Bone Mets Thread
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Patty I'm so glad to hear you are home, rest up take care of yourself we miss you🤗
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Great news! Thanks, Linda!
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Rachel, you look so happy in NYC!
Christina, I can't help but smile at your son's expression.
Linda, thanks for letting us know about Patty, and if you are reading this Patty, welcome home.
Anyone hear from Myra? I'm getting concerned.
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Hi all!
Rachel, love the pic!! I don't know why you would wait until Easter to stop wearing hats etc, you look adorable with short hair.
Cristina, Your son is so cute. Angry about wearing stripes?? Too funny, a fashion diva at age 4.
Wendy, PCP was going to write a letter because the phone messages I've left don't get logged onto my records, where as a letter by a Dr would. Nothing to do with being mad, polite or Canadian. ;-)
DF, glad your mom is finally home.
Linda, thanks for posting about Patty. I hope she gets over this soon. I feel so bad for her, she's had such a battle. Do give her my best thoughts for a quick recovery.
After waiting for a return phone call for 6 weeks, MO finally called regarding the POG, Personal Onco-Genome project which is happening here in BC. While technically I qualify, it requires 5 biopsies which she doesn't think would be good from bone only. They like to do them from liver, which I don't have liver mets. Then some of the drugs that are recommended by the program aren't funded & because I don't have supplemental ins it would cost me about $8,000 per month. So, we're going to stay the status quo at the moment, especially since I'm stable. And I can go through all the AI's & one level of chemo & still qualify.
All the best to everyone else, cheers, Dee
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Cristina- he's so adorable! Happy Birthday to him. Enjoy the day!
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I always fall behind on here! Glad Patty is out of the hospital, I hope you get some energy back very soon and start feeling better. I hope the rest of you are are enjoying your week.
My mom (also named Patty) had blood work and treatment done today. Tumor markers way up, still rising and doctors aren't going to biopsy her liver to rule out cancer. Instead, she's coming off the hormonal treatment and will start Xeloda in a couple weeks (right before Easter). I know there's parts she's not telling us because my dad is indicating it's pretty bad to already have all hormonals ruled out just three months after diagnosis and straight to chemo hoping it works wonders and it can get her stable soon and for a long time. I think it'll be tough as she's never had chemo before and even though it's pill form, she's so tired at 57. I want so badly for her (and all of you ladies really) to make it through to the other side. And NED for a long time.
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I am up to date on all that has been going on here. It took quite awhile to read it, but you guys were on my mind all the time, so I just had to. Dani had to have rads to the mandibular area asap, due to some extreme pain. And now her vision is poor again. So next week to opthamologist. TM's are down a point. Is that even counted? And so it goes. If I were to ask for scans they would do it by now, it's been 2 mos, but we will wait to see how the Ibr/Letr is working.
Suefit I've been looking for ya. Well kinda. It's just that I started a thread for "triple pos.mbc w mets to the bone in tx with Ibrance/Letrozole". And so far only Pearlady is on it. With my daughter's status changed from Her2- to Her2+ and almost ran the gamut from all other txs, Onco put her on Ibr/Letr using Ibrance as off label. I spoke to Pfizer and they said some doctors were doing this. No studies on it. So maybe you could join that thread also, Pearlady for sure would be happy. My daughter is very young, bone mets from the skull through the whole bony body. From the C spine down to sacrum. Pelvis, Ilium, ribs you name it. So I understand progression. And she was advised to have an oophorectomy a long time ago, not only due to the estrogen, but to be able to take many dif drugs that are given only to women who are menopausal. It was done laparoscopically and I must say she is glad she did it. I would be interested to know how your onco explained to you the fact that you are taking the Ibrance being Her2+
LindaE thx so much for keeping us informed on Patty.
Deanna I was reading your intelligent comments on DNR and then how everyone almost joined in the choir. I must say I thought so too. It's very true that her vivacity towards the kids, and sense of humor she has a way to go. Of course, she has the right to make her decision, we all know that, but you and all others that joined in tried putting it in prospective, and I think it meant a lot to her. It's a known fact, as I mentioned here in the past, even substantiated by the medical community(that will have the guts to tell you the truth), once DNR, they DO NOT pay attention to the person, and it's no fairy tale, that it's only CPR that they won't do, they won't put the person in ICU (which might help sometimes), they won't even look much in that direction. It's a fact. I also read from very well known medical authors in their books. I also went thru this with my own mom, yes, she was definitely dying, and mom and us did want DNR, but the way they went about it...
The soft pad you bought is such a good idea, Dani bought the softest mattress, it's a horror for me to sit on it, i wish I would have thought of your idea. And btw, Dani lost about 3' in height.
