Bone Mets Thread
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Dear Star2017 -
Is it possible that your pain and stiffness on rising or after sitting for long periods is osteoarthritis or trochanteric bursitis and not necessarily related to your MBC? I have this, and have had PT for the latter - helped hugely - but also found that the pain and stiffness becamebad again when I was on an AI (letrozole) for a couple of years. Since I started on Verzenio 10 months ago, I now have no hip pain when lying down, getting up or walking, though I am still stiff for a few minutes upon standing but get better after walking around. ( I find I need to be sure to walk a couple miles a day at least to improve pain and stiffness too). I was diagnosed with MBC in September 2018 and was in a lot of pain in my back, chest, ribs, hips, and upper legs prior to that and over the 6 months after diagnosis but over the course of the next year the pain got better and better, I suppose as lesions became sclerotic only and bones started healing. Now, 3 years later, I actually have less back and leg pain than I have in years, though the Verzenio/faslodex makes me more tired than I used to be, I think. I hope that with time on the MBC meds and PT you will feel better too.
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Star, thank you for sharing your story, which sounds really difficult. I identify with the long period of no one following up; though denovo I had a similar experience before they found mbc and it stank. I'm also sorry to hear about your ongoing pain. I would just offer that I have more back pain when I sit, or stand in one place, for too long. Unfortunately my job tends to tempt me to sit a lot. Don't know what your teaching involves, but if it's possible to shift positions, and, when you are feeling better, take regular walks, I find this always makes me feel better.
My finally approved scan is tomorrow morning. Trying to get through a day of not typing or reading much as directed 24 hours before. Difficult in my occupation. But as this will give me first indication since starting treatment about how it's going after about 6 months, want to prepare as well as possible.
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Snow-drop, thank you for the Thanksgiving wishes & inquiring about my arm. Just had a check up with the ortho surgeon & I'm relieved to say I won't need surgery as it is healing well. Yay!
I seem my MO tomorrow & will get results of my nuclear bone scan. There was nothing new on the CT so I'm hoping this will be the same.
I'm sorry to hear so many of you are dealing with pain. I hope you all find excellent solutions to manage pain & mobility 🤗
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MKestrel
I didn’t have spinal cord compression but I did have compression of some nerves. When I was diagnosed with MBC I had a large met on my C7 that was causing the vertebra to collapse, protruding into the spinal canal, and compressing the nerves to my right hand (my dominant hand). I had emergency surgery to stabilize the C7 with a metal cage and a plate to fuse C6-T1.
Prior to the surgery/diagnosis, I was unable to stand or sit upright for more than 2 minutes. I could recline on the couch during the day but even that was extremely painful. I could barely balance my dinner plate on my right hand and eat with my left due to the pain. I was only able to sleep because I was on a prescription muscle relaxant. Without that prescription, my back would constantly spasm … the worst pain I have ever experienced. I can’t fully explain the level of disability and pain I experienced while waiting for a diagnosis. There was very little that I could do for myself and the things I did force myself to do left me panting from the pain and racing back to my couch so I could collapse and let the pain wash over my entire being then slowly lessen so I could open my eyes and return to the world around me.
After the surgery, I had an immediate relief from the worst of the pain because my neck was stabilized (by the surgery itself and the neck brace I had to wear for 3.5 months). I also had radiation to my C6-T1. My body slowly began to heal. The fingers of my right hand began to regain feeling. Ever so slowly, I have regained some of the mobility that I lost in those fingers but not all. I can now hold a pen and write my name without it looking like I’m a 6 year-old. There are many things I still can’t do but I have adapted and learned how to do them differently which may include just asking the hubby. It’s been 11 months since the surgery and I feel good. I can walk, hike, dance, play and have fun. I can’t do everything that I used to be able to do but I can do enough.
I hope my story shows that things can get better. We can heal and we can get our lives back. It may be a bit different but it can be very good.
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MKestral - I don't know how helpful my experience will be for you. I have a compression fracture at T8 as a result of a met that nearly encompasses that entire vertebrae. I have some invasion of the spinal column with that fracture but no so much that it requires surgery. The last several months I have zinging sensations, like being on a tens unit, when I lay down. I don't have it when I am up. You're right, it's from my torso through my feet. My neurosurgeon at this point just keeps a distant eye on me unless symptoms get worse. I'm following your post in hopes others will chime in because I do have a concern that I may be headed down the same road.
