A place to talk death and dying issues
Comments
-
Mmmmm. This is interesting. I always had suspicions that the onc may have been gilding the lilly! I formulated my theory on what i thought he had said...good longevity, cdk4 inhibitor will slow it down , and if it does progress, maybe their will be something else on the table to kill it by then.
Perhaps i misunderstood, or perhaps it was a hard message for onc to deliver. Maybe its because i have just had mets in sternum thus far?
Its odd though, because right from the getgo everything i have read contradicted this!
Thankyou for explaining. I much rather be told how it is...makes it easier to plan.Much Love to All
X
0 -
Exactly, treehouse,. I don't get people who want to be lied to but I think some do. And do doctors lie? ALL THE TIME. Do they think we are stupid? Don't they know we go online and find the truth easily? They think they are protecting us but they are really protecting themselves.
0 -
This makes me wonder, if first line is best chance in life extension why does progression after first line begin a domino effect toward further treatments that add possibly only months worth of time a piece but have more chances for worsening side effects/QOL? Why is the emphasis on PFC and not OS? I get everyone is different and everyone responds differently and we have the right to make our own choices with regard to treatment, I just wish this sort of thing was talked about more. More honesty.
0 -
PFC? Can you please tell me whatthis stands for.
0 -
PFS = Progression free survival
OS = Overall survival
hope that helpsHi helenlouise!
0 -
Do you ever wonder how much time you would have left without taking any treatments? I never thought to ask my MO when I was first diagnosed.
I wonder sometimes if the final phase of dying will be quick, or slow and painful.
0 -
Rabbit, the vast majority of people on BCO would do ANYTHING to survive, even for a few more months. Even feeling like total crap. People are young, have young kids, have fantastic lives of fun and luxury. They really want to live on forever. They think they might if they keep "fighting" and almost kill themselves doing it. We SAY we won't do that. But I need to point out that when the shit hits the fan, all that goes out the window. Your cancer is putting you in a lot of pain and your doctor says, "We could try this" and you might just jump on it. Who knows what any of us would do in that situation. All I know is that when I am in pain, I chase after whatever might make it stop. I have a headache. WHERE'S THE TYLENOL??? After you say yes, it becomes a trudge from one tx to the next running from the pain. That's what I imagine. I'd like to avoid that but I can see it happening. We think we are all high and mighty considering refusing treatment but can we really do it in the face of family and doctors and pain. I just don't know. If I lived in a death with dignity state or country (Canada), I'm pretty sure I would go that way.
Simone, I remember something Dr. Raza said in The First Cell. She said that dying of cancer when the cancer is killing you is just as painful as dying of cancer when the treatments are killing you.
Just for the record, PFS is progression free survival.
0 -
I'm not sure doctors lie exactly. Mine doesn't. But he will often 'omit'. Or not tell me his reasoning unless I remember to ask.
The ladies on these boards are a special breed of cat. We're the ones who want good information and want to make our own decisions using that information. Apparently we're about 5-10% of the cancer population.
We had a young man in our office with liver cancer. He couldn't even tell me the name of the drug he was on. He just took what the doctors gave him. And he was a smart guy, so it wasn't that. I think he was just so overwhelmed that he didn't want to know.
And I've definitely run into people who don't hear what the doctors say. I kid you not. "hear what you want to hear and disregard the rest. . ." A really smart and medically educated woman. I was getting these e-mails, sigh. I finally had to write to her boss (an MD) and ask what the heck were they telling her? They were telling her -- she didn't want to hear it. She wanted to believe that because the scan was clear she was cured. And why should she continue to take this chemo stuff anyway? (she did -- she wasn't that far gone into la la land)
0 -
Hi Pajim, just out of curiosity, when you say she carried on with chemo as she wasn't that far gone....am i to think that you mean that she would have to be a bit lala not to carry on with the chemo.?
if this is the case I am trying to square uo that view with the new (to me) info on here, saying ( i think) , treatment doesn't always give you a massively better survival outcome, or quality of life.
thanks TH0 -
Treehouse, you asked what I was thinking, thank you
0 -
I am not (that I know of) metastatic. But death is on my mind. All. The. Time. I have to be honest and say I am not a big fan of death. I'm scared. Mostly I'm sad. I hate the thought that I will be ripped out of the action far before I tire of what's going on. I always want to know what's going on with everyone. That I will no longer be part of anyone's daily life, that obliterates me. Drops me to my knees with despair.
