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serious medical question for youse guyz

Scott ButnerScott Butner Senior MemberPosts: 3,918 Senior Member
any of you have any (first hand, or close friend/relative) experience with leukemia? Especially the chronic form known as CLL?

I'm, ummm....asking for a friend.
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Replies

  • George KGeorge K Super Moderator Posts: 11,649 Senior Member
    (Your friend should) See an oncologist focused on that specific variation ASAP. Outcomes vary greatly depending of many factors, but it is not something to delay seeking treatment for.
    The GOP big tent now is the size of a pup tent, its floor splattered with guano.
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    George K wrote: »
    (Your friend should) See an oncologist focused on that specific variation ASAP. Outcomes vary greatly depending of many factors, but it is not something to delay seeking treatment for.

    my friend just got back from his second visit to such an oncologist (actually a hematologist associated with an oncology clinic) who reassured him that while he definitely has CLL, it's treatable and manageable.

    it IS odd, however, to anyone who has experienced a lot of cancer in the family and seen the devastation it causes, to hear a doctor say "you've got cancer" and in the next breath, say "but it's no big deal" -- it's hard to reconcile those two statements even though the data seem to support his prognosis.
  • JulietJuliet Posts: 49,774 Senior Member
    in the next breath, say "but it's no big deal" -- it's hard to reconcile those two statements even though the data seem to support his prognosis.

    This is good.
  • Shawn C.Shawn C. Senior Member Posts: 7,027 Senior Member
    Man. Take care, my friend. Keep us updated.
  • jbillyjbilly Senior Member Posts: 6,012 Senior Member
    Yeah, best wishes to your friend.
  • George KGeorge K Super Moderator Posts: 11,649 Senior Member
    Glad to hear the good news.
    The GOP big tent now is the size of a pup tent, its floor splattered with guano.
  • fishingcomicfishingcomic Senior Member Posts: 26,541 Senior Member
    Sending good vibes to the universe for you Scott, yes given your family history, I would be scared. You have an amazing group of friends (not us the real ones) and great family, I am sure they will see you through this. We will be here to help, but you know, it will be here.
    'I've spoken of the Shining City all my political life. …In my mind it was a tall, proud city built on rocks stronger than oceans, windswept, God-blessed, and teeming with people of all kinds living in harmony and peace; a city with free ports that hummed with commerce and creativity. And if there had to be city walls, the walls had doors and the doors were open to anyone with the will and the heart to get here. That's how I saw it, and see it still.'" Ronald Reagan
  • BuffcoBuffco Senior Member Posts: 10,586 Senior Member
    Be well.

    Sent from my XT1585 using Tapatalk
  • creekguycreekguy Senior Member Posts: 4,359 Senior Member
    Best wishes for your friend. If he is anything like you he deserves the best of health!
  • ricinusricinus Senior Member Posts: 6,214 Senior Member
    Tell your friend to take real good care of himself..

    Mike
    My new goal in life is to become an Alter Kaker...
  • SilverCreekSilverCreek Senior Member Posts: 131 Senior Member
    my friend just got back from his second visit to such an oncologist (actually a hematologist associated with an oncology clinic) who reassured him that while he definitely has CLL, it's treatable and manageable.

    it IS odd, however, to anyone who has experienced a lot of cancer in the family and seen the devastation it causes, to hear a doctor say "you've got cancer" and in the next breath, say "but it's no big deal" -- it's hard to reconcile those two statements even though the data seem to support his prognosis.

    Scott,

    CLL (Chronic Lymphocytic Leukemia) is the best form of leukemia to have. Survival is measured in years. Younger pts survive longer.

