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Why Im Not Doing Chemo

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  • MBJ
    MBJ Member Posts: 3,671
    edited November 2011
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    Evebarry: 

    I just saw this post and admit I didn't have time to read all of the following posts, however, have you tried using Iodoral?  I completely cleared up any calcifications in my right, remaining breast and I attribute this to iodine.  I, too, have thyroid issues along with adrenal issues.  From what I understand only those who are Hyper-thyroid can not take iodine supplementation.  I went from very dense breast (s) to completely clear as a bell on my last mamo.  I am still trying to balance my glands but this helped me enormously.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited November 2011
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    Hey, MBJ...good to see you here :)

    I've been on idoral...not right now as a new naturalpath suggest it might not be good for the colon. I haven't checked that out...got to. I am really confused about iodine therapy. There are different types of califications...those that are b9 and those that show up maglicancy. The califications the mammo spotted were signs of malignant cancer. I am not sure that iodoral is the bullet that kills cancer...perhaps lumpy breast. It is definately preventive. I know that the breast needs iodine. I wonder if just putting iodine liquid on the breast tissue would help? :)

  • jazz3000
    jazz3000 Member Posts: 109
    edited November 2011
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    I walked out on chemo Monday afternoon. I was scheduled to do AC and thenTamaxofen(spelling). The needle they placed in my hand hurt after it was placed and I told the nurse it was in pain. Disregarding the need to check it she had me place my arm downward to the floor because she couldn't get any blood in the area she was looking. She then proceeded to do the push with her syringe and as soon as she did the needle and the vein began burning. with each push the worse it got. I told her and she got mad at me. She jumped up and ran to her sup and the two started yelling about how they had been onc techs for 6 to ten years. I repeated the set up was burning and I wanted to scratch my arm off. They continued to yell. I had them remove the needle and when they asked if I was comfortable at trying again. I said I was not very confident in the staff or the chemo and got up and left.

    I started researching statistics on my TN status and it seems to be a non curable but controlable disease with various treatments. It all depends on the persons personal choices and desires. Not so sure the chemo treatments aren't a money making venture for the providers and alternative treatments put down as phony cures because people die. It appears that those in the forums do the same thing. Some make it some don't. I wish I was one of those people who could walk into chemo without fear or doubt but after Monday I would say chemo is not my answer. I think my life is in God's hands and as to living or dying I will when it's my time. I have the same immune system as evebarry, lousy. I've had cancer of the uterus, gall bladder surgery with scarring on all my organs. Since then I've developed issues with my mouth and ears and skin. i have no immune system and my veins have been destroyed through previous surgeries where the nurses popped the veins on the back of the only hand I can have chemo in.

    Tonight I have to wonder about it all. I think living life until I die is far better than suffering repeated assaults on my body where life isn't worth the living at all. Oh well there's my vent for the week. Thanks for listening

  • thats-life-
    thats-life- Member Posts: 169
    edited November 2011
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    Jazz, im glad you got that off your chest. It sounds like a traumatic experience. Why they would shout at you is beyond me!, in 6 yrs of service you would think that they could handle the fear and concern of a new patient even if you were anxious.. and also that they would know if they didnt hit the vein properly, or at least check your concerns!!... Though your experience with the nurses shouldnt change your treatment choice, i understand how you would walk out. maybe in a few days you can reassess, or find some new nurses. Apart from that, dont give up on your body nor on your immune system! Im not sure what stage you are, but earlier stage triple negs can benefit from dietary changes, seriously. Please check out the info on this board and others. Hang in there!...keep researching...then decide on a treatment plan that you believe will give you the best outcome :)

  • jazz3000
    jazz3000 Member Posts: 109
    edited November 2011
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    that's life- Thanks. I have to fall back on my sense of humor at this point. I'm writing again and trying to avoid the whole circumstance. They were screaming at me because a doctor was in the area and I determined they failed to do what they should have and needed someone to blame. The patients inability to handle the situation is their only problem, it's not them.