So I read these threads with intense interest and concentration, trying to capture the nuances and views. Maybe read between the lines, try to understand what is and isn't being said. I try to suss out how sane people approach inevitable death.
Recently an efriend went through end stage pancreatic cancer. We wrote daily. It became...gruesome. It became horrifying to witness. She fought to live. She went to a foreign land for cutting edge surgery that bought her no time but relieved her of a lot of her money. Her ability to function went down and down, her pain and distress went up and up. She called herself a stinking, yellow, skeletal cancer ghoul. Said it was the thing she never wanted to become and yet here she was. And her doctors just kept pouring the chemo to her. While having mentioned hospice care earlier in our writing, she never did move to get it in place. Not until the day she vomited up the contents of her bowels. I think "I've just puked up my own sewage" was how she put it, then she finally went to the hospital and got the wheels for an assisted death in motion.
I witnessed this from one side of a computer screen. I was a safe place for her to say all the things that were not safe to say to someone whose face she knew. I was happy to be that for her. BUT.... at some point the fight to extend life turned into a fight to prolong a death. A long, ongoing, unending death. At some point, and who knows what that tipping point is, it passed into something obscene and unholy, something damaging not just to her but to everyone around who had to witness it.
In my dark moments when I let despair win, the only rope that I can cling to is that I HOPE I am able to think about those around me. I lost my dad when I was 26 years old. It was an ugly death. He suffered so much. I watched him go from the strong, black haired force of my childhood to a quivering old man in a diaper. It fucked me up for a long, long time. Death like that strips you of every last shred of dignity. It leaves you a victim to forces beyond your control. None of us can control getting cancer or where it goes. BUt I hope I remember that I do have some control over my exit strategy. And what I do not want is to leave behind friends and family struggling with a case of PTSD after having to witness the total destruction and dissolution of my mind and body in an ugly and hostile display of suffering and death. Fighting to the end may sound noble and brave and like you might be the victor. But you won't be. I feel that there is peace and dignity in the gracious acceptance of the outcome and part of that is knowing when to quit.
Will I know when to quit if cancer comes back? I don't know. I hope so. But I don't know for sure. Like Jaycee said, when it's death or a few more months of life courtesy of yet more chemo, who wants to choose death?
There is a sticky note on my wall, I can see it as I type, a quote from M. Scott Peck. "Mental health is an ongoing process of dedication to reality at all costs."
I hope I have the bravery and courage to face my reality. That doesn't mean I won't whine and howl. It doesn't mean I will refuse all treatments. But there is a bigger picture here than just my own personal death and my own personal feelings and I hope I can see the bigger view when the time comes. I read this thread to be lifted up by strong, strong women who are working to do the same. Dying is shitty. I hope my choices don't make it shittier than it has to be. I hope.
0 -
Simone - I read somewhere that the expected survival for breast cancer without any treatment is two years. And that applies to cancer discovered at an earlier stage.
The "journey" with no treatment at all is very very UN-pretty, though. You can google about it if it won't haunt you too much. You may be better off not doing so.
That may be why treatments are approved based on PFS as well the OS they can offer. Dying maybe just a little slower but with much less ugliness, horror and pain is okay by me.
0 -
pajim - yes, my infusion center nurses are always surprised when I know exactly what drugs I am on, what they do and when I'm supposed to get them. Some of the nurses have told me, we who know all about treatment are indeed rare. And when I went for radiation and they said (to check themselves) what are we doing today and I said "radiation to L1" they were practically applauding me because I said L1 instead of just "spine".
