A place to talk death and dying issues
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Mike, at last, your dear wife's pain and struggle have ended. She is at peace with the Lord. My deepest condolences for your loss of your beloved wife and companion.
This poem by Henry Van Dyke has comforted me through many losses. I hope it may give you some comfort.
Gone From My Sight
I am standing upon the seashore. A ship, at my side,
spreads her white sails to the moving breeze and starts
for the blue ocean. She is an object of beauty and strength.
I stand and watch her until, at length, she hangs like a speck
of white cloud just where the sea and sky come to mingle with each other.Then, someone at my side says, "There, she is gone."
Gone where?
Gone from my sight. That is all. She is just as large in mast,
hull and spar as she was when she left my side.
And, she is just as able to bear her load of living freight to her destined port.Her diminished size is in me -- not in her.
And, just at the moment when someone says, "There, she is gone,"
there are other eyes watching her coming, and other voices
ready to take up the glad shout, "Here she comes!"And that is dying...
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I will say goodbye to all you wonderful ladies and your kind words of support. It seemed you loved my poor Darlis as much as I did. I go off on a new road tomorrow, a new adventure all alone. I will never forget for one moment my beautiful, warm, sweet, loving wife. Someone please enter her name in the list of the fallen:
Darlis died Nov 14th 2019 of TNBC cancer Wife of Michael
When I log out tonight I will never return. All the luck to you ladies in your struggles with this monster. As I've said previously if you see a sad old war veteran sitting alone in a restaurant nursing his coffee and notice a pretty white 57 T-Bird out front say stop by and say hello.
Mike W.
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Mike, I just requested the posting on the In Memorian board.
I removed your last names per moderator's request. You should probably remove them above, and you may wish to remove her birthdate as well, since that information can be used for identity theft.
HUGS, Madelyn
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Mike
Hugs and my deepest sympathies!! You are an amazing husband and I pray God holds you in the palm of His Hand. . .my Irish friend.
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Mike,
Although you may never see this, we want to share with you our condolences. We are so, so very sorry for all you and your wife have gone through. It's clear you loved her very much and were a wonderful advocate for her. She will obviously be missed very much and our hearts are heavy for you as you grieve and try to move on.
Please know, we are always here if you need us.
--The Mods
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Mike, I too want to send my condolences to you and your family. Yes she is at peace now and she will be with you always.
I also love the picture of her and Monkey.
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My therapist just sent me this:
https://aeon.co/ideas/we-all-know-that-we-will-die-so-why-do-we-struggle-to-believe-it
We had been talking about peoples' universal denial of death. I asked her, "why do people insist on deceiving themselves?" I really don't know. People keep calling me a realist. Anyway, the article is thought-provoking and interesting.
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Awful news today- my Mom has been diagnosed with IBC. Her Dr. Said the prognosis isn’t good. I won’t have the full details until next Friday. So we are in the dark abyss. My mom is always in denial about all the illness she has been through. She started having issues back in April and probably didn’t get the best care. She has breast implants from a surgery done back in the late 70’s. She had nothing but issues with them. We believe that silicone prevented the dr from seeing the cancer and the fact my Mom downplays any illness or pain she has.
What does palliative care look like? How do I keep her spirits up while we fight the good fight
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Fiercer I'm sorry about your mom, I'm assuming she is Stage IV de novo since you posted in this thread? Doctors will tell you that the prognosis isn't good because frankly it's not, 22 months is the median, but much will depend on where her mets are, how healthy she is in general (and her age), if it's operable (mine isn't), and how well she responds to treatment. Primary IBC (as opposed to secondary IBC) can be sneaky and stubbornly resistant to treatment, but it's highly individual. My doctor told my family that he didn't think I'd last 60 days because it was spreading so fast & I was told to "get my affairs in order", but I'm still here 2+ years later and doing okay despite the fact that it's been resistant to certain chemos, targeted therapy and only had a slight response to radiation. I have a great doctor and if you met me on the street you'd have no idea what I'm going through. It can be stressful and frustrating trying to find a treatment it will respond to if hers is as resistant as mine is, and my best advice for her is to try to stay as healthy and fit as possible so she's in good shape for treatment. Hopefully she has good results from her very first treatment and they can knock back for a long time.
You asked about palliative care and that can mean two different things so I want to make sure I understand. First, treatment can be palliative as opposed to curative, because there is no cure. Some people get upset when they are told that their treatment is palliative because they think it means their doctor has given up and they've reached the end, and nothing could be further from the truth. Palliative treatment (which can include chemo) focuses on symptom management and quality of life.
