Bone Mets Thread
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Mab60--Sorry you are here but this group is amazing with its support and knowledge. Let us know what your Oncologist says tomorrow. Do you have someone going with you to take notes?
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I was admitted to hospital. Rod being inserted in the am. I'm scared. What should I expect? Too weak to radiate.
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Mab60, I'm so sorry about your news. I'm sure you are absolutely terrified, as we all were at first. It sounds like your mets have been there all along, just missed due to the lack of an initial scan. But you know, that might turn out to be a huge blessing, because you've already had some very aggressive treatment (the bmx), which it's doubtful would have been approved if they had known you were Stage IV from the get-go. So as frustrating and upsetting as it is now, you may have really benefited from their oversight. Let us know what you learn tomorrow. I'll be thinking of you!
Loves, I'm so sorry to read that you're hospitalized, but I'm actually not surprised. The pain you've been describing has always sounded to me like you needed surgery. As far as what to expect -- after a week or two of recuperating, which may not be fun, but you'll get through it -- I think you can look forward to much less pain and being able to walk normally. I'm so sorry you're going through this, but you are in my thoughts & prayers! And just a heads up -- hospitals seem to bring on the pity party, especially when you're alone at night -- so just remember we are here to help you through that if it happens.
Big (((HUGS))) to you both!
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Thanks for the comments. I feel like I know y'all already because something inside told this would be mets so have been following this thread. Sounds like from path that it is now weakly positive for estrogen where initially it was strongly positive. Report mentions strong for gcdfp15 whatever that is. But they know it came from breast. From what I have read it sounds like if it remains in bone it is better. I would guess I would be looking at radiation
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I'm so scared. I can't have rads till this is done.
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Mab60 - A warm welcome to you although sorry for the reasons that bring you here. Will also be thinking of you tomorrow.
Loves - It is a good thing that you have surgery tomorrow. The sooner the better. This way you will avoid a fracture to the femur. Your story is very similar to mine, saw the Ortho on a Tuesday and had surgery the next day. Didn't have time to think about it! You can expect a lot of bruising and swelling after surgery. Take the pain meds as prescribed when you get home to avoid having chronic pain. You will probably be given exercises to do once you get home. I was in the hospital for 4 days. I started walking with a walker and then a cane after surgery. I had 5 tx of rads about one month later to consolidate the bone. A few of us have gone through this surgery. You will get through this! You will be in my prayers tonight. And remember what Deanna said, we are here to help you.
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Mab60, Welcome to the bone mets thread. The people here are always ready to give support and advice.
Loves, I am so sorry that you are facing surgery, but it should help bring you relief from the terrible pain you have been experiencing. I will keep you on my thoughts tomorrow. We will all have our arms around you in one big virtual hug.
Annie, I hope your back feels better soon. We all pay the price when we overdo it, but we also know that things need to be done, and sometimes it is us or no one, right?
Aurora, I am happy that you are beginning to feel better. I hope you are able to go home soon. I wish I could bring you a nice home-cooked meal so you could get some relief from that terrible food you are being served.
Wendy, I thought I was the one person who got caught crying while reading the discussion boards. Soon after I was diagnosed, I was reading some threads that I was not ready for. I thought my DH was going to take away all my access to the outside world when he saw all my tears. I have adjusted to things now.
I am sorry there are so many people in pain from bone mets or se's from tx. I hope everyone feels better soon.
My DH had an ultrasound the other day and now has to have a cat scan next week. Ugh. I find it much harder seeing him go through all this ugliness than facing my own dx and scans. More on DH later, hopefully news will be good. Of course I am imagining the worst, and my strong, optimisticoutlook is disappearing.
Have a good night everyone. We are enjoying beautiful weather here this week. It's hard to believe it is November.
Lynne
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LoveMaltes you are getting a great big virtual hug from me right now. You will get through this and be the stronger for it. I totally understand your fear I am feeling it with you. You will prevail.
