courage to say no to chemo

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2011

    Blossom, ((((((((((hugs)))))))))).  No one should ever have to make the decision you are facing, but far too many do. 

    If the first course of chemo that you did a few months ago didn't manage to keep the disease at bay, why do the doctors think there will be a different outcome with the next round that they are proposing?

    Most of us who have chosen not to do chemo were being offered it as a kind of insurance against recurrence.  You might get a different perspective from those on the palliative care threads, who are in a very different situation, that is more like your own from what you are posting. 

    Choosing which symptoms to treat when, and how to treat them is taking control of the situation, not giving up.  Some women have found that they actually get more time as well as more quality of life when they choose how to live the time they have left to them. 

  • Yazmin
    Yazmin Member Posts: 840
    edited May 2011

    Hi, Blossom,

    I just read  your posts, and your story, to me, is reminiscent of Carole O'Toole's journey through cancer.

    Carole O'Tool is the author of this beautiful (and OH! so inspiring book): "Healing Outside the Margins." The book was a great success when she published it. It's available in many places (probably including on EBAY).

    http://www.amazon.com/Healing-Outside-Margins-Survivors-Integrative/dp/0895261936

    Carole received a diagnosis of Inflammatory Breast Cancer about 18 years ago, if I am not mistaken. She lives in the Washington, DC area here; she is a cancer coach (a GREAT one, for that matter), working in close cooperation with the Smithfarm Center of Healing and the Arts (http://www.smithfarm.com).

    I went and met Carole early in my cancer journey (January 2006) and I must say: she made a whale of a difference for me.

    Carole REJECTED the prognosis that she received at the time of her diagnosis (again, that was about 18 years ago). Her prognosis was extremely bleak.

    She fought back with both "conventional" and "alternative" medicine...

    ....And she won. May I suggest (just suggest) that you see if you might be able to get her book "Healing Outside the Margins" and, perhaps, contact her as I did in 2006, since you are also dealing with Inflammatory Breast Cancer. 

    Having said all that, I agree: nobody has a right to try and make treatment decisions for you, or to talk you into treatments that you don't want. Good luck, Blossom. Hang on! 

  • blossom
    blossom Member Posts: 25
    edited May 2011

    hello,im just writing to thank everyone for their messages,because noone knows til your in the situation urself,ive decided im definatley not goin to have anymore chemo as there are no guarentees and after having intense chemo for the best part of a year i dont think i could cope mentally or physically,if only my family were as understanding as the people that i have spoke to on here,it would make a world of difference,thank you all xx

    ps yazmin i will deffo try and track down a copy of caroles book,thanks xx

  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    worldwatcher,

    Glad to see that you still visit this thread. Enjoy the summer.

  • worldwatcher
    worldwatcher Member Posts: 205
    edited May 2011

    Teka

    Thanks for the encouragement. I visit the threads daily but just don't post often. I hope things are going well for you.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited May 2011

    Learning genuinely better solutions usually requires risk, trial and error. As a Stage 1 high-risk patient, I did chemotherapy and very much wish I had not. As time went by I felt it was important to me personally to take risks in this matter. As noted in my history, I have stayed NED. It isn't "luck", and it did take courage.

    Here is some news as of this week to consider. It is information I did not have when I opted out of conventional treatment after having gone through chemotherapy and 1 3/4 years of tamoxifen.

    http://www.redorbit.com/news/health/2050703/certain_breast_cancer_patients_may_benefit_from_combined_her2_targeted/index.html?source=r_health# 

    AlaskaAngel

  • asschercut
    asschercut Member Posts: 159
    edited June 2011

    Sad news down my end...

    We just buried my uncle last week. He was the youngest of my father's brothers...and only 48. Several months ago he was holidaying in Europe with his wife and 4 children, and fell and broke a bone. He was diagnosed with stage II multiple myeloma. Unfortunately he panicked form the get go...and was a wreck during treatment...insisting that he was going to die...that the chemo was killing him. He never once embraced treatment with strength, and a positive outlook. He died from septic shock from chemotherapy...just two months into treatment. My cousins lost an amazing, humble, giving and loving father. I'm so sad for them.