Valerie happy birthday young lady. We miss you very much. Good for you for being your advocate. I am just reading a book " The Patient from Hell"(how I worked with my doctors to get the best of modern medicine and how can too)Yep it's a mouthful, from Stephen H. Schneider MD. He himself had a cancer dx, and how he was always doing research and even being in the medical field, how much was put over his eyes, and how he relentlessly made sure they were taking care of him the right way.
Babs fantastic news!
Lynne how are things with Hubby now?
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Lindalou so many relatives with mets, it's insane. And they still don't have the right connection for you.
Wendy, oh how insane the loops you have to go through. How is your sister? Well, you are thinking about your daughter, in the States, they say that a sib should have a mx at the same age as the other sib had the original dx. So my 2 girls, each had a mx at 25. That's when D was dx. And for some very absurd reason, beyond our belief both at different yrs at the first baseline mx, had some scares. MRI and sono followed, then biopsies. Stereotactic guided biopsy for both. Doc says it's just a fluke. D does not have the BRCA1/2 gene. Incredible as it sounds, Doc assures me it's just this one in a million situation. Well it's one in a million that a young lady w no fam hx get bc at 25 to begin with. I honestly sometimes can't think straight, now they go every 6 mos for follow ups. Actually, they both had checkups just a few wks ago, trust me it's scheduled a diff times, otherwise we'd go insane, literally. They are holding their own. We pay out of pocked for these services, bcs it's done in a private practice, them being so young, I would like them to be treated with kids gloves, and we get answers on the spot, and if we need MRI or Sono which they do it's done immediately, even the biopsy for one was done in the same day, for the other was done the next day. So it's a reality about you thinking for your daughter.
Bosco how have you been coming along? So glad you over the misery of the Hospital. It's bad enough to have to get there, but to have to put up with obnoxious ppl and ignorants that's more than one needs.
Dee you were so right about the DNR. Why do think would take so long for them to get back to you re genome thing? How could that be acceptable. So now, are you doing something else? I understand that the genome thing is not happening, right? Can I ask you, what are you aiming at?
Maria -Spain so glad that mom is doing better. You are so terrific trying to find the answers to get her better, how nice to see this.
Cristina what a cutie! Love that he has personality!
Rachel good for you. Hope Broadway treated you right.
Mary so sorry for the hard times you going through.
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Just got my TM's- they went down from 234 to128. Looks like Xeloda is really doing its job for me
Babs
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DecisionFreak you are the best! Did i tell you this already. What an incredible lady you are. Not only you going through your own hell but you have to work so hard to get things right for mom. I could not write but was keeping up with your saga, and saga it is. Oh don't get me started on those losers. My father was dying in the ICU, he needed morphine to be upped, I saw his heart beat going crazy on the screen, I called for the nurse many times, she finally said to me,I know your father and he does not need it, and I told her you know my father ONLY from 7AM, I know him from all the yrs, he never complains, this man is in agony. Agh, she finally gave it to him. They were afraid they were gonna kill him, not on their shift, u know what I mean, to much paperwork. I have a lot of nurse friends, there are many caring people but many are rundown, cynical, washed down.
The way you went about it it's exactly the right way. And yes, docs creep in at the dark hrs and make patient sign documents all the time. When they want the patient knows what's going on, when it's better for them otherwise, they will tell you the patient doesn't understand. It's so nice that you are in the rehab now. Lasix i think it's for sure an option. Walking will help too.
Maybe it's even a good idea for you to write things down, so you could keep up with all that's going on. I know that sometimes doc will ask us so when did she take this med or that, or any SE's, I write it down. I could not remember otherwise. Sometimes I have to remind them of a blood test that needs to be done, with you having to take care of yourself, it's just too much. And also, the BP from that particular day. If urine was passed or not etc... been there, done that.
But do take care of yourself too. I've learned that, actually from a nurse. Eat and sleep.
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Babs that's great.
DaughterLov it's so hard to know so much and not be able to help. She thinks she is protecting you but it worries you even more, maybe you could have an honest convo with her, now that she knows you know, if you were to explain that you imagine the worst if you don't know the small stuff. It depends on your relationship, it might work. Otherwise, just pray. Be there for them. At least she does follow the tx, does testing, and your dad is with her. Big hugs for you. Believe me i know the boat you are on. My daughter wants me to take care of the medical stuff, but i don't ask much about how she feels etc...she does not want it to be part of my life, but it's on my mind literally every second of the day.
Well I am glad i got stuff off my chest, I am so sorry that i did not address everyone.
Hope for a good night!
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WooHoo, Babs!!!!!!!
