Bone Mets Thread
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Aurora -- congratulations on the improved scans!!! That's great news!!! We're all different, but I am loving Faslodex and would be happy to stay on it for a very long time. It's two needles/shots -- one in each butt muscle, once a month. When done correctly, the discomfort is minimal, as are the SEs -- at least they have been for me. There's a thread here for Faslodex with lots of information. https://community.breastcancer.org/forum/8/topics/... And if by chance they add Ibrance to your regimen, there's another thread for that, and one for Faslodex+Ibrance.
DaughterLove, I'm glad your Mom's feeling so much better! Not sure what to think about the new spots on her liver, but I'm wondering if adding Ibrance to her current Faslodex might be another option? It seems -- just from reading what others are experiencing both here and on FB -- while a few women have had liver progression while on Ibrance, many seem to be reporting regression and even the disappearance of liver lesions. Once again, I'm not a doc -- just sharing some observations that have interested me, especially since Ibrance is such a new drug. Also, 3 mos. probably isn't enough time to see a lot of improvement, so for now, stable sounds good. OTOH, Babs (here) is experiencing great results with Xeloda, and I'm sure she'll be able to tell you a lot more when she sees your question. In the meantime, I'm glad your Mom is feeling well enough to go back to work P/T. Good for her!
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Aurora so happy about your scan results!!! Yes!!!
Babs
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Aurora, WOOHOO for improvement. I am doing the happy dance for you now. It is wonderful to hear about your improvement over the past few months. You have had some rough spots, but it is great to see how far you have come. Another WOOHOO for you.
DaughterLove, I am glad to hear from you. I have missed you and hoped that your mother was doing well. I agree with Deanna. It is still early to see any real improvement in bone mets, so stable is wonderful. It is a good sign that she is feeling so much better. I hope the new tx plan yields good results.
Prayers and wishes for a peaceful night to everyone.
Lynne
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Hi, everybody. I am writing on a cell phone as I have been too busy to send my computer to Dell for repair. I wish I could address everybody by name, but please know that I am reading your posts. I met with the case manager and the nursing director of clinical medicine today at the acute care hospital. They were unable to give me any kind of timeline for my Mom leaving this hospital.
They didn't like me, and I didn't like them. They kept trying to shut me down. I am ashamed to say that I resorted to yelling. I had my teeth bared, and I was white hot angry. They defended the doctor and had little interest in hearing how he hurt us with his dark comment. The doctor did reverse the orders for now. However, he actually went back in my mother's room last night with a nurse and got Mom to say the opposite of what she said to my brother earlier in the day. They kept focusing on how sick my mother is from the mets. I told them the oncology office celebrated when they saw the scan that the acute care doctor is using to prove that my mother is a very sick woman. I explained that many people are living with mets now.
I wish I could grab my mother and take her to another facility. These people made me sick. I am not sure there is much I can do.
The nursing director of clinical medicine had a strange expression when I talked about the doctor. It was cynical as if perhaps she has heard hundreds of complaints like mine. It was a kind of unconscious sneer that I did not feel was directed at me.
My brother and I spent time in my mother's room with her after I has the transvaginal ultrasound. Now that I am starting to recover from the surgery, I am going to spend more time at the hospital with my mom.
My brother said he thought we accomplished the goal. The aim was to make our presence known and make sure the hospital staff knows we are watching them. He thinks we have applied sufficient pressure that they will do all they can to get my mother as healed as possible so that she can come home or go to rehab. I did as promised and wore a suit with a dressy top, heels, and make up. I was the cat from hell. I wish that I didn't yell when I get angry. People here act as if yelling is a criminal act. I have a unique medication that I can take that helps me keep my temper. It can affect the liver but probably not cause any serious damage.at the dosage I require.. I am starting back on this medication. I wish I didn't need it but I do. On the other hand, I am a hellcat trained in the elite offices of Washington. D.C. on how to hang tough. And when these cowards accused me of being aggressive, there was not a tear in my eye.
My tears are for my Mom and for the amazing ladies who shine like stars on this thread. Hang tough ladies. I know some are suffering in pain. I hope that as each day passed you are visited by joy.
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thank you 50s, babs, and dlb. Ive missed you all too. It's encouraging to know that no progression in Bones but no shrinkage is normal after just three months. Next she is meeting with an orthopaedic surgeon (who was waiting for her to have a pet scan) to see if hip surgery might be needed.