Palliative care as a medical specialty is a team who is focused on quality of life issues for the patient as well as the family. They may help with pain management, coordination of care, spiritual care, social assistance, they can help find financial assistance, help at home, etc., anything that impacts the patient's and family's quality life. Proper pain management is key as there is often quite a bit of pain associated with IBC, especially if it starts breaking through her skin (IBC starts in the lymphatic system of the skin). I spent the first six months of my Dx heavily sedated on morphine and fentanyl.
When you learn more about her diagnosis, I'm here if you have questions.
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I'm kinda going over things in my head, sort of mentally deciding what I am and what I am not willing to go through as far as treatment. Of course my family namely my husband factors into this very much. BUT at the same time, I'm the one who physically has to go through the treatments to extend my life. Having gone through very aggressive treatment early stage and finding metastasis not but a month after surgery ( I had neo-adjuvant chemo) was crazy to me. Everything happened for me in less than a yr time frame. All the scans during early stage were clear for distant metastasis meaning this crap GREW on very aggressive chemo...fast. My thoughts are this, pills..ok... I can do pills...but i do not think i could go into the chair for IV chemo again. The day my MO tells me IV chemo is my only option I want to stop treatment and just enjoy whatever time I have left. Is this unreasonable or selfish? I feel like in a way, I am just expected to take absolutely everything they throw at me without getting a word in edgewise until i've literally burned through every option there is. Is it giving up to not want a string of chemos or treatments after my name? Is it disrespectful to those fighting this disease to not rage a full war til the end? I do not want to come across insensitive to those who wish to do everything possible or encourage anyone to give up or throw in the towel. I am only speaking for myself.. I just wonder if there is anyone else out there that maybe feels like I do. That has limits on what they are willing to do or how far they are willing to go with this. Where do you draw the line? I need to talk about this.
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I’m not going to do that over the top, fight it with everything but have no quality of life stuff. It’s my life and I will have a say so.My family will have to come around to my way of thinking. It’s a personal choice and one size does not fit all. Those who want to fight to the end, I respect that. Those who opt for less invasive treatment as the end draws near, I respect that.
It’s not about judging a person’s choice, it’s about supporting it.
You may be interested in this current thread: How do we die. There is some beautiful insight being offered there.
https://community.breastcancer.org/forum/8/topics/874328?page=1#idx_11
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Rabbit, I am SOOOOO right with you. I wish I was brave enough to write what you wrote. I have been thinking just this for a while. I only did two rounds of real chemo at first dx with stage II in 2014 but those were the worst two months of my life. I have NEVER felt worse. I will NOT do that again. I have just started seeing a palliative care group for symptom management and will bring up this issue at some point. I have not told DH or DS or my sister. They get the feeling of where I am but nothing specific has been discussed. I take courage from your bravery. We can PM about it if you want. The pervasive philosophy of BCO is to do everything possible to survive. I'm so glad I found a cohort.
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I'm glad that my MO and I had that talk up front so we're both on the same page about my treatment. I do not intend to try everything possible at the expense of my quality of life and my MO was relieved that I feel that way. I think many of them will keep offering treatments either because they are in it for the money or because they are pressured by the patient or patient's family to do everything possible even though it is often the worse thing one could do to the person. PFS does not always correspond to an increase in OS, something that is often misunderstood, and I think that's why people can get caught up in wanting to change treatment at the first sign of progression and to keep trying just one more drug even though it could literally destroy their quality of life. Thankfully my MO is open and honest when we have these discussions. Any cancer treatment should have at least one of these two purposes only - either improved/maintained QoL (palliative/symptom management), or improved OS, that's it (a thought often repeated by many top oncologists). There's been such a heavy focus on PFS recently as a surrogate endpoint in clinical trials (because it shortens the duration of the trial and leads to faster drug approval) that OS and QoL are often neglected/ignored. PFS without improved OS is meaningless, especially when a drug is highly toxic.
