List of all of the Side Effects I deal with that wreak my QOL
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Beesie. You are entitled to your point of view but gee you're really sounding like you work for a drug company - and indeed you may, or you may be a MO, who can say? You have no diagnosis entered, and you seem to talk a lot of medical jargon, facts and figures, and insert a lot of graphs - and not much about emotions or what you experienced …
I understand what you mean by a reduced risk, but 2%? I was told chemo would lessen the recurrence risk by 2% too. I'm not too sure now that having cytotoxic drugs injected into my veins was worth that! What's 2% in terms of the dangers of these drugs? When I said it almost never works, I can't think of a time when I've been told it prevented a death. It might work in some kinds of cancer, but I think that ultimately it's a draconian poison that should be done away with. They should be pouring their time now into developing immunotherapy which seems to be a great success.
Here's what I've found about aromatase inhibitors:
https://bcaction.org/2016/06/07/the-tradeoffs-of-t...
"You have to be careful not to over-treat everyone." Indeed, any treatment which fails to improve overall survival while exposing large numbers of women to health harms and quality of life effects, should be considered extremely carefully—despite the glowing media headlines."
As for your chart on a trial funded by the NSABP – can we necessarily trust the results? Here's some evidence to consider in relation to this thought. I note that in this case the Doctor's surname was Poisson. How very apt.
"In 1994 it was reported by the leaders of the National Surgical Adjuvant Breast and Bowel Project (NSABP) that a NSABP clinical investigator, Dr. Roger Poisson of St. Luc Hospital in Montréal, Canada had committed scientific fraud by fabrication or falsification of data on several NSABP breast cancer trials from 1977 through 1990 [35,36]. In 1990, a data manager at the NSABP central statistical office noted that some questionable data, especially duplicate operative reports with different dates of surgery, had been submitted by Dr. Poisson. The date changes were such that previously ineligible 'patients for the trial became eligible. This led to a series of audits at St. Luc that uncovered several instances of altered dates or altered hormone-receptor values. Dr. Poisson subsequently admitted to data falsification and the NSABP reported the matter to the National Cancer Institute …"
Bravo Dr. Poison (sic). I presume that our Dr. Poison is a medical oncologist. If he's not, he's acting like one.
Dr. John Lee wrote a whole book cutting through all the lies and propaganda and just telling the truth. A doctor with no interest helping drug companies sell their drugs, and merely wants to let women in on the reality of what's going on. He has this to say about Tamoxifen:
"(In regard to Tamoxifen) .. with its long list of serious and even potentially deadly side effects, we believe that the only reason tamoxifen is used at all is because conventional medicine has so little else to offer women with breast cancer. Within a generation, we believe it will be seen as a national scandal that his dangerous drug was prescribed to healthy women deemed at risk for bc. Just in case you're wondering about the profitability of a drug like Tamoxifen, it's estimated that at least 60% of women with bc are taking tamoxifen and at a cost of about $1k per year each, that's $1000 000 000 (1 billion) a year into the pockets of the drug company … The tamoxifen freight train is rolling, and despite the harm it does and its very debatable benefits, it will take years if not decades to slow it down again.
…other side effects of tamoxifen include a tripling of the risk of potentially fatal blood clots in the lung, increased risk of stroke, blindness, liver dysfunction. In fact it has never been shown that tamoxifen reduced the mortality rate of women using it long term, regardless of the protection against bc. In other words, if you use tamoxifen, it may reduce your risk for a while, but there's an approximately equal risk that it will cause you to get something equally serious or to die of something else. As far as we can tell, the so called mortality benefit of tamoxifen was created by statistically lumping together DCIS patients with patients having a palpable cancer tumour (DCIS is not even a true cancer, and has a 99% ten-year survival rate regardless of treatment) … it's probable that if you take the DCIS out of tamoxifen mortality stats there would be no mortality benefit. Furthermore, except in 10-15% of women under the age of 60 with node negative cancer who had a hysterectomy, tamoxifen doesn't prevent a recurrence of breast cancer, it only delays it –and at the high price of a nearly 2% risk of potentially fatal lung clots and endometrial cancer."
