A place to talk death and dying issues
Comments
-
Iwrite, great post. Two things I find interesting here. First, Iwrite, it just seems like your refusing tests and procedures for your heart issue comes across as more acceptable to some than refusing cancer treatments. Am I way off base with that? I've found myself "ignoring" unrelated heath issues I may not have before stage IV dx.
Second, it seems that all a non-stage IV person has to do to reply to something in death and dying is post it in the steam room. It's been done several times in the last few days. I'm still missing the point of not allowing everyone in here. But I seem to be pretty good at missing the point.
0 -
Iwrite, Divine, Andi, your posts are eloquent and thought-provoking. In the movie "The Bucket List", the Jack Nicholson character says, miserable from harsh chemo side-effects "Somewhere some lucky bastard is having a heart attack."
When I was dx stage IV, I told my best friend that God knew his Type-A, hyper-organized child needed time to get things in order. I've done pretty well, with living will, trust, etc. all done. Some things I cannot do. Lita was able to pick out her coffin. I told my husband I just can't. He immediately said "Don't worry about that. I'll take care of it", which filled me with such gratitude and sadness it chokes me up even now to type it. Other things I thought would be hard were actually peace-inducing, like writing the program for my service. I loved researching bible quotes and favorite hymns and music that has meaning to me and family and friends. I love knowing when they hear a song it will make them smile and know I was thinking of them.
I've had the talk with my MO and know about where I am. I was deeply depressed for about a month, but came out the other side more accepting of my limitations and, frankly, what treatments and side-effects I am willing to stand. I am not ready to give up the fight now, but feel more at peace with my future-self making that decision.
0 -
All, great posts. I haven't done too much in the way of planning for my funeral. I have a plot picked out and paid for but nothing else. I need to start thinking about those things. It's just hard right now, I'm not ready.
Jaycee, I didn't understand why they kicked runor out of this thread either. There wasn't anything disrespectful in her post.
0 -
Hello to all.
I have a question and am a bit afraid to ask.
I hope you will forgive me if I am being ‘wrong’ by asking.
Jaycee, i didnt see , and cant find the report you posted.
You kindly replied to my question last week ......”And as the report I posted showed, there are many cancer drugs with a PFS benefit that do not extend OS.”I have been reading all sorts of reports like kaplan meier and I still dont understand!
I understand how you cant rely on successive treatments to work, but if your first treatment increases progression free survival, i still dont understand how it cant automatically increase your overall survival even if subsequent treatments dont work.
Eg. Treatment 1....’x’ time pfs
Treatment 2 ‘y’ time
Overall span ‘x’ time
if treatment 1 didnt increase the pfs surely you would get to the y time quicker?If this is too direct please say so and i will delete.
Please excuse my lack of brain power!
Thanks
0 -
Jaylea, there's a similar thought from the movie “Grumpy Old Men". Walter Mathau and Jack Lemmon’s characters meet up in the morning, and the talk about their good friend Chuck goes like this:
W: He’s dead.
J: What? Who?
W: Chuck!
J: Chuck?! How?!
W: Last night in his sleep
J: His sleep
W: Lucky bastard.
. 0 -
Treehouse I wonder if you're referring to the report I had posted -
"A really great paper was just published today in advance of ESMOAsia19 that talks about the problem of PFS being used as a surrogate endpoint and lack of improvement in OS. If anyone is interested in reading it, it will be available until January 10 - https://www.sciencedirect.com/science/article/abs/pii/S2213538319300724
The main point of the paper is that from 2009-2018, new cancer drug approvals have increased steadily from 5 in 2009 to 33 in 2018 BUT the percentage of approved drugs that improve Overall Survival has reached its lowest ever at 7% (that's a whopping 2 out of the 33 approvals in 2018). Of the few drugs that actually improved OS, in 2017 the median OS improvement was 2.8 months and in 2018 was 4.5 months."
I later noted that the paper pointed out that most of the drugs that showed no OS improvement were regular approvals, not accelerated approvals. I won't pretend to understand the lack of correlation between PFS and OS, I need to do more research on that myself.
