Bone Mets Thread
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Hi all,
Hmm, so many beautiful pictures. Thank you all for sharing.
Bluefrog - a warm welcome to you but sorry for the reasons that bring you here. You certainly had a good Ortho - that's great. Hope you're feeling better and best wishes with your tx.
Deanna - Ouch, sorry you're in so much pain. It certainly takes us to dark places - I know I sound like a broken record, but since I have the right cocktail of pain meds, my life has changed, really. And when I will need more, I will not hesitate to increase or change the meds. Praying you get better.
Another grandma to be! Congrats NYC!
Yeah, summer is leaving, but Terre is looking forward to her summer down there I'm sure! Daylight is getting shorter and shorter...
Dune, can't wait to hear from your second opinion. I haven't had chemo and my brain is often out of whack...
Sending you all hugs
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Lindalou, beautiful photo of you and your hubby! I actually teared up when I saw it -- because it's just seems so unfair and almost illogical that you can look so beautiful in spite of what you're dealing with -- and also b'cuz you remind me very much of my best friend from high school.
And Myra, little Mallory is so precious! I'm sorry your body suffered after that long drive, but that's a good lesson and clearly something we all need to consider when planning trips. And thanks for the info on 100 vs. 125 Ibrance. I'm anxious to see where my counts will be on Sept. 2. In the mean time, Cigna's Specialty Pharmacy is already trying to process my next RX. I guess I'll call them back and ask them what happens if I find out in a week or two that I need to cut back to 100.
Happy Anniversary, NYChutzpah! And so excited for your grandchild's arrival, too! And thanks for sharing the beautiful harbor photo.
jobur, I didn't ask about antacids, but my UCLA onc did ask me not to take anything to boost my blood counts. She said the low counts are all part of the process, and they will rebound on their own. Of course, this is just my first month, and I'm thinking she wants to see an unadulterated reaction to Ibrance, since UCLA is very into integrative medicine and actually has a supplement shop for cancer patients.
On a brighter note, I have now gone for two days without pain meds, and my tummy issues are so much better. I still have some pain -- especially after getting out yesterday for the first time in several days to do some much needed grocery shopping. But each morning seems a bit better, so I just have to be careful not to overdo things because it does escalate after lifting grocery bags and standing in the kitchen cooking dinner, as I did last night.
Dune, good luck on your second opinion!
txmom, thanks for the reminder about chia seeds. I have some on hand and will whip up some pudding today.
3-16-2011, you mentioned not wanting another scan, which is why I dragged things out -- not believing things would have changed that much in 3 or 4 mos. But when was your last one? My hubby says he will never allow me to do that again -- that in the future they just need to ask him how I'm doing for an accurate assessment!
And someone mentioned higher TMs above and I can't find it now -- sorry! Just wondering who that was and how much they've increased?
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Dear new friends, thank you so much for the beautiful and heartfelt welcomes. I feel that I've come home. I had my CAT Scan and Nuclear Bone scans on Friday. I have an appointment with my oncologist for Friday morning, at 10:40 am. Yes, I wasn't going to say anything, but...I did obtain the images and text results on my own yesterday from the hospital. I glanced quickly because, well, the results do not look good. So, I'm trying to not think about it, not at all. My plan was to not mention that I have the results, and let my oncologist talk to me. But, is that the right thing to do? As I am a question person, I'm wondering if I should read more in depth and have questions ready. But I just can't bear to look at the reports again.
Dear Rachel, I will be very happy to give you, and anyone else in our area who may be interested, the name of my oncologist. I will private message you. You were right about scans. The waiting, now that I've had the tests, to talk with my onc is torturous. Thank you for lifting me in light (what a very lovely concept) and your prayers. xo
Dear Annie, your positive thoughts were so very appreciated when I had my scans. Thank you! I will definitely let you and all know what I learn from the results this coming Friday morning. I know I must be brave, and I will be, but every time I think about what the ramifications of the test results could be, I feel the tears well up. Yes, those are purple cone flowers in my garden! A friend gave me one cone flower plant from her garden when I was first diagnosed, 11 years ago. And look at them now!
Dear gaia, thank you for your kind sweet words. I can relate to your all-night restlessness and churning thoughts about starting treatments. I, too, let fear of SE's prevent me from taking action right away. Good luck with Tamoxifen--have you started it yet?
