Bone Mets Thread
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Hi Beth,
I think you're at one of the hardest times, when you've been diagnosed but don't yet have a plan. I hope that the appointment with the doctor goes well, and you have a strategy soon. Wishing you the best.
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hi beth, there are other people who have had widespread bone mets which they got control of. You just need a treatment plan and see how you respond.
This is the best thread for bone mets stuff. Once you find out what meds your MO wants to start, there are threads for most treatments that you will want to join.
Hang in there, this is a tough time for sure
(Ps you might want to edit your sig details as right now it looks like you got bone mets in 2012...I think you want to enter a separate new, diagnosis)
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thank you helps me breathe better to just hear someone say these things. Moth i keep trying to add dx and it keeps adding on first one i will keep fiddling i am sure i will figure it out
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Hi Beth. I have bone mets just about everywhere you have plus a few more places; both shoulders, one of my knees and my sternum. I have diffuse mets in each location -innumerable- which in layman's terms means chock full. I came into my IV diagnosis heavily pretreated as well. I have been stable on Ibrance for 21 cycles now which is 3 cycles shy of 2 yrs. It's treatable with the right drug. I didn't think I'd get much mileage out of anything at all after just coming off heavy chemo and then viola! i'm stage 4, so don't let the tumor/cancer load deter you from thinking there aren't any treatment options or that they can't work. Once your doctor and you come up with an attack plan and you've gone through all the preliminary tests you will be able to come up for air again, I promise. It's just choosing the right drug and you and your MO will figure that out together. Right now it feels like treading water, but in time, you'll be floating making water fountains with your teeth on occasion. Once you know which drug you'll be starting with, there are threads you can go to for support and to ask questions about side effects, we'll point the way when you know.
The first few months will be the hardest emotionally. I can't say the crying spells will go away completely. Some days will be easier than others. You may feel like throwing something at a wall at times. But you will eventually get to a place where a deep breathe about the situation is possible and you will learn to adjust and tweak life to accommodate as you move forward. Hang in there
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Beth, I have many friends who are still surviving long after becoming metastatic. Their mets varied from brain to lungs to liver to stomach to bones. Some are twenty+ years out from diagnosis!
I'm a 27 year BC survivor, 9+ of those with mets. The mets began in 2012 with a chest wall tumor for which I took 6 IV chemo treatments of Taxol/Carboplatin. Result: No evidence of disease! Several years later in 2016 I had widespread bone mets and started Ibrance/Arimidex/XGeva. Those mets had a remarkable response to the treatment in just 3 months. I've had some disappear entirely, some diminished and grew again and there have been new spots from time to time. Sometimes I've just been stable. I've learned not to get terribly alarmed at new spots because sometimes they don't show up at all on the next scan.
Don't let the volume of spots alarm you as these systemic treatments can treat a lot of cancer as well as a little. As others have said you're going to be less spooked once a little time passes and your plan is rolling along. I used to lead workshops for survivors and always had people look each other over for Expiration Dates. Check yourself in the shower tomorrow and you'll realize you don't have one! You and I and these other ladies may one day die from MBC but it isn't going to be today and we don't know which day so we best just get on with living, right?
In the meantime I'm adding you to my prayer list. First I'll pray for peace for you (and those who love you) because that's the hardest thing to come by before your plan is in place. Then I'll pray for your medical caregivers to be compassionate, hope-filled and smart. I'm always praying for the researchers who are going to blow everyone away with cures someday. (Each time I've had a new diagnosis a new drug was on the market that didn't exist before!)
So here's a toast to Thursday and to all these supporters we have on BCO! We are blessed.
Love from PatGMc (who picked out her funeral songs in 1994)
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Patgmc
Please keep posting your experiences and wisdom.
I, too am like Beth, very worried. I am hoping I can feel decent on Ibrance, I started on 125 now onc is giving me 100ml. Onc told me to stop taking 125 and I’m worried I’m now doing nothing. I have one large tumor on my thigh bone and can’t walk without crutches. I need to have surgery. I am hoping surgery will take away the pain. My onc seems very casual with little details just said there is no cure but so many advances in last 2 years. I am so happy for you. Just wondering if you did any special diet and do SE go away with Ibrance. I had 10 rad treatments on my thigh, pelvic area, but no relief for leg. I am not sure what is making me so weak, Ibrance, rads, or the cancer.
now I know I need to do the things I put off but don’t have the strength or mobility. Hope that will change.0 -
Thank you, Pat!! We always need to hear this, even those of us who are a bit further along in the MBC process.