I've been staying quiet about the recent drama while I lurk on the various threads, but since it's come up again I'm going share my feelings as someone who has been a frequent poster on this thread for the past two years. Many of the frequent posters find their way to this thread after having multiple lines of treatment fail, being given a very poor prognosis, being told it's time to start thinking about hospice,or wondering when it's time to stop treatment because it's all becoming too much. It's been a great place to talk about practical issues of planning for one's death, and share feelings and concerns with others who are going through the same thing. Tough conversations with very some very strong people. I found my way here after a Stage IV de novo diagnosis with IBC that was spreading so fast between the first sign of symptoms, biopsies, then staging scans, that my MO didn't think I would last 60 days if it didn't immediately respond to the first chemo we tried. He told my husband that he should call my family in, and that I should "get my affairs in order". I had a great response for a few months, but for almost two years now it hasn't responded to several different chemos, 68 gray of radiation got so little response that it couldn't even be declared a partial response, and Herceptin only slows it down without stopping the spread. IBC can be a stubbornly resistant b*tch. My MO is now very worried that there are already signs that my latest chemo is no longer working after only 3 infusions. I haven't had a scan with no progression since January 2018, almost two years. As shocking and frightening and life-changing as it is getting a Stage IV diagnosis, moving on to "chemo for life" and having multiple lines fail takes it to a whole new level, trust me. That's when the real panic sets in. I don't think it fully sinks in until you've had to do things like sign DNR papers in front of a notary while your husband bravely stands at your side, squeezing your hand so hard he might break it as he tries to choke back his tears. Sometimes I get insanely jealous of the "lucky ones" who get to do hormonals or Herceptin for years before moving on to chemo for life (I'm happy for you, but I'm still jealous haha!), and sometimes I'm so angry that I wasn't one of them despite trying to do everything right.
Every so often someone complains that the Mods won't make an exception and allow others to post to a thread clearly marked "Stage IV and Metastatic ONLY". I'm sure there were reasons this section was set aside, it's been that way for as long as I've been here, which frankly hasn't been long. But I do personally feel that this thread above all others should be sacrosanct and I'm glad to see the Mods enforcing it. Most of us here are dealing with dying now, not as an abstract concept or something we fear may happen sooner than we want. That in no way means that fears of recurrence or metastasis, fears that you may die sooner than you hoped (or may get hit by a bus tomorrow), wanting to discuss death and dying as someone who isn't actively dying now, aren't all valid concerns, and it doesn't mean those fears and concerns are "less than". They are just different concerns and fears. I think everyone is willing to overlook the occasional post with a question or messages of support, but when it becomes apparent that someone who isn't Stage IV intends to become a regular poster, it's not right to make an exception for one person without opening it up to everyone, and frankly if this thread were open to everyone it would have a different focus and no longer become the place of solace and hard discussions that many have relied on.
It's easy to think otherwise because we have many women on this forum who have been fortunate enough to survive many years, but the latest published 5 year survival rate for MBC is only 22%. The median survival is 3 years (29.7 months if 50-64, 38.7 months if 15-49). We've lost a few of our regular posters just in the past several weeks. Almost everyone who has been a regular poster in this thread since it started is now dead. Why do people find that so difficult to respect?
0 -
LoriCA,
I have been around for 8+ years, 6 weeks (yup, weeks!) at stage IIB then on to stage IV. I have seen this argument crop up 2-3 times. In the end, both the mods and the majority (but not all) stage IV members chose to keep stage IV participation restricted to stage IV members. It may not be what everyone wants but, in the past, it has been what the majority wanted. It does sadden me to think at that at 8+ years, I am a very senior member of the stage IV threads.
0 -
LoriCa, I admire how you managed to express my vague feelings into clear words. I am sorry the last chemo (was it Kadcyla?) may not be working, hope it is not the case. Thank you for being honest.
0 -
LoriCA,
I appreciate your honesty. I am sorry your treatments have not been working. You made some very good points. Even me being stage 4, it's hard sometimes to understand what people are going through after many rounds of chemo. I hope you find something that can slow the beast down.
0 -
Wow, just read the past 4 pages of posts here.
