STEAM ROOM FOR ANGER
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Fortunately, I have very few people to deal with. DH just ignores all. DS, same. My sister is the only one who gets it. She has had several friends die from cancer and our other sister did, too. That was long ago. I have no wisdom on this topic. Right after I read your post (in both places), I said to myself, "I would just do this and that." Like tell them what idiots they are being. But I could do that now and I don't. Why not? DH can't even remember when my appointments are. I told him the day before my last MO appt and he went to walk the dog that day. He came back to me gone. He was pissed because, he said, "what if the garage door didn't go up." I told you YESTERDAY about this appt. That is just too far for me to travel to where he is. Pet scan results vs garage door. Escapism extraordinaire.
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I have found I don't talk to family about cancer and the fears at all. No one gets it if they have not lived it themselves.
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I know this has been said before but it still pisses me off. I have had the TV on much today as I cleaned and organized and if I see another Ibrance commercial I am gonna slam my TV across the room. Seriously, given the amount of advertising they spend on this drug no wonder it is extremely expensive and unaffordable to many. My thoughts.... if an MO never heard of Ibrance by now and it is something you have to call your doctor's attention to after being dx'ed with stage 4, I would worry. They run these commercials constantly all day and night and it disgusts me. This is what is wrong with our healthcare system. I see no point in this useless waste of money and I find it obtrusive just when I am trying to get my mind off of BC, if just for a little while but no.... every frickin hour the commercial runs. WE GET IT ALREADY!
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Not broken- I feel the same way. Trying to keep my shit together and watch tv then the dam Ibrance commercials! Plus they don’t tell the real picture or the costs. Plus how many of us failed miserably on it. I wish they would ban drug companies from advertising. They are in every magazine as well. Maybe we should all write a letter to the drug company.
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Ugh... first we had Julie and now we have Alice. Guessing Julie is not doing so good on Ibrance and so now we have a new chickie in her happy place and "new normal". I seriously hate these commercials. Save the money on advertising and drop the price. I find it all very offensive.
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Pfizer, save the money and put it into research. We get the message already and hell, the MOs better well have heard of you by now. I would think you stage 4 people would be even more incensed by this than I. Ticks me off, this foolish waste of money.
Done with my rant but oh lordy, it is this constant indoctrination day and night and it denies reason. So pathetically wasteful.
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It makes me suspect all cancer drugs and all MO’s. I suppose that is irrational but so many times I have had doctors (for other health problems) just reach into a drawer and give me a handful of free samples that they got from a drug rep. It’s an easy way to get patients started on an expensive drug that offers perks to prescribers. Too difficult to start out with a tried and true drug that costs only pennies?
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My niece was married to a doctor and he got many perks from the drug companies from prescribing their drugs including trips around the world. Makes me sick
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I still remember with my first born... every sniffle went on to be an ear infection and he was always put on augmentin which was a very expensive drug at the time and we went without much to afford. Finally after years, I asked the pediatrician if there was a cheaper drug because we just couldn't afford it anymore. When I told him how much it cost even with excellent insurance he was horrified and thereafter my son was on amoxicillin at $5 a pop.
Ibrance however is even crueler being a life saving drug and the fact that many cannot afford it is disgraceful. A Canadian friend was recently denied but now her doctor has found a program for her. I also understand that Ibrance is available thru Pfizer for those who cannot afford it but I am confident that price is being passed on to those that can afford, willing to pay, or pass it on to those with insurance. I have a huge problem with this.
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Bluebird, thank you for your response to my post! It's nice to be understood. Btw, I was a voice major in college and have sung for decades so if you want any tips, I can try to help. Cancer steals everything!
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wow that is so truthful.... Cancer does steal everything! That’s pretty shitty, that we face that everyday. What a crap deal we’ve all been dealt. Someday it still doesn’t seem real. Where did I make a wrong turn into someone else’s life ? I never did read maps too good. 😕 ~M~
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I just had to give myself a laugh today....no, my anal/rectal incontinence hasn't improved since my lower back rads.
