Bone Mets Thread
Comments
-
😪
0 -
I can't even begin to convey how much my heart hurts right now, I'm so sad about Dune. To think just 3 weeks ago she was pm'ing me and offering me insight on my acupuncture disaster and what I should do. She was so helpful and so caring. I had no idea of what she was going through aside from her cough. I'm still reeling over the news of Carla and Cathy. I just want a cure for this damn disease!!!
0 -
Bugger; didn't realise Cathy had passed as well. Just sucks! Too many lives lost to this crap disease.
0 -
Ellelou,
I am more than 4 years out from a stage IV dx and have never had chemo either. I did have a bmx and my bone met was found during an unrelated PET. So, the chemo I was scheduled to have when it was thought, briefly, I was IIB, was cancelled. In speaking with both my primary and second opinion mo's, about tx, both thought that radiation to the bone met and AI's were a good course, but chemo was a viable option. They presented pros and cons for each and I went with rads and an AI. My met is grade 1, so quite indolent. Chemo will always be there and I have had no progression. The rads to the bone met were done with intent to kill, as I had no pain or symptoms. I am happy that I took this approach, as my life has gone on virtually unchanged and chemo will always be waiting when the time comes to use it. I'm a less is more kind of person, and for my non-aggressive bone met, this made the most sense to me. Take care.0 -
I am sooo sad, really in shock. Like everyone here, no, I did not have a good feeling, but we still hope. She is so sweet, and was trying so hard to get better. Hope she is not in pain.
Thank you Linda for starting the ball rolling.
Dani says to me she tries hard not to get too friendly in the infusion room, she can't deal with one day THAT someone just not being there. It's too much.
Sue, not knowing the details of WHAT were they thinking, my daughter got chemo from the get go. To tell you that they wanna spare you?? Absurd. You want all and any chance you have!! How dare they measure how long you would like to endure or what you want to endure. It's your time. It may be awkward, but a good and honest convo I think is the right move. Wish you well.
Nothing from KendraS?? Hmm, i would have thought she would post something.
0 -
Hi ladies, a few days behind, I'm just reading back through your posts.
Patti, so sad you are back in the hospital, hope you are feeling better soon.
Very sad to see some of the names of those that recently passed and with Dune in hospice, this disease is just awful.
I wanted to jump on to wish everyone a merry Christmas and Happy Holidays! Looking forward to spending it with my family but timing will keep us from all being together at once. I am sad that my mom won't be able to see both my brother and I together. She's having some pain and the doctor said it's from her tx. Which is targeting the tumor, there'll likely be pain which means it's working.
Hoping that everyone has a wonderful holiday with loved ones and can push thoughts of your dx, mets, etc. Out of the way for at least a few days.
0 -
Ellelou, in addition to the excellent explanation Sue gave you... When we are dx'd at Stage I, II or III, the goal is to prevent the bc from going beyond our breast and axillary lymph nodes, in which case a short course of chemo (to kill any stray bc cells that might have escaped into the blood or lymphatic system) makes sense. But once it's determined to be metastatic -- either de novo or with a recurrence -- the likelihood of totally stopping it becomes very slim, and the risks-rewards ratio changes considerably because in order to keep our mets at bay we would need to stay on one chemo or another indefinitely, which is much harder on our bodies, especially our immune systems.
As far as your friend's daughter getting chemo before surgery -- neoadjuvant chemo is used for TNBC because it's been shown to be more effective than doing surgery first. It's also used if a tumor is especially large -- to shrink it before surgery. I'm guessing your friend's daughter's situation is one of those two scenarios.
0 -
I'm stage 4 de novo. I had chemo, followed by mx, followed by radiation to breast and singular bone met. Nothing else was even offered. I was told this was my best chance. I was totally NED for almost four years, and I think the only reason it came back was because I had 4 invasive reconstructive surgeries over the course of 14 months. I think different doctors have different ways... Plus, we are all different. Honestly, if I had to do it again, I would do it the same way. I wanted that crap out of me and fast. I think your response should be that every woman is different, every cancer is different and this is what has been decided is the best course for you. Maybe seek a second opinion just to ease your mind.
0 -
Momallthetime, and every other beautiful friend here, I have heard from my oncologist on the telephone this evening around 7 pm. I was, however, unable to write to you immediately, stunned into silence by the news of Dune. I couldn't bear to write of my good news. But, I don't want you worrying yet more, and I want to let you all know that the lump in my breast is not cancerous at all. It is a calcification that has been there, but has become more able to be felt, probably because I have been losing weight. My oncologist said there is not any reason to send the results to my surgeon, as nothing further needs to be done. My relief is monumental, and yet I am intensely sad that it could not have been good news for Dune as well. Thank you so much for being there for me.
Love, from Valerie
0 -
Thank you Linda for getting back to us about Dune, I am very sad to hear this news. I had read back on her last posts & I did fear the worst. If you are able please give her my warmest regards or if we can send them ourselves, I would love to send her a card.
Sorry I haven't read any other posts, I'm just gutted by this news coming on the heals of the news of Carla. Warmest thoughts to all of you here, Dee
0 -
Lindae. thanks for passing on the news of dune. I hate this disease. Lots of tears falling for her. Bbl
0 -
I am very saddened by the news of Dune. A little shocked also. Her most recent post around two weeks ago mentioned coughing, but no hint of hospice. Her stage IV diagnosis was made 16 months ago. I remember how I was impressed by her dry humor when she posted the photos of her enlarged lymph node under her skin, her bald head when she started chemo, and her one post in which she wondered if the time she has would be a lot shorter than she'd shoot for. I am heartbroken...however, people do come back from hospice sometimes...wish Dune comfort and peace.