~ I guess I should add that I do understand that some are hoping to PFS their way through until a cure is discovered, and I get it, especially if they are young, have young children, etc. It's just not for me.I'd rather live a shorter life while keeping my QoL as high as possible, than live a longer life with much of it being miserable. That said, I've been on IV chemo since the start, never even had a chance to do hormone/endocrine therapy. I was initially dead set against the "chemo for life" program, but it honestly hasn't been as bad as I feared it would be (not that it's been a cake walk either). Of course, some chemos are harder than others, we each react differently, and even the same chemo may affect us differently at different points in time (I did taxol twice and my experiences were polar opposites). Yes I've had some really awful days, but on the whole my QoL is good thanks to the way my MO manages my treatment. Another thing to keep in mind is that for early stage they'll typically hit it hard with a nasty chemo(s), but for metastatic BC they will prefer to start with less-toxic options because you're in it for (hopefully) long-term, and as the disease progresses the options become more toxic. So please don't automatically turn away from chemo because you're worried that it will be just as bad as the first time you did AC+T, it may not be so. The chemo I'm on right now really isn't bad at all, fatigue is my biggest complaint. You might want to stay open to considering trying a recommended chemo drug to see how it affects you. Good palliative care to manage the SEs of treatment is important too (my doctor is fantastic at this too). But it's your choice how to manage this disease and no one should ever make you feel guilty for your choices. (Please don't think I'm to get you to reconsider chemo, I most definitely am not because there will be a day when I say "no more" too. Just want to make sure you are aware that it likely won't be as bad as the AC+T you did initially.)
Family pressure to do everything possible - my husband felt this way initially and I felt a lot of pressure even in our early discussions. I was 53 when I was Dx'd Stage IV de novo and I should have had a few more decades of living to do, so he was in denial. His sister has nursed several people through end stage cancer care (including her husband), and thankfully she had several heart to heart talks with him to get him to understand how unfair it would be to me to pressure me to try everything possible. Now whenever I'm having a tough time, he always tells me that he'll support me in whatever I want to do. My SIL is also one of the people appointed in my Advance Directive since she understands and supports my wishes, just in case my husband is too emotionally vulnerable. Wondering if maybe you have a family member who could be your champion for this and talk to the others?
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Count me in as someone who will not "fight it out until the end". I have already made this clear to my husband and my mother. I haven't yet made it clear to my MO but he knows me. He's going to get the job of distinguishing between "can" and "should".
To me the object of the game is to live well and to die well. I've been doing a good job on the first part (until two months ago but I'll get back to it). I don't know what the second part looks like exactly but I have some ideas of what it doesn't look like. No trips to the ICU thank you. No vomiting every day for a month. No intrathecal chemo (my cousin did that one).
Several ladies on these boards over the years have been kind enough to post almost to the death, so I have some idea of the options. Would that I could live (and die) like Stephanie but I recognize that is unlikely.
However I will say one thing. Don't block yourself in with "I won't" right now. When the time comes for iv chemo you may feel differently. Or not. Either is OK. I found my 9 months on eribulin to be 'not bad'. My MO and husband said I got tired, but I didn't really recognize that. And the SEs were better than [say] A/A. Remember, just because you agreed to take the first dose of a drug does not mean you agree to take the second or third dose.
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I also totally feel this way. I am not going to try every single line of treatment they have. If I don't like one, I'm not going to take it. I've already said I am never losing my hair again. I'm just not. It was torture, maybe I am vain. I am allowed , I have experienced both sides of that coin and I am not going back to that. I am not going to be ridden with more neuropathy, so much I can't walk. The AI's are already seeing to that. Stiffness you could hammer with, joint pain to end all joint functions. I was denovo but they didn't know it at the time. Since I was Dx @ 45, they assumed it hadn't spread and hit me with the AC & abraxane combo. Kicked my ass. Spread anyway, or was always there. I'd been having back pain while Working out. I won't lie. I don't ever want to look back. Never.
I have been NEAD for 3 years on Ibrance. When I have progression. I guess I'll have to figure out which way then, my onc knows. No hair loss or forget it. He even says he. Knows not to ask. My DH, my sweet sweet love of my life. My world. My heaven on earth. Is another story, my children, my three beautiful babies. (Not so much babies at all but will always be in my heart that way). Make me want to try what I can and keep my hair. I look at his eyes filling with tears as he says “what about me ?" It's like playing badminton with our lives. Except we are the birrdee. In this scenario..I so much want to be free from this bubble Of fear I live in no matter how good they say I'm doing. I'm sick of being the cancer friend , or wife, or daughter, or that person someone heard of who had it spread through her body at diagnosis, or the one they whisper at the bus stop about as I drive by with my cancer van.
