Bone Mets Thread
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Deanna, I hope your healing goes smoothly.
All the best.
Leah
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Deanna,
Glad to hear that surgery is over.
I hope your recovery is quick and that you are feeling better very soon.
Michele
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Hip Hip Hooray, Deanna! Well wishes to you!
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OK, why do you think an orthopedic doctor tells me I need a hip replacement, but no doctor he knows would do it on a patient Stage IV with bone mets ? I do not have mets on hip. I did get shot that helped pain for a week or so. I am doing PT 3 times a week. The pain is constant. What do they do at pain management clinic? My GP told me not to take over the counter pain meds, they were making my blood pressure very high. Any ideas? I don't want to start heavy duty pain meds, I know I will need them further down the line. Any suggestions? Wilsie
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Can you find an orthopedic oncologist? It is a specialty they have at Penn and probably elsewhere. I think that would help with knowing if you can have a hip replacement.
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I have had consult at MDAnderson, I can check with them. Thanks for the suggestion.
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Hi All,
Just wanted to send good thoughts and wishes to everyone going through surgery, recovery, pain, DR 's, etc... I finally finished 10 rads to lower back following surgery to L5. Skin was fine- just finished a few days of upset stomach and diarrhea , chills, and some debilitating fatigue. Pain is finally better after months and months. Wednesday I was feeling so lousy and depressed. Today I feel much more myself. But reading this thread helps me feel so much less alone and so much more able to look to the future. Nothing is worse than chronic pain and fatigue - and so sick of staring at my messy house. Thank you all so much for being here. Whether or not a comment is addressed to me didn't matter- it is the compassion and caring and good advice which makes this site priceless to me. :
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Reader continued pain really is debilitating so I'm very glad for you that you finally have some relief.
Don't worry too much about the messy house as it will wait until you are feeling more energetic..... unless of course if the cleaning fairy pops in........lol. I'm sure there are many of us (a-hem) that go through periods of messy house so you are definitely not alone in that or anything else so rest and regain.
Love n hugs. Chrissy
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Reader, I know what you mean about the messy house. It seems to close in around me, and with the fatigue and not being able to do anything about it, it really sucks! I don't know if you have anyone you trust enough to help you, but my sisters have been really helpful over the last few months, one or two of them come at a time for a weekend once a month and help me de-clutter one area at a time. Once it has been de-cluttered, I am better able to keep it up with just being persistent and consistent every night, spending 10 minutes tidying up.
The thing is that when it is so bad and overwhelming, and energy is low, it takes even more quality of life away from us. I have also used a professional organizer in the past, and they can be excellent, but are a bit expensive, and you have to be very specific about what you want done because they will try to do EVERYTHING and not focus on what is making you most crazy at the moment. That is another good way to approach it: What is making you most crazy RIGHT NOW? Can you spend 15 minutes or pick up 15 things? If you can do that every day, things will improve SLOWLY. I have been looking for a magic wand for this, but haven't found one yet, so all I can do is commiserate with you and encourage you. And send lovingkindness and suggest you give yourself some lovingkindness as well. Rest, do what you can, and rest some more.
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Deanna - glad your surgery is past and wishing you a speedy and great recovery!
Reader - sending you hugs. Radiation knocked me on my sweet pattotie for a few weeks and I only had five treatments. In the big scheme of things, a messy house doesn't matter. Here's hoping you'll get rest so you can get out and about soon!
I see my oncologist on Tuesday; pretty sure I'll get good news from him as my bone scan results looked pretty good.
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Kiwi, keeping my fingers crossed that your report is indeed good.
Love n hugs. Chrissy
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Deanna prayers for quick healing!! Hugs to all you gals - it is amazing how the weather seems to effect the bone pain these days. Wishing winter would leave and we get some nice warm spring weather. Sylvia
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Thanks, Chrissy. It was good news. No evidence of active mets in bones. He's not sure if my tumour markers mean anything or not, but they haven't changed since last September. And all my blood work looks great. He wants to see me in 4 months.
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Woohoo Kiwi!! That's great news!!! It may have been a small infection or inflammation somewhere that pushed your markers up back then.
Love n hugs. Chrissy
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1. Bone mets in my LSpine; did the steriotactic radiation several weeks ago and still having pain to the back. I take Motrin 800 mg 3 times a day. Saw my MO, after a bone scan and that showed nothing new. My MO says that the Faslodex can cause pain! YIKES!!! can't get away from the wrath of BC, huh?... My option, IV Zometa or continue on the Motrin [helps] for pain. MRIs were recommended but I am in the middle of breast reconstruction via tissue expanders and MRIs are not recommended due to magnets attached to the tissue in my chest.
2. I had my issues with Femara and screamed at my MO to stop it early in the game after BC recurrence and post chemo. Some of these drugs can be very debilitating and really did not want to continue with long term disability - cannot stay at home in bed like that.
3. To everyone living here in the US: you should get copies of any part of your medical record, even images, as long as you sign the release - it is the law and it is your right.
Love you all my BCO family!
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Thanks, Chrissy. He thinks it's the Femara that's causing the pain plus "normal wear and tear". He said the areas where I have new pain (that triggered the bone scan) are typical areas for Femara pain, but better safe than sorry. He also ok'd my trying boswellia, so I'm off to find some. Hopefully it will relieve some of the arthritis aches and calm my tummy down. The ibupropen takes the edge off the pain, but my tummy is a mess.
Hugs to all,
Terre
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So happy for your test results, KiwiCatMom! Activern, any chance some type of pain patch would help? I've had some relief w/5% Lidocaine patches, and there are also stronger (narcotic) options.