Dear Lynnwood, thank you for your lovely welcome and optimistic words, they are very helpful. Your onc sounds so positive, as is mine. I love what she said, makes me feel confident. I, too, have multiple mets, in all the areas you do, including skull. It's very enlightening to know treatment works on all areas, not just a couple. I will be starting Xgeva after a 3-week dental procedure healing. Could you share your experience with it? How intense is the shot, and have you had any side effects from it?
Dear Xavo, We are NE neighbors! Your words have allayed some of my worst fears. Yes, I am ER positive and my mets so far are bone only, and I will definitely focus on my treatments. I will find out more after my onc visit this Friday.
Dear txmom, I will get the book Radical Remission, and I will not be discouraged. I wish I had arrived here on this site a lot sooner. Thank you for your sweet encouragement.
Dear cjanet, you are right about the attitudes of our doctors. Tolstoy wrote about the importance of the weight of words. I hope you have absolute delight at the beach.
Dear Lynn, thank you for the happy welcome, and all the wonderful support. I gladly and appreciatively welcome it. May I ask how Arimidex is treating you? I have been scared, quite frankly, of side effects. I am on my first week, and all is very well, so far. Did I read that you live in NH? Then, we are NE neighbors, too! Well, since I posted my pic, my cone flowers are also starting to fade a little. I plan to leave them in place for the winter garden--they look like sculpture, and birds love the seeds.
Dear Linda, thank you for welcoming me, and yes, I am very happy to be in such wonderful company.
Dear Terre, thank you for your warm welcome. I promise you, I will NOT listen or even remember the words from the DF guy! And, I didn't know about that--Stage IV bone mets are on the cusp of being classified as a manageable condition. Thank you for telling me! And, how I love your sheep at the window! Especially since I am a knitter! I will think of your visitor each time I use my "sheep" mug, always used when sipping tea while knitting.
Dear dunesleeper, so happy to receive your sweet hello--thank you, and a big hi to you and glad to meet! Happy for your test results.
Dear LindaE54, thank you for your warm welcome. I love having found this great and wonderful place, and already, it is a lifeline for me, too.
Dear jobur, thank you for your sweet welcome. I'm listening carefully to your advice, and I'm going to focus on "it really will get better." And yes, I no longer feel alone.
Sending much love to everyone and keeping you in my thoughts. I look forward to getting to know you all more and more as I read.
xo,
Valerie
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Valerie, I may have overlooked welcoming you earlier, but I just looked back at your previous posts, and see that you are the one who also crossed paths with what sounds like a horrible onc @ DF, and I remember thinking at the time I was so glad you could totally relate to Rachel's upsetting experience -- not glad that it happened to you, but glad that you could in a way reassure her that his behavior was totally out of line and uncalled for.
As far as whether to read your scan results more in depth before Friday, I wouldn't. You'll have plenty of time to do that later, if you feel the need. For now, I would let your onc set the tone, because what may have looked bad to you, may not be as bad as you think. Others may feel differently, but I would probably wait until you're on a tx that's working well and you don't feel quite so vulnerable.
Hugs, and I'll be thinking about you on Friday morning. Deanna
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Valerie - Good luck with your appt on Friday! I presume those are your first scans at stage 4? Knowing myself, I would read them - easy to say now that I am no longer a "novice" at all this. I'm not sure it would have been a good idea for the first results. What ever you decide, we are here for you. Good to hear you're doing well so far on Arimidex. I will be with you in spirit on Friday morning and sending you good vibes.
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Valerie, regarding Xgeva, I have had 5 injections so far. No side effects for me at all. The injection is quick, just into the skin, not the muscle. Only one time did I feel some burning when the injection went in. It has really helped the throbbing ache that I had in my left arm which started this whole thing. Good luck with your appointment. I have access to a verbal report of my scans, so I basically know what the results are, but I have never told my onc this. I let her set the tone and go over them with me. I always ask for a copy of everything, scans, labs, etc
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Lindalou, what a great photo of you and your DH. Thanks for sharing.
Lynnwood, try getting your xgeva shot in the belly. There's very few nerve endings there, or so I'm told, so I don't feel a thing. I did have to be talked into it by the nurse but easy peasy. If you're up for trying something different one of these times, I'm sure you'll be surprised.
