Bone Mets Thread
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Dune
I see that you are getting carboplatin and gezmar. How often do you get these treatments and when did you start on them. Are you triple negative??
I have only had one treatment so far and will go tomorrow for the second one. Thanks for your response. Have you had many side effects.
Rosieo
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Oh, Rachel, what you're going through sounds totally normal, especially if you had surgery in Boston and have had to travel back home from there since your surgery.
Here are a few thoughts on what you asked... Pain meds... as much as you need to keep you comfortable, but not more than the recommended dose. Anxious, shaky and weepy could all be too much pain med, or maybe not the best pain med for you. I would definitely call your local doc and explain and see if they think you might need a different pain med. Morphine causes those exact symptoms for me, while Codeine does not.
Physical therapy. Are you able to use a walker or a cane? If you are having difficulty, then home PT sounds like a good idea, especially if you didn't get much help with that the hospital. But serious PT should probably come (at least it did for me) after you are a lot more healed -- like 3 mos.
Tender ribs. I'm thinking this could be from the surgery itself, as they do tend to roll you around and lean on you, etc. as they're working. As long as your Pet/CT showed no new involvement (YAY!!!), it sounds like bruising that happened during the surgery.
Hang in there!!! The surgery's behind you... you've had a great scan... these other things will heal and improve with time. But do see if they can switch your pain med to help with the emotional stuff. Big (((hugs))) to you, and please continue to let us know how you're doing! Deanna
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Rachel, I agree with Deanna. You had major surgery & they do push & pull you around in there. I do wonder if you're having a reaction to the pain meds. I would call your Dr or ask your pharmacist (not sure if you can do this in the US) It's tough when you've been active & then all of a sudden taking a shower causes you to need to rest. I know, I've been there. There is a lot of healing to be done, but I think your meds need to be looked at. Hang in there! Dee
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Rachel - You're bringing back memories! Ditto on what Deanna and Dee said. It's only been 3 weeks, you need to give yourself some time, I know not fun. What instructions did they give you when you left the hospital? Can you put your weight on the leg with a walker/cane? Did they give you some exercises to do? Be kind and gentle to yourself. My Ortho (whom I love and very optimistic) led me to believe I'd be walking normally after 3 weeks. When I said that to the Ortho nurse, he said don't count on it. Things started improving quite a bit after one month. It will get better, I promise you. Your body needs time to heal. One thing the Ortho nurse told me, was to take pain meds as prescribed and not stop for a while even if there was no pain. This was to avoid having chronic pain in that area. Great news on your scan! Hang in there and let yourself be pampered!
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Hi ladies,
Rachel- wanted to provide some feedback. I do tend to get like this a lot as well, and more than normal for me. I think it's 3 things: 1) I don't want to be sick and I'm angry, sad and in shock I am now terminal 2) The narcotics have side effects of making one weepy, as Deanna said. I used to do therapy w drug addicts. You could tell which ones used heroin bc they would always cry in therapy. 3) The lack of estrogen if you are on an estrogen blocker also causes mood swings and labile emotions. ((Hugs))
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Hello sweet ladies. You guys are so generous. I knew you would come through. YES that is what I was looking for, Linda, i gave the info right then. Thanks Deanna, you know when I mentioned this to the doc he was so impressed that I know this stuff. Yeeh. Tomorrow I will know if that is the place they sent it to. He will let us know then. And tomorrow we will find out how the numbers are, hopefully there is movement for the BETTER!
Deanna, it's def frustrating about the TM's , but a little is a little. When is the next time you have it done?? This new Onco I think will be doing it every 2 wks in the beginning. I actually have to prepare an Excel spreadsheet with the new info, and study it. But I need to concentrate and so much it's been going on, I could not seat and just write it down yet.
Linda - Interestingly, most of the time after the Pet/Ct showed quick progression (which it has been for almost a yr), RO asked for an MRI and got a confirmation of what showed in the other tests. Unbelievable that you can't get Pet/CT in your situation. I had an aunt that lived in Toronto, diabetic, had to have leg amputated and she could not get an MRI there for weeks, she moved to NY with her elderly husband traveling back and forth, so she was able to be closely monitored. With Obamacare is the same here in the States and it will get worse in a lot of places, yes one could keep their doctors, BUT the doctors are getting almost nothing for the visit so they are quitting in droves. And the scans, yes, but wait 3 months. Unless you pay a lot of money and has top of the line Insurance, at least for now. It's great that you are going for more testing. Best wishes.
Lynne, so sorry you had to go through with your Hubby. How is he doing now?? You know my husband heart attack in his early 30's, i thought he needed chicken soup!! Yep i fed him then went to the ER and he was the "show and tell" slim, non smoker, no history, INSANE!! Nothing a quintuple bypass could not solve. (we are lucky!)