I miss my life. I miss feeling The freedom to dare dream of a future with my daughter giving birth to her first child. Or my son marrying and having kids himself. Or retiring with my DH on that lake house, just us. So I come Here to this thread because part of me has already died. I can tell ladies. I've also seen death up Close. For the one dying, they control everything, for those who are remaining to go On, those are the ones that do the real suffering. Especially in a close family or. Love. I think I am Ok with dying if I knew no one would be hurt by that happening. It's everyone else I worry about. Always has been. This hand we have been dealt wasnt our choice but we have to live with it. Sometimes nothing seems fair when you’re seriously talking life or death and nothing we can even control We go along for the ride, bumping our asses and knocking our heads on doors, only because we have no choice. We fight becuse we have to. We get tired because we fight.
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This is the type of conversation and dialogue I need right now. Thank you to those who replied for your openness. I am glad to not be alone in these feelings. Sometimes and this is just my personal feeling I wish the focus of this section was more on the pallative care end of things instead of constant ongoing swap of treatments. By pallative I do not mean end of life or hospice. But rather treatment of the whole person. As MBC really at least I know for me effects me to the very core of my being. There is such a heavy emphasis on the drug and treatment side of things and not much on what happens afterwards or support given for the person who decides to cut the iv pole or pharmacy as it were, its kinda split off into its own entities on these boards. Having gone through IV chemo early stage and I do realize they hit me with a mack truck on purpose because they were trying to save my life. Prevent Metastasis. That ship has sailed and its instead become about life extention. I remember being completely bald not too long ago and how i felt physically...even when i moved onto the "chemo-lite" it took many months after my last taxol for the neuropathy to go away and mine was agnozing up and down my legs. I couldn't find any way to get comfortable no matter what I tried. Gabapentin did help me for a bit but only took the edge off. Looking in the mirror, bald with no eyelashes or eyebrows, with one breast and a port scar, and a right arm unusable for blood draws or iv's due to lymphedema risk, I said to myself whatever I did going forward I never again want to feel remotely like I do now. Pills okay. I'll take a pill. As long as I never feel again like I did on chemo or as restricted as I felt during my mastectomy, I'll do it. If whatever i'm doing takes away my ability to do things or enjoy the things I do long term, and i spend more time recovering than living, I want no part. I've really thought about each treatment I have agreed to thus far in the Stage 4 setting. Ovaries out. Okay. Ibrance and Aromasin. Okay. I know should I progress Ibrance and Faslodex would be next line as MO has already given me literature on it. Okay. Shot. That's fine. Zometa infusions...okay. I agreed to once a month for a yr, then I asked for once every 3 months afterwards. I may ask for it twice a year after that if the time comes to make that decision. I know everyones position is unique and there are reasons why people are aggressive even in this setting. I do like the idea pajim brings up tho, the power to try and the power to stop. Obviously I'm not against treatment in the Stage 4 setting, I'm currently in treatment. But I am against doing anything and eveything to survive. There has to be point when its time to stop. I know where I've drawn my red line. When anyone draws a red line, it doesn't mean they are giving up, and it shouldn't mean they are causing others to lose hope or give up- they are merely deciding whats best for them in an informed and educated way. That's empowering imo.The right and the ability to say NO.
When I had my pituitary mets scare a bit ago. It really made me think. I'm still being asked to see the endocrinologist in 6 months even tho I was given the all clear. My last visit with him about a week ago included the following questions: Do you have headaches, nausea, vision changes, dizziness...brought out the eye thingy and flashed me in the eye a few times. What is this all about I thought? Same thing they did when they thought something might be up not long ago. I still wonder if I'm not being told something or they expect things to go one way or not. I haven't gotten a clear answer. But I know I began thinking to myself. What would I do if it was brain mets? I concluded I'd stop everything and enjoy what time I had left period. Id rather not know how things were progressing at that point. Sometimes, and this is just me. Its almost like emotional abuse to know so much about your cancer, because it effects me emotionally. I cannot help but internalize it. As a person of faith or not, I'm still human and it effects me. I cannot stop it from doing so. BUT, emotions or not I want to make clear choices that make sense. Most of all sense in terms of QOL.
Lori, Jaycee, pajim, and Micmel you spoke about many things that I also feel too. I'm glad I piped up. Lori, you brought up some things too I wondered about PFS vs OS, thank you for sharing..Thank you all for sharing
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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 don't think it makes sense to use a toxic cancer drug that does nothing to extend your life, and personally depending on the SEs I find it hard to justify for something that might give me an extra 3 months. I have done a chemo for palliative purposes when my doctor has warned me that it won't extend my life, just improve my QoL, and he won't let me stay on a chemo that has negative QoL implications long-term if it doesn't improve OS. Truly grateful that my MO pays attention to the OS/QoL issue because it seems that many don't.
