLY terrible for a couple of days (I'm talking not being able to get up without help, not being able to sit but only to lie down and not being able to turn over in bed), then fades over a month or so. Things that take the edge off and speed up the process: TigerBalm PATCHES. I buy the large ones from Amazon, and they are wonderful for about 48 hours/patch. The only downside is that you can't shower with them or for 24 hours after you take them off. Vigorous massage of the Quadratum Lumborum, buttock muscles and paraspinal muscles (I have a TheraCane and a massage gun, and they make a huge difference); taking a low dose muscle relaxant (cyclobenzaprine, 5mg) for 3-5 days before bed. Using a lumbar support pillow or the lumbar support setting on my couch and avoiding any position that causes the spine to curve.
What I really need to do is not sit so much and strengthen my core, but I'm finding it hard to get myself motivated. Hopefully once spring is here...
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Piggy,
Wow, thanks for posting. That sounds so much like what happened to me except I had about a week of pretty bad pain, and now it's just sore in a dull sort of way -- don't know how long it will last. I just have to find a doc to give me a muscle relaxant, and I'm going to try some of your "tricks." Theresa45 also suggested the lumbar pillow, so I'm going to get one of those for sure.
And I'm with you on strengthening my core -- I haven't exercised much since last September, and I think my poor back is now bearing the brunt of that. My husband just bought me a Cubii, but I don't know if that will just help my legs and not my core. If I could get the motivation to get back into the pool, I could start water walking and doing my own version of aqua fit, which I found made everything work better. Sadly, no classes right now.
Thanks
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Bliss58, thank you for you comments about the cane. I've used it a couple of times to walk to the grocery store by myself. I do think it "warns" people that I may not be steady on my feet. My husband says I can use it to push people away if they get too close- haha!
BevJen, I love my Cubii. It fits under my desk and I'm using it right now as I type. I don't know how much it strengthens my core, but it is good to get my legs moving. I think I "felt" it more in the beginning. Maybe I just need to up the resistance on the dial. I got the Cubii Jr. It doesn't have the Bluetooth stuff, but all I really wanted was to be able to pedal while sitting. As I'm typing right now, I'm sitting straight up without my back touching the back of the chair. Most of the time, I'm resting against the back of the chair. Let us know what you think about yours.
Edited to say: I also ordered a set of hand weights from Amazon. They're a set of 2,3 and 5 pounds. Sometimes if I'm sitting here pedaling while watching a TV show, I can do some upper body work. Before I got the weights, I was using cans of tomatoes or beans. It worked, but the weights are cuter than the cans!
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BevJen, I've remained silent on your question as I couldn't recall having this issue. However, Piggy's explanation turned on a light switch in my brain. I did have a severe bout of spasms last year. I've had back problems for a long time so didn't make a connection with bone mets. It started with brushing my teeth first thing in the morning. You know how you do a partial lean over the sink while you brush? Well whammo.. I had a terrible spasm that made it almost impossible for me to stand up. I had trouble for several days, treating it with a combo of Voltarin, Ibuprofin and heat. It finally went away thank goodness.
As to the Cubii... I don't think it will help your core. It's a problem I have as well but find the exercises really difficult. Planks just about kill me! Fortunately, in terms of exercise, I have a Cubii named Sadie who needs plenty of walks.
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I was prescribed these by my PT and RMT team to rebuild my core strength. As always consult with your team before starting
If you're not ready to plank, a simpler exercise to begin building muscles along the spine is the superman. Lie on the floor, face down, in superman position. object next is to lift stretched arms and feet up. start slow. One arm at a time. Hold for a few seconds (or not at all if it's hard). One outstretched leg at a time. Then gradually both arms. Then eventually both arms and legs. It builds the muscles that run lengthwise along the spine. You can also alternate left leg, right arm; right leg, left arm - this gets a bit of diagonal muscle work in.For the tummy, the simple core exercise is a modified bridge. Lie on your back, arms along body or out to side, knees bent, ankles right under knees. Raise butt off floor. Try to not use thighs for this but rather tummy and butt. Do it slowly rather than jerking up (because that tends to use thighs to push up instead of tummy and butt to raise the torso up) . Hold (or again, not, if it's too hard). That's it. Do 5-10 reps. Repeat a few times daily.
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BevJen- definitely strengthen the core- will really help your back. You might want to consider some of the easy beginning Pilates exercises until you get stronger. I think that a modicum of strengthening early on pays off big time. lumbar support and strength the mid back so you can stand up well. find the thing that works for you. glad you are feeling better
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When I saw the NP at my center yesterday, we discussed my back. I told her that I had had to go to PT in 2018 for a back uprising, and that it helped. After that, I started doing aqua fit, which I did religiously in The Before Time. Once the pandemic hit, I continued to do my own thing in our community pool that combined all of the stuff that I remembered from my aqua fit classes. But one that pool closed, I stopped.
