Bone Mets Thread
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What sort of pain, and what have you tried?
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Chats, I don't see that anyone responded to your dry eyes. My ophthalmologist put me on eye drops and they have helped me a lot. Just use the over-the-counter ones like Systane or Refresh--one of the better ones and not a cheap one. He said to use them at least twice a day but I can use them as often as needed.
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Chats, I've noticed that my right eye is much drier and waters a lot since being on Letrozole, so I'm assuming it's the cause, weird though it's only one eye. A couple times my eyeball has been stuck to my eyelid when I wake in the morning. Now I've trained myself to massage my eyelid before opening it. I've been on the med 14 mos. and noticed the eye problems about 6 mos. in.
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So many to answer but it's getting late so I have to be quick.
Chats....my TM floats between 320 and 520 all the time. I've given up worrying about it. If my MO doesn't worry I don't.
Claudia and Maire....thinking of you both and sending big hugs.
Sorry for the pathetic input tonight. I'm tired. I had a chat with the breast care nurse who should have been assigned to a year ago.
Gracie.....celebrations again, although I've already done so on another thread xxx so pleased for you.
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well off to MD Anderson today for treatment consult. Dx with liver and spine Mets on 11/6/17.
Love my local onc but trying to feel secure in decisions.
He put me on Faslodex, Xgeva and 100 mg ibrance on 12/1. Spine tumor at T7 ish pushing on nerves causing pain. When took first Faslodex shot it must have messed with inflammation and had trouble walking next day which got bad enough to use cane in 5 days. He put me on dexamethasone steroid on 12/7 which has helped tremendously. Only muscle twinging now, almost normal.
He sent me to rad onc who did my breast rads 5 years ago. She set me up with CT planning for rads yesterday and said she would get me in for IMRT photon 10 treatments to spine tomorriw. From what I understand it is asap due to core. She explained it is for pain relief and tumor shrinking Then back to med onc to continue meds and blood work and scans.
Decisions decisions...spines priority now but liver and eating is a concern since I had gall bladder surgery starting this journey on 11/1 which contributed to weight loss. 12 pounds in 8 week's but hoping walking will improve as will digestion to be able to eat more. 5 pounds in days since cane use.
Hoping for informative trip in chaos of MDA today.
Thanks for ideas ladies.
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JFV,
I am on OxyContin 10mg. twice a day. That's way down from 40mgs. I was on before I had radiation to the bone metpressing against the nerve near my right rib. Pain still surfaces on my legs but mostly at night. I was also on Oxycodone 10mgs. for breakthroughpain, but I'm no longer taking that anymore.
Hope you find relief with something. Recurrent pain can really mess with your brain.
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JFV, I had to use Fentanyl patch 25mcg this past summer and fall with OXY 10mg for breakthrough and Oxycontin every 12 hours. The patch seemed to do more for me overall. Have you tried the patch?
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Leapfrog,
God bless you. You have SO much going on, and yet you remain positive and uplifting. I am sorry to hear about your marriage. This disease has taken so much from all of us; I am not the same person I was before my diagnosis. There's no question that my own marriage has changed as a result, and I am no longer able to be the wife I once was. I am fortunate to have a pretty understanding husband, but I know he's not a happy camper about the changes and adjustments we've made to combat MBC.
I am the one who wrote about living in the moment, and I'm learning about mindfulness and what a great tool it is to help us get through our days. I am practicing different breathing techniques, and although it sounds hokey, it can really help me to stay calm and focused...
Anyway, prayers being sent your way for strength as you navigate through your day.
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Gracie,
No worries.....I recently started Faslodex too because the Femara/iBrance never worked for me (went 6 months before MO ordered scan). Faslodex is working, and although the first couple of shots make your ‘booty’ sore, it’s very tolerable. Hoping you have good results as well
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schoolmom- so much on your plate just now. The new treatment should knock those evil cells to the curb. I have faith that you will be feeling better and pain free, and have an appetite again. Thinking of you. May the force be with you MJH
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JFV medical pot😉
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Thanks ladies for letting me know what works for you. So far I've taken Tramadol, oxytocin, and a muscle relaxant. The muscle relaxant gave me one good day and then I was a zombie. Tramadol might take the edge off the pain but I'm not seeing a huge improvement. Oxycodon is just weird. Minimal pain relief and a drugged feeling.
Some times my pain is from head to toe. Can't be sure if it's muscle or bone based. Then I have the precancer arthritic joints and sciatica.
I've never tried a fentinal patch or medical marijuana. But, I finally found a pain management group near my home. I'm hoping I can get in a visit before Xmas.
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Anyone touching base with Pattypeppermint? This is very concerning that she is not posting.
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I hear you, Sandi.
I'm VERY worried about Patty, too. Last I heard, she was having some difficulty with words, typing, etc. That was a couple of months ago. I don't know if she has anybody who can update us.