    So far as treatments go I have never been fully certain chemo was the answer. The .gov on cancer says the realiable treatment is that of radiation. Chemo delays that. My HMO doesn't do rad and so they have to contract out. They don't stand to make as much money off my condition if they send me to another facility to receive radiation. Chemo costs the big bucks and they stand to make a lot. I wasn't offered any treatment of choice I was offered AC and Tamoxifen. Their standard treatment for BC TNs - My BS was the one who shared it's not curable but they can't say that. I've known Doctors and Nurses and worked with and around them half my life. Three had cancer and refused chemo. 

    My diet is gluten free and lactose free. Lot's of greens and some meat. However since monday all I can think about is Lactaid milk. Calcium thing I guess. 

    Anyway I'm waiting for a week or so and reading more and then I'll determine what my course of action needs to be. The breast is gone with the cancer for the moment. It has been donated to science. My Onc and her cocktails might be fine but the bartenders suck bigtime. I'm going to another bar. LOL

  • ma111
    ma111 Member Posts: 167
    edited November 2011
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    Jazz,

    What a crapy experience you had to endure. As I'm sure you are aware, no easy blood return means they should have done a different IV. I've had nurses holler at me also, in front of other patients. I'm glad you are going to go elsewhere. I am on my 2nd oncologist. That sucks that your insurance is holding you up from going to radiation.

    Evebarry,

    This is the site where I do a lot of research. A little hard to read. http://www.ncbi.nlm.nih.gov/pubmed/ .

    Some immune system disorders are treated with chemo. Attack it, 9The immune system), prevents it from attacking the body. One of my sisters has been on low dose chemo for 4 years because of 5 autoimmune diseases. She is also on steroids for it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited November 2011
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    That truly sounds like a dreadful and unacceptable experience. If you still want to do chemo, can you find a center where they know the meaning of compassion and have you considered a port?

    Caryn

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited November 2011
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    Jazz, I relate! Your post made me smile. You were brave to walk out of chemo. I understand, after so many abuses there is a time when enough is enough.

    What gives me hope is that there are alternative ways to fight cancer. I would only do harsh treatment if I was convinced it would not damage my immune system or body. This is why the idea of taking hercepin is a struggle as it could damage the heart & lungs. Why I consider taking hercepin is it helps the immune system. I don't know why it's hard on the heart & lungs.

    I don't have all the answers right now, I just know that my life and times are in God's hands.  

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2011
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    It is logically hard for me to accept the black-and-white thinking of chemotherapy based on occasional expensive large clinical trials that after decades still isn't predictable for the individual patient, and often only offers temporary effect.

    To provide the broadest range of thought about ALL possibilities, I want to mention that one might want to review and consider the option of metronomic chemotherapy. When I was considering treatment, I did have a consult with the Cancer Treatment Centers of America and metronomic chemotherapy was being offered there.

    I have no idea why metronomic chemotherapy with trastuzumab is not being at least discussed in regard to early stage HER2 positive bc.  I've never seen it discussed, but that again is due to the black and white thinking of conventional chemotherapy that MUST be based strictly on the few large, expensive clinical trials that are offered. 

    Just another possibility for you all to give some thought to, in deciding what to do.

    AlaskaAngel

  • jazz3000
    jazz3000 Member Posts: 109
    edited November 2011
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    I love the folks in the forum. They each have different takes on what's good and what's not. Some deal so well with chemo, though it's hard on them, some go through it only to find out they need more and some go through and don't make it at all, or something occurs and stops them from being able to proceed with treatments. I hate reading some of the posts in here where the individual is stunned to find something more has happened and it's worse than before. They've gone through so much and yet like the toss of the dice they just can't win. Ugh! It's hurts to read it and empathize with how their feeling. I hate reading the " I got through, so can you", and then the sudden posts..."I'm not making it". Really hard to deal with it all right now.

    ma thanks for your site info. I've got a bruise running up the arm they were pushing it in and my hand is still swollen around the injection site.  I looked at the blank faces sitting in those chairs around me in that environment. Blank - empty of any soul - and wondered why they were all silent and without expression as they received their chemo. The environment is like sheep being led to the slaughter. I felt like I wound up in a half star hotel in the middle of no where, no way out, but their portfolio shared beautiful rooms and room service. LOL No one can heal in an environment like that. I'm reading and asking more before deciding on whether this is even a go for me.

    exbrxgirl  If I think it's actually going to prolong my life I will consider another center. I'm trying to find someone who co-ordinates the radiation from the HMO. I don't recall signing a contract that says I can't have the treatments I think best and just can't play one of the sheep walking through a maze because the shepard of the HMO thinks that's what the company feels is best for them. Thanks for caring.