Mab60 I'm so sorry that your in this fix but you will understand more as time goes by. I am still grappling with some of the terms it is scary waiting for results. The woman on these threads have been through so much and their love and support is priceless. We are here lean on us.😊
So my onc appointment went pretty well I think. The tumour has shrunk again by 1/2 cm so to date it went from five cm to 2.5cm. My onc says I will die from this that I need to face this reality it will spread. So uplifting do they learn to talk like that. Anyway she thinks it's the tamoxifen and I think it's my CBD pills. Whatever works when I started taking the pills there was a lot of itchiness in my breast and my mother used to tell me as a child if it itches it is healing. So I'm going to sleep with that I'm my little head.
Wend
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Wendy, I would not be happy if my onc said the things that yours did. We have had frank discussions, and we discussed the fact that there is no cure, but my onc also told me that I could live for a long time, and we are going with that. He supports my desire to be a super responder. We also talked about the fact that I want him to tell me if we reach the stage when treatments will no longer work. With those conversations behind us, we are able to focus on keeping me alive and feeling the best I can.
Lynn
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Loves, so sorry you are facing surgery but glad that they are taking care of you quickly. I'm sure you will be feeling much better after your recovery. My thoughts are with you
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Ugh to your onc's choice of words, Wendy. Of course, we all know that at the present time there is no cure, and no way to predict the course of our individual disease. But if they can keep us going for several years, who knows what the future holds in terms of new and better txs? Did you all see the Stand Up To Cancer video? If you haven't, here's a link. I found this very uplifting and encouraging. Research is moving much faster than it ever has! https://www.facebook.com/su2c/videos/1015298932190...
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LindaE- i really pray every day I should have the strength literally, for 2 wks straight i have been up half night, I feel like u know what the next day, got a recurrent cold( I know exactly why, lack of sleep stress will do that to you), I can't afford it. I have to be top shape to talk to docs, they think oh I am so strong they could just talk to me directly, just by the Grace of God i make it. Thank you.
Chelle I posted before about the numbers I know for the TM's maybe they will help you.
Auroaya You are so lucky they actually found the thingy was stabbing you, insane. hope you could feel better soon. How about the next visitor brings something delicious from outside so you don't have to put up with crappy food only?
Wendy- what the heck?? there are a trillion ways to convey something, this onco needs to be schooled. I've been reading so many medical books and over and over, those are surgeons and doctors writing it , and it's not the way it's suppose to go down. Unacceptable.
Lynn - you could not have said it better. Your Onco seems a NORMAL person.
Annie I give you a lot of credit, I have been due to go for walks, and there is always something more important to do, but it's there? Thanks for your prayers.
LynnE I could so sympathize with your optimistic strong disappearing, there is so much a person could take and you have been through a lot. i hope you will have better news next week.
Mab60 what a crazy story, It happens much more often than we think, I wonder if one of the reasons is the saying that they teach docs in Medical school - "when you hear hoofbeats think of horses not of zebras" , yep that's their mantra. So they limit their thinking to the more difficult, complicated or scary diagnosis. I've seen it at work both ways many times. It's too much to get through in the beginning you gotta understand exactly where you are at, and see what the best options are for you. Advise that have been given all the time here, is keep all your records, blood tests, treatments so if you need one day you will have it. I had that for my daughter, when we were ready to change Onco I did not need permission or favors from the old one.
Loves - I can only wish you best of luck with the surgery, and soon you will be able to do the Rads and then have your pain controlled.
Mary - finally done with your rads, good for you!
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Hi Everyone!
Back from a couple of days in Victoria for appt with Onc. I was having a bad reaction to a new brand of anastrozole, so she wanted to see me. I've changed brands but we won't know yet if it helps or not. I haven't been keeping up with the thread, so I'll have to go back & read. BBL, cheers, Dee
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talking of new treatments, Google GOSH and Layla Richards and you will read a fantastic story of a pioneering treatment which seems to have cured a child whose parents had been told no treatment left. GOSH stands for Great Ormond Street Hospital which is our leading paediatric hospital with huge research arm. Should give us all hope of future developments . Sorry don't know how to post link.
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thank you for your prayers. Surgery in a few hours. Worried after because I have bad time with all narcotics. They had to take fentenol patch off dizzy vomiting. I have tried them all. Anyone else have this problem? Zofran does nothing.