As for "the shifting use of absolute and relative risk numbers" –
"By juxtaposing text reading "women who took Novaldex had 44% fewer bc than women taking sugar pills" with text asserting that heath threatening side effects "occur in less than 1% of women" Zeneca is deliberately creating an inaccurate impression of the risk/benefit ratio of this drug. The average consumer reading this text would understand that she has a 44% chance of benefiting from taking tamoxifen and less than a 1% chance of experiencing the associated risks. If the ad used relative risk consistently it would say that women who took tamoxifen had 44 fewer breast cancers and 253 more endometrial cancers. Alternately if Zaneca wants to use the absolute numbers to assert that women have only a 1-2% chance of being harmed by tamoxifen, they should also explain that in absolute terms the women have only a 1-2% chance of benefiting from the drug depending on their underlying risk of getting bc. Novaldex produced a reduction of 2.9 cases of bc per 1000 women but it also increased by 2.8% the number of life threatening adverse events like stroke, uterine cancer, and blood clots. There was no difference in survival and no difference in the number of women dying of bc – 6 on placebo, 7 on tamoxifen”
Indeed. Thanks Dr. Lee. I will never trust anything a MO or a drug company endorsed trial have to say. Corruption, lies and deceit abound - too much money to be made
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Hi Ruby red- I would personally base my treatment on facts rather than testimonials or horror stories. I looked up Dr. Lee, and he died in 2003, and I am not sure if tamoxifen was generic back then. I looked it up and generic tamoxifen can be purchased for $109 for a years supply without insurance. Yes I did have some side effects from the chemo and radiation, but they were not that bad. I actually did better on chemo than I thought I would, and my MO thought I did better than average. He told me that he did some changing of the the administration of my chemo at my second session, based on the side effects I told him about that I had after my first session, and so I did not have as many side effects. At first he thought that there was a chance I could get by with only chemo, but after he saw the biopsy report from my lumpectomy, he said I definitely needed chemo. My MO is located at a different hospital than my surgeon, and my MO even had one of his pathologists look at my slides too to confirm the diagnosis, and he sent a sample off somewhere because something was rated equivocal in the biopsy report, but the place he sent it to for a second opinion found out it was not present.
There is a homeopathic MD in Evanston where I live right outside of Chicago who used to preach how a keto diet could prevent and cure cancer. She was then diagnosed six months ago with esophageal cancer. She decided to go to Vienna to have immunotherapy instead of going the conventional route, and it did not work. She is now going through chemo. She is a little bit better than she was, but she almost died a few months ago, and had to have surgery for a bleeding ulcer. She had to close her practice. She is 59, and does not understand how she got cancer when she eats vegan and does not smoke and is not overweight. She is 59.
I am afraid that if you scare people off of conventional treatment, that they are going to end up with stage 4 cancer. Yes I have side effects from my femera, but they are tolerable. I do get muscle and joint pain, but I find I do better if I stay active. I also have to be more careful about what I eat because other wise I would gain 50 pounds. Why are the MO's still trying to push tamoxifen on you when you were diagnosed in 2008 with BC? That is why you do not get along with any of the MO's you have had because you have refused the tamoxifen. You are going to have to find somebody who is comfortable with you skipping the tamoxifen. You also need to learn how to deal with your anger. You are never going to feel any better if you continue to hold this much anger. You need to see somebody who can help you with this. I understand why you are angry, but holding onto the anger is not going to help things. When I was going through PTSD, I had a lot of anger for the person that almost killed me, but now because of neurofeedback, I can deal with it.
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Mac - “So it seems rather strange how many people show up here to make sure a positive spin is put on a thread with a very negative title.
This thread is my safe space to vent about all the harms done to me. I don't expect anyone to fix it. Really I don't. I also don't get why I am expected to be either quiet, or positive about any of it."
Totally agree. You've now been told to leave your own discussion. It's the censorship thing I've mentioned. You can't be angry without that being corrected. We need to be gratefu, happl and compliant in order to be doing cancer the right way.
As for anecdotal evidence - I rather like it. It tells the real story.
ezbmgl - data? Yes of course I do. I can't think of anyone I know of that's survived terminal cancer thanks to chemotherapy. I have however seen many people just suffer more before they die thanks to it. I've seen miracles occur thanks to immunotherapy though. Chemotherapy needs to take its rightful place alongside lobotomy's in the medical hall of shame0 -
peaches1 - if you'd read my story you'd know why “they're still pushing tamoxifen on me". I'm not going to talk about that again. My “horror story" as you call it actually happened - it's not a story.
I know that MO's don't like me, or anyone, who refuses their drugs .. I've talked about that too. I question why you believe it's ok for any doctor to “not get along “ with a patient who says no to a medication? Why on earth would I need to find one that's happy me with skipping the tamoxifen? If you'd read through what I've said has happened to me you'd realise you've again asked me a question that is asking me to reiterate. Perhaps go back and read what I've experienced before commenting
Ive talked about my experiences but AGAIN we are told we must not be angry ... google the Tyranny of Cheerfulness ... we must be happy and compliant.
You know nothing about what's best forme and I find it incredibly interesting that you're dismissing negative experiences as just random “horror stories" - my experience is all too ordinary. We're just not supposed to be angry about it or talk about it.
I know Dr. Lee died. What tamoxifen costs now is irrelevant ...