    Alaska- HMO's do the same thing with their supplies as does any other companies. They have contracts or win them from gov resources. They have placed themselves in a position to be tunneled into specific treatments due to those contracts. Research contracts - chemo, etc., require certain rules that must be followed. This sets the patient up as a human specimen to help drug companies determine how many of us make it and how many don't. What sells and what doesn't. I know the Doctors and nurses don't always agree with what they have to do but they need their jobs. In the environment I'm stuck with it makes for unhappy people. But the pay is good so you require the patient to do your bidding - put up with anything they dish out, and don't make waves of any sort. Walk in like a robot, sit down and deal with it all.  I need to consider my death as well as my life and what comes in between right now. I would prefer some degree of dignity of life than assaults and insults towards death. They've got to be kidding. LOL

    Evebarry  All of the above is for you sweetheart. You have to do what your gut tells you in this life. If you know that path isn't set for you - you need to follow yours until you know you've dealt with all the circumstances and this is what you choose. This is not a party dress we're picking out girl. This is our bodies and life. Love your courage for speaking out for yourself. You go girl! 

    Hugs to all of you.God Bless and guide all and keep you in comfort and warmth.

     

  • thats-life-
    thats-life- Member Posts: 169
    edited November 2011
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    wow jazz!...do you want to have a coffee? do you want to be my new best friend? lol...I like a strongly presented fear free/non-institutionalised opinion. You made my day.

  • Kaara
    Kaara Member Posts: 2,101
    edited December 2011
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    jazz:  I hear you loud and clear!  Thanks for sharing those insights.  When I talk this way, my friends think I'm crazy, but I know I'm not!

    AlaskaAngel:  What is metronomic chemo?  If it's too complicated to explain, I'll google it. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited December 2011
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    Hi Kaara,

    It is smaller doses of chemotherapy given more frequently. 

    If we are going to see an improvement that reduces the number of recurrences that are the standard result of standard treatment regimens, somebody has to be willing to head in a different direction. The majority continue to do standard treatment in the hope that they won't recur, even though we all know that somebody does recur with the current standard treatments.

    I had wondered if the cancer centers who continue to offer the same general standard treatments year after year have done their homework with any trial to see if metronomic chemotherapy with trastuzumab for HER2 positive early stage breast cancer patients would be better or worse or equal to the current year-in, year-out regimens that are already offered.

    A.A.

  • jazz3000
    jazz3000 Member Posts: 109
    edited December 2011
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    that's life- Girl if you weren't down under I'd love to have a cup. We'll have to go the virtual cup and keep in touch. You can say anything you need to to me. I talk alot but I'm a pretty good listener too. Hugs and hugs for the Australian Shelia. Feel good today.

    Kaara- Ya think it's our age or we're just abstract thinkers? LOL. Read your bio - you keep on loving life. Many blessings and joy to come.

  • Kaara
    Kaara Member Posts: 2,101
    edited December 2011
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    AA:  Thanks for the info...it sounds a lot like the IPT therapy which is a low dose chemo as well, but not supported by conventional medicine.  So, if this is done at cancer treatment centers, it would be covered by insurance and thereby affordable for most.

    jazz:  I've always been an "outside the box" thinker!  Just can't help myself! 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    Women, age 65 and up should think twice before doing chemo. Women who are frail, or who have immunity issues may not be good candidates for chemo therapy.  