0 -
Sometimes life is just not fair!! Thinking of all who are struggling physically and mentally ....wishing for peace.
0 -
Good morning all,
I haven't heard yet from Dune's niece. My cell phone is always beside me and as soon as I hear something, I will pass it on.
Sharon08 - I'm so happy to hear from you and glad you're doing better emotionally.
Valerie - Monumental relief indeed! YAY for the good news.
Patty - How are you? Are you home or still in hospital?
Lynn - I hope hubby is recovering well? How are you holding up?
0 -
Valerie, so glad you got good news. I guess then it's what's called macrocalcifications. You could see that on the mamo report. Those don't need to be biopsied. I never heard it has any reference for how much weight one has. Microcalcifications need usually to be biopsied. My other daughter had that, so she goes for more check ups. Thank you so much for sharing.
0 -
First, Can someone explain hospice to me ? Isn't it just round the clock nursing care? What's the difference between palliative care and hospice? I know hospice is often the end....but not always?
Second,it's brutal when one of us dies, for two reasons. One, we have grown fond of that person and their presence here on the boards. Second, isn't it just a reminder that we are next? Aren't we all going to go, one by one? Isn't that the nature of our disease? Why should anyone be surprised? Sad, I totally get.... Surprised ,I do not understand.
0 -
Hi Everyone,
I too am a little shocked about Dune...and very sad. Valerie, I'm so happy you got good news. Patty, hope you are at home today with your all your men.
Emotionally this has been a tough month...a lot of loss here and on FB. Hope everyone can enjoy the next few days. Dana
0 -
Stefajoy,
I am no expert,but here's my understanding of hospice. Hospice care can either take place in a facility or at home (my sister passed at home and had home hospice care), generally those who are given 6 months or less to live may choose hospice care. My sister was actually in a hospice facility and was doing so well, at one point, that she was discharged. Hospice may provide other support and services to both the patient and family (counseling, respite care etc.). When my sister was in home hospice, they helped bring in durable medical equipment and visited 1-2x a day. When my sister was in the hospice facility, things were more hospital like, but still homey. Palliative care, by itself, is simply treatment without curative intent, but the patient will have a much longer life expectancy than those referred to hospice.
Yes, I suppose that most of us will succumb to bc. For me, the surprise comes when someone doesn't seem to be on the brink of death, yet there they are. I am always hopeful, yet sometimes , though not always, surprised. It just seems to happen so fast for some of us, yet not for others. The unpredictability is the surprise, for me.
Take care, Caryn0 -
Stefajoy,
I have two experiences with hospice. My uncle died at my parent's home and the hospice nurses visited him daily to check on him. That was what he wanted. He was moving around ok but one morning didn't wake up.
My mom on the other hand was almost comatose in the hospital and I guess they knew she was dying and it took the family a bit of time to come to terms with that so they convinced us that she need to go to hospice since they knew we really couldn't handle her at home. Hospice turned out to be a really nice house near the hospital in a neighborhood. The room was lovely decorated with quilts and the staff was awesome. She lasted about 3 more days and I stayed with her in the room till the end. I have heard that hospitals don't like people dying in them and that makes some sense to me because there was no bed shortage, however, the hospice was a much nicer place for the family to hang out while mom died. A lady came by and played some old tunes from my parents era (WWII) and my dad liked that.
0 -
Thanks to Sue, dlb823 (Deanna?), exbrnxgrl, for helping me understand the different tx that we go through.
Ellen
0 -
thank you ladies for clarifying. Caryn, I know what you mean about seeming so healthy and then suddenly taking a turn for the worse. That's one of my biggest fears. You are ok, you are ok, you are ok.... Then you aren't. The whole thing is unnerving. I'm very sad about Dune. I know she is still with us for now, but I'm not sure how many BCO friends deaths I'll be able to take before i wont be able to come here anymore.
0 -
Stefajoy,
Sometimes we do need to take break from bco, especially if there are a lot of losses in a short period of time. I have been here since 2011 and stage IV except for a few brief weeks. I came to the stage IV forum with the knowledge that death was the likely fate for all of us, so that's how I cope with it. Not easy, ever
0 -
I spoke with Dune's niece. Not sounding good. Send prayers and good thoughts.
0 -
Hi all, I've just heard from Dune's niece. Here is what she wrote: "This week has been quite hectic. I spoke with my grandmother and she very much appreciates the sentiment but doesn't think Charlene would recognize there are flowers present. We do appreciate your lovely thought. She's in hospice and there is not the expectation of her leaving."
0 -
weeping 😢
0 -
Thank you both for keeping in touch with dune's family. All I can hope and pray for, at this time, is that she is at peace and pain free. Whatever the end of her journey may be, that is all I can hope for
0 -
I am also very saddened about Charlene. My hope is that she is having no pain and is resting comfortably. Tears and sadness for Charlene and her family and all of us right now. I am reminded of a quote my friend gave to me. "Grief is the purest evidence that we have loved and loved well."
0 -
lindalou love that !
I am getting discharged. So excited. !
0 -
great news Patty!
Beautifully said Lindalou
0 -
YAY Patty!
0