“I am afraid that if you scare people off of conventional treatment, that they are going to end up with stage 4 cancer.“
I'm not trying to scare people off anything - I've told the truth about my experiences. I'd be careful about saying that if you refuse a “conventional therapy" you'll die. You make statements like that, yet have the hide to say I'm trying to scare people. Are you a MO? You've just said one of the things I've complained about! How dare you use this forum to say that to other women
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I am not in favor of cheerful, I am not in favor of "pink wash", and I am not happy with everything. Still - I don't blame the entire medical community.
However like exbrn, I will bow out of this thread and wish Mac & Ruby a better 2020.
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Thank you minus2
if you'd read about my experiences you'd know that I'm not blaming the entire medical community. I've singled out three doctors I like.Interesting how when we talk about negative experiences we're corrected, told we need to shut up and that we're just blaming everyone.
Exactly how am I “blaming" everyone?
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oh goodness I forgot to mention that you thought the side effects of chemo “weren't that bad" .
I did quite well too I'd say. I never vomited, didn't end up in hospital and didn't die. Otherwise I experienced an unworldly degree of fatigue, had grey coloured skin, lost almost every hair on my body, had terrible acid reflux, couldn't breathe unless I took steroids, after each dose I could feel it in my face and my “guts" as I used to say - I could feel it there and I felt so off I knew that without the anti nausea medication I would have been throwing up for the rest of the day. had the beginning of permanent cognitive changes and felt after my second last dose that I couldn't go on .. I have read that they poison you almost to the point of death .. that's how I felt. Like I was slowly being poisoned by weed killer. And I have a high pain threshold- I can put up with a lot but that stuff really knocked me around. Gruelling experience. All MO's should try it
You didn't find the side effects that bad? Wow. Nurses that administer these drugs wear gowns and gloves (it's been known to cause cancer if it gets onto their skin apparently). We have to flush the toilet twice to get rid of the ghastly cytotoxic poison lest it splash on some poor innocent toilet bystander.
I guess though it is possible to have no side effects ...
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rubyred, no I am not an MO and I do not work with or have any association with any drug companies. I am a patient like just the rest of you. I have been on this site for more than 14 years, arriving here right after I was diagnosed in September 2005. I used to have my diagnosis detailed on my signature line but I removed it for personal privacy reasons. Frankly these days most often when I am posting I am trying to address the questions and concerns of someone who is worried about testing or newly diagnosed, and my diagnosis is simply not relevant.
I've mentioned many times on this site that I have a decades long background in research - non-medical, but it means that I am pretty comfortable with research studies. I have been digging through breast cancer research for 14+ years and since I joined this site, I have always posted research study results. I usually include a link to my source so that anyone else can read it for themselves and come to their own conclusions. If I misstate or misinterpret a research finding, I hope that someone will point it out. I try very hard to present accurate information, based on what is known at this point of time, recognizing that medical knowledge changes daily.
I am analytical by nature. I do find anecdotes and one time incidents to be interesting (such as the fact that 25 years ago one doctor out of thousands involved with NSABP trials was found to have falsified data), but a sample of 1 just doesn't cut it compared to research studies with 100s and often 1000s of patients. So the information I post on this site usually comes from research studies, not anecdotes. Some people appreciate that, others not so much.
That said, when it comes to our dealings with the medical system as patients and supporters of patients (in addition to my own breast cancer, I've seen some family members through major illness over the past 14 years), every individual experience counts. This thread was started by macb04 as a place to talk about her personal experiences. Unfortunately the discussion veered into stats and data, and I have trouble staying away when the discussion moves there, particularly if the stats and data are wrong or misunderstood. But I will exit here and leave the thread so that the focus returns to macb04's concerns.
One last comment. If I was told that chemo would reduce my metastatic risk by only 2%, there is no way in #&!! that I would take it and I would challenge any doctor who was recommending it. My MO's area of research interest happens to be the side effects of cancer treatments, and through discussions with him I know that he would not recommend chemo for such a low risk reduction benefit. Of course, many MOs do, but then in my 14 years on this site I have also seen many patients choose to take chemo for only a 1% benefit, even against the recommendations of their MOs who explain that the benefits are small and less than the risk of serious side effects. All patients, and all doctors, are different. I learned early on from posting on this site (after a big 'foot in mouth' mistake/assumption) that I should never make assumptions about what is important to someone else, or what decision they will make.
Edited for a typo only.
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I am very disorganized and I have a learning disability which I found out about 20 years ago, and when the nurse navigator went through the chemo 101, and told me what side effects to be concerned about, and went into all of the over the counter and prescription meds I would have to take while I was on chemo, I was worried that I would not keep everything straight. Even my therapist worried that I would have problems remembering when to take the meds. I did much better than I thought I would. As I explained the first session was the worst, even though I had a wonderful nurse, but then before I was given the second round of chemo, the MO asked me what kind of side effects I had from the chemo, and then he adjusted the cocktail so I did not have as many side effects. The worst thing was losing my hair. It all fell off one evening, but it all grew back. I was on compazine to prevent nausea, and I found out I could not eat spicy foods for three days after my chemo sessions, and I was a little fatigued for a few days after my session, but then my strength came back. One time I walked to the farmer's market when I should have driven because the heat index was about 103, and I thought I was going to die by the time I made it home. I found out I craved comfort foods.
