Bone Mets Thread
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dune. - when are you getting that 2nd opinion ? I can't remember. Hoping the 2nd opinion dr either is s better fit for you or at least makes you more comfortable following your current mo's recommendations. I will agree with you for no terrible feelings this week. Hope you tx is gentler on you this time. So what are they offering you in replace of xanax?
Linda E , Myra, Deanna , rose and all others I missed - hi
Hope faith - stable !!!! Hooray !!! Doing a happy dance for you right now. Can't help with ins question as I have medicare.
Its hot , hot, hot again today. Heat index over 100 for several days and several more to go. The good news is that the pool water warmed up. It feels like bath water , just like I like it.
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It seems hot here too Patty. All I did was brush my teeth and clean the bird cage and I felt faint. I shall have to find out if it is hot or a hot flash. LOL.
No xanax replacement has been discussed. I have to talk to him to find out if he actually has a problem with xanax or if these incidents are flukes due to special handling issues with that class drug. If it turns out he doesn't want to prescribe it, I'll ask my onc. Surely someone has some common sense.
My onc is taking care of hooking me up with Hopkins. I haven't heard any more than that.
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Caryn you are a very strong personality and have a following on these boards which is great. However it is my opinion that when you paint a picture that MBC is a walk in the park that your experience has hardly effected your life in anyway and you are off living the good life, then all these folks come along and join the ra ra chorus because they want to dance with NED forever (who wouldn't). then you hurt the general cause of MBC. Folks read that thread and if that's what they want to believe that MBC is "doable" /chronic and all you need is the right attitude and you can conquer the beast! Then your thread provides all the evidence they need to dismiss MBC misery as simply not true look at this thread things are fine and happy! That is true for such a tiny tiny % of people that it hurts the general cause of everyone else. Even if it is true for you. Look around- it is clearly not true for most.
It's really hard to listen to a cheering section whoes greatest burden is picking a restuarant and cruise and whose life is "perfect" when such misery abounds. MBC is an awful hard ride. Enjoy your good fortune, just don't take the lime light away from the other part of the iceburg - the women under the water not the tip of the iceburg bouncing in the sunshine. Someday when your cancer morphs into what will take you out you will "get it."
So there my opinion is out and will not be erased and I won't be back to the bone thread as my cancer has moved into lung, liver and omentum. Be well as you are able.
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Hi everyone. I am newly diagnosed and am looking forward to reading this thread on a regular basis. I have to admit that I did enjoy hearing from someone with NED who is able to lead a relatively normal life for a while. It gives me a ray of hope when statistics seem so gloomy.
I just began Arimidex treatment a few weeks ago. I will begin Zometa infusions as soon as my dental work is complete. When I had a recent CT scan, it showed that one of my kidneys is not working. Life is full of surprises. I had an appt with a urologist earlier this week. It appears to be a condition that I have had for many, many years. Hopefully, nothing will need to be done. I will hear from the urologist later this week and am hoping for good news.
I wish everyone a good day.
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Welcome 50sgirl. Indeed life is full of surprises. My girlfriend, who had a kidney transplant, told me just the other day that by their 50s, most everyone has lost a lit of kidney function, and we don't even know it.
This is a great group going through a little wobble right now. You will like it here.
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Celeste, welcome! I'm glad you've found us, and I hope Xavo's analogy to family will help you put into perspective what happened here yesterday.
Bosco, Happy 20th Anniversary! That's a biggy! Are you doing something special to celebrate?
HopeFaith, YaY for stable and healing!!! So relieved and happy for you!
Linda, those migraines sound miserable. I'm thinking their increase may have more to do with your meds and maybe even a change in the weather than anything else. Hopefully, that's all it is.
Myra, I actually did ask my UCLA onc about Femara vs. Faslodex (w/Ibrance) after your earlier comments. I will PM you her response.
Dune, I don't know where you got the one year thing, but please don't let it become a self-fulfilling prophecy! Hopefully a second opinion will give you some new direction and more positive thoughts. And that's absolutely ridiculous about your Xanax. Didn't you have to go to your doc's office once before when you had run out or a pain med? No wonder it's hard to be positive with things like that going on. Hope it gets straightened out today.
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HopeFaith, I somehow missed your good news about being stable and healing. I hope to hear those words one day, but for now I will happy dance with you to celebrate your fabulous news.