    Systemic adjuvant chemotherapy is currently recommended for many patients with breast cancer,1 but women age ≥ 65 years (referred to as older here) are less likely to receive chemotherapy than younger women.2-7 This pattern likely reflects the complexity of chemotherapy decision making in older women as the result of a paucity of clinical trial data on efficacy, perceptions of increased toxicity risk,8-14 more favorable tumor characteristics,15 high rates of comorbidities that can interact with treatment,16,17 and decreases in ability to tolerate treatment related to aging processes.18

  • Kaara
    Kaara Member Posts: 2,101
    edited December 2011
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    Whenever I speak to my doctors about the age related factor in chemo and radiation...that recent studies have said it is not as effective for older women..70+, they refer to my health and youthful appearance as being a factor to consider in getting whatever treatment I might need, suggesting that with the treatment, I would have many more years of life as opposed to someone my age who is already in ill health and might not be able to withstand the SE's of chemo and possibly even rads.

    The rads onco actually told me that radiation would reduce my chances of recurrance from 30/40% down to 5%.  I have time, so I am going to do some research on that, because it doesn't seem to be what I have been reading.  Thoughts or studies anyone? 

  • pip57
    pip57 Member Posts: 7,080
    edited December 2011
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    Keep in mind that the doses of chemo are determined by your size, health condition and the pathology of your own cancer.  

  • jazz3000
    jazz3000 Member Posts: 109
    edited December 2011
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    Spoke with an Onc Nurse at the American Cancer Association today and she couldn't give me much more info than I've all ready researched. They can only quote standard treatment for different cancers. Sometimes it works and sometimes it doesn't. They don't have statistics on the life span of individuals who have had an Mx but refused chemo because that would take to many variables. When I asked where their statistics came from they do indeed come from us and our trials. Hmmmm? Called my insurance company to find out if I could get a second opinion at the Cancer Centers around the area. Yes! Tomorrow I will start looking.

    Kaara- I'm looking at rads as well. Going to be asking a great deal of questions before jumping into anything. 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    Jazz...I like you! I love people who think for themselves. I'm looking forward to the information you're digging up.

    Kaara, I' don't look my age either. BUT... I've pushed myself for years and I know that I'm pretty worn out. My immune system and adrenals are exhausted. I have no doubt chemo would be the straw that breaks the camels back. My gut knows that I couldn't do it and live. I'm worried about hercepin effecting my heart. Just taking hercepin is going to be tough for me.

    I weigh the risk factors and then think to which risk can I live with. What are the greater risks. Will I make it to 70 if I do nothing? Do herceptin?  Can I do something else that is less risky? Are there alternatives that can kill the cancer cells without harming my immune system? What are all my options? What can I do without compromising my now already weaken immune system?

    Tomorrow morning I am talking to an oncologist. It should be a very interesting meeting. I'm definately not going in with blindfolders on.

  • [Deleted User]
    [Deleted User] Member Posts: 2
    edited December 2011
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    Well one thing is for sure. When you go in that meeting, you have 1000 times more information upfront than most women who are just diagnosed. I think your oncologist will be very impressed! Good luck!

  • jazz3000
    jazz3000 Member Posts: 109
    edited December 2011
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    evebarry- if we all get out there with questions maybe we can achieve something in the way of answers. I hope you've written all your questions down so you can get your answers.  Keep us up on what you find out.

    Kaara - Are you triple positive? 

  • Kathy044
    Kathy044 Member Posts: 94
    edited December 2011
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    Hi karra, I have a file folder of studies from two years when I was deciding whether to accept the offered chemo or not. Here is one of them. I was 65 going on 66 at the time.

    http://www.nejm.org/doi/full/10.1056/NEJMoa0810266

    Original Article
    Adjuvant Chemotherapy in Older Women with Early-Stage Breast Cancer


    N Engl J Med 2009; 360:2055-2065May 14, 2009

    (Eric P. Winer who is often mentioned on BCO forums, was one of the listed investigators )

    In the end I did choose chemo (FEC-D) but it was close to 50/50, the tipping point for me was wondering whether or not I could do 5 years of HT. With one positive node I needed to do something. 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited December 2011
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    Kathy, you apparently did well. It all depends on the person, and how much toxicity their body can take. There are risk factors, and for me the risks of future cancers, bone loss, liver, losing your hair, including hair in the middle ears, nail loss, mouth sores, immune compromised, infections and I could go on ... vs possibly a recurrence? Even with treatment you can have a recurrence. I prefer quality of life. .