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Lori, that's just amazing!
It's important for doctors to tell their patients what the pros and cons are for every medication and treatment. Yes, this new medication may increase your life for 3 to 5 months, although you may experience significant side effects while taking it. Side effects may include...
Thank you,
Mominator
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Mominator, crazy isn't it? How did they approve 31 cancer drugs last year that do absolutely nothing to improve OS??
I still remember when early into my Dx and I was discussing options with my MO, he said about one chemo - "that chemo will do nothing to extend your life, it will only make you sick", and it took me a while to wrap my head around that. Once I started researching and learning more, I finally understood what he meant. Now whenever I'm researching a new drug, the first thing I do is dig up the trial data and stay away from the marketing hype.
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This is exactly what Dr. Raza is saying in The First Cell. Here is a recent interview she did with The Guardian.
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LoriCA, a caveat that I didn't read the entire paper at the link you provided, just the abstract.
I work for a medical journal. We've published a lot of papers on new cancer drugs. And there have been a lot of discussion [about them] amongst our editors.
Our previous oncology editor felt that if you didn't improve survival you didn't have anything. Our current oncology editor feels that PFS is OK because once the trial is over people go on vastly different drugs and in different orders. Nothing is 'controlled'. I understand his (yes it's a him) point of view but I don't agree. If you haven't bent the survival curve, why bother? [I have an answer to why bother below] On the other hand, he's the expert and I'm not. [I still don't agree]
But this paper you present is also confounded. In the past few years, many oncology drugs are being approved on good PFS data. They are usually interim analyses of good clinical trials. The idea is to get promising drugs into the hands of patients as soon as possible. Patients are clamoring for drugs. The trials haven't gone along enough to have overall survival data. That would be why 2017 approved drugs have no survival data. They're still following the patients.
Take palbociclib, ribociclib and abemaciclib as a poster child example. Palbo was put on the rapid track based on the interim analysis of the Phase 2 trial, then rapidly approved at the interim analysis of the Phase 3 trial. But as we all know, ER+ MBC patients are living a lot longer then we used to, It took three years (is it three? I think so) for the overall survival data to 'mature' -- as they say in clinical trial jargon. We've all living too long to get the answer right away. That answer came this year. And yes, there is a survival advantage. The data for abemaciclib haven't appeared yet.
Now back to the "why bother" question. If you knew you were going to live exactly 5 years to the day, you'd want drugs with the least disruption in your quality of life. So drugs which don't extend life but make life easier might be worth it. And we all have different ideas about what QOL means to us. I might like a drug you wouldn't touch with a ten-foot pole. Actually if I knew I was going to live 5 years to the day no matter what I wouldn't take a single drug. But that's neither here nor there. . .
I'm off to read the label for Piqray as it's likely to be my next treatment. . .
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pajim, the surprising thing noted in the paper is that the overwhelming majority of drugs approved with no survival benefit were regular approvals. Everyone would understand if it was accelerated approvals because as you stated, enough time hasn't passed to have the OS data. Accelerated approvals require OS analysis after the drug is approved, but regular approvals do not, and many of the regular approvals were found to have no OS benefit. That was a main point of the paper - are we (FDA) just approving these drugs so we can pat ourselves on the back about the number of new drugs we've approved, and forgetting that there's supposed to be a benefit to the patients.
I'm in full agreement about QoL, as I mentioned earlier I support the belief that a drug needs to either improve OS or improve/maintain QoL and I have done chemo drugs for palliative purposes only while understanding that it wouldn't extend my life. One question I have is how often doctors are honest about exactly what benefit is expected, and if they are telling patients when there is no expected OS benefit. My conversations with several people indicate that doctors aren't always telling their patients, or maybe they are but the patient doesn't want to hear/acknowledge it. But tying it back to RadagastRabbit's original post about declining further toxic treatment, some of these drugs have shockingly high levels of toxicity (no QoL benefit, only a worse QoL), so if there's no or little OS benefit I can't blame anyone for declining. Highly personal decision, especially what we consider an acceptable level of toxicity and acceptable QoL, There are no easy answers for any of us.
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I agree with you (knew I should have read the entire paper -- my apologies).
I do feel that it's not always the MO's fault. Not everyone has all the SEs. Some people have none. Should the people who will sail through the treatment not take it because others have the worst time? Back in the ole Stage 3 days I took ATC. I was supremely annoyed that they couldn't tell me what would happen. It took months to realize that the reason was they didn't know! Just as they don't know which drugs we're going to respond to and which ones our bodies will reject.