Deanna I know we can create self-fulfilling prophesies and that I must get that thought out of my head. I truly am working on it. I've started giving myself positive messages as I look in the mirror.
Yeah this xanax thing is crazy-making. I wish I didn't need it. They make it such an aggravation. I look forward to seeing this doctor next week. We need to come to an understanding or I'll have to make other arrangements.
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thanks for the welcome, ladies!
I agree that we all have too much on our plates right now to be upset with each other. We all need to vent and support one another, so lets keep the positive vibes flowing!
Hugs to all
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Dune I've had the same problem. I'd hear that's wonderful that the Xanax working. No we will not refill it for you. If I need Xanax I have to go through a psych doc. But with insurance on again off again that's not happening. Good luck.
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I'm really afraid that I might be the "Cheering section" that RoseValley is referring to.....I'm sorry I wasn't sympathetic in both directions. That was a very harsh last post and I think now "I" will stay away from this thread for a while...
Dune - that is ridiculous that you are having trouble getting the Xanex filled. I may have missed this - but have you talked to your oncologist? Mine prescribes all my meds for me... including Adavan, which I like a lot more than Xanex. I've been on it since the second I was diagnosed Stage IV... they were writing scripts right and left to help me with my anxiety. I take it EVERY NIGHT, and if I don't, I wake up the next day with that horrible anxious feeling in my stomach. So yes, I'd say I am addicted...but I never have any trouble getting it refilled. I think it cost me about 50 cents each time.... I remember when my father in law had colon cancer it was the first thing they prescribed for him, too. So anyway - I completely understand your need for it, and hope you can get it resolved soon.
Xavo - your Italy story is hilarious and so classic.... that's totally the Italian way of life.. VERY relaxed. I think there is even an Italian phrase for it... something like "maybe yes, maybe no"....
Anyway, with that I am going to sign off for a while....
XO
Andrea
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50s girl, welcome! I have learned a lot from the ladies here!
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I wish you wouldn't leave Andrea. I was going to say that this is such a fun and supportive group. Then I realized some ladies are not feeling supported, and that is why you-they are going to stay away for a while. It is a loss for the rest of us. I feel it in my gut - the loss. However, you feel you need to back off, and I support your decision but hope you will come home soon.
My xanax has supposedly been filled. I'll find out after dinner.
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Andi-I can so relate to mixed feeling about people knowing about your diagnosis and running into people who look at you with a questioning look in their eyes. This happens to me all the time. It really upsets me when I was not doing well at first and people would ask me questions in front of my children. I really want them to have a "normal" childhood, one that is not dominated with thoughts of cancer. Now it is 2 1/2 years later so I don't get as many direct questions from people. But I do see that look in their eyes and it is hard because I don't want cancer to be the first thing people think when they look at me. Right now I am doing ok so I look ok. I did change meds to A/A and will have radiation soon to my spine because of progression so I am feeling kind of sensitive and vulnerable right now. I have been pretty open with family and some friends about the med change and radiation, but I am cautious about saying too much to most friends. I have found when people say "how are you" what they really want is some kind of assurance from me that I am doing well. I am hopefully going to be around for a long time to come so I don't want people avoiding me because my situation is too depressing (can you tell this a fear of mine, lol!)
dunesleeper-I take Ativan as needed during the day and I use Xanax at night as needed, which is basically every night. The Ativan seems to be easy to refill, but I have tyo explain to my Dr's office every time I need a refill that I use the Xanax at night. So far they have not ever said no. I think it is entirely appropriate for us to use these meds with our diagnosis, and it makes me mad when I hear patients say that their Dr. is reluctant to prescribe them. Heck, if we don't qualify as needing them then who does?????
I have gone to a Sage IV support group for advanced cancers (not just breast). As breast cancer patients we have many more options than say someone with pancreatic or gallbladder cancer. I think that I wasn't aware of this at first and maybe said something unintentional about the treatment options available for me and how hard it was to choose, but nice to know that they were there. Now I look back and realize that to some of the people that were undergoing chemo as their one and only option my comment may have seemed insensitive and made them feel worse. My point is that at some point in this crazy journey we are all going to have up times and down times. Things might be going great and we are feeling great. Or maybe treatment is failing and we are really depressed. Things people say can make us feel comforted or feel envious. Emotions are just emotions (I have to remind myself all the time) and they come and go. This is a very unique community here and I hope that we can all just take what we need from it and leave the rest behind. Some days I feel like I need inspiration and some days I feel like I would rather have someone to commiserate with. So please, no one leave and no one feel unwanted....this is the internet and written words can't always convey the warmth of the human spirit.
