Bone Mets Thread
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Im 4.5 years in on bone only mets, but everything is clustered in my lower lumbar and pelvis (except for two very small rib lesions that were new). Up until about a year ago I was trucking along fine, had a fracture at L3 I didn't even notice until they told me based on scans. Now Ive been having major issues with well, not sure what really. I think its a muscular/tendon issue, oncology think its cancer, and its just been getting worse. I think I know what it actually is and we will get this sorted eventually, but it is very frustrating to deal with. Overall my bones DONT hurt, but the mets can make the surrounding structures irritated.
I was working up until January when I took medical leave in order to have the time to get this under control. I worked from diagnosis because I didn't know what else to do and it was then Covid times and I could be at home anyway. My job is weird and unfulfilling, but it meant a steady paycheck while working from home these last years. Not every drug will make you feel terrible, and some will make you feel really (and I mean REALLY) bad, but you just have to go with the flow and manage best you can. I was also very active and traveling and out and about, so this is all been a very very frustrating year+.
Part of the work equation for me is having something meaningful to focus on in my life, where I feel a sense of accomplishment and reward. This job now is a means to an end in terms of pay, but that lack of the former hasnt helped my mental state. When I have my pain free moments during the day, I really do feel excited about finding a new job, even if it pays less, and meeting new coworkers, etc. I think its important to have a life outside the cancer bubble, for as long as possible. I do have to say though that my tolerance for office bs is super low - I really cant be bothered with setting up or dealing with projects that go nowhere or trying to convince people to do something. Sometimes it hurts to see others my age (46) zooming ahead with their careers or whatever and well I just… cant. I cant take the stress anymore (last project I ended up with an embolism in the hospital) and I am learning to accept that. Now my focus is on finding something more fulfilling and engaging than the actual money.
Dont worry too much about a reduction in dose on a CDK 4/6, if it makes your life better. I waited too long to reduce to a manageable level on Ibrance, and regret the weeks I spent feeling terrible and low when I could have been you know, doing things and feeling happy :) And the bone strengthener its ok to wait, you ARE on treatment, its just another additional layer of support and protection.
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I echo everything @cure@cure-ious said above (multiple bone mets only, Er+/Pr-), except I am only 20 months out from stage IV diagnosis. I take Kisqali and had a terrible time with the initial 600 mg dose. It was reduced to 400 mg within the first month, and after a month or two of adapting, I lead a pretty normal life. I have had repeat stable scans and am now on a 6 month schedule. Every time I get the "all clear" I plan ambitious projects and travel. I don't work but I could if I needed/wanted to, although being immune compromised would mean working from home. I ride a stationary bike for 45 minutes every morning and take 3 mile walks every day that weather permits.
Don't fear the Verzenio reduction. I believe that there's research showing that the results are as good as the higher dose. I think that the FDA now requires that all clinical trials include testing at least one level below the maximum tolerable dose for the very reason that so many of us required reductions.
I wish you a long run on Verzenio.
Eleanora
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I understand your need for engaging and fulfilling work. I've had my share of mind-numbing jobs and piling that on top of dealing with cancer is more than you should have to bear. I no longer have that problem, as cancer arrived just after I retired, however retirement presents it's own issue of remaining engaged "outside of the cancer bubble".
I am still in reasonably good physical condition, so have told very few people about my cancer, as I just don't want that to be the conversation all the time. Each time I get a stable scan, I plan travel and home improvement projects for the 6 months until the next scans, and stuff that cancer bubble into a small locked box in my head.
Am I in pain? Absolutely, as I have extensive arthritis and muscle issues in addition to multiple bone mets. I take gabapentin and celebrex daily and apply 5% lidocaine patches or voltaren gel where needed. I hope someone answers your query about TENS units, as I have one and would love to try it.
I wish you success in your job search.
Eleanora
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jen, do you take anything for the tailbone discomfort? I take arthritis strength Tylenol when needed. I’m allergic to Aleve, or I would take that. I also love using a heating pad in the winter when I’m on the sofa watching tv or on my iPad.