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Loves, ask for a Scopolamine patch. It goes behind your ear for 3 days and helps with nausea a lot. I've always had one with my surgeries. Know that we are with you. Best to you....
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Dee, I have had very different SEs with different femara generics. Every time I got a new months supply from CVS it was a different brand. One month got Teva brand and voila very mild SEs. Now I call several days prior and ask for the Teva brand, they order for me and I am very happy.
Loves, best wishes for a speedy recovery.
TGIF to all......Myra
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Loves, thinking of you this morning and praying for a successful surgery and gentle recovery.
Wendy, good news to hear the tumor shrunk by half! Whatever it is that's working keep doing it.
Dee, hoping the change to a different brand of anastrazole takes care of your side effects.
Deanna, thanks for the link, will check it out.
Bosco, thank you for the information. I hope you're feeling well.
Wishing everyone a good weekend, Annie
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LovesMaltese: dear Carol, thinking of you this morning and sending my love and caring along with everyone else here. x, Valerie
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Good morning ladies!
I am one who has learned to take pain meds very liberally so I can continue to function well. Sometimes I overdo it and get a little loopy, but so what? I'm still functioning. Anyone who is worried about addiction needs to banish those thoughts. It's about QOL, and making the most of your days pain-free.
There's been a lot of action on this thread and a few new people.
Mab60-welcome! It is scary but you will learn to adjust slowly. I always have moments of fear, but I come on here to get reassured or I just get through it with distraction, work or my kids or reading. I'm glad you were able to get a biopsy. I never was able to. So I live questioning whether my cancer is really still ER+/PR+/HER2- in 2012.
Loves-good luck with the surgery! I know you are scared but I think this is a step in the right direction. Just focus on healing from the surgery and make sure to take pain meds as prescribed.
Wendy- yay for a good appointment! Glad your tumor is shrinking. You've got a realist in your oncologist, huh? We all know we will die from this and it will spread. Why state that? Why not say, looks like we can control this well with the tamoxifen and by the time that stops working, I'm sure we'll have a new medicine for you to try, and you can live years with it in the bones! I like the itching analogy, sounds good.
Lynne- I hope your DH is ok. Is everything alright with him? I hope it's not a suspicion of cancer.
Annie- hope you are feeling better today! I'm sorry you got hurt so bad from cleaning the basement. Boo!
Aurora- wonderful to hear you are healing and getting stronger. Soon you will be out of there, right?
Deanna- how are you feeling?
Dune-how are you?
Hi to everyone else I may have forgotten. I am feeling ok today. I restatred the Ibrance last night only 75 mg, got awful nausea and a headache this morning but I feel a little better now.
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Cristina - my daughter had a lot of progression, she was asking for 6 mos for them to do a biopsy, finally they did a bone biopsy and yes, it showed a change from the original dx that it is now HER+. So it's always possible to do a biopsy, it's a matter of getting Onco to agree.Maybe they only do it when there is quick progression like by my daughter and or if nothing seems to be working like in her case. i could tell from your post that you are showing IT who is the boss, good for you.
Myra - you know my mom had the same outcome with meds. She was taking Atarax for the longest time, then one time she was itching like crazy, (it was the time that bedbgs were big news in NY, so we went crazy thinkig maybe..thank god it wasn't that), and then when I spoke to the pharmacist they told me that it was a different brand, and btw Teva is the one that was good for her, and from then on, when I ordered the meds, I always made sure to ask ONLY TEVA even if we had to wait a day.
Lindalou such a good advice with the Sco... really good to know
Loves let us know, just focus on when you will be done with the surgery!
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Cjanet my therapists say I'm making real progress and I do think I will be going home sooner than anticipated. How ibrance kicks cancer to the curb with minimum s
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Thinking of you Loves, and sending strong, positive thoughts & prayers! Hopefully the hospital will have a pain specialist/pallative care doc available to sort out what you need. I had some sort of spinal block prior to surgery, which didn't make me sick. Then I was thrilled to find out that the pain med the hospitalist put me on -- Acetaminophen+Codeine 3 -- was the first pain med ever that didn't make me sick. I don't know if you'd want to try that one, but like you, others make me extremely sick, as does some anesthesia.