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Beth, I, too, am bone mets only and have been for 4 1/2 years. Initial diagnosis in 1991, with MBC 26 years later. My scans always say "extensive (or innumerable, depending on the scan reader) bone mets throughout the visualized skeleton", so I expect that my situation is much like yours. Your onc will help you figure out a plan! You may also want to consider a second opinion at a major cancer center. I found that very helpful to my own peace of mind, and by seeking that second opinion, I created a fall-back onc for the future. Good luck, my dear...we're here for you!
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wow thank you for the replies it is so appreciated during this time. I came into the cancer world with a huge tumor and lots of nodes and felt defeated until i found this site and so many wonderful people experincing the same journey. I guess i almost felt after 8-9 years i was done with cancer but got the wake up call pretty quick that it is back i know i will find a balance soon again but it just takes your breath away in the beginning no matter how prepared you think your mind is. Again much appreciation to you all sending hugs
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I have been living with metastatic bc for over 10 1/2 years, diagnosed with bone mets from the start in early 2011. Have had ups and down along the way, currently in up mode.
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Beth,
I was originally diagnosed with BC in 2008, then MBC in 2018 with bone mets everywhere, from my skull to the tops of my thighs, collar bones, shoulder blades, every rib, entire sternum and entire spinal column. Radiation shrunk all of them and the treatment drugs are keeping them all stable. 3 years out and I'm living as normal a life as I can, still have some pain and there are still things I can't physically do but I'm here and I'm not going anywhere, anytime soon!
Like everyone else has said, you will feel much better after you have a plan in place and feel like your fighting the monster. Hang in there, there is life with mets
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beth, you may need to go into settings and make the new diagnosis public.
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Beth1965 - That it takes your breath away is an understatement. We’ve all been in your spot and now can be more supportive to each other then ever. No one knows this journey like someone walking it. These ladies are a wealth of information, support and stories of triumph. Give yourself some time to grieve the life you thought you had then straighten your crown and keep moving. Keep living your best life. Hugs.
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I needed to hear how long people can live with MBC right now. At my appointment on Monday, I found out that my platelets tanked and my tumor markers went way up. MO wants me to get a PET scan which is now pending approval from insurance. Just feeling a bit defeated today.
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Rosie, this doesn't help one way or the other, but I get a PET scan regularly every three months. I just had one this past Tuesday. I think that I've had 15 or so since 2017 and the discovery of MBC. Assuming that the scan is approved, here are some things your onc may or may not tell you. I learned the correct procedure on my own. Per data from cancer institutes online, in preparation for the scan, you should:
Avoid exercise for 24 hrs preceding the scan
Eat a low-carb diet the day before the scan (to keep blood sugar level low), and eat nothing before the scan on the day of the scan.
Once they inject the radioactive solution into your vein on the day of the scan, they will put you in a darkened room for 60 min (I try to take a nap) and direct you to relax and not use your cell phone, iPad, read, etc. They want you to be entirely passive and relaxed while the radiation spreads through your body. There is some risk of a false reading/greater uptake (I assume in the brain) if your brain is working harder than they want it to work.
After the 60 min for absorption of the radioactive sugar solution, you'll be in the actual scanner for 25 minutes. You merely have to lie entirely still, but you can breathe and swallow normally. Any active cancer cells will take up the sugar solution and will show up on the scan.
Good luck!
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Patgmc. Thanks again for your very uplifting post. I agree that not knowing much about when one's "time" will be it's best to live life to the fullest we can now.....always good to be reminded.
Beth....my story is a bit different than yours as I was diagnosed with MBC denovo....the tiny tumor in my breast was only found afterward, never showed up on a mammogram. However, I also had extensive bone mets which had already caused multiple vertebral and rib fractures and extended from my neck to my pelvis and femur. by the time I finally got a diagnosis. This worried me too, that there were so many. I took some comfort, though, in the online conference session I'm linking here. It's part of a yearly conference put on by "Living Beyond Breast Cancer," and happened in June 2021, about a month and a half after my diagnosis. It was a session on Bone Mets by Katherine Weilbaecher, a breast cancer oncologist at the Siteman Cancer Center linked to Barnes and Washington U in St. Louis. She has lots of good advice and insight. The part I found especially comforting was her noting that extensive bone mets don't necessarily mean especially aggressive cancer. Rather, they result from the ways the cancer cells spread through the bone marrow.
https://www.lbbc.org/bone-mets-5
As many more experienced here than me have said, the beginning is the hardest, and then it turns out that you can live many parts of your life while treating the cancer. Hope you find a new rhythm like that, in the meantime, it's completely natural to feel rather sad and disoriented, especially, I would imagine, if you've already been through bc diagnosis before.
