Armed Polite Society
Main Forums => The Roundtable => Topic started by: Scout26 on March 29, 2011, 02:58:13 AM
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Okay here's the deal. This is the choice I face. I just wonder what you guys, people who's opinion I respect, would do in my situation. What exactly is my situation you ask ?
I have Multiple Myeloma (http://en.wikipedia.org/wiki/Multiple_myeloma), which recently claimed Gerraldine Ferraro (http://en.wikipedia.org/wiki/Geraldine_Ferraro), there is no cure, only life prolonging treatment.
I just finished a year of chemo, Velcade and Cytoxan, and at this point the doctors tell me they've "knocked it down". I'm not "in remission" as there is now such thing with multiple myeloma. So I will NOT need a bone marrow/stem cell transplant now. I will eventually. The disease will come back and I'll have to go on full blown chemo, until that doesn't work. Then it's a Autologous HSCT (http://en.wikipedia.org/wiki/Stem_cell_transplant#Autologous).
The choice that I (and in this poll, you) face is this.
No Chemo: Your Quality of Life will improve as chemo won't be kicking your ass every week for month, you'll still be tired and weak from the disease. You'll get monthly blood tests and the disease will (generally) return quicker than if you had gone on maintenance chemo, and you will have to go on full blown chemo sooner.
Maintenance Chemo: That's four weeks on, four weeks off. Quality of Life won't be a nice as No Chemo as every other month will be the suck. The upside is that you'll generally keep the disease "down" longer. Meaning it will be "later" before you have to go on full blown chemo again.
That's it. Either way you'll end up on full blown chemo, until that doesn't work then it's a stem cell transplant.
It's the choice I have to make. =| I have to make my decision 11 April. I'll let you know what I've decided then. In the meantime, I'd like to hear what you would do and why.
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What's the prognosis once you have the stem cell transplant?
Yeah, life in general is incurably fatal, but there are varying notions on how to approach that if A or B is significantly more crappy than C as the inevitable. For example, right now my tipping point is being maintained on a ventilator (which would most likely involve aditional machinery and tubes). As time passes I most likely will face more and more deterioration and system failures that could mean lots of unpleasantness even before I wind up on a ventilator. As that possibility becomes more of a probability/reality I expect my tipping point will move. But having a fair understanding of where I am now and what I can reasoably expect in the near- and long-term future helps me decide how I'm going to approach my future.
As regards cancer - my outlook is significantly colored because family members on both sides have had and suffered with various cancers. The ones they dealt with were very quickly dibilitating and painful. Those cancers scare me. If I knew, as best one can, that the cancer I had was not going to end in unbearable pain while robbing me of all functioning I would approach it differently than how several relatives did, which is the current extent of my knowledge about dealing with cancer.
So - moar information, please.
stay safe.
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It's the choice I have to make. =| I have to make my decision 11 April. I'll let you know what I've decided then. In the meantime, I'd like to hear what you would do and why.
Personally, I'd go do all those scary things I've always wanted to do. The only thing keeping me from doing a lot of them is the thought that I should have a lot more years to go bike riding, play with my kids, etc. Take those things away, and I at least want to have fun with what I've got left.
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What's the prognosis once you have the stem cell transplant?
So - moar information, please.
The quick answer is:
The International Staging System can help to predict survival, with a median survival of 62 months for stage 1 disease, 45 months for stage 2 disease, and 29 months for stage 3 disease.[7]
I been symptomatic for three+ years now. =| Hence my desire to buy a used warship and go pirate hunting. [ar15] >:D
The stem cell transplant is simply a last-ditch treatment, not a cure. As the doctor said, there's no warranty, but anywhere from 0-10 years, with 3-5 being average, and 10-20% chance of me not even making it out of the hospital. In other words, after they destroy all the marrow in my bones with high doses of chemotherapy and total body irradiation for 3-5 weeks (maybe I should volunteer for Fukushima to save money :P), they then inject the stem cells they took from me in Dec 2009 and stored. If those do not graft into my, now empty, marrow, they clean me out once more with the chemo and radiation, then inject me with the second batch of stem cells. Should those not take, they will keep me comfortable for as long as they can.