DL, hopefully Bab's great results will help you and your Mom and Dad not dread the idea of going to Xeloda quite so much. If it works when others haven't, it doesn't matter if it's #3 or #4 or whatever on the list. We just all have to support more research and hope and pray for more breakthroughs and fast tracking of new drugs to add to our list of options.
MomATT, I had to read and re-read your post a few times until I realized that you used "mx" as an abbreviation for mammograms, right??? Not mastectomy (the more common use here), I hope.
And yes, DNR has become such a slippery slope these days. Clearly it was originally intended so that we could opt out of being kept alive on a ventilator or by other extraordinary means IF there was little or no hope for recovery -- not just if we have a life-threatening illness. Now, it seems as though it's being offered or even encouraged by some docs to many sick patients for very different reasons -- expediency and cost savings. Truly disgusting, IMO, especially when depression -- which may be temporary when one is so sick -- and/or lack of knowledge or the lack of an advocate are frequently involved.
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great news Babs!
Thinking of all of you. Waiting at the airport to go home.
Hugs to all
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Fabulous news Babs!
MomATT, I don't know why she took so long, all I can think is that it is a brand new program here & the secretary mentioned that they had a meeting about it on Monday. I'll bet they didn't know anything. Just like the Gov't to announce something but no one has any information. I'm going to continue on anastrozole. I'm "very, very stable" according to the radiology report.
Daughterlove, so sorry about your mom. I hope this chemo kicks C's butt. It's hard for you not really knowing everything. I hope she's doing it to spare you, but boy, I'm not sure it is. Glad you stopped in, hope we've helped you even a tiny bit. (hugs)
Terre, Oh a few days at home after the "no tell motel" lets hope the one next week doesn't spoil you for anyplace else.
take care all, cheers, Dee
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Thank you so much for your support DLB, Babs, GG, Momal. I know I need to keep gently letting my mom know I am here for her and she can vent to me. She calls me her cheeerleader. Doesn't make sense to hide anything or treatments from me - especially if it happens to me someday. I've told her about some of you that have had good results with the Xeloda and eventually the bone tumors will shrink too (just might not happen in first 3 months). I think next steps is to help prepare both my mom and dad (so glad he is there for her 24/7) to cope with the side effects of the upcoming treatment plan. I think it affects my dad more than he lets on when he sees my mom sick or in pain and I know the side effects may get a bit worse now. She still refuses to share this with anyone in the family (her brothers, mom, coworkers, etc.) and it must be so hard for her to keep it this private.
Babs your Stage 4 resonates with me as you are on a simalar path (and time frame) as my mom so far and it is encouraging to see your tumor markers going down and things looking up!
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Thanks for your thoughts momallthetime
Unfortunately we were told she will probaly suffer frecuent urine infections due a fistula. They have to think how are they going to manage that, Last days in hospital were caused by this and yesterday it happened again, another urine infection, by luck she is now home
They say infections due a internal fistula are difficult to manage. They should do surgery but now wth the chemo they can not do it.
So sad and rugh days for us. I'm having very sad days for this new difficulty
At least I can see most of you are doing great so it puts a smile in my face
Maria
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Deanna wow so sorry to drive you crazy, yes! mamogram it is, i have a tendency of shortening words, this one got me in trouble that's for sure! Actually,breast surgeon was even against Dani having a mx - he said it's not proven. Bcs of her being so young at the time of dx I was happy with his verdict, of course, I always hope it was the right thing to do. When the mets came, it went straight to the bones, nothing on the breast. But I would have asked about an oophorectomy earlier, knowing what I know now.
Dee love the very very stable. Aww this is great!
DaughterL there is not enough paper to explain how complicated close relationships are. In my case, There was one time my daughter left the room and let me stay with the neuro surgeon for 2 main reasons, one- she did not wanna hear straight from the horse's mouth any details and two- she could not look at me when I would hear it. What maybe bothers her the most is that I have to know of this "monster"(it's how I call it) she knows intimately where my heart is at. We are very close, but I do give her a lot of room. We only talk about IT if she brings it up. I hope with time you are able to break the wall that Mom put up, it could bring you closer. Maybe you tell her that. She is probably in a lot of emotional pain and is not ready to share that. Your dad for sure needs support also, just listening is good sometimes. We try to give my sil a lot of support. I call and speak to him privately. Dani sisters also. I bought him a card acknowledging his hardships, he always puts up the good face when with her, and helps with kids at home and everything else. I don't know if I told you already, we also did not tell anyone besides our nuclear family. Not the school, we always jump in to be there if she can't, no neighbors, no friends, cousins nobody. Multiple and multiple reasons. First she'd hate pity looks Not her style. People would not understand how she could look spify one day, and be in bed the next. And for those that forget to ask how you are doing, we would get upset, if they ask too much, it would be cumbersome to explain it all. So there, some of the stuff. You are not alone, you are on this board, the ladies here will be with you.