Dune, I will be honest with you, our EX Onco, told me when some new progression showed she is not doing any more testing for awhile bcs it's too much radiation,I almost rolled with laughter, Dani has major mets throughout her skeleton from top to bottom, do you think that I (we) are worried of more radiation???Really?? I (we) wanna know asap (reasonably of course), if a tx is working, not waste time and then be surprised. If we could help it, then the heck with norms, yes for "regular ppl" maybe, but advanced stage....At least, I think each person should decide for themselves their risk, I don't like this Guard worrying unnecessarily about those issues.
AmyQ, reading what you posted, only endorses the insensitivity of people that their biggest problem is their nail color. Because they are not in a certain situation, they conveniently forget what the other person could be going through. I had that so many times, I was willing to let it go for my daughter's sake, but now when I think back, how many times Onco told me that she should get her affairs in order, or that we are being to rushed with decisions, when I had to point out to her the results from the reports, it sickens me.Best wishes.
Dee good for you. Love your drive. Dani can't pick up heavy stuff, due to the status on the whole, but I am sure you know when it's enough. My daughter just says NO, and ppl don't even know about her situation, so the gossip starts, but she says if it's a family affair and i don't mind, then she is good. And i learned not to mind, and I just say she could not make it. Also, that is one of the BIG reasons we didn't tell ppl, it's too complicated to explain ALL that is going on all the time. And I actually understand that it's hard to grasp when you are not privy to the details.
Lindalou - way to go, love it with the coffee. And the free coffee, they call that showing the "C" card, you are going through hell, so why not take advantage of it??
Cristina so happy, you had a good time with the family. That's what is all about!!
I guess I shall try to tackle the computer more often, you guys give me a run for the money!
Hugs to all,
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Hi all,
Hope to be able to address everyone more later, but wanted to pop in for Rachel. I had the same done. And everything hurt. I was on two elbow crutches and in physical therapy almost immediately (as soon as the stitches are out). You must get physical therapy ASAP. I got down to one crutch in late April and had my surgery in mid February. Got to a cane in late May. Very easy to overdo it once you start feeling better. My ribs, butt, arm,....everything hurt. They do roll you around and manhandle you. And they pound the rod in; they're not gentle. So it's normal to have pain from that.
I was on tramadol which makes me a bit nauseated. I was down to ibupropen during the day and tramadol at night to help me sleep about a month out. By two months, just ibupropen.
So, what you're feeling is normal. It's also a very new diagnosis for you, so between major surgery, pain meds, feeling helpless because you're "crippled", etc., of course you're crying. I cried a lot. That said, the above advice about checking on different pain meds is good, and also maybe see if you need something for depression. I think most (if not all) of us are on something for depression.
Sending hugs to all,
Terre
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momallthetime and others who are frustrated with on-going drug resistance... I posted this very interesting new research elsewhere on BCO today, but I thought it would be worth reposting here for you. http://cancer.osu.edu/news-and-media/news/studies-...
momallthetime, I'm surprised about the need to create an Excel spreadsheet. Don't your docs have that available on-line? Even my local onc's office, which is far from techy, posts lab results chronologically on-line, and if you click on any one of them, it charts that specific reading for you. Of course, some of the problem might be that you've changed oncs and you need to reconstruct it if it wasn't on-line, but I hate to think of you dealing with that kind of stuff instead of spending time with Dani or doing something nice for yourself!
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Hey Deanna I am here, wow i checked it over quick, gotta get my Masters to understand that. But I will try again tomorrow with a clearer head. I work best early in the AM. She does get steroids, so what are they saying exactly...So they should find if and what are the tumor surpressor genes? I gotta study it. Do you understand it?
And re-Excel, no, what I get is just copies of the BT, so the best way was setting it up on the spreadsheet with the blood test horizontal and the dates vertical. And even in the big Cancer Center I was able to retrieve it from the Portal, but they never had it the way you got it. It sounds sophisticated. Very interesting. they did have it for Vitals, I wonder why they didn't do it for the whole thing.
You coming along?