When things start to get bad for me (and I'm hoping I have PLENTY more months left b4 that happens....) my daughter will take over updates.
L
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Yup, that's a good plan Lita! My husband knows to keep BCO updated if needed. I just hope Patty has support if she is hurting in anyway.
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I'm concerned too. Is there anyone on the board who might be able to call and check on her?
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Leapfrog You have been so helpful to everyone here.
I’m sorry I’m 11 hours after your post. Nighttime here now and I find that the physical tiredness is frustrating. You have been through so much. How is it going with your husbands visits. Did he cut back a bit? I hope so. Take care. Sending good thought to you
Dr tomorrow. Ive been trying to write my questions down for the last 2 hours and can’t remember one. Maybe in the morning before I leave.
Almost funny my insurance company called to OK the PET I had in November. Unless mo has a new plan.
Schoolmom. I hope those rads zap those mets and you get relief. Take care0 -
Great consult at MDA today.After 4 hours Dr confirmed my current treatment plan is just what they would do. She did call my oncologist though to suggest booster Faslodex at day 15 which is protocol for month one, She also suggested CBC MPC and creatine bloodwork due to high levels and appetite issues. So injection, bloodwork and first spinal IMRT tomorrow at my office 10 minutes away. Possible IV fluid if creatine is still high...
Took a load of stress off to know treatments are consistent.
Thanks ladies
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Claudia, hope you got through scans ok and wishing you the best possible outcome.
Gracie and Schoolmom, praying for you as you navigate these rough waters.
Lita, glad to see you posting again. I like your idea of having a succession plan to keep us posted. I'll tell dh to do the same.
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Hello Ladies I haven't posted in a while and every time I read over the threads there are many new names that sucks. I want to come on here and hear that everyone is free of pain , free of fear and living life to the fullest. I can dream can't I maybe one day hopefully soon.
I want to wish each and every one of you a Merry Christmas . It's funny when we are doing well we tend to come here less. Like Dee and Chelle and I'm hoping Patty as well we put cancer as far away as we can out of sight and mind for as long as we can. I'm praying this is where Patty is enjoying her children and the Christmas season.
Babs is the baby here yet?
Okay that's my fragmented post for now have to leave the medical MJ for after posting 😉 Next time.
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Merry Christmas Wendy!!! And God bless us, one and all
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Good news. I'm just home and first thought is I wanted tell you guys. Although there are more mets on L3&4, one of them on T level seemed to be clear. So that is why we are staying with Faslodex and addding Herceptin. Mo is very hopeful we can control this with Herceptin and possibly tykerb. Feeling hopeful.
Had first Her today and even got an hour nap from Benedryl. Thanks so much to all who helped through scanxiety. Sending prayers to all especially Lita and Leapfrog and Patty
JFV. The Faslodex has caused havoc with my arthritis. Doc assured me today there are no mets in my hip ( where I have awful pain.) just arthritis. Remembering the femara / Aromasin Days..arthritis really started and progressed then too. Hoping you find something to relieve the pain.
Wishing you all a peace filled weekend Maire
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Sorry I haven’t posted. Just so crazy busy getting things ( treatment wise) done before my trip. I’ve had 2 Halaven infusions and TMs went down 10%. So happy about that. Got lots of booster shots for low Cell counts. Got my 1 dose of Doxil last night and neulasta today. On my way to the airport now. Baby being born Monday st 7 am. Soooo excited. Will send pictures. I need to share this with all of you who guide Support and cheer me on and makebyhis journey that much easier because you’re in my life!
Bab
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Babs- have a happy trip! Can't wait to see the baby pictures.
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when my cancer reared it’s ugly head I was working as a travel nurse. I knew that in order to work as long as possible, I’d have to give up bedside. Was offered and accepted the role of oncology nurse coordinator.. kinda a mix between navigator and patient advocate. Well, the new job has me working five days a week, so the 8 hr days are better than the 12, but the five in a row are exhausting me. I work 3 days on our unit, advocating for patients, starting chemo, and assisting the staff nurses and 2 days in the clinic. The clinic has an opening in for a part time RN... 2 ten hour days a week. It’s only been 3 months since I accepted my position. Is it wrong to want to transition already? Remember, my new boss HATED me... wrote me up when I had to be out for PET. And then I mentioned ADA, and she’s been super nice ever since. Opinions greatly appreciated!
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On the flight and SIL wrote dd is in labor. C section tonight. Well get there after. Bummed but excited
Babs
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Babs!!! Prayers going up for your DD and baby! And safe flight fir you!
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Babs, prayers for your daughter and grandbaby. Safe travels!
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He just couldn’t wait for us to get there. Here’s our precious grandson
everyone is doing great. He weighed 7 lbs 6 oz. no name yet!Bab
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Oh my gosh he’s beautiful!!! Congratulations!!!!
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