My MO is shy, and there are times I see him where he says maybe 10 words and that is it, and so all he usually does is examine my breasts, and a few times he's asked me if I am taking the letrozole. If I have a problem I find out that I do better approaching his nurse navigator who is much more talkative and is wonderful. Last time I mentioned the side effects I was having from the letrozole, and he told me he was putting me on a supplement, but did not say which one. When I got the written summery of the visit, I found out he was putting me on fish oil.
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Would you mind sharing your thoughts on Medical Cannabis? We are looking for people to take our Survey. Only for those living in the US, and who have been diagnosed less than 5 years ago. Will take 10-15 minutes to complete. Thank you, thank you!!
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hi moderators I'd like to do it but why isn't it open to everyone
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ruby red, I did not have chemo or rads but had BMX and recommended to take Femara. After researching the drug and all the potential side effects, looking at recurrence risks, I decided to not even start an AI. As soon as I told my breast specialist NP, there was a definite change in her attitude towards me. Previously very warm and engaging, suddenly it became “just the facts ma’am”. I don’t particularly like it, but as long as she does her job I don’t really care. It’s also significant that NO ONE @ my cancer center discussed potential side effects of Femara....not one word. This does make me angry......how many women are agreeing to take these drugs without full disclosure. I fault no patient for their decisions, but I do fault medical professionals that do not provide enough information for patients to make a fully informed decision about treatment
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Hi Yogatyme
I refused tamoxifen and the AI's. Same thing - as I've discussed. They only treat you well if you agree with them and consent to their medications without question. They do not attempt to inform you of all risks and when they mention Some of them they are glossed over like “you might have vision issues ... that's not going to concern you though surely hahaha"
That's what I was getting at when I said that arrogant drs that are lying to their patients and treating people badly are the norm in MO not the exception - They might be nice to you at the beginningbut become very nasty if you don't give consent. What right do they have to do this?! Lot's of skewed stats in favour of drug companies. I don't blame innocent, scared vulnerable people either. That is exactly my point, it's the mo's. Women that have experienced this need to speak up.0 -
I did have the vision problems on Femara, enough to have to quit it. I was offered Tamoxifen but I refused. The Femara also cause so much pain I was hobbling to the bathroom at night, it was very painful to rollover in bed and in the morning I felt like I had one foot in the grave as my mother used to say. It all happened after I was switched to a generic made in India. I tried to talk to my MO about the inactive ingredients and trying another brand but got a blank stare and a dismissal. However, she has not really changed her attitude towards me since I went off 2 1/2 years ago. It was the radiation that really worked me over. I am still paying for that 3 1/2 years later. Now I have radiation induced neuropathy and I am told it will be progressive. Pain everywhere, arms, hands, legs, feet, face bones? All for 3 mm in one positive node. And long term breast lymphedema, numb arm from the ANLD, and breast angioedema.
Edit* I forgot right lung fibrosis and two thyroid nodules.
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I agree yogatyme with the need to have open disclosure of the facts, ALL of the facts. When you are absolutely shattered by a bc diagnosis, it is so very hard to sort fact from fiction, especially when the bc medical providers start hounding you to agree.
Like Ruby and Marijen said we did not see these problems coming, in effect we were often blindsided with no road back.
I had a second onco doctor who was at least respectful and pleasant, but I rather think he is an anomaly. The cancer place, scca, gave me an enormous amount of difficulty and hassel when I wanted to switch away from hanna linden, the onco doctor who said the abusive, heartless comment about if my cancer came back they would " Cut off your arm" What was wrong with that woman? How could she EVER consider that an acceptable thing to say to a mutilated women like me? What's even worse was the fact that I wrote to scca's Patient Relations Dept and told them Verbatim what she said to me in front of her nurse, AND my friend, and they pretended she never said any such comment to me, ignored it completely. How could they ignore such abusive behavior, in front of 2 witnesses? Sent me a Form Letter about it for God's sake " sorry I didn't like her care. . Initially wouldn't let me switch away from the terrible oncologist, made me jump through all sorts of hoops before finally letting me get the considerate and honest oncologist. Such BS.
A very dysfunctional institution, scca.
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Mac, that's what happens when you complain about them .. denials and circling the wagons. These people are immoral. They have no problem with lies. They've shown their true colours by the way they treated you that prompted the complaint - people who are rude and nasty to cancer patients aren't going to play nice if you speak up.
