Bone Mets Thread
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Babs, WOOHOO! I am so happy to hear your results. Yay for Xeloda. I hope you do some celebrating tonight.
Lynne
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Patty, I have to agree with others who think you should transfer to a larger state-of-the-art facility that is better equipped to get to the source of what have become chronic gastrointestinal issues. When my DH had GI issues two weeks after his discharge from a big Boston hospital, we went to a local hospital. They stabilized him but then realized that he would be better served back in Boston. We really wanted to stay close to home, but the big teaching hospitals have more equipment, better qualified specialists, easily accessible specialists of all kinds for consults. It is no fun to be in the hospital, and the tests can be overwhelming at times, but DH was seen by all the right people in spite of the fact that his body had so many complications. We all care about you want you to get better.
As far as the DNR is concerned, I don't understand why the doctors are focusing on that right now. I thought that the DNR came into play only when someone had reached the point that survival would be impossible without extraordinary intervention, no? I don't know everything that is happening to you, but it seems that you are not at that point. I also agree with others who have said that your attitude is very different when you are home and feeling better. You enjoy all the time you spend with your family when you feel better. Don't lose sight of that. I am sure you are exhausted right now.
I have been praying for you and for your doctors, hoping they will find the answers needed to get you better.
Oh, that WASP NEST......ewwwwww is all I can say. Ewwwwww, ewwwwww, ewwwwww. Can you imagine how long that nest had been there to get so big?
((((Hugs)))), Lynne
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I just posted this in the Clinical Trials Forum, but wanted to share it here, as well. Given Pfizer's phenomenal success with getting Ibrance developed and to market STAT, I think this is fantastic news. I hope it will encourage anyone who are struggling right now.
http://www.prnewswire.com/news-releases/the-breast...
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Hi, everybody, thanks to the higher power for this thread. The doctor at the acute care hospital got my mother when she was alone or maybe only with a nurse with him early in the morning to agree to a DNR and other measures that allow her to die in an emergency. This doctor mentioned it to me a couple of days ago, but it went flying out of my mind. I have too many things to deal with. The DNR discussion on this site made me remember. My mother is nearly deaf and she did not have her glasses with her. I called the hospital and they defended the action on the grounds that my mother could SPEAK even if she can't hear or read any documents placed in front of her. I was furious when I realized what had happened. My mother thought the doctor was a judge with legal papers, and she had no idea what she was agreeing to. I sent my brother flying out the door to the hospital. The doctor told my brother that my mother had to say all of this in front of a witness and he would change it. I am going to bed early and I plan to meet the doctor between 7:00 a.m. and 8 a.m. attired a dress suit and heels tomorrow.
I wonder if doctors are getting bonuses now to get sick patients to sign DNR agreements. Sorry to be cynical, but we are living in a world where Medicare pays auditing companies bonuses to find technical problems that permit the agency to deny claims submitted by doctors and other medical suppliers including those that sell durable medical equipment. My own mother lost her medical bed due to two words written by the doctor discovered by the auditor: semi-electric. Medicare would not allow the supplier to go back to the doctor to correct the paperwork.
Oh, do I feel sick.
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Dearest Patty I have to say I totally agree with Deana please consider you are so young and if they could resolve these issues you are having currently it may change your mind. Of course I support you in whatever you decide but please reconsider.😘
Wendy
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Decision Freak get an Elder Care attorney immediately. Good luck sorry this is happening to your family and you.
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Decision Freak, It is deplorable that the doctor would take advantage of your mother in that way. She can rescind the order at any time, and you should help her do that if that is her desire. Does your hospital have a patient and family relations department? If they do, talk to them to make them aware of what is happening. The hosptital's social worker could also be pulled in. The more people who are involved, the more urgent your mothers' doctor wiill consider this.
Wendy, I am sorry for everything that you and your sister are going through. I hope that your sister receives good news. There is still so many unknowns about breast cancer and all cancers. The researchers have come a long way, but there is so much more to do.
Lindalou, I have seen my scans. My breast surgeon is diligent about reviewing scans with me and showing me everything of significance. My MO reviews the reports with me, but not the scans themselves. I have to admit that I find the scans to be fascinating, but if I looked at them by myself, they would just look like a bunch of images.
