Bone Mets Thread
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LindaE54, there is a wonderful exercise thread where people post their daily progress. I highly recommend joining the thread to anyone that wants reinforcement and motivation. I can post a link to it when I get to a computer.
It hit me hard last night that my mother suddenly got better when my brother and I began asking the staff pointed questions about her progress and treatment. My mother has great health insurance and that acute care hospital was using her mbc to justify her status as a "very sick" woman who might be incarcerated there for quite a while, maybe longer than expected, they told us. They are specialists in pulmonary disease not mbc and had no business using her mbc as a weapon. Not sure if I said the doctor conceded yesterday my mother might yet live a while longer. The staff thinks my brother and I are "aggressive." I caught the quality manager in a big fat lie but she doesn't know it. My experience is that if people are not nice to me that they are hiding something. It is very obvious to people that I am decent and extremely intelligent, and my brother and I nearly frightened the pants off the staff. They are used to locals that are frequently unable to find the words to stand up for themselves. I think the hospital realized they had better act quickly to assess my mother's real health status and get her out if she is medically ready for release before I figured out their secrets. I have already discerned their secret, that many of the patients are nearly comatose with nobody to serve as an aggressive advocate, and the hospital strings patients out and in the process makes them sicker than before. My mother was strong as an ox on February 4. The first hospital was astonished at her strength. Now she can walk about 8 steps. She has gone from about 125 pounds to 167 pounds since February 4 with nobody noticing but me. She is severely depressed. We never treated my Mom like she was a bag of sick bones and an infested liver but this hospital staff was told that she was in essence useless, and they treated her that way. Medicare has very sophisticated methods of conducting back door audits and so does BC/BS. I am afraid to turn the hospital in for suspected fraud as I think they would figure out quickly it was me and I might find myself in a burning house one night. I have never been as angry in my life as I am this moment.
My mother kept saying she would never come home. I was finally able to listen to her and know that she is always right when she talks about the quality of medical care she is getting. Those of you that suggested that I make a big noise, thank you. I think that the hospital is corrupt and could not risk being under outside scrutiny. I think my mother might have died in that hospital. I want to get her out as quickly as possible.
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Good morning to you all!!!
Great to hear Bosco is home. Congrats and keep getting better and better
My mother has been in the hospital for almost 10 days. Kind of infection after chemo sesions. She is home now. Good news is 1 month and a half ago she couldn't wake up from bed alone, now she can...so something is working. I think it is aromasin as she couldn't receive chemo for the last month.
Bone pain is almost gone
I try to read as much as I can so I want to share with you this publication that seems interesting to me. It is about how AI really work well in elderly women. It is not for metastatic cancer but regarding how AI work I think it could be similar (if not the same) for bone mets
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC325188...
At least my mother is getting better little by little I think because of Aromasin. My mother situation is a bit tricky as she has liver mets from colon cancer and bone mets from breast cancer but I feel optimistic on controlling bone mets to attack liver mets later by surgery
On the other hand Unfortunately here in Spain we also have bad experiences on doctors, nurses and so on.It is hard to say but that is why all of us must have as much info as possible.
It is quite difficult to keep the pace of all your posts, working long hours and taking car of my mom but I hope I can drop by here from time to time
I also wanted to ask Terre (KiwiCatMom) some info on her case as it seems quite similar to my moms, but couldn't find the time to think about 2 o 3 good questions about her previous therapy to control bone mets
Hope to keep reading good news from all of you girls!!
Kisses from Spain for all of you and special big hug and many Spanish kisses to Wendy: Come on girl I hope asap you start that new treatment that could give you all the best news!!!
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Maria,
Thank you for the update. It is wonderful to hear that your mother is improving. I know it is difficult for her and also for you. Her case is complicated by the fact that she has two types of cancer. You have so much responsibility and worry. The love you feel for your mother comes shining through in your posts. I am sure she appreciates all you are doing for her.
I have no experience with Aromasin, so unfortunately have no help to offer. I just want to let you know that I admire what you are doing for you mom. Make sure you take care of yourself, too. You are doing so much that it will be easy to get run down.
Sending you and your mom hugs and prayers,
Lynne
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Hi Lynne, thanks for your words
It is hard, very very hard to work,try to read and understand as much as I can about cancer to argue with doctors if neccesary and take care of my mom at the same time ... But believe me, the real heros are you that keep pushing and battleling against BC
Maybe our little experience can help to keep the faith , Two times I was said that doctors couldn't do more for my mother but struggling and arguing with the doctors, finnally made their opinion change.
Now my mother feels good almost great, so please keep the faith and keep pushing against BC. In this long road there are ups and downs....