Valerie, welcome but I'm terribly sorry you have to be here. I'd write down all the questions you can think of based on what you know. I'd also bring someone to your appointment Friday as an extra set of ears. Jot notes or have that person jot notes while you try to take it all in. As soon as you have a plan with your onc, I think you'll feel better. Just know that you are in good company on these boards. Hugs to you.
Amy
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Hi jobur. I'm doing our 40th. The food is really good in this place, although it isn't fancy. Their food is very popular and I chose 4 entrees for them to choose from, a vegetable medley, and assorted pies for dessert. It is a sit down and be served event, but it is a luncheon. We're charging $60. I did something wrong with the math and that's the figure I got. The other girls went through it and got about half that amount. I wanted to lower the price but they didn't. If we get a good turnout we'll have a good donation for the school, and the class of 75 is not known for their donations. So anyway, I'm trying to make it seem more upscale or fun. I'm doing a 70s theme, but I keep thinking of more complicated ideas. I have limited creative skill. I don't know. Should I keep it more simple or go with something more impressive?
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I like the guy at Hopkins and will keep his business card for when I get the inevitable news that we need to use a different tool to change a treatment
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Valerie, Woa, you gave me a flashback to reading my first scan report and that sick sinking feeling. The radiologist listed my mets a few at a time, like there's T7 and T8, and T10 and 12, oh yeah and L1 and L3, etc. etc. I remember thinking it might have been easier if he just listed the vertebrae that didn't have mets instead! But please know that just as people don't die from cancer in the breast, they also don't die from bone mets, even if there are a lot of them. And successful treatment can make that radiologist's report much shorter!
I think when you see your onc it is good to go with a list of questions. There is a lot to learn about mbc and knowledge is power. So I always let my mo talk first and listen to what she has to say, then go to any questions I have that weren't answered. Do you have someone who can go with you to your appointment? It helps to have a second pair of ears.
AmyQ, I'm sorry I've never said hi to you before, and we are almost neighbors! I grew up in Minneapolis. Do you live in "the cities" as we so quaintly call it here in the sticks? I got my 1st couple Xgeva shots in my belly, but I prefer the back of the arm, maybe just out of silly modesty. It is the one tx that seems to have zero side effects. Hope you're enjoying these late summer days.
Sueann, Thanks for the info on antacids. How is tamoxifin treating you? Interesting order to your tx's. did you get a couple of years out of Fas/Ibrance?
Dune, I'm afraid your asking the wrong girl here, I'm not much of a party planner. Thank goodness there are people like you willing to take on the job! That being said, I would keep it simple. And a 70's theme sounds perfect, 40 year flashback!
Looks like I'm having lots of flashbacks tonight, usually only have hot flashes, lol.
Hope everyone has a restful night.
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I don't think anyone in my family understand what stage 4 means. I have a lot of pain. A lot. So I take my pain meds and try to have a good attitude with the break through pain. My 18 year old son doesn't understand why I need to sleep or the anti depressants he implies it's a crock and that I've given up. I lie all time because I don't want Anyone sad. Yet i do complain alot too. My mom refuses to believe cancer will kill me. I feel pushed pressured to be "healthy". .My husband and my mom are wonderful I know I'm complaining
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Jobur - LOL on flashbacks vs hot flashes!
HopeFaith - I hear you. They don't all get it. Sorry you're in so much pain. I've had numerous comments regarding pain meds and anti-depressants or anti-anxiety meds. The truth is, I can't do it without that chemistry and now I don't care what anybody says about it. Only you know what you need. And this is the only place where I feel validated and understood.
Valerie - I echo what others have said to have someone accompany you. I remember my first appts, my head was spinning and was so happy to have my sister and BF come along.
Deanna - so glad to hear you're feeling better!
Dune - good to hear you had a good visit at Hopkins. And WOW on organizing such an event.
Today is blood work, then lunch with a girlfriend and cleaning lady day! I love those days.
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HopeFaithCo, We all understand exactly what you are going through. I hear what you are saying about some people not getting it and yes it can be exhausting to keep up a good front. Have you seen Holley Kitchen's video on breast metastasis? I have sent it to some of my friends who still don't understand and it helped them a little. You can find it on this site on the home page. It may be a tool for your son and family. Also, if you feel comfortable with your onc or nurse they may also help explain ( or re-explain?) stage 4 to your family if they came with you on an appt. Sometimes that face to face with a medical professional makes a difference. Continue to take what you need to feel better. What treatment are you on?