I'll let my mom know about the Ibrance as well as the fact Xeloda has helped so many. It's tough because her doctor is wonderful and there for her is on maternity leave and her replacement doctor barely seemed to know my mom at all. I now need to keep my dad calm as "chemo" even in pill form where she might not lose her hair scares him. Got to keep strong for everyone.
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auorora. Great news !!
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Hello all!
Aurora, fantastic news!! I don't have any advice for you regarding Fasodex, but I'm sure you'll get all you need here & on the other thread that Deanna posted.
Patty, how are you doing today?
Daughterlove, good to see you back. Glad to hear that your mom is doing good. I had more prominence after 3 months, and I'm mentioning this because I was really upset about it, but it was just bone repair, nothing to worry about. I haven't taken Xeloda so I have nothing to offer there, but support.
DF, Your mother is lucky that you are on her side!!
Maybe I should get you to have a chat with my MO with the horrible bedside manner.I had lunch with a woman that I met at my PS's office when he asked me if I would mind showing a patient my reconstruction. We laughed today about that first meeting with me whipping my top off & her & the PS looking at my breasts & discussing them as if I wasn't there. Too funny.
Take care all, cheers, Dee
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Wowsa...so much to read! And I'm typing on my phone. Hooray for all the good news in the past few days! Wendy - two weeks is BS. Insane. Makes me mad!
Patty - my friend is recovering from a perforated ulcer. Undiagnosed until it perforated. Before it did that she had similar gastro issues to yours. The docs were focussed on her Stage 4 BC and treating "symptoms" from side effects and didn't send her to a gastro doc. She was in ICU for a week and rehab place for several weeks. Her ulcer had nothing to do with her cancer. So I"d sure be getting a GI doc involved. Insane that this has gone on so long.
I am in Auckland still and really tired. Sorry not to address everyone but thinking of you all and sending hugs!
Terre
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On my way to Florida to see my folks for the weekend. My Dad is 94 so I decided he didn't have to know about by reoccurrence and progression. Thankfully I can put on a happy face due to my good scan results. My Mom (step mom) can usually read me so getting a good result was great on 2 levels!
Babs
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Ugh...I am a person of faith, but I realized this morning the pastor at the hospital slipped into my mom"s room and stood listening while we spoke with my mother and with the nursing director of clinical services and a nurse.
HIPPA violation? I think so.
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Hi ladies,
I'm sorry I haven't been on here much. Just too much going on. Working, problems w husband not working and constant conflict w him, still working on pain management (discussing nerve block now w pain management), and careing for my 2 kids. Really, nights are my best time. Laying in bed w my kids makes me so happy.
I will try to catch up on the reading.
Hugs and love to all!
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Good morning all,
Aurora - I'm thrilled to read your results, you've come a long way girl! Sorry no experience (yet) with Fas.
Daughterlove - that's excellent news after only 3 months. Will they do a biopsy of the liver lesions?
Patty - waving at you. How are you today?
Bosco - waving at you also. How are you doing?
Babs - have a good getaway.
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Aurora that's great news I'm very happy and excited for you.
Cjanets nice to see you again I know the kids are the best medicine.
Babs have fun in the sun and enjoy your good news.
Patty how are you feeling today? Hopefully you are packing up and heading out the door of the hospital.
Terre you are so right. My husband keeps telling me that I have to remember that I'll be 52 soon and that I will have other age related ailments and that it's all not cancer. Now the doctors need to realize this as well.
So I went yesterday to the hospital to sit in one of those scary chairs and get my infusion of bone building meds. I could not believe how many people were there. There were literally line ups for elevators on every floor and they had four of them. Packed each time with people either directly afflicted with this disease or indirectly. Made me so sad so many tears so much sadness. I'm in this boat because I believed my doctors when they told me I had just a cyst . Cut back on coffee and you'll be fine. Decisionfre I know where your coming from. Still waiting on scans will phone again today. My sister is still waiting for her biopsy date. What does all this waiting do to us?
So that's my rant for today I wish every single one of you a beautiful loving day. My friends☺️
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Aurora:great news. Congratulations.
Hello to everyone. Scan day today: CT of abdomen and pelvis, CT of chest, and full body bone scan. In all of this, with all the tests and chemo and side effects and pokes and prods, I still think there is nothing I hate more than the barium drink. Yuck.
In happier news, last night my daughter got her Girl Scout bronze award, the highest award a junior can receive. My mom and I both went through Girl Scouts through high school, so it was really meaningful. Grateful to be able to have these moments.
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I'm not sure if I'd call it great news to be stable (in bones) after 3 months but now it is in the liver. I think my family is freaking out that it is now in the liver and she now has to do chemo.