Deanna, Thank you for posting that link. It is encouraging to know that more resources are being targeted to breast cancer.
Lynne
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Decision Freak, what happened to your Mother is extremely upsetting. Please keep us posted on your meeting with her doctor. It's very distressing that we have to fight with insurance or Medicare or hospital rules and regulations or doctors when we or someone dear to us is already dealing with a life-threatening illness. I saw some recent research suggesting that elderly people who do not have support do not live as long as those who do. At the time it made me think about researcher and author Dan Buettner's work in the Blue Zones, where he identified the support of family and friends as one of the keys to longevity. I don't think he ever viewed it in the context of battling with hospitals over coerced DNRs and such, but clearly, having an informed and vocal advocate has a lot to do with survival and longevity!
Wendy, sending good wishes for your sister. While I'm sure she is your main concern today, I am shaking my head that this is falling in a week when you're already feeling less than ready to take on the world. I'm so sorry. I pray her biopsy is B9.
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waving hello. Lurking. Trying to get my thoughts together to post.
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The woman with whom I spoke defended all actions as completely reasonable. She went on and on about how sick my mother is with Mets.
The doctor also kept talking about how sick my mother is, how much cancer she has in her body. He doesn't know anything about mets. He has no idea that people are living with mets. He is not God.
The acute care hospital called the doctor. He seemed angry at my brother questioning why my brother would want her alive on oxygen. I am outraged and enraged. I have to find out how to execute the healthcare power of attorney papers right away. I am going to make some phone calls right away. I think as my mother's caregiver that I have access to free legal counsel. I just have to find out if the free service includes this paper work.
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Hello to all,
Wendy, so sorry your sister has to go through this. I'm praying her biopsy is benign.
Babs, so happy for your great scan results, do something special to celebrate. I'm glad you got the results sooner and didn't have to have the added anxiety of waiting.
Patty, I have to agree with what Deanna and the others have said. You are so cared about here, we only want what is best for you.
Lindalou, there has been alot of breast cancer in your family. I'm sure your niece will be relieved to have you there. I worry about my dd's because of my MBC and my husband's mom had it as well. I'm the first in my family though, and the first with MS.
Hugs to all, Annie
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I'm finally home and able to catch up. Went to my DD tonight to have a celebratory dinner with her and my DH!!
First I want to thank all of you for your support. Decision Fr is so right! The pure love that we all have for each other is amazing! We celebrate each others good news and are there for each other when support is needed due to bad news.
Patty, first of all I'm glad you're feeling better. I agree with all the suggestions that maybe you should transfer your care to a bigger CA center. Like LoveMaltes I was going to a local ca center when I became stage IV with MBC. The MO there had very little to offer me so I switched to MSKCC where there are so many more options. It's been a year of no success until now. My first 2 txts didn't work. But my MO assures me she has many more "tricks" up her sleeve if/when my current treatment (Xeloda) fails me.
Wendy- 2 weeks is way too long to wait for results- push, push, push! I know how you feel about your lil sister. My Mom died of BC at the age of 42 so when my little sister was dx with ovarian cancer it was like a knife in my heart. Thank god she is a survivor! When is your sisters bx? I hope its a benign scare and nothing else! My sister and I both had the BRAC1 & 2 tests and they were negative. But so many of my Mom's first cousins have had either ovarian or BC it's scary so, I know we have some abnormal gene that hasn't been found yet.
Lindalou-I don't see the actual scans unless I ask for a copy but since I wouldn't know how to read them I only do that when I want another drs. opinion. But I do get the oral report on my center's portal which goes into great detail. My MO never really goes over it because I review the report in great detail, take notes, and then ask questions if I have any.
Bullfrog - I'm now hoping for your scan results to be good ones too! I want as many of us as possible to be able to celebrate!
Good night all
Babs
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dlb823, I have literally pulled my mother back from destruction by doctors and other medical professionals AND HER FAMILY on more than one occasion. I am trying to rest from my own surgery so that I have enough energy to care for my mother when she comes home.The last thing I need is an A*s that wears a white coat who doesn't have a clue about my mother's mbc. I want to take my mother out of a hospital where the doctors cannot imagine why we want my mother to stay alive. I am in a white hot burning rage that surpasses anything I have ever experienced. I don't feel safe with my mother in this hospital but I am not sure where we could take her.