I also do not think my doctor is lying to me when she provides a somewhat optimistic outlook. She isn't telling me any fairy tales, she is relaying her experience with the patients she has now, the current research and how it applies based on my actual, individual situation. She has never said this disease is not terminal or that I will live forever but at the same time, I am not dying tomorrow, I have some good years ahead most likely...and as far as treatments, I think I get the facts there too. Risks vs benefits, etc. No two breast cancers are the same, no two individuals are the same in how different medications will effect them, etc. All a doctor can or should do is explain the possible outcomes and let you decide for yourself.
I don't like expiration dates. If I went to an MO when I was first diagnosed and was told well, you have X years (or months!) to live and that's it....I would have found another doctor. I don't want to be lied to but I don't want a Doctor Doom, either.
I don't think this statement is a lie: "We start with treatment A, when it stops working, we go to treatment B and so on...and maybe in a few years there will be new treatments coming out". That's what treatment for MBC is. Individual results may vary but that is how the disease is treated, am I wrong?
0 -
Sorry, I wasn't clear. She is HER2+. They diagnosed her de novo one Christmas and her liver was full of tumors. So they started her on H&P and Carboplatin. Couldn't do taxol because of the liver.
One year later she had no evidence of disease so they stopped the carboplatin. She needed a rest from it anyway. There wasn't any question of not doing chemo as she wanted to see her kids graduate from high school and maybe college. I was thrilled for her that she was NEAD but not so thrilled that she considered herself cured. I'd get an e-mail: "good news! My scans are clear, I'm cured! Must be because the nuns are praying for me" (I'm all for prayer, believe me, but I doubt it cures cancer)
But she did indeed keep on with herceptin and perjeta. When I saw her in person she did say she would take Taxol which would be next. Now that I think on it -- the whole thing was probably a coping mechanism. Wishful thinking and all that. We all do that to some extent.
If you go back a few pages -- quite a few it would be April or May -- you can read my rant about what happened to her this year. There was a series of unfortunate events related to a neurosurgery procedure. Her husband could not bring himself to pull the plug. She is now in a rehab hospital where she can't get out of bed or speak though she can understand people. She's been there near six months now. I need to go visit but I've had recent troubles of my own. Hoping after the New Year.
0 -
My family thinks a NED scan means cured. They were surprised when I then had to have radiation earlier this year. LOL I am not under any such delusion but they are. God bless them. I've tried explaining but if they feel better thinking this, hey, I won't keep wasting my breath.
Also, sorry to hear about your friend, pajim, what an awful thing to have happen while also Stage IV....I can't imagine. So sorry xo
0 -
I know what you mean Olma. I have several family and friends that just don't get it. I have been NED since Sept, and they don't understand why I still have to take I\L. I gave up explaining things to them and no longer talk about my treatment.
0 -
Jaycee,
That makes sense what Dr. Raza said. I guess how much pain a person has would depend on where the tumors are too.
Paijm,
So sorry to hear what your friend is going through. That would be a terrible way to live.
0 -
I’m the outlier here. It’s been 14 years since Stage 3. 2 1/2 years since MBC. Just finished 4 Taxotere for recent progression. I’m so tired and sick an weak. I’m looking ahead to saying enough After I try Kadcyla next. Jaycee, what you said resonated with me tonight. Do I just want to keep on treatments or do I just want to control pain.
I just wrote on the Kadcyla page . Everyone here seems to be facing how to deal with end. I’m old, I’ve had a good life but I’m still greedy to see my grandchildren grow up. But am I causing my family to suffer with me? I’ve been with my brother,my mother and my cousin when they passed. None of them suffered agonizing pain in the end. It was as if they were no longer in their body. With two of them I was able to tell them it was okay to go. We would carry on. They were peaceful. I want that for myself. A friend just passed from Stage 4 last week. I was too sick to go to her funeral. I belong to a group that lost 3 to MBC this year.. I’d like to think they had a pain free passing. But the emotional pain if letting go of everyone is the part I fear more than physical pain.
I have more questions than answers but I needed a safe place to say this. Will I know when it’s time to stop?0 -
Maire67, I am not metastatic. But I am a planner. I like to have all my ducks in a row. I want to have pondered these questions well before they hit me in the face. That is why I follow this thread even though I am not (at least not that I know) metastatic.