Ladies, I think in our various ways we are all terrified - mainly of pain, all justifiably angry in some way, all accepting our fate at some point in time and all dying, even if not right now because we are actually living with stage 4!
All of our views are acceptable as long as they do not hurt another, even if we don’t all agree with everyone else. I like that in this thread wecan express those thoughts, as this is possibly the only place for many of us to do so.
0 -
exbrnxgrl 8 years, 6 weeks is fantastic, and you are right that it's incredibly sad that it makes you one of the senior members. But I am sincerely so happy for you and wish you many more years! Andi, my HER2+ sister, is the one I'm really jealous of haha!! She's got 10+ years in and still going strong on Herceptin. It's an amazing drug when it works. Andi was my early inspiration and motivation until we realized that Herceptin alone wasn't going to cut it for me.
Anotherone, yes Kadcyla. Had a strong response after first two infusions, all of the nodes in my neck shrunk and my cough went away so there was good reason to think that at least some of the other nodes were shrinking too. But after the third infusion I developed signs that it either stopped working, or wasn't working everywhere because the pain of the tumor tangled in my brachial nerve has been increasing again. My MO wanted to stop treatment yesterday and rush a scan right now, but I asked to continue until after Christmas because I just don't want to deal with it during the holiday. My last two Christmases were so miserable that I just want to have this one in relative peace. He agreed as long as I call with weekly updates until my next appointment on the 26th. I've also had multiple symptoms of cachexia for a few weeks now (since my last infusion) and we're hoping it's just a bug that I'm having a hard time shaking, but he doesn't want to wait around if it continues (not that there's anything that can be done about it if that's what it turns out to be).
0 -
LoriCa- IBC is a beast and I am very distressed to hear that Kadcyla May not be working. I totally agree that having a happy Christmas time with family is paramount right now. I hope the time is lovely.
Hugs
0 -
Nkb it really is. We've made great progress in treating it at the earlier stages (3B or C), but haven't made much progress at all with metastatic because of the inherent resistance issues combined with the aggressiveness, and sadly the percentage of Stage IV de novo is much too high with IBC. I'm still holding out hope that I'm just going through a rough spot for some reason and will bounce back any day now, and can continue on Kadcyla because it's really not bad as far as a chemo goes.
Thanks so much for the hugs and good wishes. I hope you enjoy your Christmas too (or whatever holiday you might celebrate this time of year!).
0 -
Lori, thank you for taking the time to write out such a thorough post with your thoughts on stage iv posting exclusivity. It's a viewpoint I share and never could fully explain in the manner you have.
exbrnxgrl, thank you for you posts on the matter as well. You give clear answers and I always feel supported by them.
Why should those of us posting on a stage iv only section be made to feel defensive about why we want it to stay that way? That does not make me feel supported.I have a lot of anxiety and don't need the pressure or drama of being challenged on how I feel about it. There's a new section for stage iv open to all, and anyone can start a new thread there on this topic or anything else.
0 -
Divine,
You are more than welcome! We’ve known each other for many years and I feel what you’re currently going through rather acutely. I’m with you, my friend ❤️.
As to the stage IV issue, I’m with you there too. I hope the mods put an end to it quickly. It’s an issue that has only ever been raised by lower stage members. I can’t understand why they would not respect the wishes of stage IV members and why they would continue an argument that only creates stress and divisiveness
0 -
Lori-Thanks for expressing things so well about why a Stage 4 only thread is so valuable particularly for death and dying issues. The rage that has been expressed against those of us who want Stage 4 only threads has been disheartening. As Divine notes, anyone can start up a thread on death and dying in another forum so the outrage just frustrates and baffles me.
I hope that you bounce back and can continue on Kadcyla. Best wishes for a happy holiday season.
0 -
Lori, what you posted was very raw. Your acquainted with a level I couldn't dare say I understand.
This is a sacred space I have only encroached on because of my choice to refuse/decline IV chemo when that time comes again and to sort of work those thoughts out. Your point about the majority of those who have participated in this thread being dead only strengthens my reserve to be careful and respectful with what I say. Getting a Stage 4 diagnosis and being defiant about no more iv chemo in the face of those who have no choice but iv chemo makes me feel like perhaps I should reel back my soapbox speeches a bit, in respect even if my personal convictions remain intact.