The NP should be able to advise you about starting Zometa, altho she may say wait till you talk to the onc in March. I agree with all curious, eleanora and sondra’s advice. It sounds like you are doing everything that’s within your power to do. If you fracture or break something, you’ll either feel pain or it will show on a scan. I lived with bone mets for almost 13 years before I had trouble with my femor, which aging issues could have contributed to, as well mbc and long term use of Zometa. But I spent many years before that walking/hiking, line dancing, swimming, gardening and being generally active without worrying about fractures. It wasn’t like I was a ball of energy, tho. I learned to pace myself. Generally, if I’m really active one day, I rest up the following day. I worked for five years after diagnosis, but the job kept changing becoming more physically challenging, so I went on disability.One more thing. Always listening to others’ troubles but keeping your own problems to yourself is something I used to do, too. But it’s really not good. It’s a way of devaluing ourselves, making ourselves smaller, less important. Society conditions women to put ourselves last and take care of others’s needs while disregarding our own. I’ve learned to challenge those concepts. I did some soul searching. I had to develop boundaries. I had to stop taking on all the cares of everyone else and start showing up for myself, learn not to feel guilty about it, and reject the idea that I was being selfish. We are allowed to take care of ourselves. Yes, I still help others out and listen to others, but not at my own expense. Not wanting to discuss your difficulties with someone else because you fear it will bring them down is putting their needs first. What about you? Getting your needs met is important, too.
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@jen1 I'm sorry you're here with us, but this is a wonderful place for support. My most painful mets were in my hip. Palliative radiation really helped with the pain. I was diagnosed in 2020 just as COVID was exploding. By the way, if they use the word "palliative" with you, don't freak out thinking it's the same as hospice. It just means that it's designed to help with the symptoms and not intended to "cure."
Talk when you need to. I did have a few people who totally freaked out (NOT helpful) but most have been very supportive. I don't think I look sick and people who don't know me would never know that I have Stage IV breast cancer.
Have you met with an orthopedic oncologist? I did in the beginning as she wanted to make sure my femur was going to break spontaneously. So far, I'm OK with that, but I do report new or worsening pain to my MO. She's good about scheduling scans when necessary. That being said, you DO need to be your own advocate. You know your body better than anyone and you know when something isn't right. It did take a little effort on my part to get the mets to my esophagus diagnosed.
It's hard, especially in the beginning, when every little ache or pain has you wondering if it's more mets or just ordinary aches and pains. This journey is not fun but there are bright spots along the way. I find writing helpful and started a blog—mostly to let my friends and neighbors know how my husband and I are doing through this. The writing has been sort of cathartic for me. I get to let people know what's going on and show them that I'm not curled up in a ball of misery (well, most days, anyway). I have a rather warped sense of humor and usually try to inject something funny into my blog posts. One neighbor says that I make her laugh and cry when she reads my blog. I couldn't ask for more.
Keep us posted on your journey and progress.
(((hugs)))
Carol
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I have a question about spine mets.
I have had bulging discs for years and it has slowly but progressively gotten worse especially at L5. I also have spinal stenosis. I have been through PT (it did help!) and injections - which don't seem to really help anymore. Of course, when I got my stage IV diagnosis, the mets were at L5 according to MRI.
Since diagnosis, I have had one episode where the nerve pain running down my leg got very, very bad. Then it let up a lot - which is par for the course with me. It was the typical areas that usually bother me. My oncologist at the time said "you have to assume its cancer causing the pain". I went to a radiation oncologist and he seemed to think that if it was cancer, the pain would never come and go and would never let up and the pain would be felt mostly in the spine, whereas mine is nerve pain. He seemed to think the MRI was showing disk/stenosis issues, not cancer, but couldn't be sure. He also said that some people can get a dose of radiation just to help with the pain, even if it isn't cancer related.
My question is what did people with spine mets experience? Was it constant pain? Did it come and go? Was there something else that led you to believe it was due to mets? What type of doctor would be able to better diagnose what this pain is from. I might also consider surgery if it is just due to disks, which is where I was headed when this stage IV mess started.
I am seriously considering a dose of radiation just to help these painful episodes.
Thanks for any help.