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Hello to everyone, wow so much going on here! I stepped away for a day dealing with a family crisis and was about to come here and talk about it only to see that this thread is having a crisis of its own.
I feel so overwhelmed at the moment and I'm on my tablet so if I go back a few pages I will lose my post and my memory is not with me today, I've had a few sleepless nights. Please I urge anyone who has been posting here not to leave, this is a place of great support, knowledge and comfort. We are a family here, and like any family, sometimes there are squabbles although I must say I have never seen that happen here. Let's put it all behind us and move on.
Welcome to the new ladies on this thread, sorry I can't address you individually. Sorry you have reason to be here but you will find a great deal of support here.
Deanna, sorry about your tm's but praying that it does not mean progression. Sending you my positive thoughts and wishing for you to receive news that there is nothing going on.
I need to go back and read some more, I'm really not retaining much of what I read. Hugs to all, Annie
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Annie, I'm so sorry about the family crisis, and I'm sorry the recent tone here made you re-think sharing your heart about it. Please let me know if I can do anything to help. I hope whatever it is has settled down some, or will soon.
Andi, I will miss your input -- even temporarily -- but we each need to do what is best to nurture and protect our emotional well-being.
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Hi ladies, thank you all for your good wishes. I'm not too worried considering my history of migraines.
Deanna - Yes it could be barometric pressure changes as well.
Hey Bosco - Happy Anniversary!
Dune - Totally ridiculous that go around with your meds! Hopefully, you have your script by now. And get that one year thing out of your head.
Patty - Pretty hot in your neck of the woods. It was cooler here today and what a relief!
50sgirl - Good luck with your urologist appt.
Annie - sorry you're going through a rough patch. If I can help in any way, let me know. Feel free to pour your heart out or pm me if you want.
Starbright - hope A/A is gentle on you with minimal SEs and good luck with your rads. A very good friend of mine learned that his SIL has pancreatic cancer. What a blow. We are fortunate to have different tx options.
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I am fairly new to this whole Cancer thing, so I don't have much to contribute here, but when I was told about my bone mets, I thought it was a death sentence. I am now seeing a psychologist who is trying to convince me there is a good chance I'll still be here in 5 years time.
When I first joined this website I read as much as I could, and saw mostly imminent pain and death, but when I read Caryn's thread, I started to see that not every story is all doom and gloom; that some people have a relatively normal life with this horror; and that some people actually live for quite a while despite the "death sentence" we have been given.
I have no physical symptoms currently, and should be returning to relative normality, but can't get past the "I'm dying" mentality. I have dropped out of this thread a number of times as it is just too depressing for me to cope with at the moment. I am in a very deep pit, and reading more and more about how bad it it down there is not really helping my state of mind. I mean no disrespect of those who are going through awful times, but please don't dismiss those who are not there yet.
I, And many new members to come, NEED to hear from people like Caryn, so we can start to believe there is a glimmer of hope occasionally in this horror show, even if only for a short time. If I can't read some positive outcome stories on here, and only see doom, gloom and imminent death, I will have to leave for the sake of my sanity.
Maybe this thread (at 243 pages) has outlived its usefulness, and we need to start a new thread - Living with bone mets!
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Deanna, thank you for your kind words and offer of support, I may take you up on it. I hope this settles down soon too, I'm very concerned and stressed.
cjanet, I hope your neck and back pain has improved. Have you received any MRI results? Praying for positive news.
Patty, I just loved your pictures, thanks for sharing. Like you said nice to be able to put a face to the names.
50sgirl, welcome and I hope you find great comfort and support here, I know I sure did.
3-16-2011, sorry about your increase in pain. Have you had results to your pet scan? Sending positive thoughts your way.
Momallthetime, thinking of you and Dani and praying you get all the answers you're looking for. She is so lucky to have you watching out for her.
JenLeg, welcome to you as well, hope to see you posting here often.
