After my spinal surgery/fusion healed I had not had chronic pain despite mets all over my body. Even after I fell and cracked my femur! Had rads for that but now have chronic pain. Sometimes in sides, left arm, upper back (I also had some rads to upper spine). I may have to take Tramadol...the Tylenol’s aren’t enough!
Does anyone know why the pain would increase so much all at once? I am on 3rd cycle of Xeloda. What are your experiences with bone mets?
I have a lot of bone Mets and it has caused me a lot of pain. It was actually how I found out I had cancer, because the pain was so bad. I take pain meds and it was under control and I was feeling good for the first time in two years.
On December 27 I had radiation to my spine for growth of some Mets. Since then my pain is back and I can’t get it under control. Both lower back, neck and everything in between hurts. They say you have a flare up of pain but usually that’s right after the radiation.
My orthopaedic surgeon told me radiation to your spine can cause pain and weakness for 6 months afterwards. If I were you I would mention it to a doctor just let them know. I hope it settles soon. Chronic pain drags you down I find.
Hi there
Before my mbc diagnosis I had back pain for a long time which makes me think I had bone mets for years...however I fractured a vertebra and as a result of an X-ray the dreaded disease was discovered...I have extensive bone mets
However 90% of my pain is where the fractured happened and I do take very strong medication...at the moment I’m trying morphine patches together with oxycodone for breakthrough pain...I tried to be ‘brave’ at first and use as little medication as possible but the only person suffering was me!!!... what was I trying to prove??
Anyway to answer your question...it’s a mystery to me why the other bone mets aren’t painful...also I have no pain at night or if I lie on my side...only when walking or riding...I guess it could be worse though
Take the stronger pain meds and don’t try and be a martyr like I did and was so miserable...pain really can spoil your life and we need to enjoy ours!!
Barb xx
Listen to Barb! When the cancer has damaged your bones to a certain extent, they hurt, just like arthritis. A compression fraction, or two actually, to my back, was the beginning of my diagnosis. But I had already had rib pain which I had chalked up to age and building a rock wall. My pain nurse practitioner said it doesn’t get better. I too tried to use as little pain med as possible. My doc said that there was no point in hurting. The point was to have enough pain control to be able to enjoy your life. He was right. It took Barb a while to get that, but she did and I enjoy hearing about her rides on Bugsy, her horse. I would not be able to spend the time I do with my young grandchildren(or did...hoping that the quarantine won’t last forever,), or the time I spend at my sewing machine without the Fentanyl patch and extra Dilaudid.
Pain is a usual side effect to bone metastasis so accepting it and getting the appropriate pain medication is the best thing you can do for yourself. Addiction is not a problem when real pain is your problem! I have no high or cravings for it. I would forget to change my patch if I didn’t have a reminder on my phone...or my bones didn’t tell me when I have ignored my reminder, but not usually until the next morning!
Good luck. Feel free to ask any more questions if you have them.
Elaine
Hi Elaine I was given pain meds after my mastectomy now I know that anaesthesia can contribute to constipation but so do pain meds. I was drinking a lot and taking laxatives but I still had a bad case of constipation. So I'm asking you what do you do to prevent constipation I'm scared to take pain meds after my experience. If Barb would chime in on this also I would appreciate it .Thanks
I did not have a mastectomy but was recently referred to palliative care because the two holes in my spine were giving me major back problems. All of a sudden I could not walk more than 1/2 a block and then I had such a burning pain in my lower back, that I would have to stop and lean against a building or a fire hydrant and then wait a few minutes and then continue to walk.
I am now on 300 mgs. of gabapentin and 10 mgs. of Percocet 3 x a day. She even wrote me an rx for lactose(?) to help with any constipation issues.
So I have now been on the percs for almost two full months. I was not having constipation issues so I basically forgot about drinking more water and taking the lactose and stool softeners. Last week was a horror. I had impacted stool. It was incredibly painful and I started feeling really sick. I would go into the bathroom and push so hard and nothing. I was drinking then up to 7 cups of coffee, NOT eating bc I was terrified, drinking olive oil, then using stool softener. NOTHING.
It got so so bad the constipation that I could not even sit down. I could not sleep. I started getting seriously scared because it felt like I had a major blockage. I live alone and was petrified. I kept trying and trying and trying and nothing was happening. I was scared bc I knew with the flu being as bad as it was in NY, that there was no where for me to go.
I kept praying to God and I refused to eat anything bc I was scare of more food in my stomach. Finally, after three days and thinking I could not handle the pain any more and after spending a hour in the bathroom some movement started. But I was crying in pain because it felt like a bowling ball (sorry) was trying to come out. But then finally, some movement happened and I was shocked by how very small it was but it was piles. Although that happened and the major pain stopped a bit, I could tell I was not completely empty and then in one day I had like six bowel movements. I was sickened to think that was all inside of me. Way too much.