We have been under a tornado watch for hours. Sqalls are still coming up from the South, but I can't tell if we will be hit. I live within 100 miles of the Gulf Coast. It may not be safe to go out tomorrow as some parts of our small city have considerable damage.
I appreciate the advice some of you have given me and am taking steps as quickly as possible to protect my mother.
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good morning friends.
I am still in hospital. We are changing all IV mrfd to oral except the antibiotics. If I handle it well with no more vomiting then home tomorrow. Yea !!!
I've read all your comments on DNR. Also about transferring to a larger teaching hospital. The next larger hospital is university of Arkansas in little Rock - uams - which is Luke 3 hours one way. Just riding 10 minutes as my back in such s spasm my nwhoke body jrrks. I could loadupnon pain meds and then sleep woke dh drives but there's no way to do that weekly. We have a uams satellite office in town and I've been there once and my mo talkied to them on the phone in front of me. They think it's the slow digesting stomach based on an empting gastic test. I have tried on three or four medicines for this with no results. As far as the dnr instill believe it's the rght choice for me. However I am reconsidering stopping tx. I get in such s funk in the hospital and easily forget the good days. Thanks for reminding me. I went back and read my prior post when I'm home and look at the pictures - I had totally forgot that there are happy times and I'm so thankful that you all reminded me. I love so many of y'all like family and am happy we are all close that we can share opinions without any feelings getting hurt. We stopped all of our IV medicines today except for antibiotic and went to oral per my request. That way when I get home I know that I can still take the oral medicine and stay on top of it. So tomorrow we're homebound as long as i don't have a lot of vomiting today. Hip hip hooray! Oh yes got my brain MRI back nothing there hallelujah no tumors praise God! I've been doing some really weird things my husband and family such as far as talking outloud to my family that's been gone many years. . Waking and just talking out loud just crazy stuff. Not remember how to make tea wish I made everyday for 20 years. So I was pretty concerned. However I think it was just a distress or be the amount of pain meds I am on.
Sorry for the book. Again. Tanks for the support and advice.
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Good morning Patty,
I am praying that you are able to go home tomorrow. It is a good sign that they are beginning to move you to oral medications. One step at a time. I assume that some of those medications will help your body digest things more quickly. My DH has an inflamed duodenum that causes the same situation since the stomach contents cannot pass through to the intestines although the cause is different. I hope that your condition is temporary or treatable as is his. I know how difficult it can be.
It must be scary to find that you are talking to people who have been gone for years and forgetting how to make tea. Medications and stress can both do weird things to our minds, so I am sure it is caused by one or both of those. Years ago my father-in-law was in the hospital. When my MIL visited him, he told her that the dust bunnies under his bed were attacking him when no one else was in the room and also that the doctors and nurses were in cahoots and had robbed a bank. He was reacting to medication, but he had a good laugh about it later.
A huge WOOHOO for the MRI results. Happy dance, happy dance, happy dance!
We are all pulling for you. You will feel better when you are home in the arms of your wonderful family.
Lynne
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Party, if there is an American Cancer Society Hope Lodge in Little Rock you could stay there for free during treatment. They have two beds in the room allowing for two caregivers. They have a big kitchen for food preparation. Some people stay there for long periods of time to avoid having to travel. I stayed at a Hope Lodge in another city and it was wonderful.
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All
I stayed out of the DNR debate because it's so personal and for reasons which I hope will become clear but now feeling stronger. When I had my fall in new year and went to ER for brain MRI, the doctor, in early 30's?, said quite bluntly if we find bleeding in your brain do you want surgery? I assumed he must have an alternative in mind. He did "Some people in your situation are ready to give in so we would do nothing. Do you want a DNR?" I and my husband must have stared at him blankly for an age because he impatiently repeated it - QOL etc. We both said no, MRI showed no bleeding and we came home to bad scan results. DNR had never crossed my mind but I was not able to get it out of my head and am only now beginning to. My MO said the ER doc thought in terms of life and death and wasn't used to long term illness as many younger docs weren't and more importantly they had no idea of the full range of Drugs available and being developed and ER simply didn't know what he was talking about. He was not happy.