It's not the Multiple Myeloma that gets you, it just beats you down and compromises your immune system, so you die from pneumonia or the like. There is the anemia, bone pain, peripheral neuropathy (numbness of the hands and feet, I already got that), and it also affects other organs, in my case the kidneys. My Nephrologist says I'm down to 35% kidney function, so I'm well on my way to dialysis. =( That could kill me also.
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I selected maintenance. If I were in your shoes, I would want to spend every possible minute with my children that I could. And if going through the maitenance chemo gave me an extra hour to be with them, I would say it was more than worth while.
But, ultimately it is your decision. You are the one that has to live with that decision. You are also the only one who knows the personal hell you have been through to get to this point. I wish you nothing but the best in your fight against this terrible beast.
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I had typed out a big explaination about my mother and watching her fight pancreatic cancer (she passed a year ago Thursday) with my advice on which choice to make, and I just deleted it. I can't tell you what to do, or what I would do. I can only say to search your soul, make your choice, and believe that it is the right choice, no matter what you decide. There's no right and wrong here. What's most important is your comfort with the direction you choose to go. Anyone who says otherwise hasn't watched a loved one go through this.
And, if you find that boat, I'll take vacation time and sail with you. I'm a retired Army grunt, so I can't help with the sailing, but I'll load mags for you.
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I vote for maintenance. Bearing in mind that I work in healthcare, especially related to oncology. The reason why I voted is it buys you time. Time during which additional treatments can be discovered and implemented. I have a good friend with the same diagnosis. He recently underwent stem cell here in Seattle, probably one of the best places in the world to have a bone marrow/stem cell transplant. He is currently doing well with a favorable prognosis for the next few years.
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Scout, I voted maintenance chemo, but that is based on my age and family commitments. I would like to have more, lower quality years if that means I get to spend more time with my wife and/or get her financially prepared for my death. If I'm just burning through her "grieving in luxury" money, then that changes my opinion.
What is your age? Do you have a spouse or children that want/need you around for a few more years? Will that time help you help them or will you be spending their inheritence on your chemo? Do you have things you want to do, other than pirate hunting? Can you do those or will you just sit in a chair all day watching The Price is Right?
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I voted for maintenance.
Reading your thread at work I started getting teary eyed.
I'll keep you in my prayers.
If it was me, I'd want to extend as long as possible my time with my family, regardless of the cost. I can't bear the thought of leaving my daughter behind. Plus, there's always chances for new methods to be developed that could help you. At this point i feel like cures for a lot of diseases are just a shisper away.
Sometimes I really hate the world. Good guys get saddled with horrible disease, and shitbags live long, douchey lives.
Best of luck to you, buddy.
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Its a crap decsision all around.
I am weirdly thankful that inner oculer melenomas don't respond to chemo. Dad never had to deal with this. The only choice he had to make was lose the eye or leave it (and die), the rest was all just banking on if it was too late.
He won't have this choice ever. If it comes back, he's done.
Maintance is the obvious choice, I guess. Like Millcreek said, you never know when the whitecoats will figure out somethimg new. Time is always a good thing.
However, if there is some crazy awsome thing that you never got to do, and you can't do it on the maintence, go do it. Life is for living, not sitting.
And if there is something like that, is it possible to take a little time off and then go back to the chemo later?
Is there some reason you can't go off the maintence for a bit, have some fun and then go back?
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I vote for maintenance. Bearing in mind that I work in healthcare, especially related to oncology. The reason why I voted is it buys you time. Time during which additional treatments can be discovered and implemented. I have a good friend with the same diagnosis. He recently underwent stem cell here in Seattle, probably one of the best places in the world to have a bone marrow/stem cell transplant. He is currently doing well with a favorable prognosis for the next few years.
A tentative second to that.