I am home after 6 days in the hospital, a new hip and 2 much needed blood transfusions. Still waiting on pathology report to unravel some odd and somewhat conflicting observations and opinions from my onc, ortho surgeon, and other docs. One worrisome comment from my surgeon is that some of my bone marrow looked funky, but he said he "reamed out every thing that didn't look right," LOL, so perhaps the whole painful experience will turn out to be a blessing in disguise.
Although I wasn't up to posting, I read and drew strength from your well wishes, and I just wanted to let you know how much each comment meant to me when I was in the hospital. Deanna
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Hi Deanna, so very happy to hear your recovery is going well. I know waiting for the pathology is miserable. Prayers they removed every angry cell that was doing damage in that area! I can't believe just a couple months ago you were fine! How did you find your bone mets to begin with?
Take care of yourself! Amy
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Deanna, I'm so glad to hear you're home and doing better.
Leah
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Reader, congrats on finishing rads and having less pain. Yay!!! Kiwicat, I also had stomach problems in the beginning of Femara treatment but it went away eventually. Deanna, hope your Team can iron out the crinkles soon and you're enjoying being back home.
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Deanna,
Happy to hear that you're home. May your recovery be uneventful.
Caryn
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Amy, I was really sick back in December with what was dx'd as bronchitis, a funky viral infection, pleurisy, rib inflammation, etc. Multiple chest & rib x-rays showed no concern re. mets, but I couldn't shake the sickness (totally unlike me), so I finally went to my onc to see if something else was going on. At first he reassured me I was just dealing w/a severe viral infection, but my blood work came back w/elevated liver enzymes and my CA27-29 was 137.5. Sent for a CT (an ordeal and poor quality b'cuz I was so sick and dehydrated), and here I am. I was scheduled for MRIs (my ins co 2x denied a PETScan) @ UCLA (3 hrs away) next week to figure out the extent of the bone mets when I ended up in the hospital.
As an aside, we had been displaced from our home back in August due to a flood that necessitated totally moving out and putting everything in storage. We lived in 2 different hotels then a rental home for what turned out to be a 4 month major renovation. The way it all evolved, especially the damage to our home and possessions done by the construction company that did the initial tearout, delays in recon, insurance hassles, etc., was unbelievably stressful, and I feel has everything to do with my relapse.
So probably more than you wanted to know, but some points maybe worth sharing. Deanna
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Deanna,
I'm glad you are on the mend. Very sorry about the flood situation with your home. I'm sure the stress has caused some of your health issues. My brother's home burned down a year ago in Dec. It's been very stressful for him & ins took almost a year to reconstruct a very small home. When competed and he moved back in, the roof was leaking and they won't come out to fix until there's no more snow in the midwest. He's ready to move to warmer temperatures before another cold winter in Chicago.
I hear that PET scans need to be called in now after 3 with Medicare for approval. So far, I have not been denied.
Hope you continue to recover well.
Terri
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Deanna, Wow, after reading what you wrote, I thought about the timing of my Stage IV diagnosis. It was after moving 3 times within the space of a year, and not voluntarily (lease wasn't renewed, sublease couldn't be extended, etc.). And we were in NYC, which only amplified the problems and the financial pain. When I was diagnosed with Stage I, it was 2 weeks after a root canal, which my dentist said was the worst he'd ever dealt with in his career ("And I was a dentist in the Navy," he said, lol) I read some theory recently about terminal cancers being related to root canals, and of course it's hogwash, but one followed the other with me, and I have acquaintances who were diagnosed with breast cancer after extensive dental surgery. One thing is certain, any stress that came before a diagnosis certainly didn't increase our body's ability to fight disease.
Hugs to all, and thanks to all for sharing your experiences, good and bad. It's an immense help to me.
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Terri, my heart goes out to your brother. I can only imagine the stress; and, sadly, insurance companies seem to add to the frustration with decisions like not fixing his leaky roof immediately. How ridiculous.
And TarheelMichelle, interesting that you also went through similar moving stress. David Servan-Schreiber points out in his book, Anti-Cancer, A New Way Of Life, that the most dangerous kind of stress is the stress from situations we have no control over. I should dig that book out of storage and reread it. Lots of grest advice if anyone hasn't yet read it. And I do believe there's an as yet unacknowledged connection between some dental procedures and bc -- maybe just as simple as a distracted immune system, but it makes sense to me that our bodies can only handle so much disease and/or stress build up before something gives. Deanna
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Oh how I tend to agree with you girls. Stress of losing a brother in a horrible train accident in the fog and suspecting and catching my husband cheating over a 5 year period is what I am sure caused my mets. Our bodies just can't handle everything that can be thrown at them and something has to give. Keep on fighting girls - that's what I am trying to do - even though there are some definite down days.
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Hi all!
Deanna - yeah! So glad you're out of the hospital and on the mend.
Deanna, Saskie, Michelle, and Terri - really sorry about the tough times you went through. In retrospect, I went through extreme stress just before both my Stage I and Stage IV diagnoses. I have no doubt that stress leaves us immunocompromised and makes it harder to fight the disease.
On a happier note, the results from the new Pfizer drug looks promising! Hopeful for quick approval and worldwide distribution.
Take good care,
Terre0 -
what new Pfizer drug?
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Hi Maureen, I'm just checking in before I head out to get my Faslodex shots and saw your post. Here's a link to an article about Pfizer's new drug for ER+ women: http://online.wsj.com/article/APa5f688e379fd4cb7a... It's called Palbociclib and there are actually several BCO threads with that name in it that were started by women in the trials. It's been fast tracked at the FDA and I think it's supposed to be available sometime in 2015 for all breast cancer patients.
Edited to add: That link doesn't seem to work but if you google the name of the drug you should find tons of articles.
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