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Thanks for replies. I don't know what to do other than just deal with today, keep trying with PT and wait and see what the new scans say I guess.
ilowen - Thanks for sharing your story and the encouragement. I will keep trying to adapt. I'm glad you are getting some function back. It's hard because what we really want is to be 100% normal. There is no way we should have to put up with pain and other symptoms for so long before being diagnosed and treated.
emac877 - Pay attention to if you are getting more constipated than normal or have a weird belt feeling squeezing around your torso, muscle cramps in the legs. I had those before the day of the zaps, where it was nerve shooting down both legs and my toes started going numb and I started losing muscle control. In about a week the numbness went all the way up to my ribs while I was waiting for the insurance to approve and allow them to schedule the MRIs.
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Thank you, everyone, for all the thoughtful replies. I am hoping I get some answers from the ortho oncologist I see Thursday and/or the PT I'll start in a couple weeks.
Moominmamama, I don't have much knowledge/experience with those other conditions, but I'll definitely ask the orthopedic oncologist. He usually does xrays. Not sure if he'll do any additional imaging. Thank you for sharing. So glad to hear you are experiencing less pain.
prairiesea, so glad you are getting the scans you need. I'll be in your pocket!
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Ps: I wanted to ask if any of you noticed more aches initially, after starting xgeva. I had my first dose last month, and I'm wondering if that has anything to do with the increased aches.
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Star - I absolutely had aches after starting Xgeva. I've been on them about a year and I don't know if I've gotten used to it or if they got better. I still feel pretty stiff most days. I get them at the same time I get Faslodex shots though so it could be the combo.
MKestrel - I have had some unusual constipation, which isn't typically an issue for me on Verzenio, and I get cramps in my feet but not my legs. No squeezing sensations in the torso though. I may send a message to my neurosurgeon just to see what he thinks. Thanks.
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Hello Everyone I can’t tell you how much I needed to read.your posts right now
I am in hospital a week now bedbound I posted earlier when it started I think I can’t stand up or even sit up pain has become too excruciating I see others with similar situations they have gone through
I recently have started to lose the ability to lift and use right arm as well which is is devastating as I am an artist
They decided to do radiation which I know some of you posted replies to my last post that you.did well with yours
i think they said I will do 5 rads I am 3 in I got 2 last week and 1 today. Then tomorrow and next day
I don’t see.any improvement yet just pain still patiently waiting. They have me on pain meds and are now adding steroids
I am worried as on Friday I was supposed continue geting my faslodex shots and start ribociclib and bone strengthener soon not sure what happening with that now wondering if I will stay on this treatment path or if they will switch this up
It is so hard to stay positive when your stuck in a bed I don’t know what I would do without reading your posts and all your stories I hang on to all of them tightly hoping I get through this Thank so much for sharing
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star, I'm glad you are supported by family and friends and that your time is spent doing what you want to do and not doing things out of obligation. I get the part where you don't want bc/mbc to define you. It sounds like you have so much going on, three children, a full time job, a recent move. It'd be a lot even for someone who wasn't dealing with the health issues that you are. Maybe you feel you're not getting the recognition you deserve for how well you're juggling all of it. Last year when I needed a blood transfusion (low red blood cell count due to meds), a doctor who just met me on the hospital ward asked my medical history with mbc and immediately grasped all that I'd been through. He expressed his admiration rather than some kind of sympathy and it meant so much to me! Sometimes we need acknowledgement for how we handle the challenges thrown at us.
Anyway, I'm only an armchair therapist with no training. An mbc diagnosis can present a roller coaster of emotions where we feel up one day and very low the next. You are still very new to it all and finding your way.
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Beth,
Radiation can do wonders. Have patience because it does take awhile to notice the benefits. I’m sure your MO is monitoring your progress and will base your treatment on your needs. When I was diagnosed, my MO wanted me on letrozole/ribociclib immediately and she specifically told the RO not to take me off treatment during radiation treatments. Don’t be worried if they delay your ribociclib start date because they may want to stagger your SE so as not to overwhelm you and your body.
If you’re able to get a message to your MO, ask them if there will be any changes in your treatment and what the timeline will look like. You will feel more in control once your know what the plan is.
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beth1965 ,sorry to read that you are bed bound in a hospital. Hopefully radiation will help with the mobility and pain.
I have had radiation to the upper back and lumbar area. Both the times the pain increased after radiation due to the inflammation. That's the reason they give steroids. Hopefully you'll start to notice a difference soon and you will feel better. As you said, it is hard to think positive when you are bed bound but I can assure you that you'll be putting all this behind you soon and start living 'almost normal' life.