Of course we all know that cytotoxic (iv) chemo is naturally going to have more SEs just due to the nature of the beast and I fully support anyone's decision to decline it.
Zero easy answers here. I spent two weeks in a hospital bed recently unable to move. It made me realize that dying could be a lot more uncomfortable than I had heretofore realized. So now I need to factor that into my future decision-making.
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I don’t think our aunt was given enough information when she was fighting colon cancer. She had just 3 months from diagnosis to death. She was on chemo and had horrible GI side effects. She died a miserable death. (1998
Her doctor should have had a talk with her about pros and cons of treatment. If her chemo had no improvement in OS, why put her through that?
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pajim sorry about your recent hospital experience, and it's true that until someone goes through something like that they probably don't realize how bad the end might be. I too had a sneak peek at just how bad the end is going to be for me. When a tumor developed in my brachial nerves I was out of mind delirious with pain, 15 on a scale of 1/10. I had always been told I had a high pain tolerance so that was a wakeup call for me. It's not death that scares, my fear is going through that level of pain again and my family having to stand by and watch me suffer. That's why I support Death With Dignity. If I reach a point where they can't pump me full of enough morphine to ease the pain and all I can do is lie there screaming in agony and hoping to die while my family stands by helplessly...no one should have to go through that. I'd rather just go quickly once the pain gets that bad, but I like knowing I have an option if it becomes a long drawn-out process of nothing but pain.
When I talk about high levels of toxicity foremost in my mind is a drug that has just been fast tracked for approval that has 50% Grade 3 and higher AE, 20% Grade 4, and a few Grade 5 (deaths) from the drug. That level of toxicity was consistent through all phases of the trials. I know someone who was in the trial for 2 years and she didn't have a problem with it, but that is a scary level of toxicity until we see if there's any OS benefit (scary even if it does extend OS). My previous experience with a Grade 3-4 Adverse Event makes me hesitant to even consider this newest wonder drug as a possible line of treatment for me. Flip a coin - heads and I'll do okay tolerating it like my friend, just some minor discomfort that is easily managed. Tails and I'll likely end up in the hospital wishing I were dead. I guess we'll see what they have to say about it at SABC in a couple weeks.
Mominator I'm sorry about your aunt. My B-I-L went through something similar with pancreatic cancer earlier this year - 4 months from Dx to death and horribly sick from chemo the entire time. Cancer sucks.
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Hi All,
I am a lurker only usually, but wondered if I could clarify something please?
I had believed up until now, that taking a drug holds the cancer at bay, say by stopping cells from dividing for a while,and therefore lessens the chance of more mets for a while. So, if you can delay more mets for a year longer than you would have done for example, surely that extends your life by a year, and then you could do the same again with a newtreatment when it progresses.
Or have i got this wrong?
Thanks very much.
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Hi treehouse,
I think understand what you’re saying, but there is simply no way to know if the “next “ drug will yield good results or any results at all in some cases. There simply are no guarantees about what a new treatment will or won’t do.
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treehouse, if that were the case, given the number of drugs released by big pharma, then why would any of us ever die?
There is a limited number of drugs that will work on any particular cancer.
There is a limited amount of side effects a patient can tolerate.
There is a limited amount of damage caused by these drugs that a body can withstand.
While some drugs may give you a year (or more), some only give you a few months.
At some point, the cancer overwhelms the body and we die. Always.
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Not to mention treatment resistance. Cancer is sneaky, it learns to adapt and may not respond to chemo or other drugs, especially after we've already been on a few lines of treatment. You can really see it when some people are reaching the end, they are trying everything and the cancer doesn't respond to any of it. I think your best bet to extend your life is with your first line of treatment.
And as the report I posted showed, there are many cancer drugs with a PFS benefit that do not extend OS. I used to think as you did tree house, and it was really hard for me to wrap my head around that when my oncologist first talked about it. There are some outliers and exceptional responders, but they are a small minority. I guess we all hope to fall into the minority of exceptional responders, but I've already come to terms with the fact that I won't since my best chance was Herceptin, which does significantly improve OS, and I didn't respond to it (although my MO does think it may have played a role in slowing down the growth even if it couldn't hold me stable).
I'd guess maybe there's a difference between an indolent Grade 1 cancer and Grade 3 with a super high ki67 with regard to the relationship between PFS and OS. When my cancer starts acting up, it explodes. Three times in two years now. I figure I'll probably be one of those people who appear to be perfectly fine one day and in hospice the next, with absolutely no warning.
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