Reading over Wikipedia on multiple myeloma, it reminds me in some aspects of myelofibrosis (http://en.wikipedia.org/wiki/Myelofibrosis), which my Mom died of at the beginning of 2008. Reading over that article again, I note the line "The only known cure is allogeneic stem cell transplantation, but this approach involves significant risks.", which I don't recall being in that article in late 2007, when I last looked at it. In '07, no cure for Mom's disease, just keep pumping blood in and wait for some cascade of bodily failure to catch up. (Normal prognosis is 5 years. She lasted 10, and lived pretty well up until the last 5 or 6 months.)
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Thank you all for your responses, thoughts and prayers. Bit this exercise is NOT about me and what I should do, but about what you would do and the choice you would make and why?
I guess I'm wanting to see the problem through fresh and/or different eyes.
I truly respect your opinions and I'm craving your insight as I struggle with this decision.
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Thank you all for your responses, thoughts and prayers. Bit this exercise is NOT about me and what I should do, but about what you would do and the choice you would make and why?
I guess I'm wanting to see the problem through fresh and/or different eyes.
I truly respect your opinions and I craving your insight as I struggle with this decision.
oh, my answer is what I would do too. ;)
Drive doctor insane with questions and try to find a comprimise. Yep, thats me.
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My reply is what I would do and why.
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I would do the maintenance. For the afore mentioned reasons of family, gaining time to enjoy myself etc.
I also like the idea of punishing/killing the cells that aren't behaving. >:D
No cancer, but the closest I came was spending a few weeks on intravenous antibiotics in the hospital when I was 19. I kept wishing the sepsis/peritonitis bacteria was conscious, so I could mock it. "What's that? Your cell walls are melting? Ah... That's SCIENCE FOR YOU BITCHES! DIE DIE DIE! HAHAHAHA! How's that single-cell strategy working for you?"
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I have no idea of your circumstances, other than what you have posted and I have taken the time to read. I admire your courage and the humor with which you communicate.
My choice in your case would be to keep at it until I was certain that my life had no more value to me or my loved ones, and then I would end it. I absolutely will not accept a life in which I can't do the things I want to do and feel like crap most of the time. It upsets my wife that I feel that way, but I have made the choice to live my life my way.
It is your life. Do with it what you feel you must.
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Maintenance. Even with greatly impaired function there is great pleasure to be had from life if you keep your head screwed on right.
Best of luck and considered yourself added to the prayers.
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I vote for maintenance. Bearing in mind that I work in healthcare, especially related to oncology. The reason why I voted is it buys you time. Time during which additional treatments can be discovered and implemented. I have a good friend with the same diagnosis. He recently underwent stem cell here in Seattle, probably one of the best places in the world to have a bone marrow/stem cell transplant. He is currently doing well with a favorable prognosis for the next few years.
^ This. Treatments are progressing and will be updated by the time you're ready to revisit the decision.
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Unless, of course, you start crapping white... That's a completely different story.
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It's a call only YOU can make. My dad said that if he had it all to do over he would have not done the radiation or Chemo and enjoyed what he could and make an "early exit" rather than miserably drag it out. Others have had wondrous success with the same treatment. That makes it that much harder to decide. God how I wish I had the answer for you/anyone facing these kind of decisions!
May God bless you and help you through your ordeal and help you make the choices that are best for YOU.
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I don't know what I would do or what you should do and as such I won't vote. I can tell you what my Dad was considering in a similar situation with cancer before kidney issues (probably due to the chemo) forced things to go another direction.
He had bladder cancer that had spread. He went through a big round of chemo that I'm told the side effects of which were relatively minor compared to other forms of chemo. He was still quite miserable.
He finished the chemo with clean scans afterwards and went for several months feeling decent except for the growing back pain that everyone thought was related to his surgery to remove his bladder and all the nodes they could get at. He got out of the house, did some hiking, some fishing, and generally enjoyed what he could of life.
Then, on a follow up PET scan they found more nodes. The next course of chemo they were going to try was not going to be the "light duty" stuff he had previously but a much more intense and miserable version.
