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When to consider "quality of life" over treatment

TheFitts
Posts: 8
Joined: Aug 2012

I feel overwhelmed with everything we are hearing from the doctors regarding Bobbie's cancer. It's aggressive, it has spread, side affects of chemo are kidney damage, high possibility it will return in 1-2 years, plus all the regular downside of chemo and radiation treatment - tired, sick, trying to stay health and away from any person or thing that could give you germs, already pre-treatment being only 130 pounds and 5'10.

We are definitely going to give this a fight. But I am wondering is there a point where people feel the treatment is too much and they would enjoy what quality life they have left?

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Each of us have to weigh that question on our own I presume...

For me, I'm going kicking and screaming... I will fight with everything I have.

But that is easy to say when giving advice.

Thoughts, Prayers, Hopes, Dreams, and Miracles
John

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I have often posted that I believe that the caregiver suffers as much, if not more, than the patient. The caregiver needs to take some time away, even if it is just a few hours, from all the suffering.

Giving up is a most personal decision. I don't think anyone, patient or caregiver, will fault another for throwing in the towel. However, having said this I must add that I only hope it is the patient talking and not the narcotics. For all the relief from pain that they bring, narcotics have the side effect of making the patient not care.

I know I have had some very dark days. But right now, I'm between treatments and I am happy for at least some part of most days. The medications play havoc with our moods. I would pick a target date beyond the current round of treatment. I would focus on reaching that date. At that time, it would be appropriate to reconsider throwing in the towel. Rick.

CivilMatt's picture
CivilMatt
Posts: 3058
Joined: May 2012

TheFitts,

I would not throw in the towel until the doctors quit answering your calls. That being said, you sound overwhelmed right out of the gate. It will be rough, but it may not be terrible. I can just about guarantee the outcome without treatment and that is no quality of life. It’s tough, for a brief second when I was told I had cancer I did not know how bad or treatable it was and there was the thought of whether treatment mattered or not. Fortunately, my cancer was treatable and the world has to live with me for a bit longer.

Relax, slow down, take a breath and get your bearings, this will work out.

Best,

Matt

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

and sadly one that can only be answered by you.

With that said, here is my story:

This past Father's day I was sitting in church and I looked to my right and saw the faces of my wife and five children (ages 2 years to 13 years old) and I remember saying to myself..."if all I just went through had only given me one more day with these faces, it would have been worth it"

I was stage III base of tongue and like Matt, in the begining for a few days I did not know how treatable mine was ...and I made the decision if there was a chance, any, I would give it a shot. However, easy for me was the decision even more so when I found out mine was very treatable and the odds were much more in favor for me than my Dad and brother.

I lost my Dad 15 months ago to acute Leukemia and my only and oldest brother to a brain tumor (3 months before my Dad died)....dad was given 30-60 days and he lived 4 months and "for my mother" he said he would give it all he had to give her time to aborb what was happening. My brother was given a 4% chance (that's a four) to be around in five years, he said he would give it all he had. Both of them did. Niether of them had ever been sick before (other than the typcial stuff) and our family had no history of cancer.

Dad died at 73 years of age
My brother died at 49 years of age. I am now older than my oldest brother.

Whatever you as a couple decide it is not wrong. It is your choice. I hate that you even have to be in that position.

My prayer is for strength, wisdom and a healing miracle for you. No matter what you do, your online fellow warriors and caregivers are here for you.

Best,

Tim

fisrpotpe's picture
fisrpotpe
Posts: 1343
Joined: Aug 2010

when i was told i had cancer (almost 17 years ago) the goal then was to make a year from my doctors.

well my goal was then, never give in... no matter what. The best quality is life, dealing with the new normal after treatment is just a change. life is wonderful with my old... new normal.

john

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

others here have wondered about "quality of life" vs. treatment, and I've never understood the choice. can someone explain? how does wasting away from cancer without treatment lead to "quality of life"?

we're very sorry about Bobbie, and the toll it's having on you. But please don't give up. keep up the fight, until there is no more fight. giving up does not lead to 'quality of life'.

oh, and I'm 5'11" and dropped to 115 lbs. during treatment. 9 weeks after treatments, currently up to around 128. while I still resemble a walking skeleton, I will prevail.
god bless you and Bobbie.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

"I will prevail." Wonderful.

katenorwood
Posts: 1853
Joined: May 2012

hey there !
Having hope that life is good. And having a tremondous amount of positive support for you both will help. Also, I am a believer in talking with my spouse openingly and truthfully on how far I'll go. This is a very personsal decission, and one that should be made with a clear mind. I am also considering making a medical what is called in our state my "5 wishes" for end of life issues. I am in no way giving up....and this is not set in stone I could change it anytime I want ! But it is a very important thing for me to do as I DO NOT want my loved ones making harse decissions for me.
Now if that is done...and out of the way, I can continue my battle against this demon I still have in my body. And tell your wife to fight hard as advances are being made each and every day in research and treatments. Life is good, and we all have our good and bad days. Make them count ! Will be thinking of you both ! Katie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm sad you feel you have to make this choice. I personally feel like doing nothing would NOT lead to quality of life. I can tell you that treatment will be rough but doable. And just so you know, I'm 11 weeks out of treatment and when I started I was 5'3"" and 103lbs, I didn't have much to lose. Now I'm 87lbs! I did get a feeding tube (peg) which is why I didn't lose more. Most people lose weight, most of us have been given the PEG and most of us will gain the weight back. Even tho I am very under weight right now, I'm healing and feeling pretty darn good. The weight will come back it's just going to take time, that's what they tell me anyway.
It is completely your decision and everyone here will support whatever you decide as far as treatment goes but I hope you will consider that treatment is very doable as I said and I believe the fight is very worth it.
I pray you will find peace in your decision making.
Billie

