I would like to know if those who have bone cancer from metastatic breast cancer are experiencing pain in the bones and wha the prognosis is?
I have had the recurrence of breast cancer which is now stage 4 after twenty years where it seemed I was cleared. I am now having pain in my shoulder and other places. The shoulder pain is sometimes intense. The other pains are brief and feel like arthritis.
Hi there
My cancer came back after 24 years!!! Big shock to say the least
I have extensive bone mets and a lot of pain especially where there’s a fracture at T5...had a vertebraplasty for that but it didn’t make much difference
I’m (Or was) a very active woman...have two horses and live to ride but the pain is awful and I’m riding less...started yoga and swimming which I enjoy but I’m miserable much of the time
Recently I’ve gone for acupuncture and I have massages sometimes but that is only short term relief
I’ve just had a single fraction of palliative radiotherapy on my sacrum...still painful but I was warned it would get worse before getting better...I try to just take cocodamol and ibuprofen but some days I take ocycodone but hate the side effects
I really sympathise with you and understand your misery
Barb xx
How long ago did you have the break . I twisted my back ,had excruciating pain. Didn't show up in xray,only CT. Could not lie down ,even to sleep. Had radiation on back. With kindness from Above, the pain is mostly gone . It took a couple of months...the pain I do have seems to me,weakness in the muscles. I still cannot lift anything even slightly heavy,including grandchildren. My doctor asked me to wait on massage etc when I still had intense pain. I was advised by a therapeutic massage expert that certain joga positions could hurt me. For example, the candle. Only after I hurt my back did I realize,how many of these positions work on the back. Hope you feel better soon,and be blessed with a total recovery. Sounds like quite an adjustment for someone who loves horses, just being careful walking and exercising is a bummer
Hi
I had the break in February 2018 and tried to battle on...working riding etc as I’ve had back pain for years and also had had a bad fall the previous August where my horse fell backwards down a dyke and landed on top of me...could have been killed...I assumed my pain was related to maybe that...my GO never suggested a scan it was only after I took it upon myself to have a private consultation with a GP at a private hospital...she immediately order xrays and the rest is history!!.. terrible shock as my initial breast cancer was in 1994
I’ve lately found a chap who does acupuncture but makes the muscles contract strongly which then encourages them to relax...he’s confident he can help restore correct muscle memory as often the pain is from the muscles compensateing for the injury...try swimming...I find it’s helping a bit as there’s little pain when I’m supported in the water
All the best to you
Barb xx
Sorry that you have MBC, I have it too in my bones and I have so much pain at nights when I am getting up and sitting for long time I try to remain active walking I-am still working full time, travel and for pain I take Gabapentin that it was prescribed for my neuropathy but it helps me sleep because my pain is worse at nights and got palliative radiation on my back take care and God bless you
Hi Neosha,
I was experiencing some bone pain before my diagnosis, but my GP told me it was nothing. She didn't even examine me or order any scans. I thought I had twisted a muscle or injured myself somehow while I was out dog walking, but the twinges did not go away.
Then after my diagnosis I learned I had two small bone metastases in my spine, which explained the symptoms. Starting treatment (zoladex, letrozole and zometa) temporarily exacerbated the problem and the pain increased a lot. My oncologist prescribed codeine for the pain and also referred me to another hospital for palliative radiotherapy. The radiotherapy left me in pain for five days, but over time it eased off. Then I self-referred to a different hospital for some physiotherapy sessions and then I finally felt like I was out of the woods.
But it took a few months before I felt like I could function again and not have the crippling pain and weakness. I believe the treatment was partially responsible, because the pain shot up right after I started treatment. My back felt stiff as a board, bending down to put on my shoes and socks was a chore and even picking up my cat was too much for me. I felt like I was about 90 years old! I just remember hoping at the time that I did not fall over because I would not have been able to get back up again without help.
I also found that gradually introducing more exercise into my daily routine helped with my joints and muscles. I was careful not to do anything that could hurt my bones. I started off at about 15 minutes, and then increased the time. I was so slow that I would increase my workout times by just 1 minute per day! Now it's getting colder I am working out indoors on my exercise machines, and starting back at square one again, as I get used to the machines. Epsom salt baths are also really helpful. I have a cupboard full of different essential oils that I like to add to the bath. Then I pick a book, lie back and relax. It's so nice to have that to look forward to at the end of the day!
Oh, and another thing. Have you thought about having some complementary therapy? I had six free sessions (five massages and one reflexology session). I found it really relaxing and soothing. It might help you too.
Sophie x
Hi
Yes
Since my Mets went into the Bones pains are controlled by Medical Marijuana for me.
I have bone Mets for the past 4 years- just had a bone scan and it’s improving except for 1 new spot on my Right femur. Pain in my body comes and goes- tender spots and aches or stiffness at times- I just keep active !!! Take Tylenol and Aleve twice a day.