Mr. Cancer has STOLEN my asshole and hid it somewhere because I literally can't feel it anymore. (Gosh....it's got to be around here somewhere. Where the dickens did Mr. Cancer put it?)
The poop just slithers right out. I still have to wear Depends, and when it gets really bad....whip out the plastic pants.
L
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Lita honey I just want to wrap you in a big hug and cry with you. I've started having the same problem for 3 months ago. It gets so bad that I've told my husband a few times that I wish I had just died when they thought I would instead of going through this. Not only is it physical hell (mine has been every 15-20 minutes, all day long, for weeks at a time), it is the most humiliating and dignity-robbing thing I've ever gone through. My parents want to fly out to visit me (before I go) and I had to beg them not to just yet. I can't stand being around myself, let alone anyone else. I haven't been able to leave the house in months and I just make up excuses to people because it's TMI.
I was scared to death that the cancer had spread to my colon or elsewhere along my GI tract, but my scan showed no sign of that. Trying to convince my doctor that it's due to the Taxol - uncontrollable explosive diarrhea has been starting within 24 hours of each infusion the last four times, and each time it's been more severe and has lasted longer (now 3+ weeks before it starts to slow down,and I'm supposed to get it every 3 weeks). My MO agreed to skip the Taxol last week against his better judgement and I've been much better this week finally, I needed a break emotionally, but I still have a few monthly doses to go and I don't know how the heck I'm going to psyche myself up for a few more months of this. Each time it gets worse and I'm afraid it's doing permanent damage. I'm scared to death that this is how I'm going to spend the rest of my life, however long I have left, just sitting here pooping on myself all day long.
Have been trying to think of ways to design a comfortable reclining lounge chair with a toilet seat/bowl built in so I don't have to run to the bathroom every 10 minutes when I'm too exhausted to move. Then I I could cut out the bottom of some pants and just sit there and watch mindless TV while pooping all day long. I'm tired of cleaning up after myself and doing laundry 5 times a day.
If you get a chance, would you please PM me a link to the plastic pants you've found. Doesn't look like Depends is enough for me and the only thing I've found so far is adult diapers, which I haven't been able to convince myself to break down and buy.
I'm glad you're able joke about it, I'm able to joke about most of what I'm going through but this one still has me at the mortified stage. Sending you much love and sympathy!
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LoriCA~I have no words other than to say I truly hate cancer. I have never hated anything more ever. It ruins everything in its path and pays no mind in the wreckage it leaves behind. We fight because we have no choice. But what happens when we have had enough of fighting??? We can't just snap our fingers and be done with the battle. It goes on and on and on..... we don't get to pull our plug when we have had enough. We can't even have that control over our own disease to decide when we want to go. We have to go onto suffer, but our minds still are clear and sharp as a tack somedays. I'm sorry so very sorry that you're having this happen to you. It breaks my heart in two.. may you find some relief. Maybe with another treatment ? Anything...... to help..
Lita~ I adore you darling your spirit soars everyday. I think you're one of the most amazing women I have ever known. Apparently Lori in Ca is pretty special too. Many thoughts of support for both of you ! Much love
~ M~
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Micmel, I do not agree that we have lost the power to say "enough fighting." We certainly cannot snap our fingers, but even out here in gun-control obsessed CA, most people can figure out a way to kill themselves if they are determined, with a gun or drugs or driving their car off a cliff or otherwise, but it is remarkable, and encouraging, that they choose not to, even when suffering greatly physically and emotionally.
So far, I have been told and read that I have a "good" type of cancer, but since diagnosed at 63 I derive great comfort knowing that if the "10% chance of progression to Stage IV within 10 years" chance happens, AND I cannot tolerate the treatment despite best efforts to ameliorate side effects, my 357 Magnum and/or enough narcotics to do myself in are in my safe waiting for me to say when.