M. Scott Peck says that "Mental health is an ongoing process of dedication to reality at all costs." There is someone else who I listen to and his philosophy is (paraphrasing) there are lots of shitty things that happen in life and the only thing you can do about them is make them more shitty or less shitty by how you handle them. This is, of course, very easy to say when thinking about an unpleasant dinner with the in-laws as opposed to contemplating the cannon ball that is hurtling towards you. But I appreciate the sentiment in these two philosophies.
I am afraid to die. So afraid. So sad. I had wanted to die when life had lost its flavour and verve. I had wanted to die by willing my heart to just quietly stop after a particularly good dinner and when I was in my own bed. I wanted to die quickly, painlessly, without drama and horror. Do I get to choose that? Doubt it.
Being diagnosed with breast cancer sort of wiped that old age death in my bed with a smile on my lips, right off the table. I struggle now with how to handle the inevitable as graciously as I can when my dedication to mental health makes it no longer possible to deny the cannon ball. I try to cling to this by remembering how ugly, horrible, mortifying and inhumane it was watching my dad die a slow and agonizing death of bone cancer. It was found very late. No treatment of any sort was undertaken, not even to stop the pain. At that time radiation might have been a pain control but a radiation centre was a plane ride away, hundreds of miles from home. All he got was morphine, which quickly became utterly insufficient. By the time he died we were all staggering with the ugliness and horror of it. He was not old. He was not ready to die. He was MAD. He suffered so very much. The effect of it all was to leave us mute and limp, completely wrung out. So stricken were we with the horror of it that we couldn't even talk about it. It was like we floated in a suspended animation of broken communication and mental paralysis.
That is NOT how I want to leave my family.
Maire, you are not greedy to want to see your Grandkids grow up. We are wired biologically to chose life, to fight to live. But we also have the brain capacity, more than any other sentient being on this blue planet, to know when the fight is lost. WHen you have been dealt the losing hand, how you leave the card table is up to you. To me. I want it to be as bearable for my loved ones as possible. In the event of metastatic cancer, they will, of course, want me to fight, to leave no stone unturned. Will I? Probably. How long will I? How long should I? I don't know. I want to know. Some of that can't be known until you're in the middle of it. Then you weigh the pros and cons.
I am babbling. What I am trying, and failing, to do is reach out and squeeze your hand. I am sure there have been moments in your past when all you had in a situation was your dignity, your grace, your good manners and the ability to smile and carry on even though you didn't feel like it. Those qualities are in you still and I believe when you need to know how to proceed, you will know. Not happily, perhaps. But with a wisdom and plodding resignation that many years of life has given you. I hope the same for myself. That is why I watch this thread. Because here lies the example that I want to be when the time comes. Blessings to you all.
0 -
Pajim, thanks so much for the explanation, I understand now.
There are so many different views on what is the truth of it all....its difficult to see clearly whats what.
I also hold my hands up to thinking NED was, well not cured exactly, but no cancer showing or growing in the body.
I think i am looking for answers, and perhaps there arent any, just opinions.
Many Thanks and love and comfort to all.X
0 -
I keep deleting my comments because I don't feel like I'm saying what I want to. I'm not strutting toward toward death as a young whippersnapper going “I got this yo!". The actual act itself. Death itself. The process itself. I'm afraid of it. But then what can I do to stop it. Apparently nothing. Everyone told me your young, you young whippersnapper you, this is just a blip on the radar, plow through the treatments, get on the other side and you'll be just fine. This is only a temporary reality. Wrong. Wrong. Wrong. Nobody told me 30% of early stage metastasized later. I had to look that up to know that. I did everything they told me do to the letter. I fought quitting chemo at least half a dozen times because I love my husband. I fought for him. They actually told me i could be cured. CURED. I believed it. With a very low Ki67 of 5%, a mitotic rate of 1 and a cancer with tubular features at biopsy I thought hey. No way will this progress.
Did the whole chemo hell, crawled to the other side, some days only managing to get up to drink an ensure twice a day even some days during “chemo lite" taxol. I thought the pain up and down my legs from the neuropathy would send me to Pluto. I laughed and fought through it all because it wasn't only about me, I had bonded with a bunch of ladies from my chemo group by then and I had to get them over the line with me. My husband working so hard, sun up to sun down I had to try.
