Bone Mets Thread
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Thank you Moderaters, 3-16 and Linda E
I of course have relayed all to my MO and the NP there. 3-16 I surely pray it is simply bursitis! Who ever thought i'd ask for that.
Pain med is of no avail, advil lessens the inflammation, but at this point it, whatever 'it is' seems VERY irritated. I have a big food prep job going out tonight and I have called for help to get it done.
The MO/NP say it could be from the tx acting on the tumors which is what I hope, or it could be a tumor pressing on a nerve- UGH! My darker fear is that there is a fracture......
But as you all advise, I will know more tomorrow. Thank you all so much. Just trying to get through the day. And also trying to stay excited for our trip to MV on Saturday, which I hope is not clouded by the MRI outcome. Trying to 'turn it over'
Linda glad the cough is finally resolving!
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Waiting is the worst! We're all here for you.
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Dune how is your little guy doing this morning. I never got the bird thing until I found a half dead baby robin in the grass. I raised that thing with lots of hard work and love and he survived. I will never forget how affectionate and fun he was.
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Gaia I'm sorry to hear you are in pain hopefully things will get better for you. The mind can make us crazy every little pain in my head is this disease sneaking around in my body reeking havoc. Asking for help during these times is priceless. I am wishing you a great day .
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I had a pet/ct scan yesterday. My first since I was dx three months ago with bone mets. I have changed my diet, and worked on visual imagery. My onc has me on faslodex and zometa. They are concerned because my bone biopsy, which is unreliable, showed that I'm no longer er+. I'm do frightened. I couldn't sleep last night even with 2 trazadone I was up until 2:30 am. 10 days ago I had surgery-- a rid out into my femur for a fracture. The second fracture. The first was in my pelvis, which they radiated and saw was healing. Then the femur. I don't think I can see my onc tomorrow. I'm thinking just my husband can go. I don't want anymore bad news. Has anyone not gone to their appt.? Sometimes I wonder what horrible thing I did to deserve this. I'm sorry to be negative. I'm scared and tired of being scared. Thanks for listening.
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So much going on here -- way too much for me to acknowledge individually at the moment, as I'm headed out to UCLA this a.m. to see the ONJ expert for a tooth extraction -- the tooth my local dentist wanted to save. I'm a bit concerned b'cuz I'm on Ibrance, which can cause bleeding. So any positive thoughts for a smooth procedure (my appt is @ 4:00 CA time) are coveted and much appreciated!
(((Rachel))), you've gotten through the femur surgery and pelvis radiation, and you will get through whatever else you have to. I will be praying your scan results are excellent, but if by some chance there's an issue, you will deal with it. I understand your terrible fear, but you really should go to your appointment, just so your onc can see you and know how you're doing after your surgery. Sending your hubby doesn't sound like a good option, at least to me. Hopefully, your onc is comforting and supportive. You have been through a lot, but please don't lose hope now!!! A long stretch of much better days is hopefully just around the corner for you.
Thinking of everyone who is struggling with pain or still recovering from a bad patch, as well as those who are having scans or awaiting scan results. So sorry not to have the time to address all individually today, but much love and caring and prayers going out to each and everyone. Deanna
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Rachel1, I completely understand your paralyzing fear, but not going to your onc appt., in my opinion, is a poor choice. Eventually the news, whether good or bad, will be told to you. Do you want to put your husband in that role if it is bad news? Your onc and supporting staff will be able to speak with knowledge and hopefully kindness and explain all the aspects of any dx that may occur. You are putting all your negative energy into this being bad news. You mentioned you are doing visual imagery, have you tried imagining that your onc comes into the room with a smile on his face and a good report in his hand? I do alot of imagery and truly believe that is a better use of your energy that expecting everything to be bad. Remember we are here for you, feel free to PM me if you would like. Whatever the report shows, it is something you will handle and hopefully this is just another blip on the screen.
Peace and love to you Rachel1 Best wishes for a wonderful scan report. Myra
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Deanna,
I hope all goes well at UCLA with the tooth.
Terri
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Rachel- I agree with Deanna and Myra that you should go to you appt. with the MO. They need to followup with you since your surgery and can assess what is going on with you much better face to face. We all understand your fear and no sleep. If your DX is no longer ER+, they will know how to treat you. Perhaps your husband can take notes for you at the appt. which can be helpful. Plus, you need to hear the results of your scans. All in all important for you to keep that appt. Visually think of all us supporting you at your appt.
Gaia- Good that you are getting some answers tomorrow. I take Gabapentin for nerve pain. Not sure that is what you have but ask your MO about that possibility.
Deanna- Wishing you the best outcome today with your tooth, and so glad you are at a top notch facility to help you. I'll be sending LOTS of good thoughts to you at 4:00 your time. Let us know how it went.
Amy- good luck with scan today.
Wendy and Dune, love your birds. I need a cat!
Annie, is your stomach a bit better?
My best to all......