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Well said Prairie and as always Pat keeps us hopeful. Much appreciated!
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I just talked to the surgeon about putting a pin in my right leg.
Can I hear from all of you that have had this surgery or experience with it. I know some of you replied before but I can not find those comments
The rod or pin goes from the thigh to the knee. He could not guarantee I would be out of pain or I could walk but thought I should be able to.
I asked if he could remove the tumor and that was a no.
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Positive2Strong,
I recently (April) had a right hip replacement and a pin put in my left leg. This was due to severe arthritis and cancer in my R leg and cancer in my L. The pin was placed right through the tumor in my L leg. Subsequent to the two procedures, I had 2 weeks of radiation on each side.
The pin was less difficult to deal with than the hip replacement, but I could not walk upon dismissal from the hospital. I went to an inpatient rehab hospital for 26 days for recovery (remember, I had surgery on both sides). I continue now with outpatient therapy and I use a walker -- trying to wean myself off of that.
I will tell you that after the radiation, I have no pain.
Let me know if you have any more questions.
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BevJen,
Thank you,
Did you have radiation after surgery. As I had 10 treatments and still have pain Did you go off Ibrance for your surgery. And do I go off Faslodex shots
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Positive,
My radiation was after surgery. So I don't know how that would work with you. Question to ask your doc.
I am not on Ibrance or faslodex -- at the time of the surgery, I had been on immunotherapy (keytruda) as a mono therapy for about 2 1/2 months. I was off all treatment for surgery. Again it's your oncologist who will tell you what to do with your drugs. I suspect that they will leave you on faslodex and have you hold the Ibrance for a bit.
I also would recommend that you get a second opinion. It can't hurt, and it might clarify things for you.
Good luck.
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I am trying to deal with everything but feeling not very strong. I had scheduled my leg surgery pin or rod from knee to thigh for Sept 9 then today they called to say it is August 30 as Surgeon thinks I need it sooner. I told them my son has planned to be here and he lives in Michigan and I am not comfortable with all the Covid cases in thehospital.
Right now I am taking nothing, off Ibrance and I called for my Faslodex shot and 5hey had to email my onc
They also said I need to ask surgeon if I should get xgeva shot.
I have never had any surgery before except my lumpectomy. So I am very neurotic.
my son and husband wanted me to do a while ago they think then I will be ok and able to walk.
I am in crutches and really I go nowhere. When on Ibrance I was pretty sick and weak.
now I am worrying that I haven’t been on Ibrance and my second shot of Faslodex for about 9 days.
I eat very little, not much is appealing.
it is a down day for me. I read what you all have survived and hoping you can share your strength and hopefulness.0 -
Positive2Strong, one tiny step at a time! You can do this! Can your son move up his visit? Can someone else come and assist if necessary? You would have 13 days to get your husband or friends and family to help get this organized. You don't have to organize things yourself. Now is the time to ask for concrete help.
The faster you get the surgery the better and the infection protocols in the hospitals are very stringent now. We know so much more about how to prevent infection - I would not let that stop you from getting the surgery asap.
Here's my tough love prescription:
You do have to eat. You know, the drs and medicines and surgeries do most of the work of trying to control our cancer.
Our job is to
a) show up to appointments
b) drink lots of water
c) eat - doesn't matter if you don't want to, it's your *job* to eat. Nutritious is ideal but really, anything to get you jump started will do. You need nutrients to heal from the surgery.
d) get up and moving at least a bit every day. Crutches is fine. Just hobble around - your strength will come back but it doesn't come back when we sit, we just get weaker. Every bit counts, even a little is better than none.
e) sleep
Also, have you considered an anti depressant? It can really help; when you're stressed like this, it can make so much difference.
I'm cheering for you!
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Positive2Strong - Read Moth's advice again. It's all good stuff. Spot on.