Now I'm here. Mets all over. That hurt. Finally with enough hair to comb that's thinning on the new shit I'm on. Fearing I'm going to be one of those who burn through the gammet. Why should I think otherwise? I didn't even get to finish standard treatment protocol. How could I go from completely clear scans to chock full bones AFTER Very aggressive treatment. How?! My Mets hurt MORE now on treatment then when they were first found. Isn't treatment supposed to stop me from hurting? This is a girl who took jack shit for a mastectomy and an oopherectomy pain wise complaining about pain. I'm seriously considering talking to my MO on the 3rd about something for pain. 37 years old and having difficulty dressing my lower half in the morning or after a shower because I hurt. Laying in bed hurts. Sitting in the recliner hurts.
I agreed to my current regimen because I wanted to try. I'll know soon enough if it's doing anything, sure doesn't feel like it. I long for a peaceful death. I don't want to scar my husband with a writhing torturous end. I've agreed to try Ibrance/Aromasin and Faslodex. I feel almost like I'm being scared into jumping on the treatment train. That painful death is inevitable if I don't ride the train through every possibility. Do I get no choices at all but to comply with the oncology ward? Can I say no more and when I say no more, will that be looked at as just as brave as those who continue? But... no IV chemo for me, I really can't do it again. I know Stage 4 is different IV chemo wise....I'm just exhausted, never exhausted enough to get quality sleep tho. Running my fingers through my poofy pixie, I hate that at 37 I have to make these choices about life and death. Is any decision I make really wrong at this point, I'm going to die at this point, now it's all about how.
If I'm not expressing myself well enough that is respectful to all interested parties on the topic, I'll bow out. My intention is always to be honest, but not be an asshole
0 -
Rabbit, I had NO idea you were 37. I absolutely hate that. I have this weird thing with ages of people on BCO. I pretty much assume everyone is between 55 and 65. I don't know why. Then I hear someone like you is so much younger, the guilt kicks in. And don't feel guilty for me feeling guilty. Maybe it is not guilt. It is just, why do I get to be 70? It's not fair. Then I sound like a five years old. It is so hard to reconcile any of this, it leaves my head spinning. You should keep writing to us. Your thought are just what this thread needs. Your thoughts are way beyond your years, unfortunately. You are still at the beginning of this so give it some time. And give Ibrance a few more months. My MO didn't scan for five months. Some MO's move on way to quickly from this drug. It has been known to have good results if left to work. Rabbit, you are in my thoughts this Thanksgiving. I'm thankful to have met you.
0 -
Radagast . Thankyou for your insights. It is tricky to be honest , shoot from the hip, and be respectful sometimes.(although i dont think you have been).
I love honesty...they call it ‘authenticity’ these days.
I dont think you can go wrong with it.
I do hope you will continue on here. I value this input very much.
X
0 -
Dear ladies happy Thanksgiving to you all!
I've read the whole thread and I'm overwhelmed with joy at the honesty, depth, and beauty of your conversations....
I completely embrace this quote posted earlier by Runor: “Mental health is an ongoing process of dedication to reality at all costs." M.Scott Peck
I'm currently on Doxil and I too dread the idea of grasping for dear life as I go down the slippery slope of the chemotherapies list and the associated mental, physical and spiritual damages.
Today, I’m very grateful to you all....
0 -
Happy Thanksgiving to all who celebrate!
I am 8 years out from a stage IV dx. I am a fortunate outlier (though why is still a mystery). I have had no progression and have never done chemo, though I’ve shuffled through the AI’s due to side effects. I continue to work full time. Despite this relative “normalcy”, the thought of progression and death weighs more heavily on me as time goes by. To be honest, I have no idea how far I will go to live as I haven’t had to make any of the tough decisions yet. So many personal circumstances and experiences go into making tx choices
Many thanks to my wonderful doctors and other care providers. Your unfailing kindness, honesty and respect for my intelligence make me feel like you have my back, regardless of how my story unfolds. Dr. S, my dear mo of 8 years, I am devastated to lose you, but I know that your parents need you too.