Anyway, the NP gave me a script for 30 PT sessions and sent the referral out while I was there. I will call them by the end of the week to see if I can get this started. Hopefully it will help some, as it did before. And then by the end, maybe I'll be able to at least get into the pool and mimic my aqua fit classes!
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I started rads to my T11 today (will be 5 total)
Easy peasy so far. I've noticed that they have a different protocol for bone tx - table is more padded, headrest is padded, everyone asked several times about pain before touching me. I just did rads in Dec for my lung and it was same room, same team so it's their bone protocol that's different. I have no pain so it's not an issue for me but nice to see they're being patient-centered around this issue.
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Moth,
Good luck with the rads.
Good to know about padding on the table. I was wondering how I was going to be able to stand lying on one of those uncomfortable tables if my back was still bothering me and I had to scan.
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ah well alas the CT table is the same hard slab covered by a sheet as alwaya 😯 the "bone mets hurt" memo didn't go to the diagnostic radiology peeps yet, just the radoncs....
I hope your pt is scheduled soon and helps you pronto!
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Good luck with the rads Moth. Last week I had 5 on T12-L1 (4 grey each day). Itolerated radiation well in the past but I had a lot more SE this time. I hope your experience continues to be easy peasy.
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BevJen – That's wonderful that you were able to be referred for PT! The PT should also be able to help you strengthen your core in a safe way.
Piggy99 – Thanks for sharing what works for you for back spasms. I'm taking notes… I have spine mets and have had two terrible bous of back spasms, thankfully months apart. Next time I'll be better prepared.
You've all inspired me to get back to planks and superman exercises. My legs are strong, but my core is very weak. I'm also going to investigate a Cubii.
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hi guys ,
I figured this board would be the best to ask. how sensitive is a bone scan plus Spect/ct?
My MO booked my mid way scans , a CT and and a bone scan. I had never had a bone scan up to this point as previous scans and Pets haven’t required one. To be honest I’m not sure why it was ordered. But none the less, we are here.
So I do the head to toe scan and they said they always do lateral ribs for cancer patients.
Then they told me to get dressed and the dr would check the pictures to make sure all were good enough for review. Then they come back and say they need another picture of my pelvis. So instantly alarm bells go off in my brain. But whatever I do it and then they come back out and tell me they see a “blip” and that they want to get a 3D view (SPECT/ct) to make sure what they’re seeing isn’t something to worry about. And I get it , they want to be through and I appreciate that because if I had do go do it again with no answers at my follow up , I’d be upset. Anyway , I’m concerned.
I’m 12 weeks into Abraxane as I was NED for two years until my last ct scan in December showed a recurrence in my liver. No bone Mets were seen. My friend who had experience in nuclear medicine said it could be anything such as the bladder blocking the view , the tracer coming out of the bladder , could be pee (apparently this can happen) , could be arthritic. But it’s hard not to panic because what if this means it’s spreading while on treatment and my treatment is not working ? But all the same , there’s no other bone scan to compare to who maybe it was there all along. Or maybe it’s nothing
I Will get answers next week but I wanted to see if this is a common thing ?(having to get more bone scans bc it’s unclear /something Innocent).My dexa scan last year showed low density in my hip so I’m just hoping that if it’s something , it’s arthritis (at 33 no less )
I’m sorry for rambling . I’m a ball of nerves.
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Hi B-A-P,
While I think it’s great they are being thorough, it seems very odd from my experience. Mind you, in my case bone scans are pretty useless - they show very little but on the CT? Whoa! Extensive mets. I take it that is not the case with most people. (You did answer one question for me though. I couldn’t figure out why, suddenly, they started to take extra views of my ribs. Pain in the butt as bone scans end up being so protracted.)
I completely understand how stressful this must be but don’t know if it would be enough to have your MO change treatment if, in fact, it is a bone met. I think the focus will be keeping things stable in the liver. If it was me, I would zap the little blighter with radiation.
Wish I could be there to hold your hand as you wait for your appointment but sending a virtual hug in its place.
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thanks Sadie. I know it could be completely benign but it’s hard not to focus on the what if’s. I would like to have a win And know the liver is improving. I know rads can take care of a silly met to the bone if need be , but I think I’m stressed it’s a sign that it’s not working in the liver.
I really don’t know what’s next in the plan anyway. they said 6 cycles and then a break. Whatever that means for me.
I want to stay calm because stressing over something that could be completely innocent is a waste. But it is hard to not be concerned at the same time.Gotta love the waiting game
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Great core strengthening suggestions Moth! I do think that some of us are probably not supposed to do planks if we have lymphedema in an arm or if we have implants...at least I think that is what I was told. The superman move I need to get going on. I started acupuncture to try to help with my back issues. Too early to tell if it will work but PT didn't help and they told me I would need to have surgery. I am not convinced and have actually improved some since finishing PT in August.
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