I do not know how it will play out with me (I have significant autoimmune problems, so it is unclear how those will change the stats), but I do know that people like you and Lita and others can, and do, endure horrible suffering but still choose to cling to life because you have hope, independent of whether you believe in a higher power or not, and independent of whether or not you believe medical science will suddenly find a cure to totally heal you. You understand that where there is life, there is hope, even though you are legitimately mad as hell that you feel cheated of ability to grow old and senile and die in a nursing home like so many other people do these days after living for decades watching kids, grandkids, and even great-grandkids grow up, cancer-free.
Until the BC diagnosis, for several years I already worried that my pain and quality of life would at some point get so bad that life would become not worth living, especially when the central government apparatus launched its "opioids are bad for you so we will unilaterally deprive you of them" campaign a few years ago, which continues unabated, so I am already unfortunately experienced in dealing with suffering but know that although I may not be totally in control of the BC and whether it will progress, there is a lot I can still control. This includes not just having a back-up stash to end things, but also repeatedly telling DH, and writing down instructions, that should I lose mental capacity and things are looking really bad for chances to regain my mentation, as my durable power of attorney for health care he should say NO to aggressive procedures and medical heroics. Right now, what makes me most worried, is that despite my talking to him, I am not sure he would have the spine to say "enough", but I will continue to work on him.
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I don't know if it's "hope" - dying seems like it's gonna be fucking scary. I don't wanna die.
Eve
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Chronic~I also have all my paper work and power of attorney set and filed and notarized by an attorney. Not leaving anything to chance, don't want wires all over myself. What I mean about we don't have any choices how it will go for us , is because we don't.......at least I don't. I have my two kids that are beneficiaries for my life insurance policy. If there should be any signs of suicide or any such thing. That benefit would not be paid out to them. I could never allow that to happen. So in my Case I don't have a choice. The second thing is doing that and going to those lengths to take my own life would destroy my family. That would not be fair to them in any way. None of this is fair and some see their ways different, with different choices, but for me. That's is just not an option! I am off to bed. Rest well ladies. ~M~
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Not to be morbid but... if you have had a life insurance policy for at least two years (or one or three; it depends on the company), it WILL PAY in the case of suicide. If you're worried about it, check your policy's exclusions clause.
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Yes, I was just going to say my policy reads the same.
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I wonder how many beneficiaries don't even put in a claim when an insured person commits suicide because they just assume it won't be paid?
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I am not metastatic. But I think about the end. I hope it's something quick, like a heart attack. My dad died of cancer (no cancer on my mom's side though, the side that seems to count in the breast cancer tabulation). He laid in that hospital bed, my once larger than life dad all curled and bent, shaking in agony. It was so past pain. The cancer was in his bones, his spine was mush. He was in excruciating hell. He had been a rancher all his life and there was a rule. If you had an injured animal you did what you could to save it and if there was no saving it, you shot it. No man who called himself a man allowed any creature in his care to linger and languish in pointless agony. That was dirty farming. Bad animals either got healed or got shot. I remember the day I said to mom that if dad had been a cow, we'd have shot him a long time ago. Being forced to watch him die that way was an obscenity. By the time he passed we were all sickened and destroyed by what we had seen. You can't get that out of your head. No one was made better by it. No higher being was edified by this human sacrifice. Because that's what it was. Human sacrifice. As if dad's suffering was pleasing to some deity.
Towards the end they withheld food and water. He got morphine which was no longer even close to adequate for pain control - another medical failing that angers me still. It was a death vigil, a gruesome end to an outstanding life. A tragedy, a travesty and absolutely unnecessary.
Canada is now trying to iron out Right To Die legislation, doctor assisted suicide they call it. Suicide? Why, if you have a terminal illness, is it suicide when your death is imminent? The word suicide indicates some failing. Sure, the failure to suffer pointlessly. As if that's the right thing to do, languish until everyone is so messed up in the head - yeah, that's the legacy I want to leave behind; emotional horror.