But I think however logical, sane whatever (perhaps the more logical, the worse!), once that idea is lodged in your head, it is v hard not to linger on it, particularly in the small hours of the morning, away from home and family and begin to think maybe people would be better off without you. It's not true particularly for children.
I make a list of the good things - my husband, my son, our dog, plan holidays and dinners and shows - and now get myself through those dark hours - failing which I have a tantrum!
As to talking to the dead, I have done that for years (maybe I am insane). My mum died of cancer almost 50 years ago and my (living) father who brought us up in days when you didn't have single fathers asked her advice all the time - particularly about his troublesome daughter! I have always thought it perfectly reasonable.
Like you, I am hoping to go home tomorrow - lets go fight together and not let them snatch one second of life and family love. Sorry if I have overstepped the mark
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Bosco, I have added a prayer that you go home tomorrow, too. It would be a wonderful day for us to celebrate if you and Patty both leave the hospital.
It is good that you can focus on the positive aspects of your life. It is so important when things get difficult. It is hard to remember that he difficult times are usually temporary and that we have all the treasures of our lives waiting for us. There will come a day when we can no longer fight through the hard times, but for now we can.
It touched home when you said that you talk to dead people. My parents died several years ago, but I still talk to them out loud. Sometimes I do things or see things that I know one of them would laugh at or be interested in, and I find myself driving and saying, "Do you believe that one, Mom?" I have no doubt that people think I am crazy since, as I have admitted on these boards, I also sing loudly in the car. I guess I am quite a site.
Lynne
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I all my mbc friends DNR does not mean do not treat, it only means no CPR or intubation if your heart stops or you quit breathing. All treatment s up until this are continued. I have been a DNR since diagnosis. Patty glad you are feeling better,spring is coming and that always gives me a lift. Decisionfire I would ask to speak to pts care representative and talk about this unethical behavior, I believe that should get some results.
Marilyn
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You are all so beautiful. Your words are so loving and kind reading it is like being wrapped in a warm hug thank you. The fear we face every moment of every day seems to only make us stronger and together we are a force to be reckoned with.
Patty we all love you even though we have never met or heard your voice. I'm thinking of you home tomorrow with your family surrounded by love and making more memories for all.
Bosco I will be doing my own rendition of a happy dance when you get yourself home as well. Family is the best drug as far as I'm concerned anything is possible when love is present.
So scan done now I wait for some answers...the shitty thing is the oncologist has the results today and I was told by the receptionist who I bugged a lot that to see the doc will take one to two weeks. In my mind that's two weeks of freedom for my cancer🙄 anyway we shall see eh?
I wish everyone the absolute best day! Good scans, no pain and lots of love and happiness.
Wendy
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Patty. Glad you're feeling better and may go home soon. Great news on MRI. Celebrate that!!! You could have also been dehydrated from everything When that happens sometimes the mind plays silly games. I remember when that happened to my father in law he thought he was fighting in the war and bit his nurse and mistook my sister in law for his drill Sgt. My DH and I were laughing- he was the mildest person in the world. Once he was hydrated he had no memory of what he did and kept apologizing to his nurse when we told him.
Bosco. I too hope you go home today or tomorrow
Home is where the heart is for all of us!
Babs
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Wendy, I don't understand how your onc can justify making you wait for a week or two for the results when he or she will have them today, that makes no sense. If the onc cannot see you, can't a phone call be made to you? I am sure you have already asked every imaginable question about this, but I just do not understand. I am sorry that you are being put through all this stress. We are here for you and there with you in spirit.
Lynne
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Patty-your brain is just fine. You were just stressed and obviously hospitals do that to you. I hope you can get home tomorrow. And Bosco, what you wrote was just beautiful worded. I dream my mom, who passed away five years ago, comes and talks to me. I thinks it's mentally healthy to let your brain process what is happening to you and if you yak to dead people that's ok. Meds can make for weird stuff though. My dad absolutely cannot have any opiates or he gets bizarre. Up in the middle of the night trying to leave the hospital because he thought he being held prisoner there, etc., etc. The night staff thought he had full blown dementia and were amazed at how different he was after the Norco had worn off. We told hem not to give it to him but they did anyway. And Wendy, you are so right about this forum's power.