    On the other hand...I have mentioned a dear family friend who was diagnosed with stage IV multiple myeloma and was given 6 months to live with chemo. He declined chemo, much to the doctors' dismay. He felt the chemo would kill him before the cancer...and he was right. He embraced his alternative protocol with confidence, strength and intense research. This was thirteen years ago...his joints get a little sore but he's still with us. Perhaps if my uncle had done the same...instead of falling for the doctors scare tactics he may be with us. Just sooo sad.

    My mother and aunty (my father's sister) decided to have a breast reduction 5 years ago...and my aunty never woke up from anaesthesia. Tragic...it's still shocking to think about.

    I have a dreadful reaction to anaesthetic...and am more fearful of conventional treatment than the cancer I once had. I had 22 out of my 33 rads, and declined tamoxifen. I personally prefer the alt route...it suits me. Radiotherapy has caused some problems with my nose. I had 6-8 months of nose bleeds and my team of specialists are keeping an eye on things. Nose cancer runs in my family...and I am constantly on top of my protocol to make sure I do not have a reoccurrence.

    No doubt conventional treatment saves many lives...but it also takes many lives.

    Conventional treatment is not for everyone.

    Take care...x

    Victoria

  • Merilee
    Merilee Member Posts: 3,047
    edited May 2011

    My two cents

    2/12 years ago I refused chemo. Was scared to death of it. And went diligently natural. Did everything I could find, and ate right the whole thing with passion. 11 months later I had a recurrence and chose a milder chemo called CMF (6treatments)  Then another 11 months later another recurrence. I am currently on TCX4. I wish I had just done the TC from the start and gotten it over with. Now instead of 4 treatments of chemo I will end up with 10 total.

    Not saying this will happen to you , just showing you a real life possibility. Cancer cells can hide and be triggered in your body at any time. I am living proof of that.

    It is the AC treatment that many wemon are having heart trouble with so talk to your Onc team about each type that is out there, then make a decision.

  • asschercut
    asschercut Member Posts: 159
    edited May 2011

    Hey Merilee,

    I've been following your journey with interest and concern.

    I never needed chemo and I don't need any more treatments. I'm happy to say I'm doing fine. If I ever do have a reoccurrence...I will weigh everything up then.

    Hope all goes well with you...x

    Victoria
  • newbcny
    newbcny Member Posts: 24
    edited June 2016

    I am thinking of turning down chemo too...it's more the emotional piece of saying no than anything else...good luck...your decision is your

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2016

    last post on this thread, prior to yours was 2011. Good topic, never the less

  • joyfh
    joyfh Member Posts: 5
    edited July 2016

    hi joy. I'm like you who opted for no chemo. I did have modified radical mastectomy with multiple lymph node excisions. And yes friends & medical professionals urge me to do it. But i can't imagine myself going thru that ordeal. Anyway there are many alternatives being presented now. I have started on herbal treatments: guayabano leaves tea, turmeric, ginger tea, lemon water, mostly veggie diet fruits too. Minimal meat. There are new technologies which are being offered like hyperthermia or cryosomething etc here in the philippines and china. I might try those if i have a recurrence. Meanwhile i will enjoy what i like in my life: travel gardening cooking reading etc etc which i might not enjoy with chemotheraphy. I am 71 years old & wanting to live to 100! Well , i'll be grateful to have a full active fun life for 10-15 years perhaps. Keeping my fingers crossed! We all die one way or another, is what i say! might as well enjoy life despite cancer!

  • joyfh
    joyfh Member Posts: 5
    edited July 2016

    hi joy. I'm like you who opted for no chemo. I did have modified radical mastectomy with multiple lymph node excisions. And yes friends & medical professionals urge me to do it. But i can't imagine myself going thru that ordeal. Anyway there are many alternatives being presented now. I have started on herbal treatments: guayabano leaves tea, turmeric, ginger tea, lemon water, mostly veggie diet fruits too. Minimal meat. There are new technologies which are being offered like hyperthermia or cryosomething etc here in the philippines and china. I might try those if i have a recurrence. Meanwhile i will enjoy what i like in my life: travel gardening cooking reading etc etc which i might not enjoy with chemotheraphy. I am 71 years old & wanting to live to 100! Well , i'll be grateful to have a full active fun life for 10-15 years perhaps. Keeping my fingers crossed! We all die one way or another, is what i say! might as well enjoy life despite cancer!

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