    Go to the article below and look at the first survival graph. Half of all patients survive 10+ years. 80% survive 5 years.

    http://www.haematologica.org/content/99/1/140
  • Auntie EmAuntie Em Senior Member Posts: 159 Senior Member
    A good hematologist/oncologist can treat CLL and keep it a manageable "chronic illness". I have a rare blood cancer that is treatable with daily chemo. It's now been almost 6 years since diagnosis (was originally given 2-2 1/2 years). My onc/hem told me that if you want to live a long life, get a chronic illness and treat it. You're seen on a regular basis, by the onc/hem. You have regular blood work done. You get the latest treatments available. If anyone can do it, Scott ... it's you.
    Lord ... give me patience, and give it to me RIGHT NOW!!!!!
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    I appreciate the encouragement, folks. I remain optimistic about my individual case, but try to make sure I'm aware of the statistics -- for a variety of reasons I have choices to make that affect others

    For example: if I am going to be substantially more tired than I am now, is it morally and ethically responsible to book weddings a year or more from now? It's not as morbid a question as you might think -- most of my weddings are marathon gigs that last 12-15 hours and often involve being on my feet and very active for almost the entire time -- usually in summer time heat. Last year I had already encountered some of the fatigue that goes with the disease and there were a few weddings that literally set me back for a couple of days following, though that was as much from heat exhaustion as anything else. And a good wedding photographer is often booked 1-2 years in advance. So if there's even a modest chance that I won't be able to be physically well enough to shoot a full wedding a year from now, is it a responsible thing to take on the assignment?

    It's the kind of question that keeps me up at night, because who wants to leave a client "hanging"?

    Another is the question of whether I begin drawing SSI at the earliest possible age (62 - 4 years from now) and risk a reduced benefit starting earlier in what statistically will be a shortened life span, or do I put the odds on living a long life and wait til I'm 65 so that my benefits are higher? All of these are choices informed at least a little bit by the statistics.

    And it becomes more complicated when you weigh in the fact that treatment protocols keep improving all the time, with a steady increase in survival rates.

    Sometimes being an analytical guy is really a curse -- much of my technical career was spent generating and analyzing scenarios in which a technology might "go wrong" and figuring out the consequences. It's hard to NOT apply that same mindset to your own case after doing it as a routine part of your work life for nearly 30 years. lol.
  • fishingcomicfishingcomic Senior Member Posts: 26,541 Senior Member
    I believe taking SSI will have no impact on your SS benefits. In fact you could draw them now. It is a disability benefit.
    'I've spoken of the Shining City all my political life. …In my mind it was a tall, proud city built on rocks stronger than oceans, windswept, God-blessed, and teeming with people of all kinds living in harmony and peace; a city with free ports that hummed with commerce and creativity. And if there had to be city walls, the walls had doors and the doors were open to anyone with the will and the heart to get here. That's how I saw it, and see it still.'" Ronald Reagan
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    I believe taking SSI will have no impact on your SS benefits. In fact you could draw them now. It is a disability benefit.

    I thought that was SSDI? In any event, I meant just regular old social security retirement benefits. I am not sure that, as a retired self-employed person, I'd be eligible for disability even if I thought I was qualified from a medical standpoint (I'm not -- I'm still quite able to work, just certain tasks that are challenging due to their duration and intensity).

    Rather, I was weighing the idea of "social security retirement" at the earliest threshold age, rather than the later age -- it makes a substantial difference in monthly payments, but if the odds are against me being there to draw the benefit (according to the article cited above, median life expectancy of someone approx. my age who finds they have this disease is about 12 years -- and I'm in a slightly higher risk group since I have a slightly advanced stage of the cancer). So it's worth pondering, but of course no way to answer it since the statistics tell me nothing about my specific situation -- or any other individual situation.
  • BuffcoBuffco Senior Member Posts: 10,586 Senior Member
    I think you may be over analyzing it Scott, but that's the difference between you and I. I really hadn't considered the long term ramifications like that before reading your post.

    Then again, we might get hit by a truck tomorrow. We just don't know, so I'd go ahead and book. You'll know if you aren't going to be able to shoot and can possibly help your clients transition to another photographer. Just my thinking.

    Either way, you have my prayers. Keep us updated on the progress.

    Sent from my XT1585 using Tapatalk
  • creekguycreekguy Senior Member Posts: 4,359 Senior Member
    How about finding an intern to help you who could take over the gigs in the worst case? An intern would have much to learn from you. You know, some jobs are not so great as you get older.
    I started SS at 63, so I didn't have to sell my investment stock to live while I was unemployed. Stock that was doing well at the time and figured to out earn the SS increased payments at 67. Alas, it has not earned enough to balance it out, but the SS $ are in the bank. Crap shoot.
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    Buffco wrote: »
    I think you may be over analyzing it Scott, but that's the difference between you and I. I really hadn't considered the long term ramifications like that before reading your post.

