Bone Mets Thread
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Anita, thank you! It does help and it was what I thought anyway. I haven't been there for a while so I guess I won't be going back. I definitely don't want to hurt myself worse.
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I posted a few days ago about a new and constant pain in my lower back/tailbone area and associated leg pains. For those who asked, my last scan was October. Well on New Years Eve I went ice skating. I'm normally a fairly decent skater, but tried to skate backwards and immediately fell very hard on my right tailbone area. The next day I could barely walk on the right side so I went to the ER. I made sure to tell them I have stage IV breast cancer. They did xrays and saw nothing out of the ordinary - no fractures. If I had bone mets of some sort would they be visible on xrays? They did my hips and lower back.
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Minxie, many women, including me, have had clear x-rays that missed mets damage. Not saying you have it, but -x-rays do have limitations. If your pain persists, I would ask for an MRI to find out what's going on. It might also be referred pain from damage somewhere slightly off from where you're feeling it and where they x-rayed.
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Minxie, I also have had "normal" X-rays then a MRI picked up bone mets.
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Minxie - I agree with the others...I had mammograms and biopsies, but until they did the MRI they didn't "see" my lobular cancer in the breasts or the mets in my bones.
Your pain question triggered some research. I've had pain continually in my back and hips although the mets have been sclerotic (healed) for many months. I've also had frequent headaches, twitchy skin, chills and mild nausea plus some facial numbness. Of course, my mind went immediately to brain issues. (I've become totally paranoid.) The brain MRI and PET scan last week came back clear. Great news, except the pain and weird symptoms are still there. My MO told me to wean off of Ibuprofen as I shouldn't need it. (No details on why, just stop using it.) Since things still hurt that didn't sound good.
So, this morning I decided to do some research on ibuprofen and evidently the symptoms I've been having could be related to NSAID use and withdrawal. I've been taking ibuprofen or tylenol a couple of times daily for 13 months.
Withdrawal symptoms can include: Headache, anxiety, diarrhea, fever, runny nose, nausea, pain, rigid muscles, rapid heartbeat, shivering or tremors and trouble sleeping. It can also cause more joint pain during the withdrawal period. I will edit this later to include links to the information in case anyone else is running into this issue.
So - I'm quitting ibuprofen over the next few days. I'll report in to let folks know how it goes. So far the headache and overall achey feelings are the big ones. It should improve over the next 36 hours. I'll report back.
Hope you have all enjoyed the holidays!
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Thanks for the info, ladies. I guess I'm keeping my appointment with the oncologist on the 10th
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Iwrite, be prepared for insomnia and some restless muscle issues. I had to give up Norco with Tylenol because it jacked up my liver. After 3 days things settled down. Sending prayers that it won't be too hard on you.
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Before the cancer diagnosis, I had a deep tissue massage every 1 to 2 weeks for years. I also had Rolfing done once a month for years. In the two months before I got diagnosed when I was having a really terrible back issues I went to my chiropractor (whom I'd seen for years) and on the last session he broke four ribs. Not on purpose --because we didn't know. He said, get an X-ray. I did and it showed nothing but the fractures. I stopped seeing him.
4 weeks later my rolfer intensely advised me to get a scan of some sort, and I went to my GP, who I'd been seeing for 3 months to figure out what caused the pain, convinced her to get me a CT scan.
4 hours later, she called me and said something along the lines of, "oops, you have bone cancer. I've scheduled an appt. with an oncologist for tomorrow at 9 am (it was 5 pm the day we spoke)..
When my ex husband found out he was furious. "Didn't she know you have a history of breast cancer? It's the number reason why women with seemingly untreatable back pain have the back pain...metastases.
Ot vey. It took me a long time, and the help of a Catholic priest friend, to forgive my GP. It didn't help me to be mad at her, and we had a conversation that resolved it for me. I seriously doubt she'll wait that long again to get a scan.
And here we are.
I got lymphatic massage when I was at Deepak Chopra's place in San Diego in July...90 minutes EVERY DAY for 7 days and they were fabulous. Wished I lived closer so I could get them again
Love,
Patti
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minxie: I have sciatica and frequently have pain in my right hip and down the leg. Sciatica is a compression of the nerves (usually in the lower back) and where you feel the pain is not necessarily where the actual problem lies. Mine does come and go, I've had problems on and off with it for 10 years. The interesting thing is that my bone mets are primarily in my spine and left hip.
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Cive- I can relate to the problem/pain being on the non-cancer side. I also have pain worse in my right hip along with occasional sciatica on the right but had bone met on left hip! Maybe we are compensating, "babying" the left and putting more strain on the right without realizing it?
I was diagnosed with bone mets to upper left extremity and left illiac crest in August 2015. Specifically to the bony glenoid process of left shoulder and left humerus. The pain was excruiciating but significantly improved after 10 rounds rads and once my skin grew back! I had a horrible skin reaction.