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Sunshine99/Thank you for your response. I will talk to my doctor about orthepedic oncologist.Thank you so much
divinemrsm/Thank you so much. You always calm me down.I do have to make myself a priority. I am doing a little better with boundries but have a long way to go lol
elanora/ thank you so much for the encouragement about the Verzenio.
Sondraf/Thank you
Cure-ious/Again thank you.
I hope i did not forget any one. Thank you Ladies. I will follow up with all of your suggestions.
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Might be a good idea to check in with the orthopedist. My lower spine L5 S one area is a total wreck. I do get off and on pain there and that’s also close to the area that has the bone Mets. It’s hard to tell what’s causing the pain but since it comes it goes I am assuming it’s not the cancer if it gets worse or constant, then I’ll go see my ortho and see what he has to say.
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My worst pain was in my hip. I also had mets to L4 and L5 and my femur. The rads helped the hip pain tremendously.
Carol
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jen, learning to keep boundaries in place is an ongoing process with me. It started with my siblings after I noticed so many red flags in my relationships with them. Just because I love them doesn’t mean I have to tolerate poor behavior on their part. I could not believe how much anxiety I had when began practicing firmer boundaries! And I was never, ever rude to any of my siblings, always nice when I said no to things or voiced my perspective, but I initially felt such guilt! Still, I stuck with it. After awhile, I realized that I lacked boundaries within even my good relationships, so I began working on that, too. Surprisingly, these boundaries improve my relationships. The more I flex those muscles, the more natural they become, tho it’s always a work in progress.
Sondra, I sometimes forget how young some of the members here are. You mention you’re 46; it makes me angry that someone your age is dealing with this health battle. It is so unfair. My heart goes out to you.
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Just a general question for anyone who has had bone Mets progress, did you feel an increase in pain and know something wasn’t right prior to the scan?
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@margesimpson Well, depends. I had a fracture at L3 I never felt, and apparently my L4 is getting its grow on and I had some new (small) rib mets but never felt them. When I knew I had progression though, I think it was just a general feeling of being off - a bit more sore, maybe not walking as well, things not quite 'normal'.
One in particular was the met on my sitz bone (right at the bottom of the pelvis, where you sit on a bike saddle) - I KNEW something was growing down there because sitting on a bike was more painful and watching tv or laying down I was trying to massage that area (its tough!). Usually if I am trying to massage an area or ice/heat it more frequently then that is a good sign that something is brewing.
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@margesimpson Some bone mets I feel, others are asymptomatic. If I had to quantify it, I would say I feel about 40% of my mets. And they hurt me sporadically or after placing pressure when standing or walking rather than consistently. Although femur damage is making walking harder and harder, right now I’m sitting on the couch and don’t feel it. I will say that before my last CT & bone scan, I felt some pain in both legs below the knee which I was thinking might be nerve damage in my feet radiating up. Nope. One tibia and one fibula now have lesions. And I was feeling some sporadic scapula pain which I was hoping was related to my healing liver. I had read that liver pain can radiate into the right shoulder so I thought maybe the scapula too. Nope. It was a new lesion on my scapula. Sigh.
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Hi Ladies, I have some questions. Those of you who were on or on Verzenio. My CT scan of lungs have been good thus far, I have had some uncomfortable issues when iI take a deep breath. To make a long story short went to ER last night, they did a CT scan of chest and the doctors said everything looks good no blood clot but said my lungs are inflamed with shattered glass appearance. I think its related to Verzenio. Side effects could be lung inflamation. I called the oncologist on call last night and he said that right now it does not appear that it is warranted to stop the verzenio. I see the nurse practioner Wednesday. The ER doctor told me to bring everything up to them. The ER doctor was not that concerned but felt it was important to let my oncologist know and maybe I might have to see lung specialist. Did any of you ladies experience lung inflammation with the Verzenio or other meds.
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@jen1 that side effect sounds horrendous- I stopped taking it for way less (not suggesting you stop). I’m sure you’re worried and I’ll just hope you get all the answers you need when you see your onc.