Positive attitude I think is very important to keep our inmune system in shape to figth and also to pass negative news recovering our will to figth
Big Hughs and kisses back to the States
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Patty, Are you home? Did I miss a post from you? If you can, let us know how you are doing.
Lynne
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Hi All! Finally home again. Patty - hope you're home too! Bosco - happy you're home! Aurora - hooray! Wendy - Bugger.
Lynne - hope your DH's jaundice is under control quickly and easily and he enjoys his beef stew. Rachel -your daughter is beautiful and congrats to her (and you!) on her achievement. Deanna, Dee, Decision, Annie, Lindalou, LindaE, Maria, Mary, Amy, Cristina,,,,(that's as many names as my brain can hold today),,,and everyone - hope you have a fantastic day.
I went to a launch party for the Karen Louisa Foundation (http://karenlouisa.org.nz/). Karen Louisa was quite active on these pages, I believe, as well as the metavivors Facebook page. She passed away just under a year ago. Quite young. At any rate, her family and friends have started a foundation in her name and it aims to get better treatment for MBC here in NZ (faslodex isn't approved or funded here, believe it or not), promote research for a cure, provide support to MBC people, etc. They announced last night that they have already (the foundation started in Nov 2015) been able to give $46K to research here in NZ to a doctor studying with an international group to evaluate tumour fragments in the blood to test which treatments will work/are working the best. So that was awesome news. Almost equally awesome, I bought some raffle tickets, and won something! We won a night at the 5 star Bolton Hotel, a gourmet dinner, champagne... http://www.boltonhotel.co.nz/specials/91
I'm on a bit of a roll here...come on lotto!
Wishing all a great pain free weekend.
Terre
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Whoa Terre, Two wins so close together? You sure are on a roll. Keep it going! The hotel looks quite luxurious. Think of us while you enjoy your stay. No, on second thought, don't think about us for a single second. You work very hard and have earned a mini vacation. Relax, refresh, enjoy, forget the rest of the world. Let us know when you plan to go so we can dream about your wonderful prize. Congratulations
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Terre,
Congrats on the raffle win - I love staying in great hotels so I hope you enjoy your win. Thanks too for the information on the foundation. I hope it does well to honor a soul lost way too young.
Amy
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Great to read you are home Terre!!
Congrats on the best prize,....being home again
Take care. Whising all the best
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Thanks all! When I win lotto, I'll fly you all over here for a mini-vacation!
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Maria, I am fighting for my Mom too. I have breast cancer as well but am cancer free after two surgeries. It does come down to faith, to believing in your Mom, to pushing the doctors to provide the best care possible, and to learning about the disease process and treatments. Being my mother's advocate is a great privilege.
My mother has been in two different hospitals from lung collapse since February 4. Reading about your Mom's progress gives me the faith to keep pushing in a positive direction. We don't know if the MO will want to give my Mom chemo again. We are in a holding pattern trying to get the acute care hospital to release my mother as soon as she is medically ready to go. I have written in earlier posts that the hospital staff at this facility has very little understanding of mbc, and I have confronted the quality manager about the negative attitudes I have noticed towards my mother's cancer. I am 100 per cent in agreement with you that attitude is very important. We don't treat our mother like a cancer patient at home. We treat her like the precious human being that she is.
The BC patient and her or his advocate are warriors together. You are saving your mother's life through your love and support. Understand that you are fighting as hard as your mother.
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hello all. I've tried several times to post today but I keep falling asleep. Keeping this short. Iam staying at least a day or two o more my heart rate is staying over 130. Even uo to 142. Should be max 80 for women at rest. Hosoitalist Dr said this Ms in fact bevtge problem I've been having. The Dr - I've seen here several stays ,- reviewed by records and seen where Bp always bottoms out started a BP med. Hoping it's trbsnswer I am looking for.
Hugs
Bbl. All letters are double vision
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bosco. So ksd u r home. Hope u r well
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Party, I will be sending good thoughts your way. I hope the BP medicine helps.
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Patty, I hope they find the best treatment for the latest issue. I am praying that you are safely home soon.
Hugs from, Lynne
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Ohmygosh, DecisionFreak, that hospital your Mother is in sounds like it's out of some sort of horror movie! And interesting observation about people who are not nice to you hiding something. I'd never thought about that, but it certainly makes sense, although another thing I sometimes tell myself is... If you make it up (e.g. they're committing fraud because you're not happy with them), it's probably not true. Not saying you may not be absolutely right, but I think it will be best if you can just extricate her from there as quickly as possible. Are there no other hospitals where she lives? What about one where you live? Are you very far from her?