So now I am post rads about 16 months and the pain in my arm is coming back. The pain is approaching what it was before radiation and comes and goes as far as the intensity.
Last bone scan October 2016 showed no new mets, persistent uptake in the humerus although the uptake is much less compared to my initial scans in August 2015.
The increase in pain has me worriedl/scared and I will discuss with MO at next appointment.
My question is: Does the pain relief provided by radiation to bone "wear off" over time? Has anyone else had this happen? If so was it disease progression or just that radiation pain relief doesn't last forever?
Thanks so much for any info you all can give me about your own experiences!
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living with- I've been having rads for extreme bone pain since 2013 (initial dx of mbc). Most rads in lumbar area of my spine, but also left iliac and T3. I have never had significant pain return.
Today I see my RO because I had significant uptake on the right femoral neck without pain. (Just a twinge once in a while). MO wanted me to see about him as she worries about a break. This should be interesting. I've never had rads without pain before.
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livinwith - I have had rads which helped for a few months before the pain came back. Then rads again to same areas and same thing happened, pain came back although mets were stable.
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Hi there,
I'm new to this tread, thanks everyone for all the info. I was diagnosed in Nov. with stage 4 confirmed a couple weeks ago due to bone biopsy confirmation of mets to the left iliac bone in my hip. The bone didn't light up on imagery but the lesion was evident. So far it's a single location and I have no pain. I'm hoping the radiation clinical trail I'm scheduled for in a few months can zap it or at least prevent it from spreading
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I see an extremely experienced body worker who can reset my bones with the most gentle touch. Rare but they are out there.
>Z<
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LindaE54 - thanks so much for sharing and letting me know the pain return doesn't necessarily mean tumor growth. Good to know! Since everything was stable less than 3 months ago I do believe it's just the pain that's worse. Bad enough but way way better than pain plus progression!
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Z,
just so you know, my right breast became very red and swollen and sore. An in- office sonogram showed scar tissue from the lumpectomy, but no new mass. want to reassure you that the breast pain can occur and be unrelated to a tumor. It took about a month before I could sleep on my belly without pain. I hope you are feeling better. MJH
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MJH - Thanks. Our mind gets so busy exploring the worst. I haven't had a lumpectomy so that won't explain it.
Today the pain in my legs, likely from the A/I, is worse than the pain in my breast and armpit so it's off my mind.
>Z<
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I've had all sorts of radiation and pain has not returned to any of those spots.
Patti
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Thinking of you this morning Patti. I hope you are comfortable and can continue to enjoy quality time.
Amy
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Quick follow up- RO does want to do treatment asap on right femoral neck because, even without pain, that is an area that can break easily. Uptake on PET indicate significant worsening of lesion in that area. Ten treatments start Monday. So, my first rads without pain. He said femurs, femoral necks and humerous get extra attention because they take on weight.
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Hello ladies,
I asked about massage and the most recent advice from my MO was that it was okay. I've been taking Xgeva for a year and the bone mets are sclerotic which has relieved some concern.
After three days without ibuprofen the continuous headache is mostly gone...as are the crawly skin sensation and chills. Finally slept through the night last night. It looks like the mysterious lower leg swelling is going down as well. (Extremity swelling was another symptom of too much ibuprofen.)
Still achey as all get out, but it is the last two days of the Ibrance cycle so that's normal. Working out again this week which always causes mental improvement and physical discomfort at the same time. Hoping the residual OTC pain meds work their way out of my system and the aches in the bones go away a bit more.
It's unfortunate that meds to control pain cause other pain that mimics progression symptoms. Still learning about this disease and how it impacts the body after 14 months. We should all have earned PhDs in this by now!
Here is the information on Ibuprofen side effects and withdrawal:
Ibuprofen Dependency Side Effects & Symptoms
The following side effects may occur as a result of dependency on Ibuprofen:
- Gastrointestinal ulceration/blessing
- Constipation/Diarrhea
- Nausea
- Dizziness/Drowsiness
- Swelling of the eyes, face, or extremities
- Fatigue or tiredness
- Ringing in the ears
- Itching or rash
Ibuprofen Withdrawal
If a man or woman has become dependent on Ibuprofen, they may experience mild side effects if suddenly discontinuing the drug. Because Ibuprofen is not an addictive drug, these effects are minimal but may include the following:
- Agitation
- Nausea
- Headache
- Increased Anxiety
- Increased depression
- Increased levels of pain
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kaption- good you are getting on top of those neck Mets. Thinking of you!
Kathryn- so important to know that about vitamin I. Good job figuring that one out.
K
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Well for good or for bad, the second Xgeva shot is done. I'm hoping and praying it works. Asked the nurse about being so cold all the time, she said make sure I tell the onc, it could be something to do with my thyroid, but it could be the Femara too.
Kaption, glad you are going to get that met taken care of.