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Rachel, sorry about the bone biopsy results. Can you ask for a 're-do? It could be a mistake to have a ER/PR negative results, if the staining did not do properly. If for some reason you can not have the pathology redone, and if your tumor marker is showing a good trend, you might need to discuss with your onc about not rushing to treatment change, in case your hr status actually did not change. All this needs you to see your onc in person. If you hide yourself at home, nothing will happen then. So, pull on your big girl's pantries and present yourself in front of the doctor and have a good plan worked out tomorrow!
Gaia, do you have mets at the L section of your spine? Or, at your hip? If the pain occurs only when you put weight on the hip, it sounds like you have fracture kind of thing on either site.
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Has anyone else had to postpone their Xgeva injection because of low calcium levels? I was told to take a supplement, but need to wait until my next chemo infusion to get the shot. This only would have been Xgeva #2.
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((hugs)) and support to everyone who needs them today.
Dune, glad to see you again.
I'm having an on/off day with anxiety, which helps nothing. I'm getting nervous about finances. My hubby is doing real estate but it's simply not enough money compared to what he used to make. This is what he wants to do. I am asking him to get a second job to help with the cut in income and he's really dragging his feet. He's been a little more proactive in the past week. Please keep me in your thoughts and hope that he gets anything, even just a part time to supplement the income. He needs to be the provider, not me w my cancer, it's too much for me! Well just had to get that out! Hopefully some good will come in the nest few weeks and a job will be found that he can enjoy and will help w finances.
I'm glad to have you guys to vent to, I don't know where I'd be without the support. It is so scary and it helps having this online group.
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My mother just got some news and I am hoping others might have some input to share. She's had several scans in the last 6 months because of pain that comes and goes. None showed progression. Two MRIs were ordered to get a better look at the pelvis where her pain is focused and a possible sacral fracture was found, but no progression was indicated. A CT was ordered to compare and get a better look and she went in for results today. She was told that the bone that connects her leg to her hip (sorry, her English is bad so this was the best she was able to explain it) has collapsed and is probably what's causing the pain. Her onc then told her that even though scans show no progression, he will take her off her current treatment and switch her to something new after she has radiation for the pain. He said that even though the scans don't show progression, he feels that the cancer must be progressing if her bone became weak enough to collapse.
They don't do PETs here and I know that CTs, MRIs, and bone scans can not accurately assess the size of bone mets, but taking her off an easy treatment that may be keeping her stable seems premature to me. I'm sure I have read about others on here who have gone on to break a bone while stable.
Has anyone had experience with this?
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See everyone, This is such an active thread it is tough to keep up.
Marilyn, I am happy you are stable.
Annie, keeping good thoughts for you that scan results will be great.
Gaia, sorry you are having such a difficult time. I hope you get answers and tx plan soon.
Rachel, I agree with everyone else here. It is important for you to go to your onc appt. You need to discuss current condition and symptoms so you can have the correct treatment plan. I know it is easy sometimes to throw up your arms and give up, but I firmly believe that there are still treatment options out there for you that will make you feel better. Maybe you should also talk to a therapist who can help you deal with everything that is happening. I am sure that it feels like things are falling in on top of you. It is scary for everyone.
Deanna- I hope things go well at UCLA. Tooth extractions are never fun.
Cristina, hugs to you. Feel free to vent anytime.
This has not been my best week. I have had an achy hip and achy legs for four days. I am hoping it is because I overdid things, increasing my walk too quickly from two miles a day to four. Really, I think I should be able to do four miles. Ugh! Unfortunately, the achy reminds me of the way my hip and legs felt last spring before the pain spread and worsened. I am trying to be positive - maybe too much activity, maybe pain from healing, maybe she from Arimidex, maybe a virus. See, I really do read this thread. Anyway, today I also have terrible nausea. I know many of you can relate to that. I am thinking it is a virus or nerves. I am scheduled for blood test, onc appt and first Zometa infusion on Tuesday. Hey, maybe the pain and nausea are just dress rehearsal for that infusion.
I hope everyone has a good night.
Lynne
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Rachel, I have had my husband tell me results of tests rather than Drs. Sometimes it's better coming from someone that loves you.
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Well crap, shit and fudge - PET/CT show significant increase in metabolic activity throughout my spine, ribs, hips, shoulders, etc., places previously dx but now active again. I have an appointment already scheduled next week to figure out a new plan. I'm really stunned, sad, disappointed and tearful but the good news is it's not in my organs so I have a lot to be thankful for.
Shit shit shit -
Amy
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oh Amy, that really stinks. At least you can see the good side of things - that it is just in your bones. I am sure things will seem even better once you have your new plan in place. Sending hugs your way.
Lynne
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Deanna - Holding your hand in spirit and hoping all goes well and painless.
Rachel - You did not deserve this and it is not your fault! You have to go tomorrow - bring hubby for support and a second pair of ears. It's not easy to get an accurate biopsy from bone. I'm visualising good scan results for you. You've been through a lot lately - be kind to yourself. Sending you big virtual hugs. You can do this and we will be holding your hand in spirit tomorrow.
Bluefrog - If calcium is too low, you can't get the tx because it will further lessen the calcium. I have no experience with too low, mine are always too high and I don't supplement.