I am thankful for this thread.
0 -
I don't post here very much. Don't want to face the issue, I guess. But I just wanted to say, good post LoriCA.
From a Stage 4 Member.
0 -
Thank you friends. I do regret playing a role in this drama and dragging it out even more. I had hoped it died down, and then got tired of seeing it still carrying on in multiple threads of the forum. I was crashing from pre-meds (ugh) so my tolerance for drama was less than zero and I guess I let loose. It pains me to see that issue is still ongoing and creating divisiveness on this board.
Rabbit please don't ever feel like you need to hold back on discussing your decision to not do IV chemo. I've enjoyed your posts and never thought of them as soapbox speeches. This thread has always been raw and real about exactly that type of thing - when to say no to more treatment. You are always welcome to talk about it here. We all face, or are going to face, some very tough decisions about our on-going care. It helps to talk about it. Decisions about treatment/no treatment are respected by all because we understand how difficult the choice is.
Much love and peace to all.
0 -
LoriCA, you are a beautiful, strong, articulate person, and your post breaks my heart with yet another reminder on the monumental unfairness of this disease. I don't have anything to say that could make it any easier for you, but I hold you in my heart and wish you a peaceful, surprise-free holiday season. And a new year with some glimmer of hope - you deserve so much more than what the last two years have brought your way.
0 -
Thank you for beautiful post and kind words Piggy99. I'm really doing okay, mostly just frustrated that I seem to be resistant to absolutely everything, and I hate playing that game of "what should we try next" every few months. Despite having a high tumor burden, somehow my body is still strong and my labs are still "perfect" (I've never even a had blip on chemo), so I know it's just a matter of finding the right drug that will kick it back for a while before I get tired of playing the game. My MO does a great job with my Quality of Life, that's been his priority to help me through all of this. I know that not all MOs pay enough attention to QoL issues, so I'm very grateful to have one that really does care.
I wish you all the best and hope your holidays are wonderful!
0 -
All of your posts speak to thoughts I’ve had in the past few weeks. I appreciate that you are all so articulate while I seem to be struggling to find the words I need to speak to my family. I am often confused about whether I want to try the next drug. A stage IV diagnosis has been for me a stage IV A,B,C etc. experience.for the past 2.5 years. Each new treatment gave me hope for QOL but the last 3 months have been bad. I’m tired of feeling like this but guilty when I see how you all keep trying and I’m ready to stop. My thoughts are all over the place.
But I thank you for sharing your thoughts and feelings. Wishing you all peace. Maire0 -
Rabbit, I echo Lori's comment about no need to hold back in your posts. You write from the heart, and it shows.
Marie, everyone has their own experience with mbc. Please treat yourself with tender loving self care, without judging yourself for deciding your own path. We are here to support one another, not judge someone by their choices.
0 -
I love this thread- it lets me say and read other people talk about pain, treatments, side effects, treatments not working, stopping treatment and death. There are very people I personally know who can handle a conversation about any of that.
music seems to help me figure out some complicated feelings. a friend of mine just sent me her new songs and one had the lyrics “ we walk together, we walk alone, we walk in circles, but, we’re all heading home”. A lot of her songs are about compassion and for me that’s the key. In the meantime I am walking circles0 -
thatslife: I have been a professional licensed counselor for over 20 years and a counselor for the past 30 years. So what I'm going to say to you comes from a professional/philosophic point of view. Take it for what it is worth to you. I am also 80 years old and dealt with MBC for the past 7 years. Finding a licensed professional with an expertise in death and dying. One who understands something about living with cancer and deciding on treatment or no treatment and living with the final last months. No one should be put through what you are experiencing currently. Feeling guilty coming out of a session isn't healthy and further having to defend your thoughts and feeling are self defeating. Hope this helps. Wishing you the best and I hope you will keep posting and listening to feed back on these threads.