I experienced rudeness and nastiness upon my recurrence - when visiting a MO. Because I was refusing Tamoxifen I was blocked from another treatment option out of spite, and told I could not have one without the other. His response to my formal complaint to a healthcare regulatory body was to deny that he was rude, blame everything on me (saying that I interrupted him which made things difficult for him) and then denied that he had told me I couldn't have ovarian suppression without Tamoxifen
He was rude. I did not interrupt him and he did tell me that I could not have ovarian suppression without Tamoxifen.
The truth is he's an inexperienced, rude arrogant man who has opened up an oncology business, latching on to a breast care health business like a leech to gather customers. He describes himself as “an expert" on cancer diagnosis even though he's not long out of training status. I thought only professors were considered experts? This is how arrogant this man is. He apparently prides himself on communicating well. I'm not the only person who consulted him who thought he was rude and arrogant. But, he's trying to get as much business as he can, telling vulnerable frightened people to consent to being poisoned and thinks it's perfectly acceptable to treat them like garbage if they refuse. After all, if they complain he can just deny it.
My advice - NEVER see a MO alone. Always take at least one support person it's not just for personal support, it's because if there is a witness in the room the whole tone of the consultation seems to change. They know they can't be rude to you when tere is a witness. I wish I had never seen this pig but certainly I deeply regret that I never took anyone in with me. The universe will deal with him - he will get what he deserves
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This is not about side effects of bc drugs, but I’m not sure where to post it. The current People’s Pharmacy newsletter has an article about Alzheimer’s treatment. All the research has been on amyloid function and none of the drugs have been effective. New research suggests Alzheimer’s may be associated with the herpes virus and treated w anti-virals......however, the anti-virals have been around long enough for generic (cheap) to be on the market. Pharma cannot make money on them so no one is funding this research. While I agree there are plenty of poor medical providers, Big Pharma is truly evil. It is a shame more research funding isn’t available from other sources.
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I am so sorry for the horrific experiences you've endured, mac and ruby, and everyone else – some of what you describe borders on sounding malpractice-ish, especially with doctors who make threatening statements or worse (then deny them), or don't discuss potential side effects of medications. Even though every one of us has a different experience with this disease and its available treatments, "easy" or "good" experiences are comparatively relative to other experiences we might have had, and maybe even the expectations we have of our treatment.
My first time around my MO explained the most common side effects of the Adriamycin and Cytoxin (nausea, hair loss, nail damage, etc.), and took great care to explain the potential for heart damage from the Red Devil (and ordered an EF test prior to starting treatment). I had to sign a waiver that we'd discussed all of these side effects – and listed them very clearly. The same with my radiation, particularly because I was having left-side directly above my heart and using a breath-hold apparatus. Even then – with all this information and discussion and waivers – I'm not certain I fully understood the potential for lasting impacts on my health. I know I didn't. I thought I'd complete treatment and go back to "normal" and that would be end of it. Chemo was tough but doable, and I had minimal side effects from radiation during treatment. I know I am blessed beyond words that I made it through those times relatively unscathed.
I started Tamoxifen knowing potential side effects – and quit after five months. After a short break I tried Aromasin for two months, then went back to Tamoxifen for a month, then quit everything altogether. No one warned me there was potential for suicidal and homicidal ideation – trust me, I don't say these things lightly or easily, or in any form of jest. I fell into a deep physical and emotional depression. The hot flashes were so severe I turned to Effexor for help (getting off of that was a horror story in itself). I went back and forth with my MO and NP for over a month before I quit. Did they try to talk me out of quitting? You bet they did, and were quick to tell me it would be the first line of defense for a metastatic recurrence. They were strong in their desire for me to continue, but never bullied or threatened. I shared with both of them the severity of my side effects; neither had ever seen such severe reactions to the medications, and the SEs I encountered were considered rare. My MO said they focus on the SEs that most will experience, rather than those that are highly unlikely to occur. They never denied the side effects I experienced; they'd just never witnessed them first-hand. I appreciated their response. Because I was no longer taking Tamoxifen or an AI there was no reason for me to see them more than once a year so we cut back my visits until my recurrence three years later.
Long-term, though – that's a different story. I have radiation fibrosis in my lung and some diminished heart function (but I still work out and run like crazy – just a little slower these days). Mild neuropathy in hands and feet was exacerbated by chemo for a local recurrence – which also left me with severely thinned hair (and bald spots in a couple of places). Even with all of these negative and long-term SEs, would I have chosen not to do chemo or rads, or not tried Tamoxifen? Probably not. If I don't try, I'll never know. And even now, with a Stage IV diagnosis, I don't blame the treatment – it was brutal and tough and left me a different person than I was pre-diagnosis, and it didn't kill my cancer, but frankly I'm not sure my cancer can be killed so I can't assign blame.