Countless thanks to my family and friends. To all my fellow bc members, I am thankful for all of you too. Whatever choices we make regarding end of life decisions, may we all find peace.
0 -
Rabbit, I am heart broken over your post. You are so young fighting this dreadful disease. Please talk with your MD about pain pills. I don't take them often, but when I do it seems to help the bone pain. I am praying for you and all of us. Virtual hugs💕 Lisa
0 -
R. Rabbit. Your post rocked me back on my heels as all the air left my chest. I am reminded of how small we are, how big the cosmos is, how random shit is, and how we are left to deal with the life ending realities of this random shit. I can only imagine the unutterable horror that everyone around you is feeling. Not to mention that black pall that rolled in like an ugly cloud to crush the joy and life out of you. I am so sorry and so sorry that that is all I have to say. Nothing better. Nothing helpful. Just mute, stupid powerlessness in the face of it all. Regret that this is the reality for so many thousands of women. It's insane.
As much as reading and posting on BCO provides you with a touchstone, a place to vent and support to read, I think your way to cope with this reality is going to be found in yourself. Deep inside you. I think when you withdraw into your very inner being you will find what you need to find and know what you need to know. I realize that sounds very airy-ferry, but I believe when push comes to shove you already have the answers. You just need to give yourself quiet, clear space to go on that inside trip and settle the things you need to settle. THe spirit of every woman before you and every woman who has known you through your words travels with you and supports you as you find your own answers. There is no other way to do this. Wrapping you in a sad, sad hug.
0 -
Rabbit..beautiful and emotional post.
0 -
Hi RagadassRabbit, I can relate to so much of your post. I was diagnosed at 30 with stage 2 and 38 with mets, while pregnant with my “miracle baby”. I feel the wool was pulled over my eyes as everyone said that most recur in the first 2 years and after 5, one is essentially “cured”. Had I known 30% go on to have mets and that the % does not lower over time but remains the same for the rest of one’s life after 5 years, I may have stayed on tamoxifen 10 years instead of 5. I may have tried to use a surrogate rather than flood my body with hormones that kick started the cancer with a vengeance, all of which was heavily vetted with my doctors and based on years of personal research to confirm it was safe.
You are in my thoughts. I know you said you do not want to do chemo but I will say, the chemo options for mets are so much more expansive. Most are much more targeted than the beastly chemos used for early stage and give a good quality of life due to the targeted nature and lower dosing. Xeloda chemo is a pill with minimal side effects. Much easier than any hormone therapy for me. I found many chemo regimes much more tolerable than the hormone therapy you are taking now. I have spent the majority of the last 5 years on chemo and only 1 chemo caused hair loss and I did not lose it all. Most people still don’t know I have mets and I work full time on all these chemos.
Hoping your pain becomes manageable. I was in excruciating pain at mets diagnosis from bone mets, pretty much throughout my body - spine, ribs, hips, pelvis, pubic bone, femurs, clavical, scapula, wrist and other places on my arms. I could barely walk, could not go from sitting to standing and vice verse without putting all my weight on my arms and off my hips and felt like my arm was about to snap in two when I held my 5 pound baby. I also had 4 vertebral fractures. It took some time but my bone mets healed in 6 - 12 months. I didn’t know if I would ever be able to walk more than a very short distance again and assumed my exercise days were over. However, I was able to resume running 1.5 years after diagnosis and can do yoga, backbends, everything. This is an awful disease and a cruel joke. However, many people live for a long time. I am here 5 years later despite all of those bone mets, as well as uncontrollable hypercalcemia from the bone mets and a liver full of mets at diagnosis. May there be some sunny days and glimpses of rainbows for you despite the dark days and rain that is mets.0 -
I feel so sad hearing and reading of the younger women stuck with this awful diagnosis. My heart goes out to you all. I can see how different this "journey" would have been when I was in my prime and building a family and a career, assuming I had decades of good life ahead of me. I wish you peace and comfort and I hope for some good, life prolonging treatments for you and for all of us.
JFL - very realistic yet compassionate and hopeful post you wrote. xo
0
