Armed Polite Society
April 29, 2017, 11:16:24 PM *
Welcome, Guest. Please login or register.

Login with username, password and session length
News:
 
   Home   Help Search Login Register  
Poll
Question: No Chemo or Maintenance Chemo  (Voting closed: April 11, 2011, 10:58:13 PM)
No Chemo - 4 (15.4%)
Maintenance Chemo - 22 (84.6%)
Total Voters: 26

Pages: [1] 2
  Print  
Author Topic: What would you do ?  (Read 5397 times)
Amy Schumer
I'm a leaf on the wind.
Administrator
Senior Member
*****
Posts: 20,946


I spent a week in that town one night....


« on: March 28, 2011, 10:58:13 PM »

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, which recently claimed Gerraldine 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.

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.   undecided  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.
Logged

Some days even my lucky rocketship underpants won't help.


Bring me my Broadsword and a clear understanding.
Get up to the roundhouse on the cliff-top standing.
Take women and children and bed them down.
Bless with a hard heart those that stand with me.
Bless the women and children who firm our hands.
Put our backs to the north wind.
Hold fast by the river.
Sweet memories to drive us on for the motherland.
vaskidmark
National Anthem Snob
friends
Senior Member
***
Posts: 12,800


WTF?


« Reply #1 on: March 28, 2011, 11:42:09 PM »

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.
Logged

If cowardly and dishonorable men sometimes shoot unarmed men with army pistols or guns, the evil must be prevented by the penitentiary and gallows, and not by a general deprivation of a constitutional privilege.

Hey you kids!! Get off my lawn!!!

They keep making this eternal vigilance thing harder and harder.  Protecting the 2nd amendment is like playing PACMAN - there's no pause button so you can go to the bathroom.
KD5NRH
friends
Senior Member
***
Posts: 9,562


I'm too sexy for you people.


« Reply #2 on: March 29, 2011, 12:25:28 AM »

It's the choice I have to make.   undecided  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.
Logged
Amy Schumer
I'm a leaf on the wind.
Administrator
Senior Member
*****
Posts: 20,946


I spent a week in that town one night....


« Reply #3 on: March 29, 2011, 12:50:25 AM »

What's the prognosis once you have the stem cell transplant?

So - moar information, please.

The quick answer is:
Quote
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.  undecided  Hence my desire to buy a used warship and go pirate hunting.  AR15 Firing Evil

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  Tongue), 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. sad   That could kill me also.
Logged

Some days even my lucky rocketship underpants won't help.


Bring me my Broadsword and a clear understanding.
Get up to the roundhouse on the cliff-top standing.
Take women and children and bed them down.
Bless with a hard heart those that stand with me.
Bless the women and children who firm our hands.
Put our backs to the north wind.
Hold fast by the river.
Sweet memories to drive us on for the motherland.
220_SWIFT
friend
Member
***
Posts: 228



« Reply #4 on: March 29, 2011, 04:51:00 AM »

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.
Logged
Chris
friend
Senior Member
***
Posts: 4,579



« Reply #5 on: March 29, 2011, 05:37:15 AM »

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.
Logged

No, I'm not mtnbkr.  Wink

a.k.a. "our resident Legal Smeagol."...thanks BryanP
"Anybody can give legal advice - but only licensed attorneys can sell it."...vaskidmark
MillCreek
friend
Senior Member
***
Posts: 11,560


APS Risk Manager


« Reply #6 on: March 29, 2011, 06:22:08 AM »

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. 
Logged

_____________
Regards,
MillCreek
Snohomish County, WA  USA

I bear a passing resemblance to Squidward
Fly320s
friend
Senior Member
***
Posts: 8,990


If you can't get happy, get drunk.


« Reply #7 on: March 29, 2011, 06:32:03 AM »

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?
Logged
Fitz
Face-melter
friend
Senior Member
***
Posts: 6,073


Floyd Rose is my homeboy


WWW
« Reply #8 on: March 29, 2011, 06:46:10 AM »

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.
Logged

Fitz

---------------
I have reached a conclusion regarding every member of this forum.
I no longer respect any of you. I hope the following offends you as much as this thread has offended me:
You are all awful people. I mean this *expletive deleted*ing seriously.

-MicroBalrog
bluestarlizzard
Queen of the Cislords
friend
Senior Member
***
Posts: 12,977


Oh please, nobody died last time...


WWW
« Reply #9 on: March 29, 2011, 07:31:59 AM »

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?
Logged

"Okay, um, I'm lost. Uh, I'm angry, and I'm armed, so if you two have something that you need to work out --" -Malcolm Reynolds
lee n. field
friend
Senior Member
***
Posts: 9,808


tinpot megalomaniac, Paulbot, hardware goon


« Reply #10 on: March 29, 2011, 08:53:20 AM »

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, 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.)
« Last Edit: March 29, 2011, 02:30:38 PM by lee n. field » Logged

In thy presence is fulness of joy.
At thy right hand pleasures for evermore.
Amy Schumer
I'm a leaf on the wind.
Administrator
Senior Member
*****
Posts: 20,946


I spent a week in that town one night....