This doesn't diminish the horrific side effects anyone else experiences. We all have different perception, expectations, and outcomes. No one – no doctor, no surgeon, no oncologist or NP – ever promised me this would be easy, or that I'd be the same person when it was over. I knew I was in for a fight and I came out battered and scarred on the other side. But I'm still here, a little worse for wear but alive and still fighting. Treatment options suck – they do for all of us, anyone with cancer, there is no easy out with this insidious disease. I hate what we must endure and it's not fair and it's not right – but it's what we have, right now.
I am truly sorry for all the suffering shared on these pages. I hope we all find peace so we can fully live the life we endured these treatments for.
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I’m sorry for everything you’ve had to go through Nancy. I’m glad you got off Tamoxifen and happy for you that your decision to do that was treated with more respect than most people would encounter. Malpractice? It certainly is. I’m well aware of that ...
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Nancy, I am blessed that the PCP I have had since 1999 actually is also a breast cancer survivor. She told me that she was suicidal when taking tamoxifen. She prescribed effexor for me before I started tamoxifen. Luckily, I have been fine just taking 1/2 of a 37.5 mg tablet per day along w/ just 10 mg of tamoxifen per day. (better 10 mg than none)
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Yogatyme. That's interesting and doesn't surprise me in the slightest. I think that drug companies will always distort the truth, mislead and knowingly harm people if that's what it takes to make vast amounts of money. I keep thinking about that movie about Dr Richard Kimble ( I can't remember the title) where the doctor he trusted was involved in a cover up and his wife was murdered just to get him out of their way ... a fictional movie but I think that the basis of it, the corruption that evolves when there is a huge amounts of money to be made, is totally real.
Dorothy - what is a PCP? “Better 10mg than none” I feel it’s more like better none than 10mg.0 -
Count me in the camp who got lucky: I had full disclosures from my MO abut the risks like permanent hair loss, neuropathy, etc. Just as there are arrogant, detached fuckhead MOs there are also very caring, humane MOs.... I guess kind of like the whole world.
I told my MO that a long life would not be worth it to me if I suffered major debility all that extra time, and that being able to take a hike up a mountain or ski down one was important to my QOL. I spoke up for my priorities. With this in mind, he did not do red devil but put me on a chemo thought to be less damaging to the heart, Taxotere & Carboplatin. He was also very flexible to the integrative practices I did... without any strong endorsement, neither was there shame or negativity or eye rolling. Again, I explained I had to do 'more' to help myself, and that also helped me mentally and emotionally to leave no stone unturned... I could be myself and I felt supported. The two or three times he put his foot down about something I was curious to try (for example, he would NOT let me stop prior to 6 treatments -- and he categorically forbade a couple things I asked him about, like copper chelation) the result was when he said "no way!" I genuinely trusted he was watching out for my overall health and wellbeing, since a categorical NO was rare. I strongly felt that he cared very much to heal me, and he was in the trench with me. A big part of healing is a trust relationship and the doctor appreciating the personhood of the patient.
Docs like this are rare, but with luck can be found.
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I am sorry Nancy that all your struggle with the bad side effects and still had bc recurrence.
I worry about it, just like all of us. The difference is my terrible experiences with those bc medical md's left an enormous scar on my psyche. Trust has been mentioned as a key ingredient in a doctor-patient relationship.
I have zero trust in any medical providers. I am so apprehensive over even the idea seeing one of them that I never go back. I haven't seen any medical provider other than the GI doctor who wreaked my already vulnerable Left lung ( some rads fibrosis to my left lung) with aspiration pneumonitis following a colonoscopy 2 year ago. The last bc industry medical provider I saw was almost 6 years ago. I didn't feel safer, so no point going back.
My lung is doing better, finally not bothering me when I exercise. I was asked if I would have another colonoscopy. I have decided no. I worry that the next time I might be really seriously ill with worse lung damage, that I can ill afford.
I have to agree with Ruby, bring a friend or family member. It didn't help me when dealing with the abusive oncologist, who must have known she would have the backing of institutional administration. That being said, having another person there with you to be a witness might be helpful. It's worth a shot.
I think it is always a good idea, like santabarbarian said, to tell doctors what are key quality of life points for you. If you luck out, then that doctor might care enough to listen.
I just know that I didn't have a minutes luck in that regard. By the time I got the courteous oncologist it was too late. All the damage had been done. He even told me that chemo was unlikely to be of any use with the ILC kind they said I had. So I found out the nasty hannah linden put me on chemo poison, and it wasn't even of any use. All that permanent damage for nothing. All that wasted suffering for myself and my young children, from 5 months of hell.