    Then again, we might get hit by a truck tomorrow

    well, exactly.

    but then my analyst mind kicks in and says: "well, what ARE the odds of getting hit by a truck?" and because I'm lazy, I pick the handiest available statistic, which is some old data (2002) from the National Safety Council. This tells me the chances that I'll be killed by a car or truck while out walking are about 1 in 47,000. Assuming the odds remain roughly the same as time goes on, the chances that I might die from a pedestrian accident of any sort in the next 5 years are simply 5 times that number, or one in about 9,000.

    If one looks at Figure 1 of the cited paper above, my odds of dying within the next 5 years from this cancer are about 20% -- or 1 in 5.

    So, considerably different risks.

    Again, it doesn't mean I am taking a fatalistic attitude towards this whole thing, but I've never been one for the sort of blind optimism that ignores the data and assumes the best -- I think it's possible to have an optimistic outlook and still be cognizant of the situation. In fact, I think it helps -- it certainly motivated me to push for a CT scan, which my doctor thought was premature -- and that scan indicated that the cancer had become symptomatic, which will probably alter how I'm treated medically. So being realistic about the data worked to my advantage and gives me BETTER reason to be optimistic (harkening back to Auntie Em's comment about "...if you want to live a long life, get a chronic illness and treat it")

    And honestly, being faced with the prospect that there's a non-trivial chance that you might have 5-7 good years left instead of the 15-20 you assumed.....DOES alter your priorities and choices. I know people say "always live your life like today was your last day" but that's like telling a runner to always run every race like it's a sprint, and then telling them to run a 5K
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    creekguy wrote: »
    How about finding an intern to help you who could take over the gigs in the worst case? An intern would have much to learn from you.

    I actually am training one now, a close family friend who has been helping me with weddings for a while
  • fishingcomicfishingcomic Senior Member Posts: 26,541 Senior Member
    I thought that was SSDI? In any event, I meant just regular old social security retirement benefits. I am not sure that, as a retired self-employed person, I'd be eligible for disability even if I thought I was qualified from a medical standpoint (I'm not -- I'm still quite able to work, just certain tasks that are challenging due to their duration and intensity).

    Rather, I was weighing the idea of "social security retirement" at the earliest threshold age, rather than the later age -- it makes a substantial difference in monthly payments, but if the odds are against me being there to draw the benefit (according to the article cited above, median life expectancy of someone approx. my age who finds they have this disease is about 12 years -- and I'm in a slightly higher risk group since I have a slightly advanced stage of the cancer). So it's worth pondering, but of course no way to answer it since the statistics tell me nothing about my specific situation -- or any other individual situation.

    The idea of you being around less than 12 years is a tough pill to swallow and I am not your family. This has got to have been hard on them.
    'I've spoken of the Shining City all my political life. …In my mind it was a tall, proud city built on rocks stronger than oceans, windswept, God-blessed, and teeming with people of all kinds living in harmony and peace; a city with free ports that hummed with commerce and creativity. And if there had to be city walls, the walls had doors and the doors were open to anyone with the will and the heart to get here. That's how I saw it, and see it still.'" Ronald Reagan
  • Auntie EmAuntie Em Senior Member Posts: 159 Senior Member
    The terrific fatigue that came with this type of blood cancer was excruciating. I can tell you, that once treatment started, the fatigue was lessened considerably. That's not to say there is no fatigue ... there is ... but you learn to moderate everything, and deal with it. There are days I feel fortunate to have made it through! It does get better, mostly I suppose, because we "catch on" to the disease, and what it's doing. The hardest thing for me was telling my family. I had to deal with some pretty scary things in my own mind ... like my own mortality ... before trying to explain everything to my family. Continue to do what you love to do. It extends life! Find someone to shadow you, and take up some of the more general things with your weddings, and you do the critical. Build a base with your onc/hem and tell him/her when things/meds are going well, and when they're not. Be the squeaky wheel! If you don't like something tell him! And seeings medicine is a "practice" and not an "exact science" don't EVER let anyone tell you a life expectancy. NOT EVER! And never quit. You may have cancer ... but, cancer doesn't have you! Remember that.
    Lord ... give me patience, and give it to me RIGHT NOW!!!!!
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    The idea of you being around less than 12 years is a tough pill to swallow and I am not your family. This has got to have been hard on them.

    they're doing OK with it. I mean, my wife and I have our moments where it kind of sinks in, but we've dealt with a lot of **** over the past 38 years together and we always find a way to cope. We will deal with this, too.