hwt's picture
hwt
Posts: 1987
Joined: Jun 2012

I would be lying if I said there weren't a few really tough days when I questioned if I had made the right choice to have tx. When I finished and had my first scan with no evidence of disease I knew it was all worth it. I hope the same for you.

Noellesmom
Posts: 1312
Joined: Aug 2010

It sure sounds like somebody loaded you with all the bad "what ifs" and that makes it hard to see the probable positive moments that happen during the treatment: the relief when a test comes back with good results, the laughter over dealing with learning to pour liquid successfully into a PEG tube (although with my husband it was mainly water for irrigation - I made such a mess of it he took it over himself!), the personal, inside jokes you learn to make about consequential and inconsequential things...the quiet moments of reflection, the realization that an entire church is praying for your family...there are blessings along the way.

At 6'1", Jim started out about 175, dropped to 119 (although that was with minimal reaction to the Cisplatin - follow their advice about the nausea medication to the letter) and is now back up to about 155 two years post treatment. IT is the radiation that takes its toll no matter what you do. Jim had 37 radiation treatments.

I agree with the post that I'm not sure how this is a quality of life question: you have NO quality of life without treatment. Dying is a process and you have to remember that pain control is usually limited, no matter what they give you.

So, it seems to me you have a choice - you fight to live, either going with whatever is in the arsenal or you decide to move on, using medications available to transition to the next life.

Neither choice is easy: neither choice is wrong. There may come a time when the doctors tell you there are no further options.

Personally, Jim and I are all for buying time, if it comes to that, and then I have no doubt he will go out kicking and screaming be it next year or thirty years from now. He's just that kind of guy.

Am interested to know the type or cancer you are dealing with. The grim prognosis sounds like what is attached to Jim's cancer - hypopharyngeal.

luv4lacrosse's picture
luv4lacrosse
Posts: 1408
Joined: Jul 2010

I just found out Friday I am going to have a second tour of duty battling the beast. I am like Skiff, (John) I am going to fight until the death. Life is too precious to give up.

You are in my prayers.

Mike

josh r.
Posts: 205
Joined: Oct 2010

Mike,
I'll be praying for you to win your fight. I did when all looked bleek 21 years ago this November 22nd and it sure has been worth it. Josh r.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Hmm...In the past five years I lost both my Sister and her Husband to lung C, and a Cousin to H&N; and, I am a H&N/Nasopharyngeal who was put thru the most intense, though shorter in durantion and ultimately with less chemo, C&R tx out there.

First of all- "quality of life" is not an option with H&N if you refuse treatment. Yes, it is moreso with lung, as breathing, and pneumonia and it's symptoms, along with symptoms tacked-onto where the lung C has spread, are what the bad/end times bring. With H&N...it do get very ugly. THIS IS A SUBJECT SELDOM TALKED ABOUT, HERE, but I've long felt should be. You know how we warn people to stay away from Google images for H&N C? That's the kinda ugly that it gets, folks. And, that is why we go thru the tx without much of a 2nd-thought. So, what kinda quality of life are you hoping for? A couple weeks or months, and then a very trying and ugly death? I would advise you, and anyone, who is contemplating refusal of treatment to check-out Google- to see some of the places this H&N thing might take you.

I apologize if the above seems rather blunt, but this is C we are dealing with. Enough said.

kcass

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

You people are so special. Fighting your own personal C and being so encouraging. I am so proud that my husband and I know you. I never wanted to ever have to face this, but we are truly blessed to have you. I am in agreement with everyone. Fight like your life depends on it, because it does.

TheFitts
Posts: 8
Joined: Aug 2012

I am not one to take offense and appreciate bluntness and honesty. So thank you. Sugar coating is the last thing I want.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

side effects of chemo are NOT kidney damage, high possibility it will return in 1 to 2 years, etc. Side effects MAY include these things. Many of us avoid the worst of the lasting side effects.

Like many here, I had "heavy" chemo - juicy doses of nasty drugs up front as induction chemo before doing "gold standard" chemo radiation. More than one of the drugs I took have the ability to damage the kidneys - two and a half years after I finished chemo rads, my kidney function is great, vision no worse than it was, no evidence of heart issues, only very mild neuropathy, ability to eat most things, some dry mouth issues (that I can live with), some physical limitations (from surgery, not rads - but even these limitations continue to diminish nearly two years afer my last surgery).