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Thank you ladies! Currently I'm not on any treatment except xgeva shots. I'm spars to get scans every two months. I should have insurance by Sept. And maybe start something else. The pain is spreading and my arms hurt almost all the time so I wonder v what the next scan will find. I today to ask for help picking insurance plan. I cant readily see the differences in some of the plans. I'll have either community care or Blue Cross Blue Shield. Love to all. Please forgive me not addressing everyone individually.
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Jobur I was in the study a total of 19months and I have to say I found Ibrance/Faslodex easier than Tamoxifen. I was surprised when my oncologist put me on Tamoxifen (I went for two 2nd opinions just to be sure) and everyone agreed with it. I do get severe skull and neck pain that started when I was in the study - no one knows what is causing it. My guess is its mets and its just not showing up on scans, also the usual breakthrough nausea, joint pain etc.
LindaE54 I notice that you are from Quebec. Where do you live? I was born and raised in Montreal and met my husband at McGill University. I do miss it, especially the fall season which is my favorite time of the year!
HopeFaithCourage I agree with LindaLou about talking to a nurse or oncologist. My son spoke with my oncologist and it did help.
I hope everyone has a wonderful, pain free day!
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SusanAnn - I live in St-Sauveur, in the Laurentians. I worked in Montreal for some 30 years and my sister worked at McGill for about 20 years. Small world. Fall is exceptionally beautiful here, especially in the Laurentians. I found Tamoxifen much harder than Femara.
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HopeFaithCourage, how long have you had to go without tx?! (I know you must have shared details in your past posts, but this thread is so long and busy, I wonder if you'd mind recap'ing your situation again.) I am upset to think of anyone going without tx, and wonder if we can do anything to help you. Most pharmaceutical companies have programs in place to help those without insurance. It just seems ridiculous that you are suffering and not on any meds! Are you absolutely sure you will have coverage in September?
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Hello sisters. I don't usually post on this thread but I do have a question I think only you can answer. I have a few bone mets.. Not a lot. I've been stage 4 for 4 years (NED for 3, but not currently). My ONC tells me I shouldn't worry about spread to other organs. He said because the cancer hasn't spread to any other organs besides bone in the last 4 years, that it most likely will not. If it was going to spread elsewhere it would have done it by now.
I feel like that can't be right. Will you please share if you had bone mets for a long time that eventually did spread to other organs? I appreciate optimism, but I prefer to be realistic about it.
Thanks so much.
Stefanie
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Hopefaithcourage, Regarding insurance choices, I always look for maximum out of pocket first. This is the maximum you will have to pay for the year. Living with mbc, it is likely you will meet that in the first few months. Then look at deductible which is what you will pay before insurance pays anything. Once your deductible is satisfied, insurance will pay a percentage, you will pay the rest. This is called coinsurance and varies widely with the plan. Some plans also have copays (usually $25 to $35), meaning you pay a set amount every time you visit a doctor, regardless of deductible.
Hope this helps you sort it out. And I apologize if you are already familiar with the terminology, I don't mean to be condescending, just thought if you had not had insurance previously this might all be new to you and is rather confusing.
I have also had family members tell my medical care is a crock. They are not in our shoes. Hope you are able to get treatment very soon. Big, gentle hugs to you!
LindaE, Sound like a good day! Enjoy!!
Stefajoy, I don't have any personal experience, but my mo has told me you don't die from bone mets. So if bc never progressed past bone to other organs we should all live to a ripe old age. Sorry, don't think so. I wonder why your mo would tell you this? Maybe he just means in the near future? Have your ever read the oligometastatic thread? Maybe he is a believer in this type of mets and sees you in this light. In any case, here's to 4 more years. And 4 more after that...
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Steph, unfortunately, I don't think mbc is that predictable -- that if it hasn't moved in 4 years, it won't. But perhaps that's been an observation with his patients -- that if their mets is going to metastasize to liver or lung, it usually does it much more quickly. That would be very hopeful then to reach 4 years with bone only mets.