@rk2020 @sondraf thank you for your experiences. My onc always says to let her know if anything changes and sometimes I think I’m getting worse but make a recovery! I’ve never felt something and “known” it was progression (haven’t had any progression). I’m wondering if I’m getting arthritis… my hips (known Mets) and feet are aching. It’s what I imagine arthritis feels like. Rk2020 I don’t get scanned below my knee, for some reason I thought below the knee lesions were rare, I bet that was a shock to see all that progression. My next scan is late march so I’m not worried, just genuinely interested if it was something people could feel beforehand.
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Hello @jen1,
We have, on occasion, had some women mention this during the free weekly meet-ups over Zoom. They had their MOs continue to monitor it, and did see lung specialists. While rare, there can be severe lung inflammation while on the CDK4/6 inhibitors, like Verzenio, so just good to monitor it! Here's an article on this:
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Jen1, I had "ground glass opacities" show up in my lungs after starting on Ibrance, and met with a pulmonologist who said it could have been a reaction to the chest wall radiation I'd previously had (when we thought I was only stage 2). It turned out to not be a concern, it was monitored over several scans. But it's a very good idea to get a pulmonologist involved, they are the lung experts.
Four weeks today since my spinal surgery, and I'm happy to report this past week I've felt quite a bit of improvement. Walked a total of 45 minutes yesterday (2 walks of 20+ minutes), did a couple small loads of laundry, put clean sheets on the bed (was on my knees doing that, but hey, whatever works!) Pain has gone down significantly. Shocking that only one month ago I was, at this very time of the morning, in the pre-op area at the hospital, answering questions from the nice nurse, feeling very anxious in my hospital gown and sticky-socks... Going today to get my lupron shot, will Uber there and back since I'm still not cleared to drive, very much looking forward to driving, hopefully soon!
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Jen - Like Sfcakes, I show "ground glass opacities" on my chest CTs, and it has been noted that it could be from radiation (proton) that I received after mastectomy. It is monitored but not considered to be any sort of immediate problem at this point.
Sfcakes -. Thanks as always for the update on your recovery. Seems to be slow but very steady improvement, and that is good for sure. So glad to hear of the recent "surge" in feeling better. Once you get to a seemingly exponential point like this, things usually just keep getting better faster and faster until you reach your "new normal" (dislike that term, but ...).
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I've had two things show up on my scans: the ground glass opacities and tree-in-bud something. Both were monitored by the pulmonologist. Both were thought to be inflammation related or possibly related to aspiration. Both seem to be OK now. They are still noted in my scans, but not a cause for alarm, according to my medical team.
Either way, it's still scary and still just one more thing to worry about, right?
Carol
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Hi Ladies thank you for your responses.
SF-cakes. Thank you dear. I am glad you are feeling better.
Three tree. Thank you
Sunshine99 Thank you
Moderators/Thank you so much for the information
Margiesimpson /Thank you.
I will keep you all posted.
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Circling back to a question I had a few pages back about TENS machines -
Pain management team cleared me today to use one of these on my leg and hip muscle pain area but also were ok on the radiated bone areas. Im a little bit of a wimp to try it on the latter, but feel confident on the former and will give it a go. They didn't say anything like 'oh, no, that is incorrect, bone mets ladies can use these', but they did have a specific look at my most recent scan with where I am reporting pain and suggested it would be ok. So - maybe check with your doctors!
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Thanks for the update Sondraf!
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Hi Ladies: I wanted to give you all a little update. I saw my nurse oncology practioner on Wednesday. At this point she said lung inflammation due probably to the Verzenio, but it had not reached a level where they would stop it. She is monitoring closely. I see my new doctor at the end of the month. Remember I told you all that my regular oncologist is on disability. She wont be back for a few months. I am getting a chest port because of all the problems I am having with my one good arm. Ny other arm has had lymphedema for years since my initial surgery back in 2014 and I don't have any blood draws or blood pressure on that side. So for 10 plus years we have been using my right arm and it has been so difficult when i have to have a MRi or cat scan. I cant take it any more I am so strong but now I am having major anxiety and crying when they have to find a vein. I am behaving like a big old baby lol. Also looks like they are going to start zometa in a few weeks, Ladies some days I am ok and other days I am becoming completly overwhelmed. Do you all sometimes feel like that.