Cristina - vent away. Praying a new job comes along. Are you on disability or is it an option for you?
Goldengirls - I'm not sure what you mean by collapsed bone. Do you mean a fracture (aside from sacral area)? Could it be the femur? Did Onc suggest rads? I see your Mom is getting bi-monthly Zometa. Perhaps a switch to Xgeva? Sorry, I'm not being much help but not sure I fully understand. I don't know if Xeloda has a negative impact on bone density - perhaps someone has an answer. What would be the next tx?
Lynne - Sorry you're in so much pain. You may be increasing your walking too quickly. I got back in a walking mode lately, pushed myself a bit too much and have had increasing pain. It's not the first time I do this, I guess I may be a bit too stubborn. Anyway, I reduced the walking a bit, just enough to feel comfortable enough. Prior to dx, I used to walk 6 kms in the forest almost every day, sigh. Good luck with Onc appt and and Zometa. You will probably notice less pain once you start Zometa.
Annie - good shopping today?
Myra - how are you?
Sharon08 - been thinking of you lately. My hands are getting more painful and stiff.
Dune - I made it to Brownsville... Any news re the mark on your hand?
Well, I finally feel my normal self for the past couple of days. Feeling much better in fact. Have not heard from my nurse as to whether we would switch from Aredia to Xgeva, so infusion next week. Gosh it took me time to recover from that messed up infusion. BUT, I will make sure it is done properly this time, the control freak in me is waking up...
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Amy, shit, shit, shit. So sorry. Praying next tx stops everything in its tracks. Good news on no organ involvement though.
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Amy, indeed, cramp, shit, and fudge on the bad news! You have been doing fabulously with a short chemo and on Femara for two years, right? No wonder you are very disappointed. I would be. The doctors tend to think Femara most likely works from 6 months to 2 years. My onc would be thrilled if Femara would work for me for 2 years. And also indeed, that the mets is still confined in the bones is a very good news! So the new reality you are facing now is Femara became less effective, which allowed the mets to be a little more active. Next treatment will be in place soon and the mets will be knocked back immediately after, because you have responded to your treatments very well before, you should be able to continue responding well. Hang in there! Wish you NED again soon!
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Amy such a bummer. Hoping your new plan will knock the mets back. So glad it's not in your organs but I totally understand your disappointment.
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Thank you for your kind words and encouragement. Good points regarding short chemo regimen and Femara - I hadn't heard this before. I will keep my chin up and be thankful for what I do have AND I'll look forward to a new treatment plan with results.
Amy
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Linda - I managed to squeeze more information out of her and from what I have pieced together, it is the femoral head that has collapsed and is rubbing against the socket. She's waiting on an appt with the radiation oncologist who will tell her how much radiation to that spot and what his recommendations are for other spots in her lumbar spine and sacrum.
The oncologist is worried that this collapse is due to progression not getting picked up by the scans, but also said that it could just be the result of wear and tear over the past 3 years. He was under the impression that she'd had radiation to the lower back/pelvis when first diagnosed because that's where most of her damage was, but at the time the radiation oncologist only treated the two spots that were causing her pain (clavicle and T5).
Hoping it's all just wear and tear from the mets and not a sign of progression.
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I had indulged in a long. Thanks for the internet in Dusty. He fell off his perch thtee times last night,
OK. I have no idea what I was trying to say there.
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Gaia, I'm so sorry you are in such horrible pain! Wishing you a great MRI result! I will pray fo a pain free restful night. Hang in there
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Dune,
Poor little Dusty. I hope he doesn't re-injure himself again.
GoldenGirls, sort of funny when we hope our body parts wearing out are the cause of our pain, rather than progression. My prayers for a clean scan for your mom.
Amy
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Amy,
Just read your news and I'm so, so sorry. The same thing happened to me in May after 4 years NED… it's back in my spine and ribs. GRRR… I've been on chemo since June, and am switching to Ibrance/Aromasin soon. You will get this under control!!!! The fact that you were NED for so long is promising. Wishing you the best!!
Rose.
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Hi Rose,
I'm sorry you had a similar thing happen but it provides comfort knowing you've done well with a new plan. I guess I shouldn't be so surprised because my left hip has hurt like a bugger for many months now and recently my back, shoulder and top of my shoulder have started to hurt too. One of the first things my onc did was refill my Oxycontin prescription. No point in being a hero, right? I hope you stay with NED for many many years. Thanks Rose for your comments and well wishes. Every bit helps tremendously.
Amy
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Goldengirls - sounds painful - rads will certainly help to reduce the pain and stabilize the bone. Praying it's wear and tear. BTW, your Mom is lucky to have you around and keeping abreast and proactive.
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Amy,
My MRI was mixed, but CT was clean. The bones seem to hide out in the CT scan. No, you should not be in pain! I hate those pain pills but the alternative is much worse. I guess my onc.'s reasoning with the chemo was to prevent further spread. I'm hoping that we both can get back to NED ASAP!
Hang in there...
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