I would also like to believe that we could be treated forever if we have bone mets only, but unless one or more meds work an exceptionally long time, at some point I would think even we can run out of tx options or possibly face organ damage from years of meds that could make it difficult to continue on them. But certainly many women do live a very long time with bone mets, in which time research will hopefully come up with some new and better tx options.
It looks like Patty hasn't posted since 8/19 and hasn't logged on since 8/21. Does anyone have more of an update on her? Did I miss her possibly saying she'd be off for a bit with kids heading back to school, or should we be concerned? I remember she was starting Faslodex and I think Ibrance, too. Anyone know anything?
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No Deanna, I don't know what happened to Patty. She was having such a good time with her boys, and then, bam, she vanished. I am concerned. Do you think we should use the contact information list?
Jobur, I hope you enjoy your flashbacks better than your hot flashes. Of course, memories of reading scans leave a whole lot to be desired as far as flashbacks go.
HopeFaith, I think my mother finally "got it" when this Hopkins doctor told her there is no cure with metastases. He talked about the whack a mole concept and he talked about the change in our dna and how the dna in each of the places the breast cancer grows is slightly different. So now she finally understands that treatment is forever, or as long as I can take it. Same thing. She kept wanting to know how many treatments I had left, and I kept explaining that treatment has no end date because the mets will never go away. However, I'd be grateful for NED that Caryn and Terre have achieved. I hope you have that forever. What a coup that would be.
I have definitely not put on a show this week. It's never been like this. I started feeling nauseous Monday evening, the evening of my treatment. I was nauseous plus had that all-over pain thing I get Tuesday. I was still nauseous Wednesday; and nauseous in Baltimore City sucks. Hell! Baltimore City sucks. lol. Today: still feel nauseous. I have to feel better tomorrow and be able to go to the MD State Fair with a girlfriend who is coming down this way from Hagerstown, a long drive. I started getting the sense that I needed to put more into my friendships, and I will need to drive to Hagerstown soon. Her granddaughter turns 2 and a new baby is expected. I'm surprised she expects me to make the drive. It's very painful and exhausting; however, I have to try a little harder. Bobbie has been quite a good friend to me through this whole thing.
Stefajoy, mine progressed pretty fast from bone and lymph nodes, then a little in the lung, then some in the liver. So far my brain seems ok, although that Hopkins doctor noticed that my left pupil is much larger than my right. I've already had my brain checked twice, so I'm not wanting another one for a while.0 -
Hello to all,
HopeFaithCourage, I can totally relate to your post. Some people just don't get it, maybe it's a coping mechanism. Dh tells me all the time, you can win this battle, if anyone can do it you can, and although I appreciate his cheering optimism I am realistic but he refuses to hear it. I hope you're able to get treatment started soon and prayers for your pain to go away.
Linda, I hope you had a good day today and all went well with your blood work. How was lunch with your friend?
Stefajoy, the longer mets stay confined to the bones the better but I don't think there is a guarantee that if you've gone so many years it will not spread to the organs. I would love to believe that but I met a woman at the cancer centre who dealt with bone only for 6 years and now she has liver and brain mets. I don't want to be a downer, just giving you an honest answer based on her experience. I'm meeting with her tomorrow, she has a chemo infusion at the same time I get my pamidronate. She has made me feel very hopeful though, as she continues to do well in spite of this progression.
Deanna, I'm wishing we would hear from Patty too. It could be she's busy with the boys going back to school.
Hello to Jobur, Dunesleeper, SusanAnn, Lindalou, Lynnwood, AmyQ, Xavo, Kendrasue, Myra and NYCchutzpah and everyone else here.
Hugs to all and to all a good night or good morning, Annie
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Dune, it took me forever to write my post with all the interruptions I've had and just noticed yours. I'm so sorry that you've been feeling so nauseous, I'm praying that tomorrow is a better day so that you're able to go to the fair. Sending you hugs and healing energy. Baltimore City sucks, lol you always make me laugh!
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I pm'ed with patty on the 18th. She was starting ibracine the following day. Hope I spelled that right...but that is the last I heard. Lots going on, that's for sure
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Good morning all,
Stefajoy - I would love to believe what your Onc said but don't think it's realistic. Does he have studies as a source to say that or perhaps some of his personal experience?