0 -
I am so pleased to have found this site. Recently I was given a recommendation for a new medication because it looks like the one i'm on currently is working very little and my cancer markers have gone higher. That said, it is impossible to talk to friends and family about the process of feelings and thoughts of dying and death. From what I have read so far this sounds very much what I have been looking for. Part of my issue is deciding to continue with a new treatment : xeloda. However, my concerns are the side effects and other health conditions like copd. Between exacerbated episodes with copd and side effects of xeloda is it worth it? I can't find any thing in the literature that addresses this issue and nothing on this site. Any thoughts from experience (anecdotal) would be appreciated.
0 -
Nkb-love those lyrics-they say it all:
"we walk together, we walk alone, we walk in circles but we are all heading home."
They remind me of a very good pastoral care book for people who are dying entitled, "May I walk you home"
0 -
Thank you
I will continue to share respectfully I guess I want to talk about where I am mentally right now. I think many like me have expressed concern about the process of dying. What is it going to be like, how will my pain be managed, am I going to go crazy with the anticipation, where do I want to spend my last moments etc. I then remembered what Jaycee had said about visiting a palliative care team and really talking about things. I think that would really help me, to specifically talk for more than 15 mins about my cancer, managing my care once I "make the call" and what they can do for me to make it easier on me. Things like is palliative sedation an option, making sure a DNR is in place and respected, etc. I did take note of the link Lori had posted about Advanced Directives based on state and downloaded for mine. At my next MO visit I will be requesting recommendation to someone I can speak to about end of life, in regards to me and my situation. My MO and I haven't really talked about these things tho, I have made it known where my red line is.
My husband and I had a very frank discussion about me not wanting to do IV chemo again when oral therapies fail a couple nights ago after I was in the MRI over an hr for a scan of most of my spine due to increasing pain and mobility issues. Lumbar scan showed top of sacrum S1 which had multiple little lesions. Thoracic and lumbar are loaded but nothing noted in cervical yet. *sigh* and that's only my spine. Mets are everywhere in my skeleton except my skull and arms so far, I'm afraid one good fall and I'm like humpty dumpty. I laid out my case to my husband, gently, sorta feeling my way through, gaging on whether to pull back based on his eyes. He took my hand, kissed my forehead and not only understood but accepted it tho through many tears. I told him I didn't have the strength to be strapped to a pole forever. Granted chemo for Stage 4 is different, but if the aggressive stuff failed me so quick, how can I place my faith in the more "gentle" chemo..my cancer isn't gentle or behaving gently.. Slight progression in spine was noted but still remaining on TX to see if Ibrance just needs more time for me. Faslodex would be next. My husband and I had sorta spoken briefly before my cancer diagnosis about our instructions for the other should something happen, what we did and didn't want...no ventilator, things like that. It was really surreal to have this conversation again only this time it wasn't hypothetical.
I can really appreciate frankness and being raw. I hate beating around the bush or overdrawn bs. This is from a lady who when she saw The Hobbit was so annoyed at how long it took for Oakenshield to put the key into the sunlit magical door to see Smaug because it was so unnecessarily drawn out that I shouted in the theater "Open it already, Geez!". My little voice didn't reach many ears, but for the few people it did I noticed a few smirks and chuckles...I couldn't take it anymore! I wonder if I'll have that same annoyance at the end..."Oh get it over with already!".
0 -
I didn't know that there was an ongoing issue over letting less than stage IV MBC only join this site. I have been looking for a site that is willing to deal with death and dying, the fears and concerns associated with these very important life issues. The idea of having a place to talk out our thoughts and feelings, supporting communication and passing along helpful information related to dx, side effects concerns, how we as individuals are dealing with it has become so important to me. There is no place else to go as far as I can tell and from what I have read so far is so helpful, kind, considerate, supportive. I'm new here and looking forward to joining this community. It seems to me to be a stress reducing environment which I am in need and have been for about a year. Being able to talk about these real concerns in an environment without judgment, sympathy (had enough of that), constant suggestion for things to try, or have you tried.......? This looks refreshing to me.
0 -
Welcome, Gail1234
you've come to the right place to speak openly and freely, and we hope you find the support you're looking for here.The Mods
0