Kathryn, I sure hope my mets are sclerotic in a year. Praying for that.
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Kind of hesitated to post this this evening because it seems like every time I post it's because I'm having something go wrong ! But I wanted to know what do you all do when you get down in the dumps I'm just feeling... not hopeless .... just kind a like I must be fooling myself I think I'm going to beat this thing! Do you all feel that way sometimes too and if you do what do you do when you get in that kind of mood
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Kaption, I'm so glad you're getting RT for that femoral neck lesion. That's where my femur fractured, and, believe me, you do NOT EVER want to go through what I did! Worst pain imaginable -- literally screaming while getting X-rays in the ER -- and needed a femur rod and a total hip replacement. I am so glad yours is being addressed before you end up in a similar crisis situation!
Kathyn, thanks for the great information on Ibuprofen. I had no idea that it could become so addictive. How much were you taking?
Speaking of unexplained pain and weird symptoms, what can anyone tell me about neuropathy? I've had something really weird happen twice this week -- both times when I was driving, and I suddenly couldn't feel my finger tips, except for an unpleasant tingling feeling. I'm pretty sure it's neuropathy, but I didn't realize it could hit suddenly and out of the blue to that degree, then be gone 20 mins. later. What's more concerning is that it's my off week from Ibrance, and I haven't had Faslodex for about a month (getting it again on Friday... delayed a few days due to the holidays). And I haven't had Xgeva for 3 mos. So why would it start now (assuming that's what it is), when the meds in my system are at their lowest? And is there anything I can I do for it?
The last time I heard from Patty, she had fallen and was hurting but hadn't yet seen her onc to see if she had damaged anything. Have I missed a more recent update? Patty, if you're reading, I hope things are looking up!
Welcome, Illimae! So sorry about your bone met, but glad you've found us. Keep us posted on the trial you mentioned. What treatment are you on in the meantime, since you said that would be in a few months?
Gracie, I'm sorry you're feeling low tonight. Two things that help me the most when I get in that kind of mood are walking and music. Walking gives me time to think about things and reflect on the beauty and perfection of nature, as well as boosting serotonin levels. And music is just an immediate spirit lifter for me. Crank up whatever makes you happy and dance (more serotonins). Also, just switching my thoughts to what I have and am grateful for also helps. In fact, I saw something today on FB along those lines. Let me see if I can find it for you, and I'll pop back and share it here.
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Gracie - Like Deanna, when my mood is low I drag my sorry butt out for a walk. I push myself to jog, although my body often feels like lead and I don't get far. But try to get your heart rate up as much as you can. Fast walk. Walk up a hill or stairs. It's all about getting the endorphins going in your brain. Endorphins are an anti-depressant pure and simple.
If that doesn't work, prescription anti-depressants can be a good option. The cancer drugs we take can effect our mood as well as our bodies. It's something to be very alert for.
The dumb logic that convinces you to give up works the other way to. Giving up is definitely going to cause you to fail. There isn't any reason you can't beat this. Many people with do. Particularly those with bone mets. Why give up when things might just work out very well?
I thank god for my kids. It's all about getting out of bed and getting through a normal day. With kids I have no choice but make it through the day.
Finally, we're all dealing with a lot of pain and anger and loss. You do at some point have to feel it. That's not depression that's just facing the hand you've been dealt. It's not what we expect, want, deserve. It isn't fair. It really does stink.
Hugs.
>Z<
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Thanks Deanna and Z. I am grateful he has decided to act quickly. In fact, he stayed late and got things set up so I can start today. (If we can get out on this slippery weather) you are right, Deanna. I do not want to go through what you experienced!
Gracie, never worry about coming here when you are low. We are the ones that truly understand. Besides the tips Deanna and Z shared, writing can help. Journaling your sadness and then hopes can help you process. If you are stuck inside because of weather, sometimes I use housework as my exercise. If feels good to accomplish something! Getting out with friends can help too.
Deanna, I've never experienced neuropathy like that. That's a definite question for your MO.
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Thanks ladies sitting in beautiful Costa Rica worried about progression. I can't believe I'm doing this. Z and Deanna once again to the rescue
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Thanks so much Deanna and Z and Kaption! I finally just went to bed last night after getting some things done inside, and got some sleep. I feel better this morning. Funny how those things get ahold of you mostly at night
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Wendy, Look around you there in Costa Rica. The last thing you should be thinking about is progression although I know I would be doing that, too. Take a hike through the lush rain forest. Swim in the beautiful ocean. Smell the gorgeous flowers. Laugh at the monkeys. Send us some pictures of the wonders around you. We all know how strong and full of life you are. Don't let the threat of progression get you down. Just have fun. If you want to take a few minutes to feel bad for those of us here in the cold weather, that is allowed. I would love to be sitting on a warm sandy beach right now.
Hugs, Lynne
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