Regarding treatment, I was on Ibrance and faslodex and the oncologist did not stop anything during radiation treatments.
What kind of art do you do? I am interested in canvas painting but not so good at it (learning phase,LOL!).
Please keep us posted.
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beth, I hope radiation brings you relief and healing. So sorry this time has been difficult for you.
emac877, thank you. I hope this is just my body adjusting to new meds and healing.
DivineMrsM, maybe I do want to be acknowledged, but I think the pain was escalating last week, and I've just been scared about what it means, especially given that there was a new site of activity on my PET (tho no new lesion). For now, there are a lot of other reasons that could be causing the pain. I was feeling hopeless, and you all helped me to get through it. Thank you.
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prairiesea, I hope all went well today. Thinking of you.
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Beth, I’m so sorry you’re bed bound in the hospital. I hope the rads bring you some relief and your other treatment can get started.
I’ve been riding a high of good days since last Friday but today was a little rough. I’m on my second cycle of ibrance and Arimidex and the last 2 days my hot flashes have increased both in frequency and intensity. And today my right arm started aching, as did my skull. It just goes to show that a little pain/adversity can really start the spiral. I’m hoping tomorrow is better.
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Star 2017 - I haven't told very many people about my diagnosis for several reasons 1) I like to feel normal once in a while so if everyone knew, I would constantly be asked about it. 2)the initial diagnosis was when my daughter was a senior in high school so I didn't want to ruin her senior year 3) I feel the MBC diagnosis is news that is too heavy for friends I am not close to or seldom see. 4) and I don't want to "give in" to it. I am not sure if that's healthy or not.
So I am still working out a good approach to all of this.
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GoKale, I can understand that. It's weird that people don't know this big thing you're going through. At the same time, you don't want it to be the only thing people think of when they see you.
All, I saw the ortho oncologist today. He did an XRay and saw nothing of concern. Thinks the pain is osteoarthritis and/or nerve pain caused by radiation, which should hopefully ease up. I'm hoping that when I start PT in a couple weeks, things will get better. In the meantime, I'll just keep up with the low key activity.
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Cure-ious, thank you so much for that helpful and empowering information.
I want an oncologist who is realistic, but not **completely** doomsday. I ended my initial appointment with her feeling totally deflated. Lining up second opinions now!
It is so helpful to hear your stories/suggestions/perspectives. I am grateful for the time so many of you spend responding to those of us needing a little boost. I hope to be that voice for someone one day!
Thanks again!
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radiation to back of neck spine area seems to to be helping yay I sat up I first time in weeks ready to tackle walking again - you were all right the radiation does help a lot
Just wondering if anyone is on
Faslodex and kisqali combo or have done it It seems it is less used than other treatments the posting here has no one really on it. Wondering if anyone had good results or info about side effects how they were
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Beth, I’m so glad it’s helping. I totally understand asking if anyone is on Kisqali and Faslodex. I’m on Xeloda and Faslodex, and I’ve found one other person who is taking Faslodex and Xeloda together. I’m going to talk to my doctor on Monday about it. I’m thinking since I didn’t take it with Ibrance, that’s why.
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KBL my Doctor said she prefers this combination when I asked about others like ibrance etc. She said she has seen really good results so that’s nice to hear. But I see so few people on it I feel a little out there with not many people to compare with or even learn about SE’s people experience that are normal
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beth1965, I hope you find others who are on the same treatment and doing great.
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KBL I hope the same for you
Would love to know how you do in case she moves me to that one day
We are both ILC I wonder if that’s why we are on different drugs than others I going to start looking around I am curiou
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Go Kale
I too have only told my son of course my husband and 3 women they are daughters of one of my husbands friend. He was a doctor and one had BC 20 years ago.
I don’t see the point. What can anyone do. If I get to the point of NED maybe I might tell some of my friends…right now they know I had leg surgery. I asked my son not to tell my grandchildren but I am not sure if he did or not.I just don’t want to talk about it. I do wish my Onc would talk more to me. She gives very little detail and just says they have made so many advances in the last 2 years.
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Beth1965, I will keep you posted. At doc’s now, so we’ll see what she says.
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Beth1965, she said because I was de novo and had not had that treatment, they can give it to me together. Works for me.
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Accidentally posted twice. Oops.
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KBL sending good luck wishes hoping you do well
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Thank you, beth1965. I appreciate it. Same to you.
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