MariaS querida I could feel your pain in seeing mom like this. First may I ask, how would she have gotten this fistula? Also, watch these UTI's closely, sometimes if a person gets disoriented or think they are someplace else than where they are at, could be a sign of UTI. Is she home now? Wish you well.
Patty hope you are resting well.
Warm hugs
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Wow, that does sound like a huge breakthrough! Thanks for sharing it, Terre!
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Thanks for sharing the article KiwiCatMom. I've been hearing a lot about immunotherapy for HER2 patients but not much about HER2 negative.
Another update on my brother. He's doing somewhat better. It's been 2 weeks since his infusion and he goes in again in ~10 days. But he finally went through with genetic testing and he came back BRCA2 positive. You would think since we both were diagnosed around the same time and age that I would also have the mutation, but not so. I even had two different panels that came back only with one unknown variance that is predicted to be benign.
So I've been reading about targeted therapy for BRCA2, like PARP inhibitors. Are those still in clinical trials? Is anyone here BRCA2 positive as well? I also read that carboplatin or other platinum-based drugs are more effective with BRCA positive patients than non-brca patients. I know Carboplatin can cause neuropathy but it's less than Taxol which was horrible for him.
Hugs to all.
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Happy Friday everyone, i hope some of you have exciting plans for the weekend. If you do, tell us all about it.
Today I found out that my oncologist is leaving the cancer center where I receive my treatment. I am really bummed about it. I cannot believe how upset I am. I really like him, trust him, and, I now realize, depend on him. He is easy to talk to and always takes time to answer all my questions. (Imagine hearing me scream, whine, and sob here.) I know everyone goes through this, but I am just not ready. I guess I have two choices, see him at his new location or see another onc at the cancer center. The phlebotomist told me which onc at the cancer center she thinks would be a good fit based on personality and attentiveness but his credentials just don't measure up to my soon-to-be-former onc. This all takes place on March 18. Ugh.
My DH was back at Brigham and Women's Hospital again, but this time it was a quick trip, just one night. His biliary drain started leaking in the middle of the night, so I drove him to Boston at 4:30 a.m. There was no traffic, so that was great. We went to ER, and Interventional Radiology took him and replaced the drain first thing in the morning. It went very well, no sepsis like he had when the put in the original drain. Of course now he has to wait another 6 weeks before it can be removed, but that's okay. Since his bilirubin had risen a bit more, the GI team decided to do an ERCP to check the stent in his bile duct. He had to stay overnight for that. They found that the stent was blocked, eroded, and infected, so they replaced it with a larger one. They wanted to keep him for another night, but we decided we would recognize fever, chills, abdominal pain, and vomiting blood as well as they would, so we went home. He is taking two antibiotics for another week, that's should be it. I suspect that the stent has been partially blocked for awhile, because DH is feeling better than he has since December. I am hopeful that he will be eating more and getting stronger now.
I had my Zometa infusion today. I am hoping for no SEs.
Patty, I hope you are resting and getting stronger now that you are home.
Cristina, happy birthday to your adorable son.
Valerie, belated happy birthday.
Dee, I wish I could work in my garden. We have had very little snow, but it is still too early for me to start turning things over out there. Do you grow vegetables, flowers, or both?
I decided to scrape the popcorn ceiling in one of our bathrooms. I must say that it is not difficult to do, but WHAT A MESS! I only did half of it. I plan to finish it up and repaint it this weekend. I will be glad when it's finished
Hi everyone else. I will catch up later.
Lynne
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Hi, everybody, I have written two posts and lost both of them. Now, I am tired so I will try again later to catch up.
My mother got very paranoid last year. I would find her in a huddled ball on her bed in the middle of the night saying that she heard music with a special message being piped into the house. After months of this behavior, my mother asked her sister and brother in law to take her to the hospital. She ended up in the mental ward where she was treated for a urinary tract infection that had caused sepsis and hallucinations and delusional thinking. Despite knowing that the psychiatric problems were due to a UTI, the hospital made an effort to commit my mother involuntarily to a mental hospital. My brother and I were not told by my mother's sister or brother what was happening. When we found out, we went to probate court at the eleventh hour and brought my mother home. It was about four days later that we took my mother to the ER for back pain and found out that she had Stage 4 breast cancer and that it had metastasized to her liver and bones. She would have died alone in a mental ward from mbc if we had not found out what was going on. I have discovered that there is a way to lodge a complaint about what happened to my mother. We probably will never know what roles her sister and brother played in this horrifying experience but we are convinced that they did have something to do with the fact that the hospital never contacted my brother and I directly to discuss my mother's situation, and we know the motive. We do not have anything now to do with our aunt and uncle and they disowned us when we bought my mother home. My brother and I have had no family support with my mother's mbc due to knowing that Mom's brother and sister betrayed her. The church to which we belong has been out only source of comfort and help.