Could I ever have pulled the plug or pulled the trigger on my own dad? No. BUt had the option for someone else to painlessly usher him out presented itself, I might have taken it. Hub and I just got wills and such in order. Medical directives are part of that. I have not filled mine out yet. But I am sticking with my hit man idea that I had when this cancer thing all started. Hire a sharp shooter, pay him in advance and when things get bad I will call him and tell him, any time now, Guido. And then one day when I least expect it, when I am in the garden or feeding the chickens - boom. Over, done, no suffering. I won't even see it coming. That's what you pay for. The skilled guys make sure you never see it coming. It's either going to be cancer, a doctor with a needle full of death or a sniper in the trees that I have hired to be there. Roll the dice.....
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This post has been deleted. It was about obnoxious family of origin stuff. About ruined sibling relationships. I really don't need that crap on the internet forever. To the posters who read and replied, thank you and it's good to know that the idea of family being there is often a myth. As in all things in life, who you get for family is a crap shoot.
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So sorry for those suffering from poor health. Runor, you did the right thing and you were very courageous in attempting to reach out to your bro. I wish it ended differently but who knows, perhaps someday you will get that call. I hope writing your thoughts was cathartic.
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Runor, our dysfunctional families frustrate & anger us but also provide good material for any books we may want to write in the future. I fell out of touch with my youngest brother after our mom died (she had been the person keeping us all connected). I made an effort to call & write my sister & always asked about my brothers but seldom heard from any of my siblings. I was, therefore, excited when a Christmas card from my sister arrived in the mail many years ago (I laughingly called it a "Christmas miracle"). Her upbeat holiday message was that she had forgotten to tell me the our brother had died some months ago. She also informed me that she couldn't stop me from calling or writing but that she probably wouldn't answer in the future because she was just too stressed & too busy to deal with me. Needless to say we are no longer in touch. (I do regularly call or email my other brother & we have a pleasant, supportive relationship.) Families, gotta love 'em!
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I haven't been able to stop thinking about LoriCA's post. Then Micmel saying we have no choice. Then chronicpain talking about suicide and that continued for a few posts. When I read LoriCA's post, I just thought how I would stop treatment, at least THAT treatment, if I was in her position. Pooping on yourself every twenty minutes? Five times a day doing laundry? Your MO not believing that the diarrhea is a SE of Taxol? I would stop the Taxol and that other one that starts with P which also causes diarrhea. How did we get to suicide? I guess stopping tx is the same thing ... maybe. But that is what I will do. And I am not just saying that either because I have DONE it. I have stopped two different treatments that were making my life miserable but that MO said I needed to be on. Maybe it depends on how much you think people in your life need you to be alive. Really want you to be alive. Think it is ok for you to suffer terribly to stay alive. I have no such people. My DH, DS, and sister will be sad but all would want me to decide when I have had enough. I guess I am just not good at suffering. I have a very low pain threshold and, I guess, a low suffering threshold. There will be enough suffering in the dying process. I don't need to create any extra with treatments beforehand.
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Thank you for your kind words Micmel. I did skip my last Taxol treatment and now 5 weeks later I am finally 100% "normal", at least what I call normal haha. I needed this break. Now to decide if I can go through with the final two doses and a few more months of hell, but I got suggestions for an alternative to Taxol and a prescription med to try for the diarrhea from women on this board, so I have some things to discuss with my MO before my next infusion. I think I've made my point that it is definitely the Taxol causing it.
I completely understood how the discussion jumped to talk of assisted suicide. At the back of many of our minds is "how much will we be able to take?" when we get near the end and I'm grateful that California legalized assisted suicide a few years, although it's the furthest thing from my mind right now (the overwhelming majority of people who choose assisted suicide in the states where it is legal are people with advanced cancer). But maybe that's a better discussion for the "Death and Dying" thread.