I really strongly suggest, though, that you get advice from the pros on putting on weight. During treatment, I treated food as just another prescription from my docs - something I had to take whether I wanted to or not. I did this as long as I could, before succumbing (temporarily) to a liquid/tube diet, and even then, I made getting in calories a priority.

Many days, I'd tell myself "This is temporary. Measure this period of suffering with the rest of your life". Do you want to suffer a while, with the hope of improving? Or suffer less now, with the knowledge that you'll suffer much more sooner, rather than later?

Very glad to see you say you're definitely going to give this a fight. Game on!

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Pam, you are correct, it's not given that Chemo WILL give you all or any of the possible side effects, but that possibility is there. Many here have chemo induced kidney damage, many such as myself and you don't...or at least my GFR numbers along with the other blood related kidney numbers are good.

Buy, kidney damage is a very real possibility with Cisplatin, and platinum based chemo. One of the reasons that they flush your system as soon as you recieve it;

I presume you were just trying to drill that home also, that damage is not a given.

ACS on Cisplatin

Cisplatin can damage the kidneys. This risk is reduced by checking your kidney function before you get the drug, giving you extra fluids by vein, and asking you to drink extra fluids for a few days after the drug is given. This extra fluid helps to flush the medicine out of your system and protect your kidneys.

Wikipedia on Cisplatin

Nephrotoxicity (kidney damage) is a major concern. The dose is reduced when the patient's creatinine clearance (a measure of renal function) is reduced. Adequate hydration and diuresis is used to prevent renal damage. The nephrotoxicity of platinum-class drugs seems to be related to reactive oxygen species and in animal models can be ameliorated by free radical scavenging agents (e.g., amifostine). Nephrotoxicity is a dose-limiting side effect.

Interesting on the Amifostine reference though as I had platinum based chemo both Cisplatin and Carboplatin, and Amifostine injections.

JG

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

My doc did tell me something like Amifostine was first used to try to protect organs during chemical warfare, or something like that.

Skiffin16's picture
Skiffin16
Posts: 8099
Joined: Sep 2009

Myself and several others have had the Amifostine injections.... Each day just before radiation.

MyChemo MD ordered it to help relieve or minimalize the thick ropey phlegm, and maybe restore some salivary function.

In my case I can only endorse it... I never had the complications some here have had with the thick choking phlegm. I also have close to 95% of my saliva back as well.

Not sure if it was the Amifostine or not..., but.

Most people can't finish before having some side effect from the AMifostine.., for me that started around 32 out of 35. I started having really high fevers, or extreme chills.

Stopped at 33 and didn't get the last two...

They also left a big itchy welt for several days. They were injected into my stomach each day.

JG

TheFitts
Posts: 8
Joined: Aug 2012

Thanks for the comments on both sides. Cisplatin is one of the drugs. Also, new research (I do not know if it has been published yet) is that the kideny damage is more likely in african americans, which my brother is, which is why we were giving it extra weight. I do realize that not everyone is affected by side affects.

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

My husband has advanced metastatic disease. His will to live is incredibly strong and until he says it's time to stop treatment, I will stand by his side and leave no stone unturned. You never know what is around the corner. It could be months, it could be nine months, or who knows what we will find. We are looking at clinical trials all over the country at his doctor's recommendation. Meanwhile, to build strength, he is as active as possible and drinking smoothies that are over 900 calories since his peg tube was removed.

I believe it is up to the patient, but some days you wake up and have a lot of fight left in you. Maybe if there were never any better days, it would make a difference. I feel like it is my husband's decision and his life. I am in for the long haul and try to bring to the table as much hope as possible.

It is the hardest war ever but, maybe seeing just one battle (day) at a time can help get you both through.

Any side effects from chemo can be somewhat relieved with medication, so don't give up on asking the doctor's to keep trying different things if what he is taking now is not working.

Hang in there the best you can and at the end of the day, know that you did your very best.

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

My husband has advanced metastatic disease. His will to live is incredibly strong and until he says it's time to stop treatment, I will stand by his side and leave no stone unturned. You never know what is around the corner. It could be months, it could be nine months, or who knows what we will find. We are looking at clinical trials all over the country at his doctor's recommendation. Meanwhile, to build strength, he is as active as possible and drinking smoothies that are over 900 calories since his peg tube was removed.

I believe it is up to the patient, but some days you wake up and have a lot of fight left in you. Maybe if there were never any better days, it would make a difference. I feel like it is my husband's decision and his life. I am in for the long haul and try to bring to the table as much hope as possible.

It is the hardest war ever but, maybe seeing just one battle (day) at a time can help get you both through.

Any side effects from chemo can be somewhat relieved with medication, so don't give up on asking the doctor's to keep trying different things if what he is taking now is not working.

Hang in there the best you can and at the end of the day, know that you did your very best.

josh r.
Posts: 205
Joined: Oct 2010

Hi Fitts,
Whatever you choose our prayers are with you. As has been said all our situations are different so who can tell another brother or sister what to do. In July of 1991 I chose to fight and God willing on November 21st of this year I'll cellebrate 21 years of NED due to all the people in my "corner". I along with many others are in yours. God bless, Josh r.

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