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Patty, I have spent my life as a writer. We have not met you, but your words and the way you express your reveal the beautiful spirit that animates them. You will give me courage now to stay strong for my Mom and myself. The main thing I can share is problem solving ability. I have deep faith too, but that is perhaps a PM topic
513mgb and everybody, I didn't want to leave the house early with the possibility of running into trees downed by tornados. So, I didn't meet with the doctor this morning. I have a transvaginal ultrasound at 1:00 p.m., and I have made a request to meet with the chief administrator and the case worker at the acute care hospital to discuss my concerns. The pen is more powerful than the sword so I think that I may document what has happened in writing or send a follow up letter. I plan to turn on my phone and record the meeting. I live in a one party consent state so it is legal. I am white hot angry. I have taken meds that I use sparingly to stay as calm as possible. I am going to read, pray, and meditate for a little while. Then, I am going to figure out what questions I have. It bothers me that these doctors keep justifying their attitudes about my mother based on her mbc. They are treating her for lung collapse not Mac.
I have also spoken with a law firm about paper work to protect my mother. If my mom is on board and makes the request herself by phone, they will come to the hospital to get the paperwork done. It is free but I will make a donation. My mom can talk on the phone but cannot hear much.
Those of you who made the point that I should voice my concerns clearly at the hospital with the appropriate people were right on target. Bad acts can only be done in the darkness. I have to shine a light on this doctor so that he understands that he did something careless and unethical. My mother thought this doctor was a judge, and I am very unclear how she got that idea.
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good morning all. Just a quick comment on waiting for scan results. Typically the dictated report is available within 24 hours. It is your medical record and is available to you. My doc is pretty good with scan results but I have always picked up the report myself from the provider that performed the scan within 24 hours. It gives me the opportunity to gather my thoughts and prepare questions. I realize everyone might not want to do this but many people do.
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I think one thing I've gotten out of this DNR discussion is that they should NEVER be executed when we are having a medical crisis. Heck, I've had severe flu episodes in the past when I felt like, just shoot me now. They need to be thought about in advance, when we are in a normal frame of mind, and our thoughts aren't confused by pain or severe vomiting or dehydration or being hooked up to IVs or any number of depressing things that hopefully are temporary -- and certainly not when we are hallucinating and being cared for by docs who cannot instill hope or guided by a doc who dances backwards out of a room in the middle of a conversation.
Patty, I'm glad you're feeling better and I sure hope you can go home tomorrow. I don't think a phone consult with a UofA satellite office is the same as actually being seen by a team of experts at the main medical center in Little Rock, but it sounds like even that one call yielded some good info. And I hear you about the difficulty of a 3 hr. o/w drive. That's why we only drive to UCLA quarterly and use a local onc for my monthly follow up and tx and in case I end up in the ER or need hospitalization. If you have a satellite office, that sounds far more convenient than my situation. By the way, an experience I had on Friday is illustrative of the difference in quality of care -- when I was put on an absolutely futuristic-looking, brand spanking new CT machine at UCLA. How many regional hospitals have one of those? And yes, the tech said there's a significant difference in image quality.
Bosco, your DNR story is horrible, and I feel bad that the discussion here evoked memories of it. Those types of experiences are exactly why we need only positive docs on our teams -- because even one negative comment or look can stay with us and send our thoughts to those dark places, especially when we're not feeling well. It makes me both angry and sad to know that happened to you, but thankfully you are strong and realize that it was their poor perception of the situation -- NOT a reflection of your strength and spirit. And so glad to know you are also slated to get out of there very soon!
Wendy, sending you strength as you wait for results! I agree, it's a shame they make you wait that long when it sounds like the results are available. OTOH, we pay so much more for medical care in the US, which can also be very stressing and worrisome, so I guess it's a trade-off in that regard.
DecisionFreak, I've been thinking about you all morning and hoping your confrontation went well. You certainly seem to have far more medical knowledge than most people do, which should be a huge advantage.
Hello and hugs to everyone else!
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Patty and Bosco - so happy to hear you are both heading home. But make sure you let yourselves be pampered when you get there! Patty, I'm thrilled to hear that you are reconsidering tx and YAY on clear brain. BTW, I always talk to my dear ones who have passed and have been for years.