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DaughterLoves, I have 2 spots on my liver as well after being diagnosed April 2015 with bone mets. I'm hoping those spots aren't cancer, but they weren't there in April 2015 and they are there now January 2016. If Ibrance fails (we are not there yet) my choice for next drug will be Xeloda. I also have a node in my lung now 8 mm that was 4 mm. Don't know what that is either. Also taking Zyflamend and Turkey tail daily. Don't know if they help but can't hurt to take these supplements.
I'm so happy to hear about good scans, Deanna and BABS!
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Patty and Bosco, I hope both of you are out of the hospital today. I wish both of you good health and Patty please follow up w GI consult.
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bkuefrog. Love the pic. No denying she is your dd. So pretty. Glad you were able to beveuyh her for the award
Bosco. - are you home yet ?
Wedy. Gl on scans
Babs. Yea. Good scan results.
Lindae. Waving. Hello
Hugs to all
I am spending yet another night in the hospital. Grr. Git so pissed last night. Apparently Hosp dr took zofran sway I didn't know. Yesterday we alternated zofran and pheneran and it worked well. So only taking the pheneran every ,8 hours my vomiting started back. Then I couldn't keep pain meds down either. I cried huge crocodile tears for 3 hours once then 2 hours later and in between vomiting more than a dozen times. Charge nurse said Hosp dr on call is not authorized to change meds or even a 1 Time increase. Secsaid she called Dr and e refused. My nurse told me in confidence that charge nurse did NoT even try to contact on call Dr. I confronted charge nurse and demanded to know drsnsme and exact time She called . She finally admits she nreceer even tried. Lazy lazy. Said because my blood pressure was so low it was going to be up to me whether I wanted to possibly die for taking the pain medicine or oral nausea medicine or not because of my blood pressure. . my blood pressure was 130 over 112. Never been that high. Surely is due to pain. I told her that I was fully aware of the chance i am taken. She still refused. She said no reason to be on so much pain meds. Wth? My mo Dr and Hosp dr said not unusual at all with cancer patients she went as far as to say that She understood I was emotional uh no... I sm crying in pain. We got into a huge arguement and eitheout securty guard cominin it might have resulted in an a## kickin for her. I demanded she gets. Out of my room. Morning shift finally came on and meds were corrected immediately. I did complain to Hosp dr , floor charge nurse. Palliative care and today's nurse. All were sorry and said unacceptable. I willl also do a written complaint to Medicare and hospital . Course that doesn't help now. I will have a different nurse and charge nurse tonight. Def gonna get an appt at uams ASAP . I believe I would have gone home today if not for the charge nurse.
BTW 3 nurses told methat's why they changed shifts when she became boss. They said someone is going to have dire consequences because of her laziness. They wanted no part of being on s shift with her and being blamed as well.
OK enough ranting for now.
Hugs.
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Patty - my blood is boiling as I read your post! Who the heck does she think she is?! It' totally unacceptable. Good for you for speaking up and confronting her. And yes, this has to reported asap. I'm ranting with you...Oh I'm mad. UAMS asap, yes!
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Could have sworn I just posted to you Patty, but I don't see it now, so maybe I never Submit. Anyway, what I said was that I was absolutely LIVID reading what had happened to you. That nurse is just lucky I'm not within driving distance or I would be in the President of that hospital's office right now raising hell about what happened to you. TOTALLY UNACCEPTABLE, and I truly hope she gets fired before she kills someone, if she hasn't already. What a horrible, evil excuse for a nurse. I am furious!!!!!!!!!!!!!!!!!
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thsnks lindae and deanna. I may need yall's help whipping her.
I've done great all day now thst meds are corrected. I complained to everyone and their brothre here. So charge nurse won't be in m room and fkor nurse said 3 other rooms are demanding a diff charge nurse thenher also . sounds like they need to fire her. Period.
Night before last charge nurse has her own rooms of patients also. She forgot to set the bed alarm on a elderly patients with dementia. The lady got to the bathroom and fell and ihut her head required stitches is what my nurse said.
I also got my DNR on file and it will show up everytime I come now.
OK rantings done for awhile.
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Patty, that is horrible. That woman has no business being a nurse. Nursing is a tough job, and some people are excellent fits, but she obviously is not one of them. No excuses, NONE!
Lynne
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Patty
I had a less bad but similar experience here - not from pain but when nurses or floor doctorsinsisted on more fluids which pumped my BP up too high for treatment (way higher than yours 195/100). When I started crying, they kept patting me (so patronising), offered me a psychiatrist twice, and told me they had children too so completely understood! Go complain, some people should not be allowed near a hospital.