Linda, hot and humid here too, although today a major cool spell, dh got the roof done without a sweat.
Myra, Hydranne, Karz72, leva, Lynnwood, Xavo, suems, a shout out to all of you!
Dune, how are you feeling and did you get the Xanax? I use ativan when needed and never have a problem getting it, I truly don't understand why they would give you a hard time.
Cenglish62, please join our group, we are a great bunch here.
HopeFaithCourage, yay to stable and the healing lesion in your sternum, so happy for you!
Bosco, Happy 20th anniversary to you and dh! I hope you're having an awesome day.
Andi67, please don't leave, we love having you here and sharing your stories with us. Growing up italian I can tell you how my Mom always said life in Italy was much more relaxed and laid back and wondered why we're always rushing around here. I noticed the difference in lifestyle when I went to England 25 years ago, they truly live for today!
Starbrightlyshines, best of luck with your new treatment and praying the rads help to bring you relief.
Hugs to all, Annie
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Suems,
Please give yourself time to absorb your new reality and be gentle with yourself in the meantime. I know those are just words, easier said than done. I am nearing my 1 year anniversary of discovering I have stage IV cancer, and I can honestly tell you I am finally starting to feel like myself again emotionally. Yes, it has taken me a whole year. Some people are able to adjust more quickly, but guess I am a slow learner. This first year has been rough, but lately I find myself smiling more, laughing more, still crying sometimes, but not nearly as often. So don't give up on yourself or your life. I believe everything is relative in life, and even more so here in cancerland, there will always be someone who has it much better and someone else who has it much worse. Sorry if I am getting preachy, will leave it at that and just offer you a big cyber hug.
Jo
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Annie, please let me know if there is any way I can be of help. Regarding xanax, I should be able to get it Friday. Regarding ativan, it is causing me great distress. I had to take xanax to settle my nerves. LOL. You just can't win sometimes. I'll have a good talk with the doctor next week, and then we will know what is going on. Has anyone had a hyper, faint, nauseous reaction to ativan? It's hard to believe it is in the same family as xanax. See, though. This is another example of how xanax is the only thing that has helped me in all these years.
This thread has NOT outlasted its usefulness -- unless we allow it to. It's been a very active and generally very encouraging thread. We've had a couple ladies do very poorly and we worried about them so much, and they came back with strength and vigor and awesome attitudes. Except when I was too sick, I check this thread a couple of times a day. I look forward to everyone's news. You all have held me up so many times, I can't count. How is that a bad thing? It's not, at least not for me.
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Dune, I fully agree with you, this thread has to go on! I feel like you all are my second family.
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good evening ladies!!
Wow, I had not been on since April when I started IV chemo. I am done with 4 of the 6. I am getting three drugs and it all sucks ass period!!! I just went back and read as many of the posts as I could.
Dune, I agree, Xanax has been the only thing to help with the nerves etc. dr gives it to me like candy now, ha!!
Can I ask what chemo drugs you are getting? I think we may have similar tumor placements. I saw your pic of your node. I have a picture of mine that would blow your mind. I have tumor in left lung, sternum, pectoral muscle then apx 30 lymph nodes.
Since starting chemo the nodes in a cluster in my neck (there were 6) and today I can only feel one. Thrones in my chest I cannot feel at all!!
What I am trying to say is I think this shit is working! One can hope!
Hugs to you all!!
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Kate, it does sound like it is working!!!!! Congratulations. It's important to remember that they do have a lot of treatment possibilities and more and more trials all the time. I'm hoping for a report that says no progression and healing.
I am on gemzar and carboplatin. The nasty nodes do look like they are shrinking like the wicked witch of the West. So, maybe mine is working too. I am starting to look better, despite the slight nausea and light-headedness. I am certainly hoping.
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Dune, you are so sweet, thank you for your offer to help. I am so grateful for all of you here, and yes this thread needs to go on!
KATE1974, welcome back and so glad to hear you feel the chemo is working. And yes we have to have hope for sure. Prayers for you and Dune that your chemos are kicking cancer a**.