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Thank you, Deanna. I researched on-line access and did find that my hospital does offer it. There were directions about opening an account, but I must wait till morning to look into it. Very glad to know about this. ~ Valerie
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Hello all you wonderful ladies! I have been reading a lot and posting very little. I feel as if I haven't enough knowledge to do any one any good. It has been two months today, since I noticed a lump. Life has changed so much in a matter of weeks. I am so hopeful for all of us one second, and scared out of my mind the next. I guess that will never stop. I have wide spread bone mets, but feel pain only in the pelvic and femurs. It seems that many of you have broken a femur, or have had surgery. Do the bones break due to a fall? Or does it happen as your standing at the sink doing dishes? I don't want to go around feeling like I'm made of glass, but should I? I feel pretty normal when I take the pain meds. Makes me want to tear a room apart and paint it, the way I used to do. Im soon thankful for the pain relief, but don't want to hurt myself. Any wise words for me
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Rachel I have no wisdom, but want to send hugs and positive thoughts your way.
Cjanet I did like your input, it does help me to understand my not so infrequent weepiness.
Amy so sorry for you frustration. Your doctor seems unreasonable to me, as my MO schedules you with in 24 hours of a scan and when he cant I have met with Arnp.
So my. bummer news is pain in hip showed up as progression on. mri. Pet scan being scheduled.I have had this pain through at least one pet scan and it was clear in July. So I dont understand. Unless pain preceeds scanable bone change.
So plan for radiation. to manage pain then change io sytemic tx.
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Thank you all for posting. I'll be reading over everything with a fine tooth comb. Started off with a really horrendous day and realized I'd consumed very few calories and definitely anemic. My husband came home bringing sushi and it helped a lot. The pain killers and drugs are a double edge sword. I think they are not helping emotionally. I can see how folks get addicted to pain killers. Ironically I do not have a primary care doctor, but think I really need someone to oversee all these meds and just to have someone to call. Thank you all for being a sounding board and helping to rescue me. Xo a Rachel
ChelleG-I don't know how I fractured the femur. The hip was weakened and then further weakened from rads and doc. Thinks I was putting too much stress on it.
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Hello all! It's been a long day & I finally have a chance to sit down & read up.
3-16, my pain certainly increased before progression. I can tell you that rads really helps with the pain.
ChelleG, I don't have any words of wisdom for you, I've not had a fracture. Good luck in getting it figured out,
I got my results of my CT & my back & hip tumors are stable. It actually said "stable" in the report. Boy I was really happy to see those words on paper. Fingers crossed on how long it will last, but I was beginning to think I would never see those words written about me.
Take care everyone, hope you have a good night, Cheers, Dee
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ChelleG I know what you mean I read through the posts and think wow I know nothing about cancer so I feel like I can't really contribute other than to lament on my terrible position and I don't want to do that because there are so many that are in worse shape. Which is scary because I think is this where I'm heading then I get really upset. I was diagnosed in June so still pretty fresh but I'm becoming more proactive and now I'm learning all I can about my enemy. Breaking apart at the sink or farmers market isn't really something anyone wants. This is all such a nightmare. I posted on Facebook today that I'm stage four some friends knew others are pretty upset. I felt like they were all saying goodbye. The stigma with stage four is another thing that's hard to deal with. This is a very wise group of woman and I believe that the strength we gain here with each other is priceless along with some great advice and information.
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Dee that's great ..stable is a beautiful word.
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Dee, hooray for STABLE!!!!! Hugs
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Wendy, I feel exactly the same! I posted on my face book, not too long ago. The same reaction. It puts me into that dark mood, that I don't want to be in. Trying to stay positive is difficult, even without all of the pity! You ladies are so strong, I just can't imagine how I would get through this without all of you!!!
Hugs to all!! Chelle
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Dee,
So happy to hear of your stable scans. May you stay stable for a very long time.
Terri
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Hooray for stable, Dee! So happy for you!
Chelle and Wendy - it does get easier with time, at least on an emotional level. I had the same; people who I've begged to come to NZ to visit for years suddenly wanting to turn up before I die. Made me mad. Wasn't worth a visit when I was well, but now that I'm "dying", I'm worth a visit. Figured out that the visit wasn't for me - it was to make them feel better about themselves. And that really irked me. Took me about six months to get over that. The sympathy makes people feel better about themselves, so try to put that into perspective. Most people don't know how to react. And they're freaked out and upset. And they will say really stupid stuff to you. Just be ready for it and remember it's their perspective and their issues showing; you don't have to make it yours.
The only slight wisdom I can give is to remember that worrying about what may come, or is to come, won't improve the outcome. That's easier said than done; we all have dark times. But just ask yourself - is being upset right now about progression in x amount of time going to mean the progression won't happen? How is it useful? Is it going to extend your life (if you're worrying about the future)? It's really hard to find that balance of being pragmatic and realistic about things (yes, I know how this is likely to end), but still being optimistic (a cure could come along at any time) and remembering to treasure each day we have. Don't mean to preach to the choir (or anyone else), but these are the mental "tricks" I use on myself when I get freaked out. It's taken a lot of work and practice to get me to an ok emotional state (i.e. I don't cry or freak out all the time). But you'll get there. You're stronger than you think.