I have finally escaped however although after two weeks stupidly lying in bed and not exercising, can hardly walk! Butt so nice to be home. Hope you are there soon
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Bosco, Good to hear you are home. If frustrates me to hear what you and Patty are and have been going through. Speedy recovery to you.
Patty, Relieved to hear you have good nurses now on board and can get the pain meds and medical attention you need. Hope tomorrow you can go home. big hug to you
Rachel, Precious picture of you and your daughter.
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Bosch, YAY, i am happy you are home. Take it easy for a while. It will take time to regain your strength, so don't overdo it. While you relax and recover, I will dance, dance, dance the happy dance for you. WOOHOO
Lynne
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patty, sorry for what you have been through. That sounds like a call to Arkansas dept of human services. They have a division for adult neglect or mistreatment in a hospital or any facility. Sounds like neglect was involved here. There number is 800-482-8049.
Mary Anne
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Patty, I say we all gang up and beat that nurses ass! Keep complaining loud and clear!!! Bluefrog, love your picture! I also cannot tolerate the prep for the scan, I had a couple without oral contrast, just IV contrast. When I had my scan last week, the tech introduced me to what they call "iced tea". Oral prep that tastes really just like iced tea. Only downside is that you have to drink it there at the facility one and a half hours before your scan. She let me taste it so I will definately try this next time. Cristina,sorry that you are going through a rough time right now,hang in there
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Bosco glad you are home.
Patty, I was ICU nurse for 30 years,her behavior totally inexcusable, have a chat with director of nursing and pts care representative. When you get home report her to the state board of nursing, no patient should have to put up with such incompetence. Make sure your primary Dr is also aware. Hope you get home soon.
Marilyn
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Patty as when all this crap isn't hard enough without incompetent nurses. Good for you for sticking up for yourself..you go girl. Hopefully tomorrow you will be going home.
Yeah Bosco home sweet home☺️
So I just had my first visit with a radiologist. I did not know that bones can heal that made me feel a lot better about my current situation. I need to get out of this funk I'm in not good. So I mentioned that I had had a bone scan on Tuesday and they had no idea. One hand doesn't seem to know what the other is doing. I will get very loud I think in future. If they would have cut it out last summer would I be in this boat now? Idk hate to think of all the missed opportunities to expand my lifespan .
Wendy
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Party, you are not whining. You have been through hell. Complain to everybody. I am sure your state also has a quality management division that takes complaints about hospitals and other medical facilities. I will join the kick ass team! That nurse has to go NOW. Write the hospital's board of directors or trustees. You have the text written. It's all there in your post.
I am very tired, but I do want to say that I asked the Quality Management officer at the acute care hospital to request that the medical team quit focusing on my mother being "very sick" from mbc in bones and liver and start concentrating on helping her heal from her collapsed lungs. I said I did not want to hear anyone else inform me that my Mom has mbc as if I didn't know and had to be reminded. I pointed out that the oncology group was thrilled with the same liver scan the doctor at the hospital is using to prove that my Mom is "very sick." I am very sick too of hearing crapolka. My mother feels that the hospital is not giving her treatment. I think she is picking up the "very sick" vibes and feeling neglected, depressed, lonely, and isolated. I complained about the pastor sneaking into the room. I made sure all my mom's meds are correct and I added an anti-anxiety med prescription that my mother takes PRN, and the nurse said she would ask the doctor for orders. Tender mercies that the doctor allowed her to keep taking letrozole. I found out that the hospital neglected to tell us that we can attend a full team meeting every two weeks to ask questions about my mother's medical status. I will be there.
At my mom's request, I went down to to the wonderful gift shop and picked out some things to brighten up my mom's appearance - a coral pink long scarf and a very pretty necklace and earring set with some glitter and bling. I tied the long scarf around my mom's neck and put on the earrings and necklace. Wrote our church Bishop and the Relief Society President and said my mom has requested visitors and told them she is dying of loneliness. They are lining up church members to go see my Mom.
I want to tell this group about barriers set up to make it impossible to get a fully objective second opinion on my mother's medical status but I am beat. I have put in a phone call to the state quality management division to ask about the laws governing medical information as the hospital will not allow copies to be made of my mother's chart until she is discharged and apparently will not allow a consulting doctor without hospital privileges to read my mom's chart.
I feel so alone in knowing how best to help my Mom.
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