I was out of town today, working on my antique spaces, and had an interesting conversation with a friend with whom I share an interest in natural healing. She was telling me that she's recently gone on Medicare, and that one of the new docs she saw told her that Medicare will not let him treat more than one condition at a time. Not sure if that's 100% true or if it's specific to her two concerns, but it sure made me think of your Mom's situation, and I wondered if it is true, could that be impacting them not treating all of her issues?
Maria, I'm so glad to read your Mother is home and doing better! It sounds like Aromasin is an excellent drug for her.
Terre, congrats on the second win! What fun! I have to look at the link later or tomorrow, but you can't beat a 5 star hotel getaway! And that organization sounds like they're doing all the right things. I'll look forward to reading about them too.
Patty, I wonder what is causing your heart rate to rise so dramatically and your BP to bottom out? Have you looked up the SEs for whatever drugs you're on? Had you noticed that happening when you're at home? Surely you would be aware of your heart was beating at twice the normal rate.
Wendy, great news about the trial. Are you aware that ribociclib is the same as palbociclib (Ibrance) - a CDK 4/6 inhibitor? And Fulvestrant is Faslodex. So you'll be getting either Faslodex alone or with ribociclib, is that right? If so, I think that's great news! Even if you don't get in the ribociclib arm, Fulvestrant alone is very powerful. And if ribociclib gets approved and you didn't get it in the trial, you can add it later. I like your onc's thinking!
More tomorrow... Hugs to everyone. My eyes are starting to cross staring at the computer. Deanna
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Hi DecisionFreak
Just a few weeks ago our Oncologhyst said there was no hope. We kept pushing and finally she accepted that hormotherapy was an option, so please don't give up. My mom is much much better than she was just a few weeks from now.
If our example gives you a little more faith to figth, being here has paid off
As you said, we must be our mother advocates
Kisses to you all and a Special BIG BIG HUG to Patty, please get better soon!!
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Morning ladies,
I just wanted to say I am so glad to have you ladies to turn to. That's all
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Thank you Deana❤️❤️ your words are the first positive thing I have heard in three weeks. Thank you.
Hi Cjanet I hope you are doing well . Are you still planning on moving South? How is the pain management going I hope you aren't in any pain.
Terre you lucky charm you just in time for Saint Paddys day. Buy your lottery ticket then a double whammy. Lol Enjoy yourself you and your hubby deserve it.☺️
Patty how are you this morning? I hope they figured out what's going on with your heart rate. Crap I have a tough time getting my heart rate that high on the machines at the gym. Must be a SE from the drugs they have you on?
Wishing everyone a glorious Sunday I'm thinking of each and everyone of you.
Wendy
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Good Morning all
I am thinking of everyone, especially those with ill loved ones; Maria spain, decision freak, momallthetime, Lynn and I am sure I am forgetting someone so sorry. Wishing you all peace and reminding you to take care of yourselves.
Lindalou you are so kind and thoughtful to ask about me. I continue to enjoy the words "stable". However I struggle with the consistent hip pain that has been with me since last summer. RO says I have to be patient because met is on part of my hip that I sit on. Must say I am a little low on patience. My life feels messy as my son is struggling in school, my mother is in hospice with advancing dementia and bladder cancer and my cousin's husband is not responding to tx for stage 4 prostate cancer. Cancer Sucks!
So today I hope to enjoy a small hike in the gray but warming weather and look forward to spring and hopefully an attitude adjustment.
Love and Peace to everyone with greatfullness for a place to share all my feelings.
Mary
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Wendy, I woke up thinking about you and wanted to share one more thing with you that crossed my mind. Several months ago, it seemed like quite a few women both here and on the Ibrance thread were experiencing mixed scan results -- improvement in some areas, yet progression in others. This really bothered me because I didn't understand how that could happen -- how I drug could be working in some areas and not others. So, of course, I asked my UCLA onc about it, and was surprised when she quickly and knowingly nodded that yes, it's not uncommon. She explained that it happens because the cells in the area that is progressing may have changed to outwit whatever med we're on.. So she believes in retesting the cells in the area that's progressing, to be sure they haven't changed significantly (i.e. become TN or Her2+, if previously neither of those in the past). I don't know if this is applicable to your situation, or if your onc has already discussed this with you, but it's just something I wanted to share because I think it's important to consider.
Happy Sunday to all. More later...
Editing to say... Mary, looks like we were posting at the same time. I'm so sorry you have so much on your plate right now. I hope the hike will help refresh and renew you! (((Hugs)))
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Deana you are so sweet, I had thought of this and asked my oncologist about it. She thinks it's acting like a hormone receptive type cancer but if I feel strongly about it I could get a bone biopsy if I really wanted too. I have heard these are very painful with mixed results but I of course would try it. So she left the ball in my court ..again.
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I just wanted to pop in & say hello to all here, especially those having issues with themselves or loved ones today.