Stopping the treatment isn't an easy decision for me jaycee49 because I have an extremely aggressive form of IBC that devastated my body in no time at all, literally. One day my bone scan was clear, a week later I had more bone mets than they could count and everyone was afraid that my spine was about to disintegrate any second. Right before my eyes the tumor fungated, ate my entire right breast (I'm flat with a nipple on that side, no mastectomy needed), moved into my left breast, then into the chest wall, into my brachial nerves and I lost use of my right arm, and into my liver all while I was in the hospital and they were trying to figure out why it was growing so darn fast (thankfully my doctor sent me straight to the hospital when I showed up with every textbook symptom of IBC in the extreme). The extensive bone mets showed up a few days after I was discharged when we did another PET scan before deciding on treatment options with my MO. They didn't think I would last 60 days and I was on morphine every 4 hours for the pain, so for a while I was too drugged up to even realize what bad shape I was in. I felt fine when I drove myself to the hospital, and within days I was on the edge of death. I'm still in shock over how fast it all happened.
My response to Taxol has been nothing short of miraculous and absolutely no one expected it to be so good. My MO is concerned that if I stop before I complete the entire course and the tumor starts growing as fast as it was before, it will be resistant and once again I'll only have weeks left. I'm not ready to give up that easily, I fought hard to get back on my feet and am looking forward to having some time to enjoy what's left. I'm mad that just when I was beating back the cancer and and had some small hope, this stupid SE has robbed me of my quality of life. Now that I'm 99% percent positive that Taxol is the cause of the problem, I'm trying to psyche myself up for completing the last two doses, even though it means a few more months of hell, because it would give me some time to enjoy life once I come out the other side. Before this SE started, I was actually feeling pretty good and had started getting out, even went camping one weekend, so I know right now it's just a matter of getting past this temporary issue. Once there is no longer any upside, that's when I'll stop treatment, but for me right now this isn't just life-extending, it's life saving. My husband and my family all support whatever I decide about treatment, none of them want to see me suffering any more than necessary (and they've seen a lot of it over the past 6 months) and I don't have any children who need me. My husband and I have had many, many discussions about it. But for now this is just a temporary hurdle for me, as hard as it is, and the upside is wonderful (remind me that I said that after my next infusion hahaha!!).
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LoriCA, I'm so glad you responded. I did notice how recently you were dx but it didn't really sink in. Six months! You have barely had time to adjust to any of this and you are doing amazingly well all around. I'm so impressed. Assisted dying in not legal in my state and I don't like to confuse it with actual suicide. Chronicpain did mention guns and drugs so I thought that was where she was going. I'm so glad the Taxol is working so well and hope you can manage a few more months. I used Lomotil when I was on that kind of chemo and it works well. MO's are not very proactive with SE's and need to be. Mine was useless. I have a new MO but I'm on an easy tx right now so I'm not sure how she will be in the future. They do need to be lectured once in a while, put in your shoes. I asked mine once, "how would you like diarrhea running down your legs?" No response. None.
I hope I don't have to remind you of the upside after your next infusion because the anti-diarrhea med will be working so well.
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Chronic~ My DH works with someone who he has known for a while now. One day he was sitting and working on the computer, and this man. Looked over at my DH and said, my wife has breast cancer, and it's bad. My DH looked back and said mine has breast cancer also and it's bad.....either of them had known that the other was dealing with this at all. What he came to realize after talking to him for a few more times, his wife had chosen not to do anything about it, wether it be religion, or naturalistic ways, she had chosen not to any conventional treatments whatsoever. It became obvious that I was going to do the conventional treatments and try everything I could to save my life.