Going to sign off for the night, an overwhelming day for me, hugs and love to all of you here, Annie
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Ok gals sitting here in pain mainly in my joints and jaws, I am currently taking xgeva every six weeks and the five minute chemo that escapes my mind as it name at the moment sad huh, today has been a rough day emotionally they give me oxycodone 10 mg every 4 hours however they prescribed 1-2 and have since said take 3 if two do not work yet they only prescribe 120 a month which I usually make do or have extra that was until the Xgeva started back up I am terrified of pain medication to begin with but if I get to the point I am willing to take it I wish it would work but since starting the xgeva it doesnt seem to is there an alternate bone med that doesn;t cause this pain ? I have tried zometa and what ever chemo I am on currently is working as my last pet scan was better so much show they said they cant see it in the liver and that the bones are stable. I am not trying to be a baby as I have been fighting this beast since 08 with it coming back 3 years ago this past october stage four liver lungs and bones they say its gone in lungs and liver and not active in bones whatever that really means , but now my emotions are all over the place and even more good news is my tm's are down like to 67 and I'm told this is great guess I just need some inspiration and information and it didnt help my cancer buddy passed today. any insight you can give me will be much appreciated.
Deb
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Ok gals sitting here in pain mainly in my joints and jaws, I am currently taking xgeva every six weeks and the five minute chemo that escapes my mind as it name at the moment sad huh, today has been a rough day emotionally they give me oxycodone 10 mg every 4 hours however they prescribed 1-2 and have since said take 3 if two do not work yet they only prescribe 120 a month which I usually make do or have extra that was until the Xgeva started back up I am terrified of pain medication to begin with but if I get to the point I am willing to take it I wish it would work but since starting the xgeva it doesnt seem to is there an alternate bone med that doesn;t cause this pain ? I have tried zometa and what ever chemo I am on currently is working as my last pet scan was better so much show they said they cant see it in the liver and that the bones are stable. I am not trying to be a baby as I have been fighting this beast since 08 with it coming back 3 years ago this past october stage four liver lungs and bones they say its gone in lungs and liver and not active in bones whatever that really means , but now my emotions are all over the place and even more good news is my tm's are down like to 67 and I'm told this is great guess I just need some inspiration and information and it didnt help my cancer buddy passed today. any insight you can give me will be much appreciated.
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Deb - So sorry for the loss of your buddy. Very happy for such great results! I am on Aredia which is similar to Zometa since Dec. 2013. I sometimes have aches and pains (flew like) for about 48 hours following infusion. Don't know if this could be an option for you. I tried Oxy but could not tolerate it. I now take Hydromorph contin (long lasting 12 hours) with Dilaudid for breakthrough, and anti-inflammatories. You shouldn't be in so much pain - perhaps discussing other pain meds with your Onc would help or a pain specialist. I'm sorry you're having so much pain, it's hard. I was also reluctant to start those meds, but I finally found the right cocktail.
Best wishes to you.
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Hi Ladies,I have liver meths and last month on the scan bone mets showed. I started Xgeva(no change in the chemo as it keeps my liver mets stable), today was my second Xgeva, but my TM are up with 250 points for 21 days. How much time is needed for Xgeva to do its job? Is this normal? My onc said it's normal - and we have to give a chance to Xgeva to start working. Aghhhh, this is a nightmare. My CA 15-3 is over 1000 now.
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Kiss, to my impression, Xgeva is a bone supporting drug similar with Zometa which is what I am taking. Xgeva is newer than Zometa and works in a different way (Xgeva is an antibody while Zometa is a kind of acid moving calcium in the body to the bones), but both drugs are aimed at reducing bone complications caused by mets. So Xgeva does not directly and especially kill the cancer. Tumor marker monitors the quantity of a kind of protein shredded in blood by cancer cells. In this way, the doctors monitor the effect of the treatment. In your case, it is the effect of the chemo you are taking. I suppose your doctor will consider to change the chemo drug if the tumor marker would not go down (given on the same drug the cancer has progressed to the bones). In any case, one probably should not expect Xgeva to directly kill cancer cells.
Deb, the results are great, happy for you.
All, Good Morning!
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Xavo, thank you!I thought the same thing. But my onc told me that Xgeva not only keeps cancer away, but it heals it (valid for bones only). I don't know if this is true. I will speak with her after 21 days. She don't want to change current medication - I don't know why. She said it keeps liver mets stable so we just have to add Xgeva and it will take care of the bone mets. Obviously it don't want to take care for them.
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