Linda, thanks for the tip on the Scopolamine patch!
Auroaya, great news about your progress! You've been a superstar and an inspiration re. making the best of what sounded like a dismal rehab facility. Any idea when you might be able to go home?
Hard to believe it's Friday again. The weeks just seem to fly by. I hope everyone's weekend is as pain-free as possible!
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Hi all,
Mab60 - welcome to the thread. It does get easier to cope with as time goes on.
Loves - sending good thoughts your way. The surgery part hurt for a while, but once the stitches came out, it hurt less than it had pre-surgery, so I think you'll find some relief.
Auroaya - So glad you're making good progress!
Wendy - hooray @ shrinkage.
Glad you're a bit better, cjanet!
Lynne - hoping for good results for your DH.
Lindalou & Myra - great advice!
Bosco - are you referring to the little girl who is getting customised immunotherapy? It's been on the news here. They are doing some amazing stuff in the UK right now. Which is great for me, I hope, since I live in a Commonweath country and may have a better chance of getting UK-approved treatments faster than US-approved treatments. Fingers crossed. I know that everyone I've talked to lately who has cancer says that their MO is telling them that within a couple of years, we'll be looking back at today and seeing how antiquated the treatment is because it will be a whole new ball game. Is sure hope so!
Annie - hope your back is better today.
Momallthetime, Valerie, Dune, Dee, Deanna, Lynnwood, Lynn (50s), Chelle, and everyone else (I think I'm doing good remembering that many names) - hugs to all of you.
Wishing everyone a great day!
Terre
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Yes that was the story I was referring to. Just have to stay well in the meantime! Sounded quite a gruelling treatment but well done the parents for never giving up and let's hope it continues to work for her.
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Lovesmaltes,
I agree with dlb823 that the Codeine might be a good choice - I remember after lung collapse & surgery many many years ago I got sick on percoset and demerol pills, but I was able to tolerate the codeine given by IV for the pain. Now I bet they do it by pump so that the patients have the right dose (at first the pump was only available at Mass General but they must have it lots of places now). I hope you have some relief by now and that they are taking good care of you.
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The weekend has arrived. I hope everyone enjoys it.
Terre, you did a great job with names. Sonetimes i feel like I can't keep up with all the news on this thread.
Cristina, I hope you are still feeling better. It is amazing how well pain medication works when we take it. Yes, they are testing my DH for cancer. His pcp wanted to make sure that pancreatic cancer didn't cause the pulmonary embolisms last month. The good news is that the pancreas looked fine on the ultrasound. That was my worst fear. The bad news is that the liver shows heterogeneous echotexture (but no mass, so good sign) and there is an enlarged retroperitoneal lymph node near the aorta. The pcp is more concerned with lymph node than liver right now since the liver shows no other abnormality. It is a bit ironic that the liver is not normal since my DH does not drink and never has. Anyway, we will know more after ct scan. I hate cancer. I JUST HATE iT!! I hate everything it does to all of us. Sorry for the rant. I am done for now.
Carol, I hope your surgery went smoothly today. We are all thinking about you.
Hi to everyone else. November is here and already going by way too quickly. Take some time to breathedeeply, look around you, and enjoy life this weekend.
Lynne
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Lynne - how terrifying. You rant all you want! Sending good thoughts to your DH.
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Good morning all and wishing all of us a good week-end!
Loves - wishing you a gentle and speedy recovery. Hope to hear from you soon.
Aurora - I'll bet you can't wait to get home and in your things. And a good home cooked meal!
Lynn, yes rant all you need. Seems like his medical team is very thorough. Praying he gets good results.
Bosco - good to see you - how are you?
Patty and Dune - thinking about you both. Miss you.
Dee - welcome back! Any better?
Impossible to address everyone but sending hugs all around.
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Good morning, dear ladies! On my way for another blood test, this time for my endo.
Carol, all our thoughts are with you, and eager to hear from you.
Sending sweetest wishes for a good and pain-free week-end to Annie, Linda, Terre, Deanna, Bosco, Lynne, Dee, Ellen, AmyQ, Dune, Rachel, and everyone I didn't remember, and our recent new friends, too.
x,
Valerie
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