Dad, being Dad, researched the heck out of things and decided the odds were very much not in his favor that the new course of chemo was going to work. On top of that was the ever increasing back pain that nobody was coming up with a resolution or diagnosis for. He was getting very tired of the massive doses pain killers for that pain and their various side effects along with chronic anemia.
He decided that he was not going to do the next round of chemo but instead to focus on enjoying what time he had left as much as possible. He did not tell me this and forbade Mom from telling me in a misguided effort to protect me. I would have supported the decision anyway.
Shortly after that, there finally was a diagnosis on the back pain which was a metastasized tumor in his spine. The good news was that with targeted radiation they could relieve that tumor and at least partially restore quality of life. If that had worked, he could have cut back on the pain pills and enjoyed life a lot more. He was going to go forward with that treatment.
Then, mere days after making that decision his kidneys shut down. He did consider options at that point, he wanted to extend the time he had left as long as he was not a burden on others and his quality of life was at least somewhat there. He tried dialysis which did filter his blood but could not remove the massive edema the renal failure was causing (his BP would crash each time they tried to draw off fluid). The good part of the dialysis was it cleared his head enough that he could make the decision to stop trying so that Mom and I did not have to make that decision for him not very long after that.
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I've had to readjust to the prospect of being alone over the last year. I will (probably) outlive my parents, I'm an only child, probably won't have children of my own, and don't have any other close family. I do have a few close friends who would miss me, but my footprint on the world is small. I've watched my mother go through surgery and chemo very bravely, far more so than I think I would despite my wrestling with some chronic pain issues. I'd have to go through chemo myself to truly comprehend the dilemma.
One thing I remember from some of your posts was the humor you brought to the staff and other patients you interacted with. You may not realize it, but I'm quite sure that was an inspiring example for many of them, to say nothing of how much your presence here is appreciated. For myself, the main mark I leave in the world is the people I interact with. I'm a very small cog in a very big machine, but I'd like to think the longer I stick around the more opportunities I have to make people smile, or think, or make their lives a little better in some other small way. A vanity, perhaps, but I suspect that's why I'm here.
Maintenance.
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I would pick the no-chemo route for myself. Of course, I am a fatalistic fellow with no particular reasons to stick around any longer than I have to. Probably why I get along so well with Russians.
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If I had a particular reason to life, I'd do maintenance. Hope for a cure or improvement in treatments, spend time with kids/family/dog, etc.
If I was older, content with my life, and had my affairs in order... I wouldn't. I'd do insanely dangerous and entertaining things that would likely kill me before the cancer would.
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Right now, as I am, I would fight the disease for every second, every minute of life.
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I hope you will forgive me Scout, but I have just wept for you. Having had to come to terms with cancer myself, I discovered it to be a vastly lonely experience. I so empathize with your reaching out.
Since I have generally lived my life doing every thing the freaking hard way; buying high and selling low; coming to acknowledge that if a thing needs doing it follows that it will have to be done over 3 or 4 times; discovering that if a thing has a 80-20 chance of not failing, it will inevitably fail and in so doing I have become a walking corollary to Murphy's Law in and of myself. Understanding these and other things finally, and oddly has given me a sense of richness and peace in my life...that and finally understanding the reality of my faith, that indeed, the Word became flesh, dwelt among us and provided for us all that which was foretold. CS Lewis once wrote that when a person finally came to grips with the fact that we are eternal beings, much of what troubles us in the flesh tends to fade a bit.
I would fight the good fight, Scout. That dark creature has been knocked down, so now step down hard and grind your foot upon it. You are young and you have much to offer us, your children, and your fellow fighters.
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I vote for maintenance. Bearing in mind that I work in healthcare, especially related to oncology. The reason why I voted is it buys you time. Time during which additional treatments can be discovered and implemented.
MillCreek nailed it, IMO. You never know what new treatments will become available in the near future.
You will be in our thoughts.