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I hate to say that this is normal because it's not and it sucks. But in the cancer land we allowed to feel like a baby sometimes and cry. I also have lymphedema and everything done on one arm : draws, PET, mrt, infusions I thought I'll be carring less but it turns to be the opposite I am dreading each needle prick, I scream at each miss, and I am not sure I'll do port ( I had it in the past ). Big hugs @jen1
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@jen1 Getting a port does NOT mean you are a baby. I got my port put back in before IV chemo when sticks in my only good arm became difficult due to scar tissue build up. I knew there would be times when I had to have procedures where they couldn't use my port so I wanted to save my arm for that. And I am so happy to have a port!
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I have crummy veins and wouldn't hesitate to get a port. They have a light that makes the veins show now and they are able to get it with one stab when they use that. The veins look neon green under the light. I have only one arm to use and dread those sticks.
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Thank you ladies. I had a port back in 2013 till 2014 when i had chemo. All the nurses were glad I had one. When I mentioned to my nurse oncologist about all the anxiety I was having with my veins and could I get a chest port she said yes before i finished my sentence. in fact she said absolutely. That made me happy.
natalka-poltavka- Thank you dear
rk2020-Thank you
wren44-Yes they use that on me also. The vein finder.
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Hello everyone! It’s been a bit since my last post, just wanted to update everyone. I’m almost 6 weeks out from surgery for my femoral rods. Things have improved but I definitely had some ups and downs. The first two weeks home were miserable and painful. I spent a lot of time wondering why I so quickly agreed to surgery and didn’t ask any of the long term questions. I didn’t know the recovery time period, would I be okay for future MRIs, or when I could drive. Typical surgeons, they just want to cut and not discuss all the other stuff. And they are so charismatic! 😂 But I started home health PT and that started helping me move around and working my legs. I used the walker at first and built up to using a cane. But then I of course overdid it at PT and overworked my right knee. So I spent one to two days not really moving a lot and then using my walker again. That kind of hit my confidence and everything felt hard and never ending. But I worked back up to my cane. I can move around and my DH has pushed me to get out of the house with him and get back into a routine. We’ve gone shopping and I can move using the shopping cart. Some days are good and some days I wait in the car for him. I can do stuff around the house but I need breaks, I get winded much much quicker now. I have pain in my hips but it’s generally an aching and not sharp pains. I am so stiff everywhere and my leg muscles are so tight! It is so hard to stretch haha! Then last week I was cleared to drive, so that’s been helpful. Driving isn’t painful or anything, but getting into and out of the car sucks. My worst things now are stairs and getting up from sitting for a while. I still use a chair in my shower so I don’t have to worry about balance in a slippery environment. And I got discharged from home health PT. I’ll start out patient PT in 2 weeks.
All in all, things are progressing and I try to get a little better each day. I restarted my treatment stuff on 16 Feb, so got my fulvestrant shots and started my Piqray. I just got approved for Truqap, the new medication in the same family as Piqray, and started it this morning. So we’ll see how my recovery continues.
Thanks for everyone’s thoughts and comments. I really appreciate it! I’m sorry I didn’t update sooner but going through the ups and downs really gets to my motivation to do anything but sit around.
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katyblu, I'm glad your surgery is behind you. I'm sorry the recovery has been tough on you.
When I started Truqap, I was mistakenly taking ONE pill each morning and evening, and was supposed to be taking TWO. Oops. Upped my dose when I realized I was under-dosing. So far the SEs have been minimal. A bit of D yesterday, but I really feel I'm getting off easy. Hope it continues.
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Katyblu, it's so good to hear from you. I completely agree about not being fully prepared for the recovery part following surgery, I was so focused on the surgery itself that I wasn't really paying attention to how long recovery would take. These surgeries on our bones are no joke! Sending you lots of love and support through this process.
I'm at five weeks out and while feeling better, I still have pain and can't start physical therapy for another two weeks. Still can't drive, and I'm pretty sure my car is not going to start once I'm given the all-clear, as it's just been sitting all this time, battery slowing draining...oh well.
The emotional ups and downs of surgery just contribute to the ups and downs of MBC. It's been hard, at times, to think that I will recover from this surgery but am still not "recovered" from cancer. Nor will I ever be.
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