I NOW am very careful and have been having movements again on a regular basis. I bought new Metamucil (I had run out the last time so was not using it.)
Now, I keep a chart to make sure that I go every single day. I drink Metamucil every day with water and that made all the difference. So I use the Metamucil, take stool softeners EVERY SINGLE DAY, take the lactose every single day.
I had also stopped the percocet for almost three full days and then in withdrawal from the percocets helped also I think.
But now, I am extra vigilant about doing all the above and so far a movement every day. I cannot go through that impacted stool thing again so I keep on top of it and if I dont have a movement that day, I do not take the percocets.
So I think my running out of the Metamucil was the reason why it occurred and because I was not paying attention to it. It was incredibly painful, I was sweating non-stop and it is scary when you are in so much pain, you cannot even sit down.
I also added gas pills and believe that has helped also. But I never want to go through that again, bc I thought I would need to go to a hospital and was sure no hospital would even bother with me bc of the shortage they were having with the flu victims in NY.
I also think it was because I was self-quarantined at home, THUS no physical activity at all which made my body sluggish. It was hell but now I keep on top of it and so far so good.
I think the Metamucil was the key. Once I ran out of it and forgot to buy more is when it happened.
I cried like a baby with relief when it happened. I was so so happy (funny how the little things in life make you excited at my age 60 LOL). I will never let it get that bad and keep on top of things now.
Restoralax is amazing. You just add it too any drink during the day. Hot or cold. It si the only thing that helps my constipation. Also lots and lots of water and fresh fruit and veggies.
Restoralax is the same as Miralax in the US. Also very good for constipation. And you can’t taste it!
Thanks ill check into that!!
My Ibrance seems to take care of most of the constipation problems. They say it causes diarrhea but not with me! I do have to be very careful on my week off because I can get very constipated then. I drink lots of water and eat lots of fruits with fiber..fresh pineapple and blueberries are very helpful. Dried fruits like figs and apricots are are also helpful. Lots of time my lunch is a mixture of dried fruits and nuts with a few chocolate chips thrown in. If it gets bad I do take some Metamucil, but it does take a couple of days to kick in. I don’t obsess on it, but it is one of those things I pay attention to so it never gets as bad as aamkearns described. My doc is always asking me too. The first time I told him my solution to constipation was Ibrance he cracked up! I think that it is always worse after surgery. Your body is totally discombobulated and you aren’t moving much. When you are back to normal movement it is much easier to prevent it.
Elaine
Thanks ladies for the practical advice. I am relieved I am not the only one who tried to “tough it out”! A couple Tramadol the past day almost made me feel human again😉 My doctor tried to tell me too...that the squeaky wheel gets the grease (or attention!) Because she knew I underestimate my pain!
Wishing you all a good Passover or Easter holiday if you celebrate. I hope to be able to hug my little Grandsons soon too after the quarantine!
Good, I’m glad you aren’t toughing it out! I was also trying to do that. My husband finally told my doc I was controlling my pain by limiting my activities. That’s when I got the lecture about taking enough pain medication to enjoy my life. He said he isn’t giving me medication to just survive, but enjoy life. He is right! Have a great weekend!
Elaine
I am so sorry to hear about your pain. I also had back surgery in 2017, to remove a cancerous tumor, then they find out I have other tumors on my spine. Being in pain definitely can drag a person down. I will pray for new pain meds for you or something. I use CBC cream which helps with pain, anti-stomach upset meds. I am also on Xedola, 4th cycle. I think Barb has the right idea, taking stronger meds for pain.
Hi Susie. How are you doing? I am on Xeloda for 4 cycles too. Thought pain was getting better...until I took my first Xgeva shot. Now my pains have spiked again. Have you taken Xgeva? I’m wondering if it’s the combination, and if it gets better! Can hardly move or walk now!
May have to add to Tylenol/Tramadol combo!
Adding to my post (Sorry, don’t know how to start new one!)
Had bad PET scan news...again! The Xeloda did not help bone mets. Have had more neck and hip pain. Now the bone oncologist says I need to put a rod to stabilize femur...had rads last month on the hip and a spot on spine but have developed bad pain and can hardly walk. Also another spot at base of skull needs rads! So no luck with Ibrance, Letrozole and Xeloda! Has been 6 months since initial spinal fusion and am thinking won’t find systemic treatment that helps ...so just more pain and cancer and going downhill? I have only bone mets so far...but the pain and need for more surgery and rads does not give me much quality of life! My oncologist says have to go to try an infusion chemo next, which I was hoping to avoid.
Does anyone have advice, or recommendations for treatment that helps slow bone met progression. I don’t want to give up yet!!
pain with bone mets
Bone Mets below the knees
Bone Mets on Skull
Bone mets only