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Right now, as I am, I would fight the disease for every second, every minute of life.
ditto
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My choice might be dictated by the fact that I'm a senior citizen, but I have had my living will in place and unchanged for a long time. I would opt for whatever is going to least detract from my quality of life while I'm alive. I've known for a long, long time that life is fatal and nobody gets out alive. Even in Vietnam, I wasn't concerned about being killed, I worried only about being wounded and permanently disabled. (Thanks be to God, that didn't happen.)
It may be something in my family's genes. A cousin who was a year older than I had a tumor near the base of her skull. They did surgery and couldn't get all of it out. The docs wanted her to go on chemotherapy. She opted not to, precisely because of the quality of life issues. She knew the cancer was going to kill her, so the only question was whether to go out on her terms, or to go out on the cancer's terms. She chose to go out on her terms. I was living back east and she was in Arizona at the time. I visited and spent some time with her about six months before she died. She struck me as being totally serene and at peace with her decision. I think (no, I am certain) that it was much MUCH more difficult for her parents (and her son) to watch her fade away than it was for her to pass over.
Whatever you decide, be at peace with your decision and with yourself.
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My choice might be dictated by the fact that I'm a senior citizen, but I have had my living will in place and unchanged for a long time. I would opt for whatever is going to least detract from my quality of life while I'm alive. I've known for a long, long time that life is fatal and nobody gets out alive. Even in Vietnam, I wasn't concerned about being killed, I worried only about being wounded and permanently disabled. (Thanks be to God, that didn't happen.)
It may be something in my family's genes. A cousin who was a year older than I had a tumor near the base of her skull. They did surgery and couldn't get all of it out. The docs wanted her to go on chemotherapy. She opted not to, precisely because of the quality of life issues. She knew the cancer was going to kill her, so the only question was whether to go out on her terms, or to go out on the cancer's terms. She chose to go out on her terms. I was living back east and she was in Arizona at the time. I visited and spent some time with her about six months before she died. She struck me as being totally serene and at peace with her decision. I think (no, I am certain) that it was much MUCH more difficult for her parents (and her son) to watch her fade away than it was for her to pass over.
Whatever you decide, be at peace with your decision and with yourself.
[/b]
My thoughts, only I did become permanently disabled. I have fought a hell of a fight, and will continue as long as it makes sense.
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I'd go with the maintenance chemo, having things suck a bit more but postponing going on full chemo.
I sure wish you didn't have to make this decision.
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I'd probably go the maintenance route just to keep my family happy. The technology does improve all the time though, and it would be a shame not to be there if/when a really good permanent treatment is found.
Grampster said , "Having had to come to terms with cancer myself, I discovered it to be a vastly lonely experience."
That really is true I think...especially if you work in the modern Corporate world, where any discussion of health is generally taboo, and cancer in particular. Even if people could talk about it, they generally don't feel comfortable with the subject. Broken leg...sure. Heart by-pass...sure. The C word ...nope.
Hang in there. Do what's best for you, and for those who care about you and/or need you.
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I have been silently watching (well, more like reading) your situation for awhile now. Believe it or not, I too have shed some number of tears over this. There have been countless times that I have wanted to tell you so, but never knew how to say it. I know cancer isnt the only problem you are facing right now. I can't say things will get better, I don't know. What I can say is that you ARE an inspiration to people. I know, I'm one of them. For that reason, and those laid out by Millcreek, I say fight it with all your soul. But then again my philosophy in life is to never give up. Good luck with your decison, that is a tough one to say the least.
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i vote maintenance then i would follow grampster's plan. i would draw a line in the sand quality of life wise and when it was crossed get all in touch with my japanese side. i would hope i had a friend i could rely on to help in the event i was unable to do what was needed myself. i've got a mean streak would be inclined to try to make it look like an accident to screw the insurance company on the double indemnity. i have lil love for insurance companies. i think one thing i would do is make a video to my kids telling em how much i loved them and what they meant to me and give it to a friend to give my kids when they were old enough
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There's might be a different middle path that the on-a-month-off-a-month thing. Is there a less chemo protocol for MM that will keep the disease down for a year or two with little side effects?