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DecisionFreak, You have been through so much between your mother's experiences and your own. You are obviously a strong woman, but please make sure you take time to care for your own needs. You are still recovering, and it is easy to get run down quickly. You need to stay strong and healthy if you are to continue to help yourmom. UTIs are very hard on older people. My mil became very confused and listless with her last UTI. She is 97 years old and lives in a nursing home. It was only due to my sil's insistence that she was tested for a UTI. Really, people working in such facilities should be taught to recognize the symptoms. Unfortunately, many nursing homes are understaffed or have undertrained staff members. Although the basic regulatory requirements are met, the staff is often overworked. It is also easy to misinterpret the behavior of our oldest citizens. At least you are there for your mother and can and do advocate for her. Unfortunately, many of our oldest citizens do not have family close by or don't have anyone visiting regularly or don't have anyone speaking on their behalf. Imagine how things can go for them. I will keep you and your mom in my prayers.
Lynne
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Thank you all for your support always!
Lynne. You've been through one hell of a time between you and your DH. Hoping now that they found the stent issues he'll be back to normal ASAP. I hope the Zolets is easy for you to manage
UTIs are so hard on older people. My fil would hallucinate and think he was back in the army when he'd get one. Funny and sad at the same time
Terre thanks for the post!
Babs
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Good morning momallthetime
Thanks for your warms tips. Very nice from you
The thing is she suffers IBD, so this is the cause for the fistula. She is still on antiibiotics so she is almost fine (some abdominal pain from time to time due UTI).
I'll watch her carrefully to avoid that problems: I 've seen the next post from DecisionFreak as you say UTI can be tricky
I didn't tell her but I feel worried about stopping chemo due this cronical infection when chemos seems to be working (back pain has desapeared)
DecisionFreak, what a horror story. Sometimes bad news seem will never end but we have to go on
Hope you have a wonderfull weekend
Kisses and hughs to you all from Spain
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Patty, Hi there. I am thinking of you and praying that you feel stronger and better soon.
Myra, We miss you. I hope you are okay.
Hello everyone. The weekend is coming to and end here in the US. For people in some other places, it is already Monday. I hope you all found some enjoyment during the weekend.
I will post again soon.
Lynne
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Thanks to those who have asked after me. I am not sure where I left the story but l am the klutz in our family. After the confusional episode I got home feeling fine I thought,although my son says I wasn't myself,until a few days later piecing together what I've been told i had another fall. This time I don't think caused by drugs just carelessness although the jury is still out on that. I was found almost unconscious by my husband who thinks I had got up early to go to clinic and must have been there on the floor about an hour and a half. He had dreadful flu so had been sleeping on a different floor. He rushed me to hospital so they could bring me round and since then they have kept me in to try to work out what is going on so we can restart treatment. It took 2 days for me to recover full consciousness and power of speech and stop hallucinating. During that I had one more"episode " for which I am grateful for intervention. Scans at least showed stable from January although they were bad. Lots of doctors clustering - neuro, haemo, cardio, mo. Only now at 6 days later thinking I may be allowed togo home in a couple of days. Main problem is high BP still whilst there is a theory it's something called PRES. So lots of antibiotics and drugs. But nursing staff have been truly good this time. And I feel fine apart from normal indignities of hospital life. I will post a separate link re Pres.
Best wishes to all and sorry to have missed the lastseveral,pages.
For the lady with bloating I have the same and have been given a diuretic by doctor.
Hoping for pain free days and small joys for all
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Oh Bosco, I am so sorry about what has been happening to you. I had never heard of Pres before, but I did read the information you provided. Your experience must have been frightening for both you and your DH. I hope the doctors get to the bottom of things and are able to control the source of the condition. Don't worry about catching up on the pages of this thread. Right now you need to concentrate on your own recovery.
You are in my thoughts and prayers. Please let us know how you are doing when you are able to. In the meantime, just rest and get better.
Lynne
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Bosco, I too have never heard of this. So scary for you & your DH, hopefully you will be back home within a couple of days.
I hope everyone is having a nice weekend. I have company coming for dinner, but wanted to check in with everyone. I've not seen this thread this quiet for a while.... no news is good news? cheers, Dee
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