The bc industry poison is giving me night blindness, and I am loosing my hearing. Two side effects they never mentioned. If you ask an Opthamologist they say there are tons of bc industry "treatment" related vision issues that are never discussed. I bet if you asked an ENT or Audiologist, they would say much of the same thing about damages the bc industry causes to women's hearing.
There must be a failure in the system of medicine, because it seems to be such a crapshoot to find a doctor who is kind and treats people like human beings. Seems like their training teaches them to become detatched so they can't feel our suffering. If they had empathy at the start, most seem to have lost it by the time they have md attached to their names.
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I don't think every member of this forum has had breast cancer. I think that sometimes people join to push an agenda. Most people are here to discuss their fears, vent anger, express despair and sadness, talk about aspects of their life in relation to bc, get support by sharing experiences and provide anecdotes; because that's life. We've talked to our doctors, we're asking for advice in this forum about others experiences and thoughts. I had a recurrence and wasn't sure in terms of increased lymphedema risk if I should have radiation again. I didn't want graphs and trial results. I wanted the opinion of other women based on their experience having had axillary clearance surgery and if they'd had problems, what they'd do differently etc. Because bc has changed us and is on our minds we come here to be with others who understand, it's our safe place. There's usually a personal touch to a post where the person has had bc. There's usually some advice given based on personal experience. Only someone who's never had bc would be clinical and detached every time they post
Think about how a MO would talk if they were here. I'm not sure that makes me feel safe.
Remember when it comes to cancer, drug companies etc, things aren't also as they seem. I think that this forum shouldn't be publicly viewable. I think that entering a visible diagnosis should be essential so that we all feel safe in sharing our private thoughts and experiences with other people who've been there - who are able to and willing to share their thoughts too. I understand it's good that it's optional to enter a diagnosis. For privacy reasons there's been tines I didn't have details entered. But I reluctantly put them in because I thought it was better for me to get support if others had an insight into my story via a diagnosis. I also did it in order to feel that I was being open and fair - much like a AA meeting - we're all scared. We all want privacy. But if I'm asking you to support me, I need to give you back what you're giving me; a safe place to share cause we are for genuine reasons.
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rubyred, you are obviously referring to me in your post when you say "I don't think every member of this forum has had breast cancer. I think that sometimes people join to push an agenda" and "Only someone who's never had bc would be clinical and detached every time they post". You'd already said that you think I work for a drug company and now, while not mentioning me by name, you are quoting what I said in my response to your earlier comment.
I have over 9,700 posts on this board over 14 years. I'm analytical by nature and I'm a research junkie, and that's reflected in how I post. You don't like my posting style? Well, you're not the first and won't be the last, but then I have received 100s of PMs over the years from people who thank me for providing fact-based information. And if you made any effort to look at my posts outside of this particular thread, you would see that I have shared my fears, I have vented anger, I have talked about aspects of my life in relation to breast cancer (I've discussed starting a new relationship and getting married after my BC diagnosis and MX), I've shared personal experiences and provided anecdotes (I've talked quite a bit about the other illnesses in my family, including prostate cancer among the men, which I even mentioned in a post in this thread). In threads where it would be helpful to the OP, I have shared information about my breast health history (which started with my first surgical biopsy at age 16), my diagnosis and how I reached my treatment decisions. Perhaps before taking a shot at me you should have bothered to do just the tiniest bit of reading/research.
You have been on this site since 2008 and have 179 posts. Almost every post is a vent, voicing your anger about some aspect of your treatment or your doctors or the breast cancer community. Now you are going after other members of this site. I get that you are angry, but that doesn't give you free rein to go after people just because they've posted something you don't agree with. While you may find venting on this site to be cathartic, if you have not already done so, perhaps talking to a therapist to deal with your anger over your breast cancer experience might be helpful as well.
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I did say I was exiting this thread but the obvious swipe at beesie compels me to return.
Beesie,
For those of us who make treatment decisions based on facts, statistics and science based research, I can't say thank you enough. You have done the heavy lifting for so many an I, for one, am grateful. I especially love how you provide reassurance to those awaiting dx or recently dx'ed. You have talked so many off the ledge with reasoned, logical compassion. You rock my friend!
Although your focus on science based research may not be everyone's cup of tea, to make a leap and conclude that you haven't had bc or are some kind of a medical/pharma shill is baseless, IMO. To suggest that not having a listed diagnosis is further proof of this is equally baseless. Many, many members do not list a diagnosis for a multitude of reasons. Additionally requiring a public dx line does not filter out the rare, and I do believe they are rare, cancer fakers.If you are intent on faking cancer you can just as easily fill out your dx line with false info.
Let's not start making such serious accusations against others, especially someone who has been incredibly helpful and generous with what she has learned. We are all in different places with different experiences and outlooks. I myself put give very little weight to anecdotes because, like beesie, that's how my mind deals with evaluating treatments and decisions. Yes, of course there is a very emotional aspect to bc! But to say that someone who doesn't fit into your parameters for expressing emotions might not have bc? Well, all I can say is that is a very restrictive, and false, measure.