Sending hugs to all,
Terre
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Terre, you are so right, I know you are. I should memorize your post, and recite it when I feel myself slipping into that dark scary place. Thank you so much for sharing your wisdom!
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You're welcome Chelle. It's information/wisdom that was passed along to me, so my hope is that it will help others as much as it helped me.
Sending big hugs and happy thoughts.
Terre
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Terre, I feel like you nailed it in your post, especially about people!! Since being diagnosed stage 4, seems like all of a sudden people I hardly know are sending me friend requests on facebook...why? I won't even get into the stupid things they say cause we have all probably heard them. I do not engage and like you said, it's their issue not mine
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Dee....stable!!! Fantastic! I'm so happy for you.
Deanna, Thanks for posting the research. Interesting about Dexamethasone. How is your tooth? The pain in my leg is better.
Chelle and Wendy, It is difficult to wrap your head around all of this. Some people will make stupid remarks and others may pull away. Try to brush off the remarks that are hurtful or ignorant, and hold on to the ones that are positive and help you. I had a very close friend who was supportive until I was stage IV, then she literally backed out of my life. I never posted on Facebook to avoid comments. Remember we are all here for you and we all understand. We welcome your input here and love getting to know you.
Can we all meet for coffee? Wouldn't that be great?
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Hi, has anyone heard from Romansma? Just wondering how she is feeling.....
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Lindalou your on for coffee I would love to meet you all in the real.. Yes I think a lot of what I'm hearing lately is to make everyone else feel better about this. I have to think they mean well...
Terre again thank you your words are a calming balm on my heart. I'm finding more and more that you ladies are the only ones who get it. How are your visitors doing? Spring must be in full swing down there?
ChelleG. So we got this right? From now on only good days positive vibes and happiness. We won't let anyone determine our frame of mind but ourselves (which is hard enough) my new mantra. Hope is my favorite word right now and we have tons of that.
Hugs to each and everyone of you ladies.
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Dee, cheers to stable!!! Congraltuations.
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Chelle and Wendy, listen to these women! Terre hit it right on the head. This is the time in your life to add positive, special people and cherish them and discard people in your life that cause you sadness and stress. I know people say "they mean well", then they must think before they speak. I have kept my dx to a small group of friends who love me, support me and who do not suffocate me and treat me like I haven't changed just may need support mentally and physically from time to time.
Lindalou, I had a BF for 25 years who just jumped ship and ran like I had a serious case of cooties. Just have to get thru that and move on. So hard and heartbreaking, but something else I got thru.
Dee, congrats on stable!
I too am looking for Hope. I hope she is doing well.
Love and hugs to all. Myra.
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Good morning all,
Chelle and Wendy - please always feel free to come on these boards. Terre and Myra gave some very good advice - thank you both I kind of had to read that today. I need to be reminded once in a while. Chelle you questioned fractures. Very damaged bones by mets can fracture. It can happen when you fall or not. My femur was not fractured when I had the rod inserted but Ortho told me it was a matter of days until it would. Regular scanning or other imaging will tell the story. But any new or worse pain that lasts for more than 2 to 3 weeks should be investigated.
3-16-11 - Crap on your hip progression. Do you know what your next tx will be? and good luck with rads. I'm sorry to hear this but perhaps the scan will show it's arthritis?
Dee - So happy for you! Congratulations on stable!
I'm also worried about Romansma - she hasn't checked in on the androgen receptors thread in a while.
Xavo - I miss you, haven't seen you in a while - I hope everything is fine with you.
Aurora - still thinking of you and prayers coming your way as you approach your surgery next week.
Mommal - you're more than welcome. I hope it helps.
Coffee with everyone would be so great! Lindalou - how's your butt and sciatica?
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Morning ladies,
I stayed in a bit today cuddling with my 3 year old in bed, while he took his time waking up. I treasure those moments. It's a beautiful day outside today, I enjoyed my drive to work.
Dee- I'm so happy to hear the words "stable."
3-16- I'm sorry about the progression; hopefully radiation and a new treatment will stop that immediately. You also need some pain relief. Feel better.
Deanna- thanks for the article. So what's the alternative to dexamethasone to help ease chemo symptoms if that's only going to make cancer grow? And how do I discuss this with my onc? Just print out the article?
Terre and Myra- thanks for your words of wisdom. It really helps to hear coming from more experienced ladies like yourselves. I'm new to all of this and still working on who's my friend and who isn't.
Everyone have a wonderful and low pain day!
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