I had my femur rod inserted on March 24, 2020 just as Covid was exploding. My husband couldn't be there and I WAS JUST FINE. I had my surgery first thing in the morning. That afternoon the physical therapist had me walking the hallway. We stopped when I threw up. Lol. The next day she taught me how to navigate stairs and a better way of getting in bed. I was released that afternoon (25th). My husband drove me 2.5 hrs home. I'm not big on taking pain pills but this was one time when I took them regularly to stay ahead of the pain. They had me rotating oxycodone, ibuprofen and Tylenol. It works. 👍 Ten days later my husband had to take a 4 day trip and I was able to take care of myself at home. He just made sure to leave me with pre-made meals. And I WAS JUST FINE. My next best word of advice is to do ALL your PT exercises no matter how frustrating or boring they are. Good luck. You can do this!0 -
Positive - I'm going to second what RK2020 just said. I had the same surgery in December of 2019. I too was up and walking on crutches the next day with physical therapy. Long story short, yes, there will be some residual pain at times. I get very sore if I've been walking a lot or having to navigate uneven terrain. I get sore when I work in the yard too much. Big picture though, I'm a year and 8 months out from surgery and I am able to work 16 hour shifts at work. I work in my yard. I am not as strong as I was pre surgery so I wholeheartedly agree with doing PT and being vigilant about staying as active as possible. That said, I have maintained my mobility. I may never be as active or strong as I was pre-cancer but I don't know any of us who go back to being that person. Being a metastatic cancer survivor builds a different kind of strength and I agree with Moth, sometime all you can do is show up, eat, and do the best you can do one day at a time. Hugs to you. You and Beth are in the hard part of this but it is doable. There are a bunch of us on here, many with more time behind them than me. We support each other together. Keep believing that hope is still possible.
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Positive2Strong,
I was in a similar place as you last November. Newly diagnosed MBC with terrible back pain that left me a couch potato and unable to do anything at all. I couldn’t even stand for more than 2 minutes. After being rushed in for emergency surgery to stabilize my neck, I had a vertebra that was collapsing, I was able to start MBC treatments which included radiation to a couple vertebrae and systemic treatment.
Fast forward a couple months. The pain in my back was almost completely gone. I could walk, dance, make a sandwich, and get out of bed. It was a night and day difference. Yes, I had SEs from the radiation and systemic treatment and I was stuck in a neck brace, but I was feeling so much better overall. Today, my neck is completely fine and I feel very well.
You are in a very difficult and stressful place right now. Take one day at a time, fuel your body, keep as active as you can and try to find small moments of peace to calm your mind and soul. Even if it’s just for a few minutes, try to let your mind focus on something else - watch a movie, play a game, sit outside and watch the birds … whatever does the trick.
When you feel yourself struggling, just look over your shoulder and you’ll see us standing behind you lending you our strength. You are not alone.
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Thank you All,
Moth, I appreciate your words of wisdom. I am eating more. In fact, my husband picked me up a chicken breast and surprising I ate the whole thing. I am afraid I am able to eat because I am not on Ibrance right now and waiting word from onc if I can get my shot and start back on Ibrance 100 ml.
RK2020, Emac 877, and ilowen, It is good for me to hear that you had surgeries and you feel better. I don’t know why I am so afraid. You are all so strong. Ilowen, I feel better with your words to look over my shoulder and you all will be there. You are so right, I do feel so alone. I can’t tell you all how much I appreciate you responding, it means so much to me.
Emac 877 working 16 hr shifts is amazing, I am hoping to have that strength. And ilowen dancing what a dream.0 -
I just can't seem to stay on the drugs most women can take for years. I was denovo when the bone mets showed up 1/1/2020. Ibrance + Letrozole brought my white blood cell count to 2, so I only took that for 6 months as we kept lowering the dosage amount. Verzenio + Letrozole which I loved because I rarely had side effects - 10 months. My tumor in my breast which caused the 6 bone mets to form is showing growth, so now I have to move on to Faslodex shots and Afinitor next week. Looks like lots of side effects with Afinitor. Can any of you give me some info of what to expect in side effects? Thank you so much!
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Woodlands- everyone is different , but, I felt very good on Afinitor after the first weeks of getting used to it. It worked for 10 months. Be sure to use the mouthwash the first 8 weeks to prevent mouth sores. I didn’t get any mouth sores. My hair got very lush from the thin Ibrance hair and my leg cramps and neuropathy got much better I wish you good luck.
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