I am still flu-ish from my infusion on Friday, but at least the chills have subsided. I am hoping to get my thyroid results tomorrow & I am going to talk to my PCP about MO that hasn't bothered returning my call after 5+ weeks about the personalized genome study going on in this province.
Wendy, I had a bone biopsy in my sternum, it was not painful at all, we left on vacation immediately from the hospital & it was absolutely definitive in hormone status. Now I know that everyone is different, but just wanted you to know that.
Patty, I hope you're feeling better today.
Hope everyone is having a relaxing Sunday & that your weather is better than here. We don't have snow & ice, but boy is it an ugly rainy, windy day. Time to snuggle by the fire. Cheers to all, Dee
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Hi, I am writing this for my Mom. Has anyone taken Monurol for superbug uti, and Capecitabine for chemo together? My Mom has metastatic breast cancer that spread to her bones, and liver. Monurol is from Switzerland so most Doctors tell her they do not know anything about it, but I think it is because they do not make money on it in the US. I want her to start the chemo, but she is afraid to mix the two right now. Thanks!!
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Good Sunday to everyone. Dee, you mentioned an ugly day, we're having a day that can't decide what it wants to be. I woke up to sunny and warmish. Even went to church without a coat, just a sweater. 90 minutes later, it looked like a blizzard and 20 degrees colder. I parked rather far away to enjoy the walk earlier and then suffered all the way back.
I do hope everyone has an enjoyable and pain-free day. Patty, I pray you can get home very soon. My three day hospitalization last week about drove me crazy so I have much sympathy. Hugs to you.
Amy
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Wendy, like Dee my bone biopsy was fairly easy. I was given the Michael Jackson milk (propofol). No pain during and not much following. I did wake up during the biopsy and they pushed a little more. I hope you have an easy time if you decide to go that route.
Mary Ann
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Wendy,
I had a bone biopsy and no pain at all. Liberal doses of good drugs , Versed and strong pain killers given by IV and locally, made all the difference. During the procedure, I was asked at regular intervals about my pain level and, at one point, felt some discomfort so meds were increased. If you feel a biopsy will help, ask about pain management. For me, it made all the difference and gave me an exact profile of the bone met
Hope everyone has a good Sunday.
Caryn
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I should add, that Versed does not put you out. Rather, it relaxes you and makes you not care (cut my legs off? Sure, whatever 😉). It also has some amnesiac properties, so afterwards, although you think you remember everything, you may not really. It also totally distorts your sense of time. I once had it for uterine ablation. The procedure took about 2 hours, but seemed like only 30 minutes to me.
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dlb823, I know for a fact that the hospital staff lied to me. I went on the site for the State Medical Examiners Board and confirmed an outright lie. As for fraud, if someone suspects fraud, Medicare and BC/BS will check it out quietly if they think that the situation warrants it. I have seen what appears to be fraudulent activity from some of my doctors in the past and have been afraid to check it out or report it for investigation. I don't know for a fact that the hospital is committing fraud. It is a feeling that I have. I have disliked hospital staff before without feeling that fraud is being committed. If it is not fraud, then it is horrendous care both physically and emotionally, and we are working to get my Mom out of the hospital ASAP. My brother and I have said the same thing about the hospital being like something out of a horror movie. My mother lives with me, and there is not another medical facility that can address her lung problems. I called the rehab hospital today, and the rep is going to speak with my Mom's case worker at the acute care facility. The acute care facility is supposed to be treating my Mom's lung collapse, not deciding that she is a hopeless case based on her mbc scans.
Maria, my mother is on letrozole (Femara), and the acute care hospital allowed her to remain on it. It is the only treatment right now that has the potential to push back the mbc unless the oncologist decides that he can safely give my Mom chemo again. I hope the rehab doctor will allow her to take it if we can move my Mom soon to a rehabilitation facility.
Those of you who are in pain, I am sending out positive thoughts. I hope everyone finds some way to enjoy today and to have faith and hope that tomorrow will bring new possibilities for healing. You are such a wonderful group of people to have taken me and my Mom into your hearts.
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Hi all,
Mary - my goodness you have a lot on your plate. Sending hugs and hope the hike helps.
Patty - hope you're getting the heart thing sorted and are home soon.
Decision - wishing you luck with the hospital. Sounds awful.
Wendy - fingers crossed for your new treatment plan. It sounds like a good one and I think it will just kick that cancer to the kerb!
Dee - Burr. Amy - Burr. Don't miss South Dakota (where I grew up) at all this time of year. And Minnesota has similar weather. If you don't like it, wait 10 minutes and it will change.
Deanna - how are you doing?
Hi to everyone...waving from a lovely Monday here in NZ!
Terre
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