Annie, yes I had a nice lunch and spent the afternoon together. This very dear girlfriend of mine has Parkinsons disease for the past 7 years. She's truly an inspiration to me. Her disease progressed but still able to drive and being autonomous. She certainly works hard at it as in regular specific exercises, osteophath, naturopath, along with her medication. She recently had surgery on both eyes to avoid wearing glasses and lenses. She says she's preparing for her old age because putting in her lenses is getting more difficult with her shaking hands with a good dose of humour. Just love her and her hubby. We are planning to celebrate our birthdays, her husband is 2 Sept and 1 Sept for me. We always do something every year but this one will be quite more simple as in ordering pizza on the pontoon. He's going to be 79 (and what a handsome man) she is 67, so always a spring chicken with him LOL. I will turn 56 and cannot tell you how I love getting older now. Good luck with your infusion.
Dune, I wish I had a magic bullet to take away your nausea. That was quite an eye opener for your mother.
I too am worried about Patty but with school starting she must be quite busy with the kids.
I hope Carla is still doing well, please check in if your read this Carla.
Wishing you all a good Friday and sending hugs to all of you.
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Good morning ladies, just got home and may have to leave again T.S. Erika seems to be making a summertime vacation in Florida. Since we live on the beach it is a very good chance we will be evacuated. Time to start looking for a place to crash for a few days....UGH! not in the mood.........
Dune, glad you had your second opinion. Did he agree with your tx? Would you please PM me with his name?
May be MIA again, stay happy all and we will stay safe. Myra
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Mia - Take good care of yourself and hoping that if you have to evacuate, you have a good place to crash. Thinking of you.
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Stefajoy: I have had bone mets for nine years. I had luck with hormone meds, each one helping for about two years. I suffered the most with the target med, Afinitor and was only on it for 3 months. I then went to MDAnderson two years ago for a second opinion which my oncologist was all in favor of. They felt the chemo pill, Xeloda, would help. I was surprised when I returned when my doctor said I should take a chemo break after talking to the Anderson doctor. I think the plan was maybe for six or eight months. Month 7 or 8 I had arm pain and the bone met at C4 was pressing against a nerve so I had that radiated. A few weeks after that I started Xeloda which was an easy chemo for me. Six months later the mets were all sleeping again (I have always had several from the beginning). My PET scan in April showed three reappearing so off of Xeloda. My doctor then wanted me to start my first IV chemo, Abraxane. I myself said no as I decided to take a few months off before chemo to visit Hawaii, etc. I just seem to get a sense with my oncologist (who I have always trusted) that she and other doctors fear that the bone mets will spread to organs, and their patient will fault them if they give them a break. She never said that after so many years it is unlikely they will spread. So now I sit after a week of Abraxane and feel miserable with neuropathy of hands and feet. I can hardly type with my right hand. I see my doctor this afternoon. I guess I feel doctors can never predict our future. In 2006 my first oncologist gave me only two to five years to live. I sent her a letter at year five and told her to never tell another patient how long they have to live unless they ask and to NEVER tell a patient this info over a phone. I plan to send her another letter in April 2016 when I reach year 10. I think you should ask your doctor if he has read statistics about the mets not spreading if they have not in four years and let us know.
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hopeFaithCourage, i am sorry to hear that your family is not supportive at a time when you need them so much. I agree with Annie that sometimes it is a coping mechanism. I don't want my family to be devastated and unable to handle my diagnosis, but I do expect them to understand (as much as that is possible) and support me.
Valerie- I am doing very well on Arimidex. I had some mild hot flashes during the first two weeks. I called them warm sparks because they weren't strong enough for hot flashes. Other than that, I am feeling pretty darn good so far. It seems to be working because we are seeing results. I will have my TMs checked next month. Hopefully, they will be lower than the 947 they were before treatment! I am hoping that Arimidex works for a long time. I will have my first Zometa infusion next month. I hope that Arimidex is treating you well, too.
My iPad is misbehaving so I will not try to address everyone individually. I wish everyone good test/scan results, pain relief, and a wonderful weekend.
Lynne
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Good morning, dear sweet friends, I am sitting in the waiting room of my oncologist. Deanna, Linda, Amy, jobur, I feel your encouraging presence here, with me. The sun is pouring through the open window behind me, and the warmth on my back feels good. I'm thinking of my gardens, and my two rose bushes waiting to be deadheaded when I return home, xo, Valerie
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