Regardless of how you write about bc, regardless of how you view conventional medicine and it's practitioners, regardless of what you, as an individual have gone through, let's not make hurtful and baseless accusations against others.
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Here's another long time member who said I was leaving this thread, but....
Ruby, of course you are safe to say whatever you want, however - I also believe you should NOT impugn others - disputing the truth, validity or honesty of their statements. You don't "know" these people. Although you may have joined in 2008, you haven't been interacting with any of us on a regular basis, nor seen how many people have been comforted, encouraged or helped to understand the hills & valleys of this bewildering disease
To post your own thoughts & feelings is OK. To snipe at others, not so much. Get out of attack mode. Give it a rest. Try to find someone who can help you deal with your issues.
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Thank you Beesie, exbrnxgrl, Minus. I couldn't agree more.
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"exbrnxgrl wrote:
"I did say I was exiting this thread but the obvious swipe at beesie compels me to return."
Oh my this is ridiculous – if you exited the thread, how did you know to edit a sentence in relation to a later reference to it, and then to answer my latest post? I'm not sure what your motivation is to be here, other than to defend Beesie? If I have commented on a thread, unless I have a lot of emotion tied to /personal experience regarding that topic, I leave, and don't read it anymore. If I say I'm leaving it, I leave it. So you didn't "exit" the thread, you remained, checking in and lurking –in case you had to defend something?
"Beesie, For those of us who make treatment decisions based on facts, statistics and science based research, I can't say thank you enough. "
Many of us have looked beyond the "science based research" and have found that things might not always be what they seem – see my earlier post that explains that. There is an awful lot of research that explains the truth about tamoxifen and AI's but I'd say that due to the squillions of money to be made, there's an awful lot of energy put into squashing that out and keeping it hidden. Beesie came along to defend their position when MAC first pasted in a vast list of cold hard truths. A lot of the positive spin put on survival rates, is often due to the inclusion of DCIS stats, that skew the results. Figures and results are skewed to suit an agenda when it comes to certain drugs – I won't be requoting my previous post, it's all there.
Do you honestly believe that drug companies are honest? That they don't skew facts or figures to suit a money making agenda? I've talked about my dealings with MO's – and so has MAC and a few others. We know that they are not always honest and ethical. If you want to make your decisions based only on these "facts" and stats, go ahead. We have all listened to doctors we trust and consented to treatment we've had, based on these views. We are also free to do our own reading to find out what might be real and what's just falsified information based on the desire to make billions of dollars. You seem awfully threatened by that.
"Although your focus on science based research may not be everyone's cup of tea, to make a leap and conclude that you haven't had bc or are some kind of a medical/pharma shill is baseless, IMO. To suggest that not having a listed diagnosis is further proof of this is equally baseless. Many, many members do not list a diagnosis for a multitude of reasons. Additionally requiring a public dx line does not filter out the rare, and I do believe they are rare, cancer fakers.If you are intent on faking cancer you can just as easily fill out your dx line with false info."
Yep, agree with all this. I actually hate having a diagnosis entered due to this forum being publically viewable – I am always thinking of deleted it again. Agree completely that it still doesn't rule out fakers. Agree. I was saying that when someone's posts seem clinical over and over, with no diagnosis entered, and further to this, they seem to strongly defend drug companies and shrug off information that condemns them, it seems odd.
It might not prove a thing, I agree, I'm saying it makes things seem suspicious. I think that there would be many members here who haven't had bc, but are members of the bc industry – whether psychologists, drug company employees, or doctors. None of them would enter a diagnosis, unless they are really dishonest and brave. They may be here to just read and learn, or they may be here to defend a treatment or keep people in check? MAC and I have both talked about the murky side of the cancer industry – we've experienced it. Ifeel the way I do based on what I've read from sources I trust, and from what I've experienced, and also from what I've witnessed, and heard from countless other. It happens. There is a lot of unethical, really evil stuff going on. Just because someone is a member here, doesn't mean they're necessarily here for the reasons most people are. Just saying. Can't prove anything. And I'll say it again, in 11 years I've never felt this way, or said that. It's just a really strong feeling I have.
"Regardless of how you write about bc, regardless of how you view conventional medicine and it's practitioners, regardless of what you, as an individual have gone through, let's not make hurtful and baseless accusations against others."
I'd suggest that you stop lurking, and actually don't favourite and keep reading threads that upset you. This thread is intended to talk about crappy stuff that's happened, that has effected QOL – that's therefore going to be quite emotional for most of us. If you don't share these feelings why are you here? I'm sorry if my comments have hurt anyone, but I think I've explained that they are not baseless.
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