    I am hoping that alternative natural therapies will do the trick. Or, maybe the mastectomy will remove all the cancer.  I don't know...but I do know this that whatever happens I will trust that God won't let a cancer bullet kill me before it's my time to go. What concerns me more is making the right decisions, and if to do a uni or blmx.

  • Kaara
    Kaara Member Posts: 2,101
    edited December 2011
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    jazz:  to answer your question, I'm HR/PR ++ HER2-, plus early stage l grade l, so unless that changes during surgery, I have favorable statistics.

    I think any after treatment I do will depend on the outcome of the SNB, but I want to have my research done and be ready for decision making.  I heard my BS say to the onco the other day..."you'll like her...she's prepared".  I couldn't even imagine walking into a dr's office and not knowing anything about the disease, but two of my friends never even knew what stage of cancer they had.

    kathy044:  Thank you for the study.

    eve:  Keep the faith...if you feel comfortable with your decisions, then you know they are the right ones.  Keep us posted. 

  • ma111
    ma111 Member Posts: 167
    edited December 2011
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    evebarry and jazz, I am so gload that you guys are doing your research. That makes you feel so much better about the treatment you chose to go with.

    Good luck to you both!

  • jazz3000
    jazz3000 Member Posts: 109
    edited December 2011
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    Kaara - You do appear to have options. Prayers that all things come out in a favorable fashion for you and this is all behind you when you look back at 95 years old. I want you to be around so you can say "we told you so, but you just weren't listening....". LOL

    Hi ya ma - sure hoping you feel well today and life is good. Glad you're here sweetie. Having a ma around - no matter our age- sure makes a difference. Hugs and Loves. You have a great day.

    evebarry am calling around today, that is of course after my bowel decides it's finished with the laxative I needed. Hugs girlfriend and prayers that you get the info you need to bless your decisions.

    Kathy- read your info and wanted to thank you for taking the time to share with us. The more info the better. Sorry to hear you ever reached that 50/50 margin and you've been through so much. God Bless and Hugs

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited December 2011
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    Consider this. 

    http://www.news-medical.net/news/20111202/Researchers-identify-cancer-cell-mitochondria-as-Achilles-heel-of-tumor-growth.aspx 

    For those who are HER2 positive, I wonder if possibly adding metformin to trastuzumab alone might beat the socks off the "standard" for treatment (chemo plus trastuzumab).

  • jazz3000
    jazz3000 Member Posts: 109
    edited December 2011
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    evebarry - I got a consult with Robert Rowen next week by phone to discuss the alternatives to chemo. Am making a list and checking it twice. How did your consult go? Hope it was full of info.

  • Denise2730
    Denise2730 Member Posts: 320
    edited December 2011
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    I had a double MX this past August. One positive lymph node. Also refused chemotherapy, radiation and Femara. Hated my oncologist. Ditched him and found another one. I did agree to start taking the Femara but I'm not putting the chemo poison into my body when the doctors cannot guarantee the cancer will not return.

    Just having bloodwork the other day was traumatic. The nurse thought she had my vein (which are very hard to get). She stuck the needle in and when the vein moved she kept jabbing the needle in and twisting it trying to get it to draw blood. I finally yelled at her to try a different place and I will request not to have her again when I go for my next round of bloodwork in February. I wondered about the need for a port for 4 rounds of chemo but after this experience I fully understand.

    I also hate the whole big room with all the people receiving chemo. I hated it when my husband went through it and I refuse to feel like I'm just a number. I'm sure it's done that way because of profits. It's a lot easier for one nurse to watch 10 patients when they are all in one big room.

    I hate most doctors and little by little I am beginning to hate the whole medical establishment which seems to put profits over patients.

    There, I vented for today.

    Denise