The best dog we ever had got lymphoma or leukemia at about 6 years old. She was at death's door, and we put her on Prednisone -- that's it, just Prednisone, even though we knew it wouldn't cure it like more aggressive chemo might. We didn't want to torture her with an aggressive protocol. She made an instantaneous remarkable recovery that lasted for about 2 months. Then she crashed and was gone in 2 days. It was a good 2 months. If we had done nothing, she would've lingered in pain for a week or so until we put her down.
Not to draw too many parallel with a dog, has your oncologist said anything about, say, a month of chemo then switch to Prednisone- or Predisolone-only maintenance?
My FIL had small-cell lung cancer. He was on an experimental treatment that (if I recall correctly) involved drugs normally given for breast cancer. Kept him alive for almost 2 years, and he was only in pain and really sick for the last month. For lung cancer, that's damn good.
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Monday 2:00pm is my appointment with my Oncologist. This issue has never been far from my thoughts, no matter what I've been doing.
This last cycle of chemo has really kicked my butt. It's taken longer to bounce back. I've been sleeping for ~24 hours (minus the time to feed and let the dog out, he stands by the back door and barks =)) after that I'm still dragging my butt around the house for the next day or so. This week chemo was on Wednesday. I slept through Thursday evening, ate a little and went back to bed until this morning.
One thing that I have always considered, but not mentioned here, is that my father has buried two of my brothers. His eldest, Jim, was killed in a motorcycle accident in the early 80's. His second eldest, Jerry, two years ago from complications of Agent Orange. My dad is 86 years old, he could not take hearing Taps and being handed the folded flag a third time.
I can't do that to him. I've known for quite a while that I have to outlive him, and he's healthier then a horse.
I also have my son. I want to see him make it into Boy Scouts and make Eagle Scout.
So no matter how hard and how bad it is for me, I have to be there for them.
That I do know.
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You are without a doubt, the most honorable man I am privileged to know of. I salute you Sir.
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I voted maintenance. I figure it's probably the best balance of being able to live life and dealing with teh suck. Plus, you always decide to suspend the maintenance. Probably easier to do that than try to start it after a few months.
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I'm new here, but this still touched me. I would do whatever you can to extend your days with your family. Every day is a gift, live it the best you can. Even though it was tough at the end, I wish I had even one more day with those I've lost in my family. And, being one with a long term degenerative illness (MS) (I know it's not the same), one thing being diagnosed changed in me, was I now value every day I can spend with friends, family, and every new thing I can go do...I used to SAY live life with no regrets, but now I try to live that. I'll keep you in my prayers, hope for miracles (even small ones). Every extra day you will spend with your family is a miracle on it's own, and that is worth any pain or effort.
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Many have expressed same or similar to SADShooter,
One thing I remember from some of your posts was the humor you brought to the staff and other patients you interacted with. You may not realize it, but I'm quite sure that was an inspiring example for many of them, to say nothing of how much your presence here is appreciated.
but I like the way he put it. It fits the impression of you that I have.
I won't even touch upon what I would do. In my mind, it has to be your choice, without influence. Having said that, I hope to see you on here for a good, long time.
DD
World needs MORE bass players, not less!
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One thing that I have always considered, but not mentioned here, is that my father has buried two of my brothers. His eldest, Jim, was killed in a motorcycle accident in the early 80's. His second eldest, Jerry, two years ago from complications of Agent Orange. My dad is 86 years old, he could not take hearing Taps and being handed the folded flag a third time.
I can't do that to him. I've known for quite a while that I have to outlive him, and he's healthier then a horse.
I also have my son. I want to see him make it into Boy Scouts and make Eagle Scout.
So no matter how hard and how bad it is for me, I have to be there for them.
That I do know.
Then you have made your choice, so go kick the ever loving crap out of this cancer. Kick its ass out of you and enjoy your life, every raindrop, every cloud, every ray of sunshine, every bullet fired downrange, and know that you have hundreds of people supporting you. God bless.
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You are without a doubt, the most honorable man I am privileged to know of. I salute you Sir.
This.