The pain I've experienced in my bones from the metastatic process is mostly aches, but when I had one in my neck it just felt like I had slept wrong on it. But this happened over and over and I didn't think it was a metastasis, but that just a muscle injury of some kind. Another friend also had a similar experience with feeling like she's injured a muscle in her rib and it turned out that the tumors had spread there. I have a feeling it sometimes feels different for different people. But, it's important, to mention them to your primary doctor and/or oncologist on those visits so they can do the proper follow up.
I'm very sorry you're going through this. Twenty years is a long time. I"m in year 8.
I will say, that my bone mets have gone down and were barely perceptible on my last scans. I've been on Ibrance and most recently (last year) IV chemotherapy with Taxol, then taxotere and Keytruda.
I will add that I am as active as possible, doing something everyday, even if just a moderate walk. Mostly have upped my weight lifting and yoga and try to keep a little running here and there. But, I've always been active. Keeps my spirits up as well. <3
xo
Lynn
My cancer metastasized to the the lumbar part of my spine. I was in so much pain for about 8 months. I even had a bone scan during this time and it showed nothing. Finally had an MRI and that's how it was found. I just finished 10 rounds of radiation and the pain is almost gone. Left with fatigue and lots of nausea which has sucked. I think it is slowly been getting better but its been 4 weeks since my treatments started.
Hope that helps.
Kim
Kim, I also had 10 rounds of radiation for 2 thoracic compressed spine lesions. It took at least three months to get back to not feeling exhausted and having an appetite again but like you, it did help the intense pain in my back.
i'm sorry that you are dealing with this. I am glad the pain is gone but i am really ready for the nausea and fatigue to end but seeing how it took you awhile gives me hope that it will better. I have to sit and rest after taking a shower.
I totally understand. Taking a shower was the limit of what I could do in one day for a while. It exhausted me! I was also on Prednisone for the pain (as a anti-inflammatory), but it also kept me from being nauseated. I was mostly just not hungry which helped me lose some much needed weight. You might ask about a month or two course of it to help you get through this period.
Hi Kim
I’ve just had palliative radiation to my sacrum (6 days ago).. I was told to expect pain flare so I’m putting up with that....did you experience this and did it last for long?...also my tummy is tender
All the best
Barb xx
The radiation really took care of my pain, but thank you very much cancer for making me nauseated and fatigued. I guess you could say my tummy is tender. If I wear jeans it’s so uncomfortable. It’s starting to get cooler here so when I don’t have to go out it will sweats or leggings.
We just have to be patient I guess till side effects lessen...I’m not patient though and full of anger at my situation at the moment as I want to do stuff and can’t
When I woke up this morning I decided I’d like to have a little swim...now I’m up but just the thought of getting in my car driving to the pool getting changed etc etc just tires me out...I’ll see how I feel in a bit
Barb xx
I too have bone pain with my MBC. I found switching to a strict non-inflammatory diet made a huge difference. I no longer consume gluten, legumes, most dairy, alcohol and processed food. I also limit my consumption of grains and sugar. I have also found medical marijuana (low THC high CBD) helpful. I have been trying yoga and pilates to help with spinal pain with some success and relief.
I have had a lot of pain from bone lesions. My oncology nurse practitioner said that it would likely not get much better at about 6 months when I asked. She said the damage to the bones was permanent although the cancer is not showing up in them anymore. I am on a Fentanyl 12.5mcg patch plus Dilaudid for breakthrough pain. I’ve managed to decrease from a 25 mcg patch to the 12.5 but think I will be stuck there for a while. My doc says everyone should get what they need for pain so they can live the best life possible. Elaine
I have bone mets in my spine and pelvis. I am grateful that I have no pain. I am curious as to why and am wondering if it is the Xgevia, along with the fact that I love milk. I also take calcium. I had polio at the age of 5 and at the age of 12 had a total spinal fusion which required two major surgeries. I was flat on my back without even a pillow for six months in a body cast. My Mom surely has a Purple Heart in Heaven. I am perplexed. I also had a thoracic tumor in my spine that had excruciating pain. I was given radiation for ten days and it really cleared it up. I feel bad for those of you with pain and hope that it clears up. My heart goes out to all of you.
You are a warrior 🌹❤️
Before diagnosis I had a lot of bone and joint pain and was told I had arthritus. I had sharp shooting pains in my long bones, an aching back and stiff, sore joints and neck. Movement was a real struggle and getting dressed was a huge challenge. When I was diagnosed with wide spread bone mets and a fractured vertebrae I had a single dose of palliative radiation which reduced the pain in my back significantly.
I was on faslodex and ibrance for 18 cycles, I also regularly take sour cherry juice. The pain diminished until this summer it was virtually gone. Changing meds in September brought some of the pain back but it's now settled down again.
My last scan showed that the bone mets were still stable but there was progression to my liver, hence the change in meds.
I have always tried to be fairly active and I now do Pilates, archery and try to take a walk everyday and get out with the camera whenever I can. I still work time
I appreciate it's not the same for everyone but bone pain can improve, hope it does for you.
I also am not currently on any chemo drugs and don't know if I will go on them. My quality of life pain wise is pretty good, though as I have mentioned, I have brain damage from the Exemestane, which is horrible!
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