To be treated or not to be treated

I am curious as to the number of people who may choose, for whatever reason, to not

be treated. I have not yet been "offered" any treatment plan--I am in my 16th year of w&w and I am 75 yrs old, and considering not having treatment. Of course, it is easy to think I won't take any treatment when I am feeling well, so maybe I am fooling myself.

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  • I think it's a very valid question in your circumstances cllady particularly as you wouldn't appear to need treatment at present and indeed ever. Let's hope that's the case.

    I do think age considerations are very important though. Would you have even been thinking this when you were diagnosed at 59 particularly if you'd had unpleasant symptoms? Would you really refuse treatment now if you had a life threatening complication?

    I have to be honest. If I'm fortunate enough to make it to 75 with my CLL and still well, I'd be thinking long and hard as to whether I'd be wanting to go into my 80's enduring toxic chemo treatments. I'd certainly be keener on less toxic treatments.

    We don't hear from CLL'ers of all ages who make the decision simply not to treat at all and perhaps that's the group that your post refers to. I'd always choose LIFE but at some stage in my much later years, I'd choose quality first.

    Just keep doing as you're doing...it sounds good to me!

    Newdawn

  • Thank you for the reply, Newdawn. No, I would not have thought about not having treatment earlier in my journey. I was younger and was most grateful for the prognosis of the possibility of living a full lifetime without treatment.

    As I have aged and read more, thanks to the internet, about the treatments developed and their promise of some life-extension but possible loss of quality of life, I have begun to weigh the two against each other and most often do not feel the length of time that is possible to extend life a few months or even a few years is worth the accompanied loss of quality of life and the financial burden it could impose.

    My situation is that I have no children, but do have niece and nephew to whom I am close. I live alone and independently. Financially, I am doing okay as things stand now.

    The cost of the new medicines needed to be taken on a daily basis after the initial regimen is outside my ability to pay. And, none of the assistance I have perused would really help to keep me out of debt, should I choose to be treated with some of the newer, or in some cases, should I be allowed to be treated with some of the newer medicines and then have to go on maintenance doses.

    All that being said, it is impossible to make a decision before I am presented with a choice. I think I am working to prepare myself and my family for what may be my choice.

  • I admire your forethought and planning. It shows a lack of selfishness and a reasoned view to quality of life.

    Knowing you've had 16 treatment free years and continue to do so inspires and encourages people like me so thank you for sharing your story.

    Wishing you a very long and treatment free life!

    Newdawn

  • Thank you. I am interested in others thinking regarding treatment, but I also know that

    all are in various stages of life as well as various stages of CLL and it is not something some will think about at all.

    It is true that a part of life is dying--we just can't imagine life without our bodily and cognitive presence.

  • Hang in there CLLady01.

    Jeff

  • Why are people today so afraid to 'sound to religious' ? Since I have asked God into my life,I have enjoyed such peace and joy. I have no fear of death nor this disease...It's truly AMAZING !

  • I appreciate your sharing the peace and joy and lack of fear of disease and death. Some thoughts off the top of my head follow:

    As much as humans have in common, humans have differences, and especially different life experiences. The experience of CLL in each of us is different--some aggressive, some not so much.

    The experience of growing up in families is different for us each. What we have been taught, what we have learned is unique to each of us. And, what we have found to be true and a guiding force in our lives is different--and can change with experience and knowledge.

    Of course I can't speak for everyone, but the spiritual path people are on is a very, deep, personal path. How each of us deals with the creative force of life is not something I see as a judgement call for anyone else.

    How you talk about your experience of God is your right--at least in countries that allow you that freedom.

    Thank you for sharing.

  • Your verses remind me of the following:

    What is to give light must endure burning. Victor Frankl

  • I have edited my previous post. I did not wish this to become more than a wish of good will.

    Jeff

  • I'm early into W&W & will consider every year I can delay treatment a boon.

    What I will do if & when I might need treatment really depends on a number of factors.

    Currently I'm close to being 68 & I think many would say I look a very fit & healthy 68 (little do they know), but should my health deteriorate to any great extent, such that my quality of life was drastically affected, then how I might approach treatment would also be affected. I do not want to drift/meander on with life, so I become a burden on my family & it might well restrict what treatment I'm prepared to consider.

    When I was first diagnosed with this condition I offered to become guinea pig for any trials & was told that wasn't yet an option, because I was no where near treatment, but if & when I do I'll probably make the same offer, to see whether I can help with finding a solution to this condition.

    All easier said than done I know & I hope to delay the need for treatment for many years, but when it's required I hope I'm strong enough to do as I've outlined.

    Mind you if I was much younger, my approach would be very different & I would be doing everything & anything to continue living for as long as possible.

  • Yes, Alexmcg48, I agree wholeheartedly with your statement:

    "I do not want to drift/meander on with life, so I become a burden on my family & it might well restrict what treatment I'm prepared to consider."

    And, while I will consider a trial (if there is one that I fit at the time I need treatment) that situation will require some study on my part. It isn't easy to think about what care I might need as I age with no treatment, let alone aging and CHOOSING to undergo treatment that might require extra care-taking.

    We shall know when we know and not until, I guess. May all who have

    and may in the future join this conversation, fair well in the days ahead.

  • Thanks, until the time comes it's hard to say I suppose.

  • I am sure that you will make the right decision if the need arises however after 17 years on W&W fingers crossed that you will have no need for treatment. Take care and continue to enjoy your life to the full. ♡

  • Hi cllady01,

    I believe I understand your view and concern. I am 68 and have been treated 3X, and I help my siblings with monitoring my 90 year old mother who lives independently with several health issues.

    If you have similar symptoms to mine, when your CLL progresses to needing treatment, you will likely be bothered by fatigue and numerous infections and may "ask" for treatment. In my case the non-chemo treatments (Rituxan, Zydelig, Imbruvica) restored my strength, stamina and reduced the infections so that I could enjoy life fully. I am able to work at my consulting business, donate my time to 2 non profits, and travel internationally when I want. (Staying home watching TV as my mother does is not a desirable option for me).

    If you are in the USA and on Medicare, the costs of treatment should be manageable, through basic medicare A & B plus a Supplement/Medigap policy and Part D drug plan with copay assistance from one of the charitable organizations funded by the Pharma companies.

    So when the time comes and treatment is imminent, you may want to choose to be active and involved or passive and shut in.

    Len

  • I immediately changed my diet to an all natural no sugar fruit and vegetable diet drinking green tea every morning and evening with a spoonful of turmeric mixed in. It was working, but not well enough. On my second visit to a second doctor I was told that the FDA had just approved imbruvica for treatment without chemotherapy. In just three weeks my white blood count dropped to 175,000 and on the next visit I had gained 9 Lb and my blood count was 74,000 I continue my diet, and the two together are working very well.

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