Wendy - it seems to be common practice in Canada to wait 2 weeks (I hate it). On several occasions, I asked my MO to let my nurse navigator give me the results from the verbal report. It usually takes about 2 weeks to have the written report here, but the verbal report is usually ready within 48 hours. I'm very lucky to have a thorough and helpful nurse navigator. The first nurse I had was useless, I complained and now I'm more than happy with the current one.
Decisionfreak - you are one organized lady!
Ugh, another storm here, lots of snow, then freezing rain then rain...
Sending hugs all around.
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whew. Good morning today. I fill out my DNR a couple of months ago however they didn't have one on file they said even though I filled it out here I have a copy at home but I didn't bring it being so sick it was the last thing on my mind. Was having Lots of pain. Doctor had to change my medicines to oral as I requested. But he made my break thru pain medicine 4 milligrams every 4 hours at home I take eight milligrams every three hours. Obviously it's not the same. But luckily now it looks like all is fixed. The nurses are all sweet here but especially the one helping me all week. I knew right away that would hit ifbnoff s her name is Sally. Of course Sally and peppermint patty were great friends. The night nurse and daynurse both gave me their personal cell phone numbers. The would love to talk or grab lunch anytime. Feeling very very lucky to have such a nice nurses. Well my mo has been Mia since the last conversation. I hsve regularly scheduled appointment on Monday with him. I will in fact stand in door way if necessary. Y'all might see it on the news. Crazy woman from Arkansas weigung in at 100 pounds soaking wet body slams Dr twice her size. Lol. Jk. Please don't take that seriously and report me or something.
Lynne - lol fil
Baba - your fil bit the nurse too funny. I have actual tears right now from laughing so hard.
Not sure who mentioned the staying in little Rock but I got 2 dss need me at home.
Lindae stay warm
Bosco. I pray you also break free tomorrow. U certainly didn't overstep any boundaries. IDC how in the dark bowling clap hurricane stay on your mind and playback tricks.
O yeah hospital counselors talked to me about home health. I thought it was same as hospice. I was wrong. Now set up for them to come to my house weekly for my labs so I don't have to drag myself to the clinic. I will still see mo ( maybe s new one ) and am able to still talk directly to mo without going through home health. Theycan also collect urune when I feel uti coming on and Dr can simpk call in a rx for me. How cool.
Dlb - you always have the best advice Thanks
Decision freak - you go girl. ! I hope you setbtgem straight in the meeting today
Wendy I agree. Love this forum love these people. 2 weeks sounds like a long wait you certainly have a great attitude about it.
Hugs to all I missed. Getting very sleepy.
Bblm
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Hi all, I apologize as it has been some time since I've posted and have been lurking around these threads. I am so sorry as I am not caught up on all of you but hope everyone is doing well and is stable and pain free. To anyone going through a tough time - hugs all around.
Definitely don't want to take away on anyone's good (or bad news) but wanted to share the latest on my mom. As a quick recap - she was diagnosed with Stage 4 to her hips, pelvic, spinal bones in late November and did radiation, is on Falsodex. and Zometa. From Christmas until now, it seems like she is almost pain free, her limp is gone, and she feels like her old self. she was even able to get cleared to go back to work on a very limited schedule (12 hours a week as a nurse).
Yesterday, was her first PET scan since diagnosis and since her initial rounds of treatments. Fortunately, there has been no spread in her bones although no shrinkage in tumors at all. Tumor markers have elevated slightly. My mom remains optimistic that she feels a lot better than she did a few months ago but a bit disappointed in no shrinkage. With that said, there is bad news and that is that it may have spread to her liver as there are 3 spots that were not there 3 months ago. I know the liver is a bit scarier than just in the bones and she wanted for me to ask you all if anyone has tried Xeloda which is the form of chemo they will start her with.
She is uncertain and nervous as to why they want to take her off Falsodex as it is targeting the hormone receptors of her cancer (she is ER/+PR+/HER-) and afraid it will make her worse. she wants to go for a second opinion. Although she isn't joining the boards yet - she asked me to pass along any advice you may have for her and just how bad is it if it spreads to the liver so soon.
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Yey! The result of my bone scan show improvement compared to the last scan! Doctor is going to consider stopping the chemo and putting me in anti hormonals probably Faslodex! Anyone can give me the heads up on Faslodex?
I'm sorry not to address the posts I'll come back and do it a little later on in just so excited I have to spread the news!
Aurora
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