« Reply #11 on: March 29, 2011, 08:53:40 AM »

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.
« Last Edit: March 29, 2011, 08:57:33 AM by scout26 » Logged

Some days even my lucky rocketship underpants won't help.


Bring me my Broadsword and a clear understanding.
Get up to the roundhouse on the cliff-top standing.
Take women and children and bed them down.
Bless with a hard heart those that stand with me.
Bless the women and children who firm our hands.
Put our backs to the north wind.
Hold fast by the river.
Sweet memories to drive us on for the motherland.
bluestarlizzard
Queen of the Cislords
friend
Senior Member
***
Posts: 12,977


Oh please, nobody died last time...


WWW
« Reply #12 on: March 29, 2011, 08:57:20 AM »

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.   Wink

Drive doctor insane with questions and try to find a comprimise. Yep, thats me.
Logged

"Okay, um, I'm lost. Uh, I'm angry, and I'm armed, so if you two have something that you need to work out --" -Malcolm Reynolds
MillCreek
friend
Senior Member
***
Posts: 11,560


APS Risk Manager


« Reply #13 on: March 29, 2011, 08:59:01 AM »

My reply is what I would do and why.
Logged

_____________
Regards,
MillCreek
Snohomish County, WA  USA

I bear a passing resemblance to Squidward
AJ Dual
friends
Senior Member
***
Posts: 15,227


Shoe Ballistics Inc.


« Reply #14 on: March 29, 2011, 09:20:27 AM »

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.  Evil

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?"
Logged

I promise not to duck.
Grandpa Shooter
friend
Senior Member
***
Posts: 1,607


« Reply #15 on: March 29, 2011, 10:26:13 AM »

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.
Logged
Ned Hamford
friend
Senior Member
***
Posts: 2,803



« Reply #16 on: March 29, 2011, 10:32:22 AM »

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.
Logged

Improbus a nullo flectitur obsequio.
Ryan in Maine
friend
Senior Member
***
Posts: 598



« Reply #17 on: March 29, 2011, 10:52:21 AM »

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.
« Last Edit: March 29, 2011, 10:55:38 AM by Ryan in Maine » Logged
Bogie
friend
Senior Member
***
Posts: 5,208


Used to be living in Cat Whiz - next, who knows?


WWW
« Reply #18 on: March 29, 2011, 10:55:55 AM »

Unless, of course, you start crapping white... That's a completely different story.
Logged

Get Your Second Amendment, Political and Fun Stickers Here!
www.stickertramp.com
HeroHog
The Brass Mangler
friends
Senior Member
***
Posts: 3,105


HeroHog


WWW
« Reply #19 on: March 29, 2011, 11:02:00 AM »

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.
Logged

"If what I post can be taken sarcastically, go with that as it is probably how it was meant."

Speedy: LOCAL League Sec/Treas/CIO
AKA: Hero Hog, Dr. Speed and "That fat, old, balding, Grey-bearded gimpy guy"
NRA Life Member, LSA, USN-DAV

"Stay safe..." - Paul "Skidmark" Henick, RIP
41magsnub
friend
Senior Member
***
Posts: 7,437


Don't make me assume my ultimate form!


« Reply #20 on: March 29, 2011, 11:25:42 AM »

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.
« Last Edit: March 29, 2011, 11:46:49 AM by 41magsnub » Logged
SADShooter
friend
Senior Member
***
Posts: 5,243


« Reply #21 on: March 29, 2011, 11:35:46 AM »

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.
Logged

"Ah, is there any wine so sweet and intoxicating as the tears of a hippie?"-Tamara, View From the Porch
Zardozimo Oprah Bannedalas
APS Shex Shymbol
friend
Senior Member
***
Posts: 4,366


All I got is a fistful of shekels


« Reply #22 on: March 29, 2011, 11:38:13 AM »

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.
Logged
RevDisk
Administrator
Senior Member
*****
Posts: 12,076


WWW
« Reply #23 on: March 29, 2011, 12:22:19 PM »


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.
Logged

"Rev, your picture is in my King James Bible, where Paul talks about "inventors of evil."  Yes, I know you'll take that as a compliment."  - Fistful, possibly highest compliment I've ever received.
Pharmacology
friends
Senior Member
***
Posts: 1,744



« Reply #24 on: March 29, 2011, 12:41:08 PM »

Right now, as I am, I would fight the disease for every second, every minute of life.
Logged
Pages: [1] 2
  Print  
 
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.21 | SMF © 2015, Simple Machines Valid XHTML 1.0! Valid CSS!