Fast forward a year, i went through two kinds of chemo and many surgeries. She chose to go to Mexico for a holistic treatment that costed $15k. It did nothing except almost give her sepsis, because of unnatural herbs and things that they weren't even aware of could have been in it. They came home with her sicker and her tumor grew two more cm's during her time of holistic treatment during that year. Her pain was unbearable and her tumor in her breast was overtaking her entire chest. Her cancer was spreading by the Month and they didn't even know what type of cancer she had because of no biopsy or anything.
Fast forward another year... The last time DH saw him, he looked haggard and DH was told he didn't know what to do except watch her die. She is suffering. Everyday suffering because of a choice. Or even a belief. DH sat there feeling guilty because he was asked how I was doing. He had to look at that man in the eye and tell him that I was in remission and doing very well. All because she didn't try conventional treatments. It's not my choice, and honestly none of my Business what people may choose to do.
But choosing not to do the treatment becomes actually more painful and horrible than you could ever imagine. The suffering is a catastrophe to watch. My DH saw that mans heart first hand through his eyes. The devastation of knowing soon he will loose this person he made life plans with. Building a cabin. Hiking every weekend.... marathon runners. Natural eaters. Non meat eaters. Non smokers or drinkers. And health food nuts. Vitamins experienced, the healthy way to live organic. And she still got cancer. I believe it's all an individual approach and an individual decision, when we are done with treatments. Why I said we have no choice, because I honestly don't know anyone that would really take their own life and put loved ones through that horror and sadness on top of all the battling and suffering already endured by the caretakers. I have never been a caretaker for a sick spouse. So I can't speak from experience,but if someone I loved did that to me. I would hi tail my ass up to heaven, and kick their selfish ass myself. But then again it's an individual perogative. A difficult damned if you do and damned if don't conundrum. There is no easy way out any way you look at it.
Much love to all ~M~
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Hehe yep only 6 months jaycee49 and wow has it been a crazy rollercoaster! I just finally started getting my head wrapped everything, coming out of the combined morphine and chemo fog, when this intolerable SE decided to complicate things and it's been such a set back for me emotionally. I had come to terms with the fact that I was going to die any day, then I had a glimmer of hope dangled in front of me when I surprised everyone by responding so favorably to chemo, and then wham, pure hell for the next 3 months with no idea why (until my last scan I was scared to death that the cancer had spread to my GI tract, or that my bone mets had progressed since I was told to watch for bowel incontinence as a sign of imminent spinal cord collapse) and it turns out to be due to the treatment that saved my life. Ugh.
Lomotil was recommended by Lita57 too, thank you. I am going to insist that he write a prescription for it. OTC Immodium doesn't even slow it down but maybe prescription strength will give me some relief. My MO usually has been good about my palliative care up to now given that I was in such bad shape the first time he saw me and he's usually more proactive than I am about things.. He's just been adamant that what I've been experiencing is not a SE of Taxol and convinced that it's due to something else (especially since I had absolutely no problems with Taxol until I was almost finished with the weekly), this is the only time I have ever had a problem with him not addressing my concerns immediately. I even told him that I'm not sure if I'm conveying exactly how bad it has been. I know that many people complain about diarrhea while on certain chemo drugs but this is not a minor irritation, when I say every 15-20 minutes all day long for more than a week that is exactly what I mean (and then it slows down to "only" 15x a day for another few weeks) and it ALWAYS starts within 24 hours of a Taxol infusion. Now that I'm on the monthly dose of Taxol and combined with Herceptin and Perjeta, both of which have diarrhea as a SE, it's like a triple quadruple whammy haha! I can laugh about it right now because I'm actually feeling pretty good today (and I wasn't at all the day I responded to Lita57), I hope I can still laugh about it after I try the Lomotil!! Thank you.
Lori
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Micmel said, "All because she didn't try conventional treatments." Sadly, some people who started chemo around the same time I did have had recurrences or metastasis. Especially with triple negative cancer, catching it early, surgery, chemo & radiation can all prove ineffective. Just sharing a different perspective...
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