    We are doing the responsible things (updating wills, talking about consequences and priorities, etc) but we are also just doing our lives the way we always have. I suspect that after the initial shock wears off, it'll be back to our usual until/unless more symptoms start to appear.
  • ricinusricinus Senior Member Posts: 6,214 Senior Member
    Auntie Em wrote: »
    And seeings medicine is a "practice" and not an "exact science" don't EVER let anyone tell you a life expectancy. NOT EVER! And never quit. You may have cancer ... but, cancer doesn't have you! Remember that.

    This, big time^^^

    Mike
    My new goal in life is to become an Alter Kaker...
  • fishingcomicfishingcomic Senior Member Posts: 26,541 Senior Member
    they're doing OK with it. I mean, my wife and I have our moments where it kind of sinks in, but we've dealt with a lot of **** over the past 38 years together and we always find a way to cope. We will deal with this, too.

    We are doing the responsible things (updating wills, talking about consequences and priorities, etc) but we are also just doing our lives the way we always have. I suspect that after the initial shock wears off, it'll be back to our usual until/unless more symptoms start to appear.

    I guess at some point you are going to have to tell her what you actually paid for your fishing gear.
    'I've spoken of the Shining City all my political life. …In my mind it was a tall, proud city built on rocks stronger than oceans, windswept, God-blessed, and teeming with people of all kinds living in harmony and peace; a city with free ports that hummed with commerce and creativity. And if there had to be city walls, the walls had doors and the doors were open to anyone with the will and the heart to get here. That's how I saw it, and see it still.'" Ronald Reagan
  • JulietJuliet Posts: 49,774 Senior Member
    I suspect that after the initial shock wears off, it'll be back to our usual.

    So, we're not going talk about the new meth lab? :)
  • ricinusricinus Senior Member Posts: 6,214 Senior Member
    I guess at some point you are going to have to tell her what you actually paid for your fishing gear.

    Camera gear would be way worse..

    Mike
    My new goal in life is to become an Alter Kaker...
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    I guess at some point you are going to have to tell her what you actually paid for your fishing gear.

    lol I suppose, but one of the secrets to our marriage has always been making almost all financial decisions jointly -- we've never had the idea of "her money" and "my money" -- it's always been all "our money" -- so typically any purchase over $50 is discussed ahead of time. There have been exceptions, but they are rare. So I doubt she'd be surprised, even with the camera gear (where the dollar figures are much worse lol).
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    Steven wrote: »
    So, we're not going talk about the new meth lab? :)

    it'll be an amazing meth lab. Only the best meth will be made there. And huge -- absolutely yuuuuge!
  • Scott ButnerScott Butner Senior Member Posts: 3,918 Senior Member
    Auntie Em wrote: »
    If you don't like something tell him! And seeings medicine is a "practice" and not an "exact science" don't EVER let anyone tell you a life expectancy. NOT EVER! And never quit. You may have cancer ... but, cancer doesn't have you! Remember that.

    I can agree with the being the squeaky wheel part. And given that my business is pretty much failing ANYWAY because I lack certain business skills and instincts, this simply provides some motivation to make the "fish or cut bait" decision sooner, perhaps scaling back to doing just landscape work professionally, and getting a part time job back at the Lab (it would be nice to reclaim my weekends!)

    however, as a science guy and a quantitative guy, I am too interested in the rest to ignore it. I'm not about to be held captive to it, but to ignore statistics entirely seems kind of silly.
  • JulietJuliet Posts: 49,774 Senior Member
    it'll be an amazing meth lab. Only the best meth will be made there. And huge -- absolutely yuuuuge!

    Psuedo or Methylamine?

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